MJ's Memories

A Few Much Needed Updates

2011-10-15T14:37:00.000-07:00

So it's been FOREVER since I've blogged. Not that I haven't wanted to, just that there's been so much going on that I've not really known how to include it in this blog. I've always considered this blog MJ's, so to write about anything else just felt out of place.

So here's whats been going on since I last updated about me. We miscarried in late January/beginning of February. It was the miscarriage that wouldn't end, and I had to have a D&C. It was horrible. Painful, both emotionally and physically. We gave it the mandatory two cycles until we started trying again. (Although I will admit, we tried, just without any fertility medicine help.) Our first cycle back, we did IUI again. We found out that indeed we were pregnant, the IUI worked, on Friday the 13th of May. I laughed. I couldn't believe that after all we had been through, our first cycle back we conceived again. Two weeks later was our big ultrasound (the same ultrasound that last time there was no heartbeat). I expected to see more of the same, but this time it was different. There was one beautiful heartbeat on the screen. Everything was just as it should be. A few weeks later I stopped taking the progesterone that the last time, kept my body from miscarrying. I waited for the bleeding to start, but it never did. The next doctor appointment a few weeks later, I waited for us not to be able to hear a heartbeat on the doppler (we didn't have an ultrasound scheduled). We heard it. A few weeks later, at our ultrasound appointment I waited for them to tell us that this baby would have CDH, just like MJ. They didn't. This baby is perfectly healthy in every way possible. Oh yeah, and this baby is a GIRL.

Today I am 26 weeks pregnant and everything seems to be going just as planned. I spent SO many weeks waiting for the other shoe to drop and for something to go wrong. It hasn't and I am just now beginning to believe that I will have a baby girl in my arms come January 2012. In three weeks we'll schedule my c-section, which I am guessing will be around January 13, 2012. It will be a Friday, Friday the 13th, which I oddly find comforting thinking that this baby will be born on Friday the 13th.

So because I have always viewed this blog as MJ's, I created a new blog, a family blog. I'll still update this one from time to time, because I will always miss him. I always long for him, I always hope and pray that somehow this is a bad dream and my son didn't die. I'll never move on from his death, but I can move forward, and I guess that is what this new blog is about. Moving forward and embracing life instead of waiting for the other shoe to drop all the time. So if you'd like, please come join me on the new adventure of having a sweet little girl come into our lives in January here.

Two Years Ago Today

2011-08-29T05:56:00.000-07:00

Our precious son Michael Joseph Skaggs flew to Heaven. We hope and prayed that our fears would not come true, but they did. I have never actually wrote everything that happened that day, and so I am going to now. I apologize that it is so long, but I want to remember everything from those last hours with my son. Here it goes . . .

It all started on my birthday, August 28 2009. We woke up that day after a few rough days with MJ, and were hoping for a much better day. After all, it was my birthday! What better present could I get then a good day with my sons. We called the hospital and they said that MJ was doing great, he had a really good night, and the goal for the day was to turn down his oxygen. He was one 98-99% oxygen, and he really needed to start making a turn and breathing more on his own. Since he was doing okay, Willie decided to go to work, at that point we were preparing for a year long stay in the NICU with MJ, and so Willie was trying to conserve his days off of work. Will had his month check up at the doctor that morning, and so I took him in late morning. After our appointment I stopped by my work to have some birthday treats, and the plan was to relax a little in the afternoon before Willie got off work and we would go see MJ. At noon I called the hospital again, and he was doing even better! I was so elated, MJ was giving me the best birthday present ever. His oxygen had been turned down to the mid 80s, and they thought they would be able to turn it down more in the afternoon. The nurse actually said, "We can't turn it down fast enough, he is doing so great!"

After a quiet afternoon, we left for the hospital. We walked up to his room filled with hope, our son was having a great day in the NICU, and it was my birthday. We never had a clue what we were about to walk into. After we scrubbed in, the entered his room to find seven to eight doctors crowded around MJ. We didn't have a clue what was going on, and waited in the wings of the room as the doctors tried to figure out what was wrong. He was have a very bad bout with pulmonary hypertension, and had a ton of pressure in his chest. His heart beat was erratic at best, and it seemed as though his little body was shutting down. We were only able to get a few peaks at MJ while the doctors were trying to find the best solution. Once we were able to get a clear look at him, we both knew. It's a moment I will never forget, a moment that I knew my son was going to die. He had enough, he couldn't fight anymore. It was something that came over me that I will never be able to fully describe, almost like someone was telling me he was done, and just couldn't fight anymore. I had to leave the room to gather myself, and went to go call my mom and sister to tell them to come to the hospital.

I went to the parent break room to use the phone. We weren't allowed to have cell phones in the NICU, and so I had left my phone in the car. My sister lived an hour from the hospital, and my mom was in for the weekend, and was spending the night with her. I struggled to remember my mom's cell phone, and so I called my dad in Chicago, hoping that he would be home. He was home, and started crying and told him that MJ was not doing very well. I asked for my mom's cell phone number, and my dad asked how bad it was. I never forget my response, "Daddy, he looks like he is dying." My dad started crying, and then I called my mom. All I had to say was that MJ was not doing very well, and my said, "Okay, we're on our way, give us an hour."

The next hour or so, Willie and I struggled for composure. We had been hit with a brick, and were praying that MJ would pull through and survive. Our nurse arranged for a room for us to sleep in a parent room that night in the NICU. They didn't want us leaving the hospital for fear he would die while we were gone. We wouldn't have left anyway, we knew that MJ needed us. The doctors discussed our options, and said that for night his goal was to remain stable. His oxygen was back at 100% support, and he was oxygenating (the amount of oxygen his blood was getting) around 70%. His goal was to be at least 92% oxygen.

After we got settled in our room Willie ran to the hospital cafeteria to get us some dinner. It was the last time we would eat there, after we had basically lived there for 35 days. The food tasted bland and was cold.

After awhile my mom and sister got there, and we all struggled to grasp what was happening. His little body was turning into a color mixed with gray and green. Everything was shutting down, and the doctors were doing all they could do to keep him alive. My mom told me that my godmother and her son were on their way to the hospital, too. She was in town visiting him for the weekend, as he goes to school at the University of Kansas. After awhile they got there. It was such an amazing feeling to be able to introduce my son to only the seventh and eighth people to meet him other then the amazing doctors and nurses who took care of him on a daily basis. So many of our family live out of town, and so they could not meet him. We told everyone to wait until he was more stable, or able to come home before coming out to visit. We all took turns visiting MJ for a few hours. Only two people could be at his bedside at a time.

Around midnight that night everyone left. My mom and sister had plans to come back first thing in the morning, and we were going to try and get a good night of sleep. We went and said one last goodnight to MJ, thanking God for another day with our son. I was so thankful that he had made it through my birthday. I didn't want to remember that on my birthday my son died. (Although I will always remember it as the day before my son died.) We were physically and emotionally exhausted. We both layed down and fell asleep. We didn't have a change of clothes, toothbrush, or anything else with us for that matter. We simply slept on a bed in the clothes we had on.

I woke up the next morning about 7 am to feed Will. We were not allowed to see MJ until 8 am because the doctors were doing rounds. At 8 am, I left Willie and Will to see how MJ was doing. I walked in to find our favorite nurse, who I thank God that she was our nurse that day. We could never have gotten through the day without her. I walked over to MJ and kissed him good morning. Megan walked over and I asked her how he was doing. She had asked what time I had last been in to see him. I told her around midnight or so and she told me that he was doing worse. His was now oxygenating around 60%, and his arms and legs were turning blue due to the lack of oxygen. I told her I needed to go get my husband and I would be right back.

I woke Willie up and told him we needed to go see MJ, he was doing worse. We were gone maybe 15 minutes, and we walked in again to find five or so doctors huddled around MJ. He was having another erratic hearbeat spell due to the pulmonary hypertension and pressure in his chest. We quietly took a seat in the corner while the doctors talked over their plan of action. Megan came over to us and said that there was something that she needed to talk to us about, and she wanted to be the one to tell us. They thought that it was the day, and that at some point that day we would have to make a choice to hold MJ, or let him die alone on his bed. We had never held him yet, and even though we knew in our hearts she was right, we still felt as though we were hit with another bag of bricks. We cried and looked at each other wondering how we could ever make that decision. A few minutes later, one of the doctors came over to tell us the same thing. She said that they weren't out of options yet, but it was coming to that point. She asked us if we wanted them to continue treatments and try to save his life, or what else we wanted to do. We said save him, please save our son.

A little while later a cardiologist specialist came in to see MJ. He was obivously on his way to play golf, or do some other Saturday activity. But first he came to try and save my son. He looked over ECHO results and came over to talk to us. He said he didn't know why MJ was having the erratic heart spells that he was having, but that it was due to the pulmonary hypertension, and pressure in his chest. He thought he had a few tricks up his sleeve that the doctors were going to try. They started him on a new medicine, and said that they would give it an hour to work, and then they would try the next one.

My mom and sister got there shortly and we caught them up to speed with the plan to save MJ. The next few hours we stayed and prayed by his bedside. Every hour or so, they would start him on a new medicine, hoping that one would start to work. His oxygenation kept falling, from the 60s, to the 50s, and then to the 40s. At some point that day my mom and sister went out to get some food for us. I think it was Wendy's. I remember it tasting bland and not good. They forced us to eat, as we didn't really want to have anything to do with it. My sister and I were in the parent room by ourselves at some point, and she said that she had found an organization called Now I Lay Me Down to Sleep, and they would come take professional photos of us that day, if the worst were to happen. We had only two medicines left to try, and so I asked her to call them in two hours if these two didn't work. I told her that if the worst came, I wanted her to hold him. She promised that she would.

The next two hours came and went with no change, and his oxygenation still decreasing with each hour. The doctors came to us and said they wanted to try one last thing: switching his ventilator. He had been on the oscillating, or jet vent, and they thought that switching him to the normal, gentle vent would help decrease the pressure in his chest. They did say that there was some arugment between the doctors on whether it would work or not, and asked us what we wanted. We said try it, do anything to help him. Amid arguments from some of the doctors, his ventilator was changed. The thought was that either it would help him, or it would cause him to plummet even more. We all held our breath and waited to see what was going to happen. There was no change, he didn't plummet, but he didn't get any better. We were going to give him an hour and then evaluate our options. The next hour was much of the same, his oxygenation was going down. I remember when it hit 25% I asked our nurse how much lower it could go, she said not much. I covered his feet because they were so cold and blue because there was no oxygen going to them. She said that his body was keeping the oxygen for his major organs, and so his extremities were getting virtually none. My godmother and her son had come back to the hospital to be with us, knowing that we were about to say goodbye to MJ.

Willie and I looked at each other, each afraid of what to say, because there was really only one option left for us. Finally I said, I want to hold my son, I want to hold him. Willie agreed, and we both cried, knowing that it would be our first and last time holding him.

Megan came over to us and asked us what we wanted to do, the time was here, and we had to make a decision. We said we wanted to hold him. I asked her if the rest of my family could come in, as we had all been taking turns throughout the day to be with him. She said yes, that in situations like ours all the rules were thrown out the window. We prepared for everything that was about to come. Megan called Now I Lay Me Down to Sleep, and arranged for the chaplain to baptize Will and MJ. We really wanted them to have that together. I couldn't imagine baptizing MJ, and not Will. It would be the last and first thing they would do together as twins.

The doctors came and confirmed our decision with us. And then the room swarmed with people helping to prepare us to hold MJ. You see, he was on a ventilator, which made it tricky. But then you also had to add in all of the other tubes that he was attached to, which included a drainage tube (from his chest, after his surgery that had not been removed yet), and probably at least twenty different types of medicine. That day, they tried EVERYTHING they could think of to keep him alive. It probably took about 30 minutes to prepare for him to be moved. Right before he was about to be moved, Megan told us that sometimes, when they moved babies as critical as him, it caused them to crash and their heart to stop beating. She asked us what we wanted to do if that happened. Did we want them to put him back on the table, and perform CPR, or did we want them to continue to give him to us and let us hold him. She explained that performing CPR on him would be pure chaos, with an extra 20 or so people in the room, and it would be very traumatic to see how it would happen for us. We told her that we wanted him, we wanted him in our arms, and we wanted to finally hold our son.

We asked for them to take away the paralytic that he was on, in hopes that he would open his eyes for us. He never did, but thought that maybe he would.

I don't think that I will ever forget the moment he was placed in my arms. Tears of joy and sadness rushed down my face. It's really an indescribale feeling, knowing that I was finally holding my son, and the pure joy that I had in my heart, but then the pure devastation knowing that it would be my last. My husband looked at me and smiled, and said, look baby, he pointed to the screen where MJ's vitals were. His oxygenation had shot up to 80%, the best it had been in over 24 hours! He knew that his mother was holding him, finally. I was so happy, I knew, I just knew that MJ knew I was holding him. We took a ton of pictures. Our family of four was finally together for the first and last time, and as sad as it was knowing it was our last, we still were able to find joy in that moment, our final moments with MJ. After awhile Willie whispered to me that he knew we had made the right decision, MJ's heart rate had dropped dramatically, and was going down. At that point we switched and Willie was able to hold MJ for the first and last time. My mom and sister had brought us a change of clothes when they had got to the hospital that day, and so I changed quickly, as I knew the photographer was nearly there. I knew that the pictures we were about to take I would treasure forever, and I did want to be dressed a little nicer then I was.

Just as the photographer got there, we had switched again, and I was holding MJ again. She explained that she herself was a NICU nurse, and she was so sorry that she had to be there. We took more photos, and then the chaplain came and it was time to baptize our twins. Since MJ was dressed in nothing more then a diaper, we did the same for Will. It would be the first and only time that our twins would be photographed dressed alike, and in nothing more then a diaper. The chaplain said a few beautiful words, and then they were both baptized. We spent a few more moments with MJ and we knew that time was nearing for us. Earlier I had asked Megan how MJ would die, how long would it take. She said that he was on so much medicine that it could take a few hours, or a day or so. She said it could be dragged out for a long time, putting us all in much more pain then we wanted. We knew that we didn't want that for MJ. Somehow letting him go sooner was more dignified to me. Letting him go on our terms was better then for him to die slowly. And so we had let the doctors know that we were ready. We had our options they told us, they could take away just the medicine, just the ventilator, or both.

Slowly the took away all of the medicine he was on, except for the pain medicine, we always wanted to make sure that he was never in any pain. It took a good 15 minutes to unhook and cap all of the medicine he had. Then they asked if we were ready for the ventilator to be taken out. We had never seen him without it, but we were ready as we were ever going to be. They took it out, and for the first time in his short life, we were able to see him without a tube stuck down his throat. He was so beautiful and amazing, it broughts tears to our eyes. A few minutes later the doctor came to check if his heart was still beating. The room was so quiet, and Willie and I weren't really sure was she was doing. I had thought that as soon as the vent was taken out, he would be gone. But then I realized that it was not the case, and they were checking his heartbeat. A few more minutes after that, she checked again. And she whispered two words to me that will haunt me the rest of my life, I will never forget how they sounded, "MJ's gone." We sobbed, Willie and I, we both lost it, our son was gone, how was that ever possible?

We took a few more photos, and then I asked if my mom wanted to hold him, she kissed him goodbye and gave him back to me, and I gave him to my sister to kiss goodbye. The nurse had offered for us to give him a bath, or spend as much time with him as we wanted to. At first I thought it was something that I would want to do, but then we decided against it. MJ's body was getting cold, and I didn't want to remember him like that. I wanted to remember holding him alive, and feeling his warmth. I remember thinking it was odd that the nurse gave us warm blankets, and then I realized why she did. Looking back, I am glad that we did not bathe him. He had so many tubes coming out of him, and we would have had to work around them, and his body would have gotten colder, I don't really remember any of that, though. I simply remember my perfect little boy, wrapped in warmth, and how he fit so perfect in my arms.

We handed him over to the nurse and said our final goodbyes. Everything after is a blur, we signed some papers, authorized an autopsey, and within an hour we were on our way out. I remember feeling incredibly numb and almost as if I was having an out of body experience as we were leaving the hospital. My son was gone, and now I had to figure out how to live without him.

He Deserves Two Days

2011-04-01T18:19:00.000-07:00

The day that MJ died I remember holding him and promising him over and over again that I would never forget him, never forget his fight, and never let him be forgotten. Personally this is incredibly easy for me, after all, I am his mother, he is my son, and NEVER will I forget him. Outside of my husband and I it seems as though the more time passes, the easier it is for others to simply let his memory fade. I will not let that happen. I refuse to let MJ simply become a baby that I had that died.

MJ - Michael Joseph - lived. He lived for 35 wonderful, amazing days and death cannot break the bond that I as a mother have for my child. I have to advocate for him because he cannot. I have to ensure that his memory lives on because he is not here to remind people that he lived. I have to refuse to allow the time and the years to act as a shield to forget. My sons are an every day part of my life.

Every day I am incredibly thankful for Will because he brings me an incredible amount of joy and love each and every moment. Every day I am incredibly thankful for MJ because he has changed my entire life in the most positive of ways. I am forever thankful for both of my sons and each of them have an equal place in my heart.

And just as the love that I have for Will grows each and every day, the love that I have for MJ grows each and every day. Unless you have lost a child, this is something that I don't think you can understand. I would think that most people would assume that as time passes, so does the feelings that come with losing a child. This could not be more incorrect. The pain is just as intense as it was the day we said goodbye. The love is deeper then the day we said hello. My heart hurts and grows with love more each day.

But I know that I owe it to myself, my husband, and my son in my arms to live each day with joy and to be happy. I have my moments of great joy and I have my moments of deep despair and a lot of moments in between.

MJ has two days, two days that are simply just for him. He has his Angel Day and he has CDH Awareness Day. Two days out of 365 that are dedicated to his fight to live. His birthday has to be for his twin brother. Will has to have a wonderful and joyous childhood and allowing him to be incredibly happy and delighted on his day of birth is part of that. So maybe in my own mind I have made March 31st MJ's 'birth day'. CDH was the birth defect that took his life, so the awareness of this day in my mind is MJ's day. Cities and states all over the country have proclaimed March 31 to be CDH Awareness Day year after year. If you remember last Topeka, KS proclaimed it as CDH Awareness Day. I want to do it again this year, I truly did. But this year was much harder emotionally than last year. Which is odd, because I would have thought last year to be harder, but the time took so much more of an emotional toll on my heart this year. I have been without my son for 18 months now, 17 months longer then he lived. To think of all the time I have lived without him, and all the time I still have until we can meet again is simply overwhelming. Its almost too much to bear. Maybe that's why this year was harder. And maybe it was harder because we are getting to a point where when we meet people they simply assume that Will is our only child and that we do not have any others (example: our daycare situation - and yes I bawled my eyes out when telling Will's teachers about MJ - that is a whole new post).

Knowing that from this point forward MJ will be nothing other then a baby that I had that died to people as they come in to our lives hurts so much. And this is why it is so important to me to have CDH Awareness Day be about MJ just as much as his Angel Day. He deserves that. He deserves two days and one of those two days simply cannot be his birthday. I hope he understands that it has to be about Will, but because of that I have given him another day. March 31 and August 29 are MJ's days. They are all about him to me, my husband, and Will, MJ's twin. For those people in our life that supported us and CDH and MJ we cannot thank you enough, it means more then I could ever explain.

It's Been Awhile

2011-03-29T17:02:00.000-07:00

I've been super busy the last few weeks and haven't really had any chance to post anything. Will has been sick, I've been super behind in class and trying to catch up (I had to miss two classes through my miscarriage), and it's been a hard month. Thursday is CDH Awareness Day, and if you remember I would be honored if you would wear Turquoise to support all families affected by CDH.

While I love to promote CDH awareness and talk about MJ, this has been a really big thing on my mind lately. You see, we switched daycare places in October. We were at an in-home daycare, and now we are at a daycare center. I love the teachers in Will's room and we are really happy overall that we switched, but the thing is, they don't know about MJ. I bought Will a shirt that says 'I Wear Turquoise for My Brother' to wear on Thursday and I have been trying to tell Will's teachers all month about MJ and CDH Awareness Day. Obviously, I haven't had the guts to. I had a lot of opportunity to, as well. Will is typically one of the first kids dropped off, and so its pretty easy to start a conversation with his teachers. But I just don't know how to really. I mean, its not something that could ever easily come up in conversation, and even when we first started, I think everyone just assumed that Will was our first and only child, so no one asked. (I always say two kids.)

So here I am, tomorrow is the day before and I would rather bring it up the day before then the day of. Last year I cried most of the day, and so I think I will be pretty emotional on Thursday, so tomorrow will overall just be better. How I am going to do it, I have no idea. I am thinking of starting, "So there is something I need to talk to you about . . ." Who knows how it will actually go. Blah! I hate that I put this off for so long and now I am stuck doing it last minute. :(

Wish me luck, and don't forget to sport your Turquoise on Thursday!

A Little Bit of Normalcy (well, my normalcy)

2011-02-27T17:14:00.000-08:00

So this week we've gained a little bit of normalcy back. I've had a normal work week, I've stopped bleeding, and I have already lost 3 pounds of the 20 I want to lose before starting fertility treatments again. And today I started working out again, and this weekend I actually really cleaned my house. The emotions of the past six weeks have kind of left the house pretty unorganized and badly needing a good scrubbing!

It feels good to feel good again. I didn't realize how much the bleeding for three weeks took out of me - mentally and physically.

But is has been pretty hard emotionally. The miscarriage brought back a lot of the emotions of losing MJ. I was surprised, really, how much it reminded me and brought back the memories and emotions of saying goodbye to him again. The D&C wasn't that bad, I actually almost wish that I would have elected to do the D&C initially, rather then wait to miscarry naturally. But I was SO scared of the complications and risk factors of a D&C. Before I went in for the D&C I made sure that if I was the one in a million that would have to have a hysterectomy, that they would save my ovaries, thus saving my eggs. Then I started worrying about how we would afford a surrogate. Yeah, my mind was running on crazy that day. I am so glad it went smoothly.

I have really been focused on enjoying life the past week. Enjoying my husband, enjoying my Will, and really truly trying to appreciate life. But its hard. Today we took Will to the circus and I thought about how we really should be juggling two toddlers, instead of just one. Will was on my lap, and Willie's lap seemed so empty. Wherever we go, MJ is missed, but today seemed so much worse then normal. We enjoyed the circus, we really did, but I just really missed MJ today.

Slowly but surely we are healing and moving forward. The process seems much easier then losing MJ, but it still hurts. I think that when we start TTC again it will bring up a lot of fears. So for now, while we are focused on healing, we really are. But I know grief and I know that the emotions will come back, and probably worse if we are lucky enough to become pregnant again. I feel that I will bring home a rainbow, but I have no idea what kind of timeframe God has planned for us. Whatever it may be, for the moment I am content with that. I want to enjoy and cherish the moments with Will, instead of burrow in my own sorrow. I feel like I missed so much of him as a baby because I was so wrapped up in my own grief, and then I felt it all over again in the middle of the miscarriage saga. But I am ready to heal and ready to 'be there' for each and every moment. And on the note, I am going to help my husband tickle my little monster.

Time for an Update?

2011-02-22T13:38:00.000-08:00

So when I started this blog it was originally to document our way of honoring MJ's short life, through what started as a small local project of Project Sweet Peas. Today we are in full force and have donated over 340 care packages to families going through the NICU experience. You can read about what we do here.

Then the blog slowly morphed into my outlet of grief, and it really seemed (and still does!) to give me a way to channel my crazy emotions as I go through this life as a bereaved mother.

Now its slowly starting to morph again, into a blog about my life struggling with infertility, the death of my son, and every day life, really.

So I am wondering if maybe its time for a change or update to a.) my blog design b.) my blog name or c.) both. Anyone have any input? At a time I really wanted for this blog to be solely about my grief and/or MJ. And at a time, it was. And I tried the whole two or three blog thing and that didn't really work. It got overwhelming and then I never updated either of them. I kind of must want a blog about me, and all of me. Including my grief, my struggle with infertility, my family, and my never ending battle with trying to lose weight.

So, if anyone has any input, please let me know! Including new names, if I do decide to rename it. Thank you!

Feeling Better

2011-02-19T07:22:00.000-08:00

Well I had the D&C yesterday, and for the most part it was pretty painless, just some cramping after and through today. I am so glad its over and we can really start to actually move forward. I am so glad they knocked me out for it, it was so easy knowing I didn't have to know what was going on.

It just sucks a lot that I had to go through both the awfulness of a miscarriage and go through a D&C in two weeks. I almost wish I would have just said lets do the D&C, and not go through the natural miscarriage, but I was SO scared of the risks. I was so scared I was going to have complications and would it be a nightmare. Thankfully, it all went smoothly and its over, well almost over. I am still bleeding a little bit, but I think thats just from the trauma my uterus went through with the D&C. They said its normal and I am really hoping it will stop today and I can start doing normal things today. Will missed his swim lesson this morning because I couldn't go in the pool, and I really just wanted us all to relax at home today. I want to get back to normal things and have a few months of not worrying about ovulating or worrying what pill or what shot to take when. The few months off will be nice. And then next week I can get back to working out again and I can just focus on losing weight until we start TTC again.

Today I am thankful. Thankful for all that I have, all that I have been through, and thankful for the future filled with hope that one day Willie and I will have the big family full of kids running around just like we dream about.

D&C

2011-02-17T17:37:00.000-08:00

Yep, you guessed right, I am having a D&C tomorrow. I have been bleeding for 13 days and this morning it started to get pretty bad again. I emailed my nurse and she called me and said for me to come in immediatly, thinking I may need an emergency D&C. Thankfully, the bleeding slowed down a bit, and we scheduled one for tomorrow morning at 9:30am.

They were going over all of the risks and possible 'worst outcomes' for this, and I just started crying. I am so scared I will be the statistic that gets my uterus ripped, and a hysterectomy will be necessary. They assured me that it was a very small percentage of people that it happens to, and I told her that I felt that I was the reason for statistics like that.

I am overwhelmed and exhausted. Please keep me in your prayers, I'll update more tomorrow, hopefully.

Bad Few Days

2011-02-08T09:05:00.000-08:00

The really heavy bleeding started last night and has continued to this morning. I was up at least every hour last night dealing with it and the cramping that has come along with this miscarriage. I decided to take today off of work, I feel like it would have been just way too hard deal with amount of bleeding and the pain from the cramps at work. I thought about it really hard, though. Part of me wants to move forward and simply deal with all of this, but the other part of me wants to fall apart a little.

While falling apart is pretty appealing and all, I am simply sick of feeling sorry for myself. I want to grieve, I want to heal, but I don't want to feel sorry for myself. Thats why a part of me wanted to go to work, but the physical part of this miscarriage would have been WAY to much to deal with. I am laying in bed all day with a towel underneath me in case I can't make it to the bathroom in time when I have a huge gush come (sorry if TMI). It would never have worked at work. So I am happy I am home dealing with losing the last bits of this baby and this pregnancy.

We'll work through it, just like we always do. The emotional pain of this miscarriage cannot compare to losing MJ. Losing MJ was and is the worst loss that a parent can ever deal with. Its a fight each and every day, and I don't anticipate that with this miscarriage. I will always mis this baby, I will always think of this baby, but its just not like losing MJ. We've been through worse, so we know how to handle this. Which is awful, we shouldn't know the pain of losing MJ, nor should we know this pain.

Right now moving forward is at a standstill. I gotta get through the miscarriage first. No matter how hard I want to start moving forward and starting to grieve, I am still in the thick of the pain. I am still losing this baby, and its a painful loss, both emotionally and physically. I am not ready to grieve, I am not ready to move forward. I am hoping soon for closure, which would mean the end of this miscarriage.

The First Time Ever

2011-02-05T16:26:00.000-08:00

For the first time that I can remember, by body didn't actually fail me. I started to miscarry today. The cramping is incredibly painful, and the overall experience simply sucks. But in a way I am glad. Only because I don't have to go through a D&C, and maybe, just maybe this will kick off my body agreeing with what nature intends for it to do.

I was utterly convinced for awhile that I was going to have to have a D&C, so I am very glad this will not be the case. I hope the next few days go by fast and we can start to heal.

I should be ten weeks pregnant tomorrow :(

Fustration

2011-02-04T10:17:00.000-08:00

So this miscarriage hasn't happened yet. I HATE that I have to just wait for it to happen. If I don't have it by Valentines Day I have to go in for a D&C. I really DON"T want for that to happen. So as much as I don't want it to happen, I really hope that things start to happen quickly. I feel like once we get over this hump, then the healing can begin.

It feels like I am in limbo, in between pregnant and no longer pregnant. Where do I fall? Obviously I am not pregnant, but I still have a pregnancy in me. I am so glad today is Friday and I can have the weekend to relax. (Although I do have to work 2 hours tomorrow.)

I am ready to start the healing and then have a game plan of when we can try again. I totally feel like we are starting over from square one and who knows how long it will take us to get pregnant again. The first time (for Will and MJ) it took us almost a year and a half, this time it took us a year. So maybe we'll get lucky and shoot for six months? Obviously I hope it happens sooner for us, but I have to be realistic here, it probably will be another year or so. I am so not ready for this battle with infertility to start over again. So I guess its a good thing that we have to wait at least two cycles before starting fertility treatments again.

It will give us time to heal and time to prepare ourselves for the next year in our life. Am I ready for another year long battle and monthly disappointment in our quest to build our family? The answer is no, but I will do anything to bring a healthy baby home. There is nothing that I would want more in life then to have a bunch of kids running around me causing chaos. Sometimes it seems as though that dream is fading away with each day. Willie and I have talked about having at least three to four babies to raise here on Earth. With this miscarriage I am so scared that all we will have is Will. MJ will forever be in our hearts, and this baby will forever be missed. When will our happy ending come? Will our happy ending come? I guess I really don't know and all I can do is wait for life to happen and dreams to either come true or fade away.

I'll never know why God has chosen such a hard life for us, I'll never know why two of my babies are in Heaven. I hope and I pray each day that God will bless us with another life; another baby; another miracle for us to love and cherish. But right now I am not really sure if that is in the cards for us. We'll keep trying, we'll spend whatever it takes, and hopefully one day, we'll bring home another healthy baby. . . . .

A New Beginning and then Another Loss

2011-01-31T16:33:00.000-08:00

As I posted a few posts ago, in December we did our first round of IUI. While we were hoping for the best, we prepared ourselves to have to go through at least two rounds of IUI before becoming pregnant. Well, the day before Christmas Eve I decided to test one day early and low and behold we got a positive pregnancy test. We were completely over the moon and totally excited for this new special beginning. I mean really, what a awesome Christmas present, right?!

Fast forward two weeks and we went in for our first ultrasound. I was a nervous wreck, really. I was shaking while we waited for the doctor to come in and let us see our new miracles heartbeat. There was no heartbeat that day. We hoped for the best and thought maybe, just maybe, I wasn't as far along as we thought I was. Maybe my smaller egg released late and then implanted late and threw me off a few days. It was possible. The doctor said to wait 10 days and then come back and see if there was any growth.

Ten days after the first ultrasound we again were nervous wrecks as we waited for the second ultrasound. This time there was growth, but still no heartbeat. Once again the doctor told us to wait and come back. She said that most doctors would say miscarriage at that point, but she wasn't ready to give up on this new little one just yet.

Today we headed in for our third ultrasound. This time, no growth and still no heartbeat. Miscarriage. Really?! I mean really, God?! I am the statistic that women have nightmares about:

Primary Infertility
High Risk Pregnancy
Son born with a birth defect
Death of a Child
Secondary Infertility
Miscarriage

The doctor chalked this miscarriage up to bad luck, "after all 1 in 5 pregnancies end in miscarriage, you know. It's natures way of weeding out the bad. Most women go through this sort of thing. Your not alone."

Why do people feel the need to say these sort of things? I mean really, like those statements help at all. I am very aware of the statistics, I am the reason for statistics.

I wasn't ready to share all of this until we knew for sure what was going to happen. I never felt 'right' about this pregnancy, so I guess the miscarriage news isn't so surprising or ~~upsetting~~ shocking is the word I was looking for. This is so upsetting, I simply can't believe we have to go through this. When, WHEN will we have our rainbow?!?! I have been preparing myself for this news since before we even got pregnant. We have the worst luck in the world, after all. CDH (what MJ was born with) has no cause, its simply bad luck. This miscarriage, again, its simply bad luck.

This baby was due September 4, 2011. I should be 9 weeks pregnant and 1 day, instead my body should miscarry in the next two weeks, and if not, then I will have to have a D&C. Knowing my luck, that will happen and I will be the one in a million women that actually become sterile after having a D&C.

Seriously, though, we hope to try IUI again as soon as we can. Most likely that will be in 2-3 months, depending on how fast I miscarry and how fast my pregnancy hormones come down.

This baby will forever be missed and I only hope that MJ is playing with his little brother/sister in Heaven. Knowing I have two babies in Heaven comforts me in a way. They will not be alone, and have each other until we will meet again.

Baby Skaggs #3 I will always love and remember you. I wish you were with me here on Earth and we were rejoicing over good news today. My little bean, I miss you so much.

Blogger Award!

2011-01-19T10:38:00.000-08:00

I am so thankful to receive a wonderful blogger award from one special momma at Finding My New Normal.

I know I haven't posted in awhile, and its only because I am not quite ready to share what has been going on the past few weeks. I promise I will update next week, but for now, the thought of putting it all out there is a little scary.

Once again, THANK YOU for the bloggy award and here it goes!

Here's how this award works.

Thank and link back to the person who gave you the award.
Share 7 things about yourself.
Award 15 recently discovered great bloggers.
Make sure you contact these bloggers to let them know about the award.

Seven Things About Me

I have been to many different places on the planet including Jamaica, Mexico, New Zealand, Australia, and Canada. I love to travel and sadly haven't been able to since my wedding over three years ago! Hopefully sometime soon hubby and I can find time to sneak away for a quick weekend or something like that!
I was a big nerd in high school. I was obsessed with being that 'perfect' girl that had it all, and in reality I didn't. Then in college I went the exact opposite and partied WAY too much. I am happy to say that I have finally found a happy medium, and am really happy with who I am.
I grew up just outside of Chicago, IL and LOVE the Chicago Cubs. I am quite obsessed with them actually. I am very proud to say that MJ went to a Cubs game, Opening Day 2009 when he was tucked in my belly!
I think no matter weight I am, I will always feel fat. I would love to lose 50 pounds, but losing weight is hard! I lost 30 lbs, and would to keep that trend up!
I never thought I would find someone like my husband. He amazes me each and every day, and I never thought someone could make me so happy. Sometimes I wonder when he is gonna wake up and realize he is married to a big dork!
This blog is one of the only reasons I made it through the first year after losing MJ. I know I don't post a lot anymore, but I am constantly thinking of posts I would like to write! If only there could be a few more hours in each day!
I always thought that I would want to love someplace warm and never experience snow again. But I actually missed snow this year. We didn't get any in Kansas until last week, and I was really sad for awhile. Although now that it is here, I am ready for it to go!

And the Awards Go To
Love all of you ladies and am SO happy that I found your blogs!

Devon at Life as We Know It
Stephanie at Carried Through Grief
Desiree at Journey to Motherhood
Christy at Almost a Mother
Beckie at Beckie's Infertility Journey
Courtney at Cloudy with Hope
Angie at Expectation Revised
Lori at Lori Does Maryland
Laura at Moments of Pause
Rikki at My Forever Family
Brooke at Polka Dots and Ric Rac
Ethans Mommy at The Story of Ethan James
C at The Port of Indecision
Aly at The Infertility Overachievers
Trisha at Looking for Blue Sky

A Bad Dream

2010-12-18T10:49:00.000-08:00

So last night I had a dream about MJ. Its only the third time I have dreamt about him. The other two were good dreams, this one was not. I dreamt we were at my parents house for the holidays and I suddenly realized that MJ was missing and that he was still in the hospital at Children's Mercy and I hadn't gone and seen him in months, and never called to check on him and see how he was doing. I started crying and I thought I was this horrible mother that left her baby in the NICU and never looked back. I wanted to pick up and go and just leave (my parents house is in Chicago, and Children's Mercy is in Kansas City), but it just wasn't a feasible thing to do. I was crying and crying because I had left MJ for months. I wondered how big he was getting, and how much better he was doing. I remember thinking that when I was able to finally see him, I could probably old him, and he would be so big by now.

And then I woke up, and I realized that the reason I was missing MJ was because he isn't here, he isn't at Children's Mercy, and he never will be again. His ashes rest on my mantle, and thats the closest thing I will ever have to holding him again.

It was a bad dream, and while I think all the time how I love having dreams about my son, I really hope that I never have one like this again.

Christmas Thoughts

2010-12-14T18:38:00.000-08:00

So this year I am totally in the Christmas spirit (I guess). We have all of our decorations up, almost all of our presents bought (everytime I think I am done, I think of something else I want to buy!), and this weekend we are baking cookies with my sister. We went a little overboard this year on presents for Will. I think its because in my own way I am trying to make up for last year. We tried our very best last year to pretend as though Christmas wasn't happening. We didn't buy presents, didn't decorate, didn't do anything. So this year, Will has a TON of presents to open on Christmas Day. Our stockings are adorable! I bought them off a lady on Etsy and I just love how they turned out.

So we have our stockings for all of us. I don't really think that I can bear the thought of having MJ's stocking empty on Christmas Day. We bought him an ornament, and we also had a brick engraved for him at our local zoo. But you can't really wrap up a brick that is being laid at the zoo, so all that will be in his stocking will be an ornament. If any other BLM's have any ideas of what else I could have for MJ in his stocking, please let me know! I am really excited about the brick for him, though. It will be laid in front of the Children's Zoo, and it says, "Angel MJ Loved 4 Ever". We already are planning on having Will's 2nd birthday party there, so we will have a nice photo opp. I think it will be really cute. But other then that, that's all I got.

As much as I am actually excited about Christmas this year, I am also not. Its hard, each day, each month, and each year it gets harder, and easier at the same time. I think only another parent of an angel can comprehend that statement.

Anyway, the year is fastly ending, and the emotions are ever changing. Missing my baby, hoping for another one, and raising Will takes a lot of my time! I am excited and scared, sad and happy all at the same time. My emotions are like a box of chocolates, you never know what you are going to get!

Friday . . .

2010-12-08T12:46:00.000-08:00

We head to the RE for our very first cycle of IUI (intra uterine insemination). Today I had my sonogram to see how many eggs I had and what type of quality they were. I have two eggs that are looking pretty good!! I am SO excited, nervous, and scared all at the same time. I am excited at the possibility that we will get pregnant and have our rainbow baby. I am scared that we won't get pregnant and this won't work. We enough money to cover 2-3 cycles. So hopefully in 2-3 months we'll have our answer: yes this works! or no this won't. My doctor is very confident that is will work and this will be the answer. I am not so confident. Not because I don't want to believe it, but because I am so scared it won't work.

The thought is so incredibly elusive to me right now that we could actually become pregnant again. I remember the same thoughts when we were trying the first time, so maybe that means something? Who really knows.

We are supposed to take a pregnancy test on Christmas Eve to see if this IUI worked or not. Honestly, that is probably not going to happen. We'll probably wait until the Monday after to take a test. I can't imagine dealing with the dissapointment on Christmas, so we'll wait. If my period comes, it will be a lot easier to swallow then looking at another negative pregnacy test. I feel like the stupid single line just mocks me every month! (I know, crazy thoughts coming in here! But with all the meds I am on, I deserve it, right?)

We are actually celebrating Christmas this year. Last year, it was all we could do to hold it together. This year, we have our tree up already, have our decorations up, and have our lights up. We ordered stockings from a lady on Etsy, and they should be in by the end of the week. I am really excited about them! I think they are going to turn out super cute. We got one for all of us, me, Willie, Will, and MJ. I'll put pictures up when I get them in! That is really the only thing we are waiting on to complete our Christmas decor. This weekend all I really want to do is relax and bake Christmas cookies! I know, not the best way to lose weight, but I am trying! I keep wavering back and forth between 32 lbs and 33 lbs of weight lost. I seem to be a little stuck! But about 10 days ago, I was stuck at 29 lbs and 30 lbs weight lost, so I guess I am moving forward. I would really LOVE to be at 40 lbs weight lost before our next IUI cycle (if need be). But realistically, its the holidays, and that might just not happen. At work I have three Christmas parties in the next ten days!! Yes THREE!! And we are baking cookies this weekend, and Willie and I are planning a YUMMY Christmas Eve dinner. This I am very excited about. It is going to be a first for us, we are hosting Christmas in Kansas with family! Willie is going to cook prime rib (YUMMY) and we are going to have a delicious, calorie filled dinner. I cannot wait!

I have been going to Jazzercise 4-5 days a week and I just LOVE it. So even if I maintain, or only lose a few more pounds in the next few weeks, I will be happy. I know that I am losing inches and toning my body. My legs are actually starting to look good again! I played college softball and was a catcher, so I used to have these awesome legs that were all muscle. Then my junior year I blew my knee out and gained about 60 pounds over the next five years (including baby weight). So I am down 32 pounds, and really working on getting back to where I was. I would love, love, love to be where I was in college before my knee injury. But the facts are that if that happens, then that means we didn't get pregnant. So while I really want to lose weight and get fit again, I really want to be pregnant too! So I decided that all I can do is eat healthy, keep working out, keep going with fertility treatments and work on my mental state of mind (thank you therapist!). What will happen simply will.*

*Authors note: this is how I feel today, at this very moment. This will probably not be a consistent attitude. I may be sad, happy, or just plain pissed off tomorrow, next week, or even in the next hour. I am working on being a stable, happy person, but losing my son has made me just a bit crazy. (I think every BLM can agree with that!

A Much Needed Break

2010-12-02T10:13:00.000-08:00

Whew! It's been awhile since I have posted last! I didn't necesarily mean to, its just something that kind of happened, and something that I think I really needed. Its been pretty busy and emotional all at the same time around here lately and it really helped to be electronically out of it the past month or so. I deactivated my facebook account for the past month, too, and so I have been out of the loop on so many things!

But I needed it, I really did. I didn't realize how much I was hurting, until it all came down on me. With the holidays coming up, and the whole infertilty thing sticking a big pain in my a$$, the break was much needed and much wanted. I started seeing a counselor again, and let me tell you - she is great! She is just the counselor that I need. We are working on a lot of things, and she is helping me to recognize that it really is okay for me to be happy. So I am working on it. Even if I think that 90% is okay, it really isn't. It's not fair to Will or Willie if I am only 90% okay. I need to 100%, and while I am not there yet, someday I will be. And hopefully someday soon.

I started working out again, and I think that has really helped boost my spirits. I didn't realize how much I missed feeling sore and working out, until I got it back. I am doing Jazzercise, and omg, I LOVE it! It's so much fun, and I am going 3-4 times per week. I am sore, I am losing weight (and inches!) and just overall just feeling good about myself again. So far I have lost 32 pounds! Mind you, I started my weight loss way before I started Jazzercise, so I am hoping that this will help me kick up the pace on losing weight.

So . . . . on the infertility front, we just started our first IUI cycle. I am nervous, scared, and hopefull all at the same time. I am on day 3 of my meds, and then next Wednesday I go in to see how many eggies I have and what type of quality they are. Then probably either Dec 11 or Dec 13 we will go in for the actual IUI procedure. I really, really hope that this works. We are paying for everything out of pocket, and so with each cycle brings a bigger hit to our savings account. But it will be worth it, worth every penny if/when I look into my baby's eyes. Hopefully soon . . .

So Many Thoughts

2010-11-04T12:51:00.000-07:00

These last few days have been really hard for me for some reason. I don't know why, but I feel like everything is hitting me all over again. I watched MJ's video again, went through those final moments and days and asked myself the killer question: why? Why did my son have to die? Why must I go through everything in life that God has asked me to?

There are so many questions and not enough answers. I don't know why MJ died and I never will. I will never know why God has chosen the life that He has for me. I look at those around me and sometimes I think that man, I would love to have that life. I would love to worry about stupid pointless things and actually care enough to vote. It all seems so pointless to me. Why worry or care about things as pointless as who wins an election? I bear the pain of losing my son each and every day and in each and every way. Sometimes I feel like I have lost all hope in being happy again. Don't get me wrong, I smile, I laugh, my living son brings me an immeasurable amount of joy. But losing MJ and now dealing with Secondary Infertility has really brought some heaviness to my heart.

And with the holidays quickly approaching the days seem to get harder and harder. Last year Willie and I did our very best to 'skip' Christmas. We didn't buy any gifts, we didn't decorate our house, we simply went through the days trying as best we could to hold life together. This year is different. I want to give Will a wonderful Christmas and be able to actually enjoy the holiday. We are having Christmas at our house this year - a first for us. I already have a list for Will and we have already started purchasing things for him. I think I somehow want to make up for his lack of a first christmas. (I even asked everyone to not buy anything that said 'Baby's First Christmas' on it. We have already decided what we are going to do for MJ for Christmas as well. We are buying him a brick at our local zoo, to be placed near the children's petting zoo. We also plan on having Will's birthday party there next year.

So it's all planned out, and now the emotions are coming and the tears have definetly been flowing today. It's really hit me like a ton of bricks. Maybe it also has something to do with the fact that Aunt Flow came on Saturday, three days late to it really had me thinking something good was going to happen for once. This month we are taking it off of fertility medication. And next month we will do our first round of IUI. Our insurance covers $0 of fertility treatment, so its going to cost around $1,000 each month to do. I really hope that IUI will work and we will have our rainbow baby on the way. We really don't have a whole lot of money to be able to do more then two, maybe three rounds of IUI. Maybe, just maybe we will get lucky and it will happen on our first round. Our RE thinks we have an 'excellent' chance of becoming pregnant. So hopefully she is right and it won't be too hard or costly. But I would give every dollar I had for a baby right now. That's what gets me too, so much. I would literally give my life to have been able to save MJ and I couldn't. And there are so many people who complain about there kids or say they can't handle another one because it would be too costly or this or that. What I wouldn't give to be able to just become pregnant.

I have this fantasy where we become pregnant again, have a healthy baby and six weeks later find out we are pregnant again on 'accident'. I would LOVE to wake up one morning and think, oh my god, I might be pregnant and actually be. I would LOVE to take a test and have it be positive. I have literally no idea how people get pregnant on accident. The idea of an accidental pregnancy simply astonishs me. It's almost mystifying to me, really. But it happens, and it has happened to a lot of people that I know. And again, I wonder why God has chosen me for this path of heartache and pain, when other people are chosen for and ease of a life. (Or at least what I consider to be ease.) I know they may not think its easy, but then again, they have never had to say goodbye to their child.

2010-10-19T18:30:00.000-07:00

So I know that I haven't posted in awhile, I just guess I don't really have anything to say. I miss MJ, as always, and things are starting to get better, but then at the same time things are just as bad as every, or they get worse. I never know my feelings I guess!
I read a quote today that really resonated with me. It goes Healing from the death of your child is much like wisdom; it can't be forced, yet it comes upon you if you let it....~ Dr. Tom Frantz, Advisory Member, TCF, Buffalo, NY

So maybe I guess what I am trying to say is that I am healing. I can't force it to happen, it just has to. And just like healing from physical pain, the emotional pain will have its ups and downs. At times I feel good and at times when I try to do too much, the pain comes ripping through me and I feel like I am back where I started, in those awful, painful weeks following the death of my son. But its getting better. It will never be 'all good', it will always be painful, and the scar will always last, but I am getting by. Day by day, week by week, and month by month, it is getting better.

We met with our RE a few weeks ago and have a plan to try and get pregnant again. But that will be very expensive, and it is honestly money that we do not have. So we are saving money and our goal is to start with IUI in January. Our RE thinks we have an excellent chance of getting pregnant again - we just need the money to do so and hopefully we will soon have our rainbow.

Patches the Bear Comes for a Visit

2010-10-11T18:51:00.000-07:00

Patches the Bear has come for a visit! Patches has gone around Canada and the United States 'patching' up hearts one at a time. I am so happy that he has come and visit me! Patches came just before I left for New Orleans to visit my very good friends (who also happen to be babylost mommas - both of their babies were born with CDH, the same birth defect as MJ). It was a wonderful visit and Patches kept MJ company while we were gone! Here is Patches with MJ's ashes, the teddy bear that was always by his bedside, the figurine made for us by the Midnight Orange, and the beautiful pendant Beckie from Beckie's Infertility Journey sent me.

After we got home, Patches hung out with the portrait we had commissioned after we lost MJ. We never had any pictures of our boys together without MJ intubated until after we lost him. I love this picture of them, it makes me think of how amazing it would have been to have both of them together, healthy and whole.

Patches then hung out a little with Will, MJ's twin in his crib.

The poem on the pillow reads:

You have this twin brother,
He loves you very much,
But you'll never get to see him,
Or feel his gentle touch

He had to go away you see,
Through God's Garden gates,
Though he longs to meet you,
Heaven's where he waits

You have this twin brother,
He's sending you his love,
Although he longs to be with you,
He watches from above,

He grew his Angel wings you see,
Through none of us were ready,
On one of Heaven's clouds he sleeps,
Cuddling his teddy

You have this twin brother,
He'd love to come and play,
But for all eternity
In the sky is where he'll stay

God had a plan you see,
He needs him by his side,
He's shown him how to use his wings
Through Heaven's clouds he glides

You have this twin brother,
And though you are apart,
The love that you feel for him,
Will remain forever in your heart.

I don't think I need to explain what that poem means to me. I don't know who wrote it, it was sent to me.

Patches is now watching over Will as he sleeps. He will be mailed out hopefully tomorrow to his next stop. We have not been able to take MJ's name down off of the wall in their room just yet. We keep saying that we need to, but we have just not yet had it in our hearts to do so. So Patches is watching over Will resting in MJ's name . . . .

Farewll Patches! You will be missed in our household, but we know that you will be busy comforting so many other families in your journey.

New Blog Friday!

2010-10-01T06:16:00.000-07:00

Aly over at The Infertility Overachievers has decided to feature me on her New Blog Friday! I love reading her blog and was so excited when she asked if I wanted to be on New Blog Friday. So to all of the people heading over here from there, WELCOME to my blog! I know you read a little bit about me over there, but here you can see more of my life and my sons.

The reason that I started blogging was to document the foundation that we started MJ's name: MJ's Memories. We are a Local Project of Project Sweet Peas and we donate care packages to families with a baby in the Neonatal Intensive Care Unit, where MJ lived his entire life. This month is actually our One Year Anniversary!!

Slowly but surely this blog became my outlet to everything through my grief. Being a mother to an Angel is not easy. After the funeral, people slowly stop calling and stopping by. The people who you thought were your friends pretend like you don't exist - its almost as if you have a plague. And throughout everything, all you want to do is talk about your baby. We lost MJ a little over a year ago and every day I fight for to validate his life. Every day I find ways to include him in our family. We are a family of four, but people only see three.

So here, on my blog, I can yell and scream and cry and laugh about it all. So thank you for stopping over to check me out, and to everyone who already reads my blog, thank you for allowing me to share my sons with you. They are both a huge part of my life.

New Blog

2010-09-22T15:10:00.000-07:00

I know that I have mentioned this before, but I originally started this blog with the intentions of keeping up with everything that we do in MJ's name - our Local Project of Project Sweet Peas - MJ's Memories. And at first I was really good about keeping it everything that we were doing with our project, and everything that we have done in MJ's name. But then my grief sort of overcame me for awhile, and this blog became my personal outlet as I journeyed through this new crazy life of mine. I have not kept up to date with anything other then my own thoughts and feelings for awhile, but at the same time, I really want to document what we do for MJ. So I created a whole new blog!! I will keep this blog separate and still use it as my outlet. Now I have a whole new blog dedicated solely to support our efforts in honoring MJ's short life.

The new blog address is http://mjs-projectsweetpea.blogspot.com and you can reach it here. So for anyone who is wanting to keep up to date with what we do, head on over and check it out :)

And for those of you unfamiliar with what we do in our son's name, let me tell you! We donate care packages to families with a baby in the intensive care unit. We are in the process of filing for our 501c3 paperwork and hopefully should have that complete within weeks! We are a Local Project of the amazing organization Project Sweet Peas, in which I also serve on the Board of Directors. We donate our care packages to Children's Mercy Hospital in Kansas City, MO - the hospital where MJ lived and died. And to Stormont Vail Hospital in Topeka, KS. Since we live in Topeka, we wanted to do something locally, as well. We also have donated memory boxes to Children's Mercy (for parents to have when they lose their baby) and we are planning on donating some to Stormont the end of October. To date we have personally delivered 224 care packages and memory boxes, and next month is our one year anniversary!!

So what do we include in our care packages? Here is a list :

Receiving Blankets
Disposable Cameras
Picture Frames
Stuffed Animals
Isolette Name Plaques
Baby Brush/Comb sets
Baby Caps
Baby Booties
Baby Mittens
Baby Eye Masks
Children's Books
Hand/Foot Molds
Tissue Packs
Journals / Notebooks
Pens
Puzzle Books
Baby Lotion
Baby Shampoo
Lip Balm
Hand Sanitizer
Travel Size Toiletries
(Deodorant, Shampoo, Conditioner, Toothbrush, Toothpaste)
Shaving Kits

We also send out our NICU care packages to families with a baby in the NICU, all over the country. If you know someone with a baby in the NICU, please email me at megan@projectsweetpeas.com and I will make sure that a package is delivered to them (with no charge).

So if you have a minute, head on over and check everything out!

A Love/Hate Relationship

2010-09-19T19:47:00.000-07:00

Today we made the hour long trek to Children's Mercy Hospital, just as we did a little over a year ago. But this time we made remembered MJ and his fight, instead of sitting beside him, holding his hand and praying for God to spare his life. Children's Mercy has their annual Memorial Service for all of the children and babies that have lost their battles. There was even a butterfly release:

As we were leaving I realized that I have a love/hate relationship with things like this. On one hand, I am so thankful for an opportunity like this to remember MJ and experience something so beautiful. The pain I felt today, was a good pain, it was a pain that allowed me to grieve. So many days things are so busy in my life, that I just never have time to cry and just grieve. Or I put off my feelings attempting to protect my heart. But today was different, I could cry and grieve and it was all okay. It was so beautiful, being with so many parents that have gone through what we went through, and being able to remember our babies.

But at the same time I hate it. I hate that we have to participate in a Memorial Ceremony instead of having bliss with both of our babies. I was sitting there today and just thinking, oh beautiful it was, and how much I really didn't want to be there at the same time.

Throughout the continuous tears during the ceremony Will was just so awesome. It was like he knew when I just needed him to cuddle, and when I needed him to make me laugh. He is not normally very cuddly lately, as it seems like all he wants to do it run around - he has a ton of energy! But as soon as the service started he just wanted to cuddle in my lap. That hour or so was really a reflection of the past year. Having Will, MJ's twin, to raise in the aftermath of MJ's death did not make losing MJ any easier (as so many people like to point out that I have Will, so I should be happy with him). What Will has done for me is make me smile through my tears and my heartache. He lifts me up when I am down, and makes me laugh when I need it. He gives me a reason to not just get up and out of bed each day, but to live and enjoy life.

My sweet little Monkey Man

During the ceremony today there was a beautiful song played called Godspeed, (Sweet Dreams). I find great comfort in the lyrics of so many songs and poems, and this is another one to add to my list. It is written by the Dixie Chicks, and part of the song goes:

Godspeed, little one
Sweet dreams, little one
Oh, my love will fly
to you each night
on angels wings
Godspeed, sweet dreams.

Part of the ceremony included a quilt dedication. Throughout the halls of the hospital quilts are hung , each with a square for a child that passed away at Chilren's Mercy. We made a square for MJ and submitted it today. It will be dedicated next year at the Memorial Service, but here is a picture of it:

Update

2010-09-14T11:09:00.000-07:00

So when I first started this blog, it was to update everyone on the progress of the foundation we started in MJ's name: MJ's Memories, which is a Local Project of Project Sweet Peas. At first, that's all I really wrote about, and then slowly it started to become my outlet for my grief. Anyway you look at it, this blog has really helped me in the past year or so.

So since I haven't updated in awhile about MJ's Memories, here is an update :) After our Butterflies and Balloons Rememberance Release, we donated 53 gift bags to Children's Mercy Hospital in Kansas City, MO, in honor of MJ's Angel Day, August 29. 35 were Memory Boxes that will be given to families that have lost their baby while in the intensive care unit at Children's Mercy. In each memory box we included a knit blanket, knitted by my mother-in-law (they are so beautiful!), a broken heart pendant with a poem that reads, " A part of me is broken My heart has split in two A part of me is missing Because you took a piece with you A part of me’s not whole My heart will never be the same And itcannot be mended Until we meet again" , a wisp of hair bag with a poem that reads, "With your last breath of air, We cry, knowing it is unfair, but the pain I can bare, Because I'll always have A Wisp of your hair" a disposable camera, a baby cap, a photo frame with a baby angel, and a stuffed animal. Here is a photo of a girl memory box:

We donated 35, one for each day that MJ was alive. We also donated 18 NICU gift bags, 8 girl and 10 boy. Here is a photo with all of our donations that day!

Today we are sending out three more bags. My aunt has a family friend that delivered triplet girls at 27 weeks, 4 days. They have had a rough start, but hopefully are stabilizing. They are expecting a long NICU stay for all of the girls. Please keep this family in your thoughts and prayers.

We are also doing a t-shirt fundraiser soon! If you are interested in purchasing a t-shirt, please keep us in the back of your mind, and look for a post soon on our t-shirt design!

We are incredibly honored to be able to do so many wonderful things in memory of our sweet son. To date we have personally delivered or mailed out 215 gift bags or memory boxes to families in need. Next month is our one year anniversary, we are so incredibly thankful for all of the support that we have been given in honoring our son. If you have thought about us, donated to us, or helped us fundraise over the past 11 months - THANK YOU!!!!

Someone Else's Star

2010-09-12T08:38:00.000-07:00

As Fall approaches and the weather changes and the days get cooler and shorter, I simply cannot believe how long its been since we said goodbye to MJ. Its very hard to believe that this time last year we were left to pick up the pieces. Our families said goodbye (mine to the Chicago area, and a sister in NY, and Willie's to Nevada, but thankfully one of my sister's lives only an hour away), and slowley but surely the calls to see how we were doing stopped, and the friends faded away with time. We were heartbroken and lost. Completely and utterly lost.

I swear I don't remember anything that happened during the first month or so after MJ died. Willie was planing on coaching the freshman football team at the school he works at, but when we realized how sick MJ was, he had to step down. He simply couldn't bear to be coaching football while his son was fighting for his life each and every day. After we lost MJ, the other coaches told him that if he wanted to come to the games and help coach, he still could. About three weeks after MJ died, Willie decided he wanted to go to the games and help out. I thought it was a good idea, it would get our minds off of everything for awhile, and it would get me out of the house, I was still off of work for awhile, and Willie headed back already. I am friends with another one of the coaches wives, and so I called her and we planned on meeting up at the game. I had never met any of the other wives, and so we were all introduced Throughout the game, we small talk chatted, and one of them was talking to me and saying how cute Will was and I said, well, he's a twin, and his twin passed away. She said she knew and she was so sorry. Then she said she just couldn't believe that I was out and at the game. She said she couldn't imagine doing what I was doing. My reaction was like, how am I supposed to be? Explain to me how I am supposed to live, and how we are to go on. It was my first realization that unless you have lost a child, you will simply never understand. Life has to go on. Life does go on. With or without you. While all I wanted to do was fall apart and completely check out of life, I simply could not. I had to go on, I had to get up each day, and get dressed, and go to work and take care of the baby that I had in my arms. I still am utterly surprised at how things have played out the past year. I don't talk to many friends that I had prior to losing MJ. Things with some of my family have disgusted me entirely. I no longer care about so many things. One family member remarked on how I am no longer the happy, bubbly girl that I had always been. Um, really? How on Earth would you expect me to be? My son died, dammit!

My entire life is filled with bittersweet moments. Every smile, every joy, everything will forever be cracked, I will never fully smile, and my heart will never fully recover. There will never be anymore complete family pictures. Sometimes I can't believe how far I have come in the past year, and at other times I feel as though I have pushed my grief aside and never truly dealt with MJ's death. I have talked with many other parents who have lost their own children, and the consensus seems to be seven years. I takes about seven year for the pain to lessen, and for life to not seem so bad. While it never truly goes away, seven years seems to make it more bearable.

We are still waiting for our rainbow, waiting for life's blows to lessen, and for things to start to fall into place or us. We are still trying to conceive again. I've just about lost hope that that's going to happen. I'm in the middle of my fourth month of fertility medicine and I just feel like we should be happy with what we have been given, and stop wishing for things to go right. It's so hard because its that time in our life when so many of our friends and family are getting pregnant and having healthy babies. Some days I feel like I hate facebook, seeing so many new family pictures and stupid sonogram photos. And each month I fall apart just a little more when it doesn't happen. I heard the song 'Someone Else's Star' by Bryan White the other day, and I can so closely relate to this right now. The lyrics go . . . .

I guess I must be wishing on
Someone else’s star
It seems like someone else keeps getting
What I’m wishing for
Why can’t I be as lucky
As those other people are
I guess I must be wishing
On someone else’s star

Butterflies and Balloons and Remembering Our Very Much Loved Angels

2010-08-30T11:06:00.000-07:00

Yesterday we celebrated MJ's short life with a Butterflies and Balloons Rememberance Release. I can't thank everyone who came, bought butterflies and balloons, or just supported us from afar enough for all of the love and support we felt yesterday.

It was a very emotional day for us, knowing that one year ago we had to say goodbye to our sweet MJ. Not a day goes by when we don't think of him and what should be. The only thing that we can do now is try to make him proud, and live each day to the fullest in him memory.

Here are a few photos from the Release. If you purchased a Butterfly and Balloon for your angel, I will email a picture of it shortly. Thank you again!

Writing on Balloons and Getting Ready

Our Angels Remembered . . .

Lost in thoughts of my sweet MJ

Releasing the Balloons

Releasing the Butterflies

365 Days

2010-08-27T23:15:00.000-07:00

Or one year ago we knew we were going to lose MJ. We hope and prayed that our fears would not come true, but they did. I have never actually wrote everything that happened that day, and so I am going to now. I apologize that it is so long, but I want to remember everything from those last hours with my son. Here it goes . . .

It all started on my birthday, August 28 2009. We woke up that day after a few rough days with MJ, and were hoping for a much better day. After all, it was my birthday! What better present could I get then a good day with my sons. We called the hospital and they said that MJ was doing great, he had a really good night, and the goal for the day was to turn down his oxygen. He was one 98-99% oxygen, and he really needed to start making a turn and breathing more on his own. Since he was doing okay, Willie decided to go to work, at that point we were preparing for a year long stay in the NICU with MJ, and so Willie was trying to conserve his days off of work. Will had his month check up at the doctor that morning, and so I took him in late morning. After our appointment I stopped by my work to have some birthday treats, and the plan was to relax a little in the afternoon before Willie got off work and we would go see MJ. At noon I called the hospital again, and he was doing even better! I was so elated, MJ was giving me the best birthday present ever. His oxygen had been turned down to the mid 80s, and they thought they would be able to turn it down more in the afternoon. The nurse actually said, "We can't turn it down fast enough, he is doing so great!"

After a quiet afternoon, we left for the hospital. We walked up to his room filled with hope, our son was having a great day in the NICU, and it was my birthday. We never had a clue what we were about to walk into. After we scrubbed in, the entered his room to find seven to eight doctors crowded around MJ. We didn't have a clue what was going on, and waited in the wings of the room as the doctors tried to figure out what was wrong. He was have a very bad bout with pulmonary hypertension, and had a ton of pressure in his chest. His heart beat was erratic at best, and it seemed as though his little body was shutting down. We were only able to get a few peaks at MJ while the doctors were trying to find the best solution. Once we were able to get a clear look at him, we both knew. It's a moment I will never forget, a moment that I knew my son was going to die. He had enough, he couldn't fight anymore. It was something that came over me that I will never be able to fully describe, almost like someone was telling me he was done, and just couldn't fight anymore. I had to leave the room to gather myself, and went to go call my mom and sister to tell them to come to the hospital.

I went to the parent break room to use the phone. We weren't allowed to have cell phones in the NICU, and so I had left my phone in the car. My sister lived an hour from the hospital, and my mom was in for the weekend, and was spending the night with her. I struggled to remember my mom's cell phone, and so I called my dad in Chicago, hoping that he would be home. He was home, and started crying and told him that MJ was not doing very well. I asked for my mom's cell phone number, and my dad asked how bad it was. I never forget my response, "Daddy, he looks like he is dying." My dad started crying, and then I called my mom. All I had to say was that MJ was not doing very well, and my said, "Okay, we're on our way, give us an hour."

The next hour or so, Willie and I struggled for composure. We had been hit with a brick, and were praying that MJ would pull through and survive. Our nurse arranged for a room for us to sleep in that night in the NICU. They didn't want us leaving the hospital for fear he would die while we were gone. We wouldn't have left anyway, we knew that MJ needed us. The doctors discussed our options, and said that for night his goal was to remain stable. His oxygen was back at 100% support, and he was oxygenating (the amount of oxygen his blood was getting) was in the around 70%. His goal was to be at least 92% oxygen.

After we got settled in our room Willie ran to the hospital cafeteria to get us some dinner. It was the last time we would eat there, after we had basically lived there for 35 days. The food tasted bland and was cold.

After awhile my mom and sister got there, and we all struggled to grasp what was happening. His little body was turning into a color mixed with gray and green. Everything was shutting down, and the doctors were doing all they could do to keep him alive. My mom told me that my godmother and her son were on their way to the hospital, too. She was in town visiting him for the weekend, as he goes to school at the University of Kansas. After awhile they got there. It was such an amazing feeling to be able to introduce my son to only the seventh and eighth people to meet him other then the amazing doctors and nurses who took care of him on a daily basis. So many of our family live out of town, and so they could not meet him. We told everyone to wait until he was more stable, or able to come home before coming out to visit. We all took turns visiting MJ for a few hours. Only two people could be at his bedside at a time.

Around midnight that night everyone left. My mom and sister had plans to come back first thing in the morning, and we were going to try and get a good night of sleep. We went and said one last goodnight to MJ, thanking God for another day with our son. I was so thankful that he had made it through my birthday. I didn't want to remember that on my birthday my son died. (Although I will always remember it as the day before my son died.) We were physically and emotionally exhausted. We both layed down and fell asleep. We didn't have a change of clothes, toothbrush, or anything else with us for that matter. We simply slept on a bed in the clothes we had on.

I woke up the next morning about 7 am to feed Will. We were not allowed to see MJ until 8 am because the doctors were doing rounds. At 8 am, I left Willie and Will to see how MJ was doing. I walked in to find our favorite nurse, who I thank God that she was our nurse that day. We could never have gotten through the day without her. I walked over to MJ and kissed him good morning. Megan walked over and I asked her how he was doing. She had asked what time I had last been in to see him. I told her around midnight or so and she told me that he was doing worse. His was now oxygenating around 60%, and his arms and legs were turning blue due to the lack of oxygen. I told her I needed to go get my husband and I would be right back.

I woke Willie up and told him we needed to go see MJ, he was doing worse. We were gone maybe 15 minutes, and we walked in again to find five or so doctors huddled around MJ. He was having another erratic hearbeat spell due to the pulmonary hypertension and pressure in his chest. We quietly took a seat in the corner while the doctors talked over their plan of action. Megan came over to us and said that ther was something that she needed to talk to us about, and she wanted to be the one to tell us. They thought that it was the day, and that at some point that day we would have to make a choice to hold MJ, or let him die alone on his bed. We had never held him yet, and even though we knew in our hearts she was right, we still felt as though we were hit with another bag of bricks. We cried and looked at each other wondering how we could ever make that decision. A few minutes later, one of the doctors came over to tell us the same thing. She said that they weren't out of options yet, but it was coming to that point. She asked us if we wanted them to continue treatments and try to save his life, or what else we wanted to do. We said save him, please save our son.

A little while later a cardiologist specialist came in to see MJ. He was obivously on his way to play golf, or do some other Saturday activity. But first he came to try and save my son. He looked over ECHO results and came over to talk to us. He said he didn't know why MJ was having the erratic heart spells that he was having, but that it was due to the pulmonary hypertension, and pressure in his chest. He thought he had a few tricks up his sleeve that the doctors were going to try. They started him on a new medicine, and said that they would give it an hour to work, and then they would try the next one.

My mom and sister got there shortly and we caught them up to speed with the plan to save MJ. The next few hours we stayed and prayed by his bedside. Every hour or so, they would start him on a new medicine, hoping that one would start to work. His oxygenation kept falling, from the 60s, to the 50s, and then to the 40s. At some point that day my mom and sister went out to get some food for us. I think it was Wendy's. I remember it tasting bland and not good. They forced us to eat, as we didn't really want to have anything to do with it. My sister and I were in the parent room by ourselves at some point, and she said that she had found an organization called Now I Lay Me Down to Sleep, and they would come take professional photos of us that day, if the worst were to happen. We had only two medicines left to try, and so I asked her to call them in two hours if these two didn't work. I told her that if the worst came, I wanted her to hold him. She promised that she would.

The next two hours came and went with no change, and his oxygenation still decreasing with each hour. The doctors came to us and said they wanted to try one last thing: switching his ventilator. He had been on the oscillating, or jet vent, and they thought that switching him to the normal, gentle vent would help decrease the pressure in his chest. They did say that there was some arugment between the doctors on whether it would work or not, and asked us what we wanted. We said try it, do anything to help him. Amid arguments from some of the doctors, his ventilator was changed. The thought was that either it would help him, or it would cause him to plummet even more. We all held our breath and waited to see what was going to happen. There was no change, he didn't plummet, but he didn't get any better. We were going to give him an hour and then evaluate our options. The next hour was much of the same, his oxygenation was going down. I remember when it hit 25% I asked our nurse how much lower it could go, she said not much. I covered his feet because they were so cold and blue because there was no oxygen going to them. She said that his body was keeping the oxygen for his major organs, and so his extremities were getting virtually none. My godmother and her son had come back to the hospital to be with us, knowing that we were about to say goodbye to MJ.

Willie and I looked at each other, each afraid of what to say, because there was really only one option left for us. Finally I said, I want to hold my son, I want to hold him. Willie agreed, and we both cried, knowing that it would be our first and last time holding him.
Megan came over to us and asked us what we wanted to do, the time was here, and we had to make a decision. We said we wanted to hold him. I asked her if the rest of my family could come in, as we had all been taking turns throughout the day to be with him. She said yes, that in situations like ours all the rules were thrown out the window. We prepared for everything that was about to come. Megan called Now I Lay Me Down to Sleep, and arranged for the chaplain to baptize Will and MJ. We really wanted them to have that together. I couldn't imagine baptizing MJ, and not Will. It would be the last and first thing they would do together as twins.

The doctors came and confirmed our decision with us. And they the room swarmed with people helping to prepare us to hold MJ. You see, he was on a ventilator, which made it tricky. But then you also had to add in all of the other tubes that he was attached to, which included a drainage tube (from his chest, after his surgery that had not been removed yet), and probably at least twenty different types of medicine. That day, they tried EVERYTHING they could think of to keep him alive. It probably took about 30 minutes to prepare for him to be moved. Right before he was about to be moved, Megan told us that sometimes, when they moved babies as critical as him, it caused them to crash and their heart to stop beating. She asked us what we wanted to do if that happened. Did we want them to put him back on the table, and perform CPR, or did we want them to continue to give him to us and let us hold him. She explained that performing CPR on him would be pure chaos, with an extra 20 or so people in the room, and it would be very traumatic to see how it would happen for us. We told her that we wanted him, we wanted him in our arms, and we wanted to finally hold our son.

We asked for them to take away the paralytic that he was on, in hopes that he would open his eyes for us. He never did, but thought that maybe he would.

I don't think that I will ever forget the moment he was placed in my arms. Tears of joy and sadness rushed down my face. It's really an indescribale feeling, knowing that I was finally holding my son, and the pure joy that I had in my heart, but then the pure devastation knowing that it would be my last. My husband looked at me and smiled, and said, look baby, he pointed to the screen where MJ's vitals were. His oxygenation had shot up to 80%, the best it had been in over 24 hours! He knew that his mother was holding him, finally. I was so happy, I knew, I just knew that MJ knew I was holding him. We took a ton of pictures. Our family of four was finally together for the first and last time, and as sad as it was knowing it was our last, we still were able to find joy in that moment, our final moments with MJ. After awhile Willie whispered to me that he knew we had made the right decision, MJ's heart rate had dropped dramatically, and was going down. At that point we switched and Willie was able to hold MJ for the first and last time. My mom and sister had brought us a change of clothes when they had got to the hospital that day, and so I changed quickly, as I knew the photographer was nearly there. I knew that the pictures we were about to take I would treasure forever, and I did want to be dressed a little nicer then I was.

Just as the photographer got there, we had switched again, and I was holding MJ again. She explained that she herself was a NICU nurse, and she was so sorry that she had to be there. We took more photos, and then the chaplain came and it was time to baptize our twins. Since MJ was dressed in nothing more then a diaper, we did the same for Will. It would be the first and only time that our twins would be photographed dressed alike, and in nothing more then a diaper. The chaplain said a few beautiful words, and then they were both baptized. We spent a few more moments with MJ and we knew that time was nearing for us. Earlier I had asked Megan how MJ would die, how long would it take. She said that he was on so much medicine that it could take a few hours, or a day or so. She said it could be dragged out for a long time, putting us all in much more pain then we wanted. We knew that we didn't want that for MJ. Somehow letting him go sooner was more dignified to me. Letting him go on our terms was better then for him to die slowly. And so we had let the doctors know that we were ready. We had our options they told us, they could take away just the medicine, just the ventilator, or both.

Slowly the took away all of the medicine he was one, except for the pain medicine, we always wanted to make sure that he was never in any pain. It took a good 15 minutes to unhook and cap all of the medicine he had. Then they asked if we were ready for the ventilator to be taken out. We had never seen him without it, but we were ready as we were ever going to be. They took it out, and for the first time in his short life, we were able to see him without a tube stuck down his throat. He was so beautiful and amazing, it broughts tears to our eyes. A few minutes later the doctor came to check if his heart was still beating. The room was so quiet, and Willie and I weren't really sure was she was doing. I had thought that as soon as the vent was taken out, he would be gone. But then I realized that it was not the case, and the were checking his heartbeat. A few more minutes after that, she checked again. And she whispered two words to me that will haunt me the rest of my life, I will never forget how they sounded, "MJ's gone." We sobbed, Willie and I, we both lost it, our son was gone, how was that ever possible?

We took a few more photos, and then I asked if my mom wanted to hold him, she kissed him goodbye and gave him back to me, and I gave him to my sister to kiss goodbye. The nurse had offered for us to give him a bath, or spend as much time with him as we wanted to. At first I thought it was something that I would want to do, but then we decided against it. MJ's body was getting cold, and I didn't want to remember him like that. I wanted to remember holding him alive, and feeling his warmth. I remember thinking it was odd that the nurse gave us warm blankets, and then I realized why she did. Looking back, I am glad that we did not bathe him. He had so many tubes coming out of him, and we would have had to work around them, and his body would have gotten colder, I don't really remember any of that, though. I simply remember my perfect little boy, wrapped in warmth, and how he fit so perfect in my arms.

We handed him over to the nurse and said our final goodbyes. Everything after is a blur, we signed some papers, authorized an autopsey, and within an hour we were on our way out. I remember feeling incredibly numb and almost as if I was having an out of body experience as we were leaving the hospital. My son was gone, and now I had to figure out how to live without him.

Welcome to Holland

2010-08-25T09:14:00.000-07:00

I have come across this a few times in the past, and each time I read it, I find it more and more appropriate for where I am at today. Our new life in "Holland" is never what we thought it would be. We always and only wanted "Italy". But as we come up to our first year without MJ, we are slowly starting to enjoy "Holland" and see the pure beauty in what our life is today. We have an absolutely amazing little boy named Will that we are in awe of each and every day. We have an equally amazing little boy in Heaven waiting for us. So many people love and remember him each and every day. My biggest fear after we lost MJ was that he was going to be forgotten. Now, almost a year after he died in my arms, I know he will never be forgotten. Not by our family, not our friends, and not by the wonderful amazing people who took care of him in the hospital when we could not be there.

While I still ache for "Italy", I can appreciate and love "Holland" . . . .

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of losing a child- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, " Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This Sunday

2010-08-23T12:00:00.000-07:00

This Sunday marks our first year without MJ. The days and weeks leading up to it have been pretty hard, a lot harder then I thought. I am actually thankful that the past few weeks have been so incredibly busy for me at work, that I haven't really had the time to think of anything but work for awhile. But I know that a crash is coming because I have been putting off my feelings for so long.

We are putting together a Butterflies and Balloons Rememeberance Release on Sunday to help us remember each and every day that MJ was here with us on the Earth. We are using this event as a fundraiser for MJ's Memories, our Project Sweet Peas local project that donates care packages to families with a baby in the NICU. We will release a Butterfly and Balloon on your behalf, if you cannot attend, with your personal message written on the balloon. We will take a photo and send it to you after the release. I know that it will be incredibly beautiful, and incredibly bittersweet for us.

Please let me know if you are interested in getting a butterfly and balloon for your angel.

Hugs,

Butterflies and Balloons Remembrance Release

2010-08-04T13:52:00.000-07:00

August 29, 2010 will mark the one year anniversary that MJ became an angel. In his memory we are hosting a fundraiser for MJ's Memories by releasing butterflies and balloons for the Butterflies and Balloons Rememberance Release. All proceeds will be used for funding MJ's Memories, which is a local project of Project Sweet Peas. Our mission is to provide a little touch of comfort for parents of children in the intensive care unites. This project was started by a group of parents who have one thing in common: we have seen how fragile a child's life can be. Through our experience we came together, now it is our turn to give back. We donate care packages to families at Children's Mercy Hospital in Kansas City, MO and Stormont Vail Hospital in Topeka, KS. We will also be donating 35 memory boxes to Children's Mercy Hospital for MJ's Angel Day.

For your $10 donation, a butterfly and balloon will be released in honor or memory of your child. You personal message will be written on the balloon, and a photograph will be taken and emailed to you.

Please consider helping us honor MJ and all of our angels who are gone too soon! Visit www.butterfliesandballoons.com for more information or to purchase your Butterfly and Balloon!

Three Years Ago

2010-07-28T19:46:00.000-07:00

I married the greatest man I will ever know. He has been my rock and my strength and I don't know how I could survive without him. I am so incredibly blessed to have such an amazing husband. No matter where I go or what I do, he is always beside me every step of the way. We have had many, many great times together. And we have also endured the worst possible thing to ever happen to someone when almost one year ago our son died.

I look at this picture above and I see two people madly in love with so much hope in their eyes and so much to look forward to. And I don't even know them anymore. We have been through so much we know the depths of heartache and loss, we've been through the worse and it's pretty hard to see the sunlight right now. We are jaded. Our hearts are broken, and the scar will always remain.

One year ago we still had that hope. One year ago both of our sons' were alive and MJ was having a great day. He had been transferred to Children's Mercy Hospital the day before and I was released from KU Med that day. We rushed right over to see MJ and were so happy when we realized that we could bring Will in to see his brother each and every day. This is one of the few complete family photos that we will ever have.

We have no clue what was ahead, and we were so happy to have our family of four together. You can see that MJ was starting to swell from all of the fluid that he was receiving via iv. Both Will and MJ were exactly six pounds each when they were born, but here is looks like MJ was an eight pound baby. He probably did weigh eight pounds, but he never should have that soon.

Things have been pretty hard for me as of late. I didn't think that they would. I thought the week before their birthday, and their birthday would be hard. But the feelings and emotions that I am having now are so much more intense and harder then I thought that they would be. I feel like I am in limbo and waiting for this crash to happen on August 29 (MJ's Angel Day), like I can't quite be happy, but I shouldn't be an emotional wreck just yet. But I am. I am an emotional wreck, and I don't know what I need or what I want. For example, last week a close friend was talking about how she knew SO many people with twins. And while she included me in that group, it felt so wrong and it hurt so much. You see, all of these twins she was talking about were living breathing, healthy babies. I will never know what its like to juggle two babies at the same time. I will never see my twins side by side. I will never get to laugh about their identical schedules or talk about the crazy bond that my twins have. The only time I held them together was the day that MJ died. I want to be included as a mother of twins, but I don't want to hear about twins. My emotions are so all over the place it's not even funny.

I have another friend that has a 16 month daughter and is due to give birth again in September. I was talking to her the other day and she told me how worried she is about how she will manage two babies. Um, hello? I would kill someone to have two babies. How do I even respond to that?

Sometimes I just feel like the people that I think should be sensitive and should know the right things to say or do are the ones that hurt the most. All I want is for MJ never to be forgotten and he was forgotten by people that have lost their babies and I never expected them to. And that hurts so very bad.

The people that I expect to forget MJ or the people that I expect to say hurtful things, don't necessarily hurt the worst. It's the unexpected that really just cuts me to the core.

And this time, these 35 days are so much harder then I ever thought they would be. I need some compassion, I need some sympathy, and I really just need someone to say, "What your feeling is okay, and normal, and it really, really sucks, and no matter what I love you." I need to know I am not crazy.

Emotions

2010-07-26T09:14:00.000-07:00

This time last year MJ was alive and fighting for his life. He was having an okay day and they were planning on weaning him for the oscillator, or 'jet vent'. This type of ventilator would shake his entire body as it pumped 400 breaths of oxygen in him each minute. I will never forget the sound of that machine or the way his body shook so hard. It was this evening one year ago that MJ started to turn for the worse. He was KU Medical Center and the doctors weren't sure if he would make it through the night. I remember posting on facebook for prayers and thinking I was being dramatic because there was no way that MJ would not live. The next morning the doctors came in and told us that he needed to be transferred to Children's Mercy Hospital so he would be able to go on ECMO if he needed to.

Today I am angry. I am angry that I have not been able to watch MJ grow up for the past year. I am angry that I was not able to celebrate his first birthday with him. I am so, so sad. I don't know how I am going to endure the next 34 days. It's a crazy feeling and an indescribable thought, knowing that one year ago my son was alive and fighting for his life, and this year today I have to look back and know what was ahead.

I am grumpy and irritable, and I sure as hell don't want to be at work. But this is the busiest time of the year for us (I am in college recruitment) and so I have to endure. I have to live and I have to move on. I don't want to and sometimes I don't know how I am going to.

I don't have a picture of MJ from when he was two days old. When he took a turn for the worse, he was moved into an isolation room in hopes that the noise and lights from the other babies around him would help, so the room was always as dark as it could be and we could only whisper when we were with him. I wish I would have snuck one anyway, I wish that I had a picture of him from each and every day that he was alive.

Happy Birthday to both of My Boys!

2010-07-25T08:40:00.000-07:00

One year ago today I gave birth to two of the most precious things I have ever laid eyes one. William Glen Skaggs IV was born at 3:26 am and Michael Joseph Skaggs was born at 3:27 am. I never thought I would have to celebrate their birthday without MJ, but I do and I am. We are having a small party for Will, and keepings things very light and easy. I feel as though at the moment I am seperating my emotions from the day. I can be and I am happy to see Will turn one. But my heart lies with MJ and the devastation of losing him.

I miss MJ so much, and I want him back so bad. Yesterday we spent the day making items for our gift bags for MJ's Memories, our project through Project Sweet Peas that we deliver care packages to families that have a baby in the NICU. We made baby eye masks, isolette name plaques, baby girl hair bows, and memory boxes for families that lose their babies. My mom said it best when she said that we should have been playing with two baby boys yesterday, but since we can't, we can do these things in MJ's name, and keep his memory and life alive. (I'll post some pictures later.)

Today is not has hard as I thought it would be, at least not now. I don't know what the party or tonight will bring.

I will never understand the path that God has chosen for us this side of Heaven, but the one thing that I can do is allow Him to lead us in this crazy thing called grief.

To my sweet, sweet Will: You have brought an incredible amount of smiles into our life the past year, and I don't know where I would be without you. Thank you for being such an incredible son and for brightening so many dark days. I love and appreciate you more then you will ever know.

To my angel MJ: Thank you for blessing us with your life for 35 precious days. There is nothing I want more in life then to be able to watch you grow up. You have changed my entire life and way of being. You have made me a better person and a better mother to your twin brother. I am better for knowing you. I love you with everything that I have.

Another Nightmare Coming True

2010-07-23T09:00:00.000-07:00

Today I realized why this past week has been so incredibly hard for me. When I was pregnant and I would think of the possibility that MJ would not make it, I would always wonder I could ever possibly celebrate Will's birthday without MJ. At the time, that was the worst thing for me, probably because I never actually thought that MJ would not survive. I always thought he would be a survivor. I always thought that my son would beat the odds and come home with us. I always imagined two high chairs and two babies covered in birthday cake. When I was pregnant my biggest nightmare was celebrating my twins' birthday with only one of them.

And now its coming true this weekend.

I keep telling myself to be happy and that we have to make Sunday all about Will. July 25 is Will's Day and August 29 (the day we lost MJ) is MJ's Day. But it is just so hard. Everyone always says that the anticipation is always harder then the actual day, and I really hope that it is the case on Sunday. I hope that I can smile and laugh and celebrate the life that God has allowed me watch grow up. I know that my heart will be heavy and MJ will be on my mind. But I really hope that I can give happiness to the son that is in my arms.

July 25

2010-07-22T08:38:00.000-07:00

Three days from now we will have a first birthday party for Will. Three days from now, one year ago I gave birth to two baby boys, Will and MJ. But we only celebrate one of their birthdays. July 25 of each and every year has to be a celebration, and it has to be about Will and only Will. We have to celebrate the life that God has allowed us to see each and every day. And that really just breaks my hearts a little.

I don't really want to celebrate just one of my son's lives. But that is how is has to be. We cannot be sad and cry (although I know I will want to, and I just might) on their birthday. That day has to always be about Will.

But I don't know if I can do it. The days leading up to this Sunday are getting harder, I find myself wanting to cry a little more each day. The tears and the sobs are getting stronger. I try not to really think about it, but it almost seems as though my body knows how sad my heart is, even though my mind tries to veer away from the heartache. The littlest things bring the tears these days. The grief is just all coming back.

It's just not fair. There is really no other way to put it, but it's simply not fair. It's hard, truly hard to know that there is still so much life to live without MJ. Sometimes the thought of it is just so incredibly overwhelming. To know that each and every day is yet another day I have to live without my son. But then again, each and every day is one day closer to when I can see him again.

This weekend is going to be hard, the 35 days after that are going to be hard, knowing that at that time last year, MJ was alive and fighting, and enduring so incredibly much.

Sometimes I just want to shout out to people I AM A MOTHER OF TWINS, MY SON LIVED, HE LIVED, AND HE FOUGHT SO HARD TO LIVE! But some people don't care, and that hurts so much.

For some reason this morning I was think a lot about two family members who choose not to acknowledge MJ. They didn't come to his funeral, they didn't call, and it really just feels like they don't care. And because of what they choose, they will never know Will either. That is a decision that Willie and I made, and I am very glad that we did. But it hurts, it hurts to know that they think of us as a family of three, that they think we only have one son. We are a family of four, and we have two sons. The rest of our lives, no matter how many children we have, MJ will always be included. Any family or friends that choose not to acknowledge both of our sons just can't be apart of our life. Its very plain and simple to us. But it still hurts. But that is our life, forever we will miss MJ, but he will forever be apart of our life.

A Time to Grieve

2010-07-18T14:30:00.000-07:00

Ecclesiates 3:1, 4
To everything there is a season, and a time to every purpose under the Heaven . . a time to weep and a time to laugh; a time to mourn and a time to dance

Recently I came aross the book, "When the Will of God is a Bitter Cup" by Dr. Don Woodard. (Thank you Desiree for recommending it!) I put it down a few weeks ago and decided this morning to pick it back up again. I think that I get the most of out a book the second time I read it, especially one on grief.

These past 11 months or so of my life have been filled with weeping and mourning and grieving. I finally feel as thought I am ready to laugh and ready to dance. Ready to enjoy life again. And it's okay to be happy. It's okay to smile and laugh and dance again. And I have to be able to do those things. I cannot miss out on watching Will grow up.

But sometimes I struggle with this. I struggle to know when the time is right to laugh and when the time is right to grieve. Somedays I can be okay and know that it really is okay to be happy. And then the sadness hits me out of nowhere, like when we were getting Will's one year pictures taken two days ago. It hit me when we were reviewing the photos and I thought, wow there should be two this cute. Or today when we were at the grocery store and Will was being fussy so I was carrying him on hip. We ran to the next aisle and got an economy size thing of toilet paper. I had Will on one hip and the toilet paper on the other hip, and I wondered what it would be like to have two babies on my hip. So many little things like that just hit me and then the waves of grief surround me.

So when is the time right to mourn? Or dance? Or weep? Or laugh? I don't think I will ever stop grieving. But I do think that the moments of weeping will be fewer and further in between, and the moments of laughter and dancing will be longer and my happiness will come back.

Grief Changes You

2010-07-17T14:29:00.000-07:00

Today we went to Children's Mercy Hospital to attend a Living with Grief Support Group meeting. It was so nice to be there, especially so close to the boys' birthday. It really is an incredible feeling to be with people who just 'get it'. To be able to talk about MJ and hear their children's story's, and then talk about the day to day struggles that have rocked my world the past year. It's a feeling that I can't really describe, being in a room ful of people that have had to say goodbye to their children incredibly too soon.

Maybe it's being back at the hospital that MJ lived and died, or maybe its going through those emotions and thoughts all over again, or maybe it's just that we are so close to their first birthday, but the whole day today has just been a little harder. The tears come just that much easier and the motivation to do what needs to be done is entirely gone. Today is a down day in this rollercoaster of grief. I suspect there are going to be many down days in the next few weeks as we go through our sons' birthdays and MJ's death day.

Maybe I am too hard on myself and should just live in the moment. But I want to be in a place in my grief where I will feel okay. Not quite good yet, but okay is what I am looking for. Most days are okay, but those days are coming fewer and further between.

It's strange, really. The first months after losing MJ I had no yearnings for feelings other then devastation. And then I started having good days, and the guilt swept in: guild that I could actually live and be happy without my son. And then I started having more good days then bad, and really wanted those good days. The past few days have been pretty hard, and it seems like they will get harder before they will get better. Grief really is a rollercoaster of ups and downs and everything in between.

And it changed me, it changed everything I knew and everything I thought I knew. I realized today how comforting it is to be around people who have walked in your shoes, and know what it feels like to lose a child. I haven't felt that comfortable in a room full of people in over a year. Sometimes I feel like I am more comfortable in tragedy then in joy. But don't misunderstand me, there was joy today, we laughed and we remembered our babies, and it was a comforting few hours. We all understood what its like to live your live with a broken heart.

While we were there we donated two memory boxes, one girl and one boy. We are planning on donating 35 at the end of August, one for each day that we were blessed with MJ's life. We wanted to bring two today to make sure that everything in them was okay to include. And everyone there just loved them. It was a good feeling, knowing that we can offer a little bit of comfort during such an incredibly hard time. Here are a few pictures of the memory boxes. They include in them a baby blanket, broken heart pendant with a poem, a wisp of hair bag with a poem, a disposable camera in case the parents don't have one, a baby cap, a stuffed animal, and a picture frame with a little baby angel on it.

Answers

2010-07-12T13:23:00.000-07:00

Only a couple people asked questions about me, so here goes my answers.

Has your loss brought you closer to your family and/or friends? So many are mixed on this so I was just wondering.
There are so many answers to this question! For myself and my husband, it has without a doubt brought us closer together. Sometimes I look at him and think about that song that has that line in it that goes, "And I thought I loved you then." Sure, we've had our fights and arguments, but everything that we have been through has brought us closer to each other then I ever imagined we could.

As far as family and friends, it's really a toss up. Overall, I have lost a few family members and friends along the way. I simply choose to end all contact with someone that refuses to acknowledge MJ. It's pretty sad that it's come to that. I don't understand how family, close family could pretend that MJ never existed. These family members (who shall remain nameless) didn't call and didn't come to his funeral, among so many other things that have happened since we lost MJ. The same goes with friends, I haven't even spoken to two of my bridesmaids since we lost MJ. One called and one sent a card, but I haven't heard anything from them since. And like I said in my previous post, I am in no way not taking any blame - friendship is a two way street, but at the same time, they should have been there when I needed them to - and they weren't.

The months just after MJ brought me further and further away from the rest of my family (except for my husband). I pushed everyone away and I just couldn't cope with how the world goes on, while I was standing still. It caused some relationships to suffer, because so many people just wanted to help me, but I didn't want their help, all I wanted was to whole up and remove myself from the world. Just in the last few months, things have gotten so much better. I am getting better emotionally, and I am working things out with those people that I pushed away. It's taken almost a year, and while I'm not quite there yet, someday I will be. And the people who still support me and love are the only people I want to be around anyway.

Do you work outside the home? If so, what do you do? Also, you are so great and I'm glad we have "met" even on such sad circumstances. Thanks for doing so much to raise awareness for CDH AND helping NICU parents!
I do :) I work for Friends University in Topeka, KS. I recruit for the associate, bachelors, and master's programs at our campus. I love my job and what I do. I think that education is a very important key to success and I am very glad that I can play a part in giving that to some people. I am also currently working on my master's degree in leadership and management. I have about a year and a half left in my program, which I am very excited about. It feels good to be back in the classroom, I think I enjoy it more now then I did in my undergrad work.

Since there weren't a whole lot of questions, here is a little bit more about me:
I grew up just outside of Chicago, IL, in a suburb called Mundelein. I played softball my whole life, and ended up getting a scholarship to Benedictine College, in Atchison, KS to play there. When I went there I thought it would be for four year, and then I would move back to Chicago and start my career. I never calculated falling in love and finding a husband! Willie and I met when I was a sophomore and he was a senior. We each took a class called Country and Social Line Dancing (I took it for fun, and he took it as a graduation requirement for his Physical Education degree). We got paired up as dance partners, and the rest as they say is history! We then moved to Kansas City, MO and lived there for a year before moving to Topeka and starting our family. We have two cats, Cammie and Charlie, and one dog, Lola. I swear each week we change our minds about moving or staying in Kansas! Part of us wants to move and get the heck out of here, and the other part wants to stay here and build our life. We just can't decide! I know that somehow, someday, it will all work out and wherever we go and whatever we do, it was meant to be. I always like to say, "If you want to see God laugh, tell him your plans." Life is so unexpected!

Clarity

2010-07-10T19:16:00.000-07:00

Last night I couldn't sleep and for some reason or another, I had a yearning to go through all of MJ's things. So at midnight last night, I looked at some pictures and touched his things and I read every card, cried and sobbed as I looked through each item of his and when I was done, I had a feeling of overwhelming comfort. It's ironic, really, when you think about it. Going through his things, reading the cards that people sent us when we lost him, I thought it would make my longing for him greater, but instead it brought me a great sense of peace and clarity. I know that MJ is in Heaven, I know that he has a greater purpose on the Earth, and that purpose is not yet complete, nor do I know what it is an its entirety. I know that part of his purpose was for us to find the amazing friends, who have become family to us, and give other families the touch of comfort they need through MJ's Memories. But I feel as though his greatest purpose is still yet to come. What it is, I do not know yet, but I truly feel as though my son will have part in something amazing and wonderful. And maybe I will never know that purpose is, but as his mother I feel this amazing connection with him still. It's a bond that can never be broken, that of a mother and child, and even though he is gone, I can still feel it.

So as I was going through all of his things, part of me wishes that we would have waited to put them away after we lost him. Part of me wishes that we would have simply left everything the way it was, and just shut the door to his room and grieve, I mean really truly grieve before we put away his things. But for a multitude of reasons, namely being this little man below, we couldn't.

We had to go through everything and pack it all up just 10 days after we lost him. We had Will that was just a newborn himself and although we were amazingly devastated, we had to be parents and give Will every ounce of energy we had. And we did. We faked it, we smiled through out tears, and we sobbed at night and we tried to give him as happy a babyhood as we could have.

Just now, 10 and half months after we lost MJ, do I feel as though I have some clarity on his death and his life. It's the clarity that makes me able to smile when I remember the memories that we so cherish. The clarity that enables me to believe that something beautiful has come out of something tragic. For so long we have been trying to get pregnant again. I so wanted to be able to believe that although we have been through the worst thing anyone could ever imagine, something beautiful can happen in its aftermath. For so long I wanted that beautiful thing to be a peaceful, beautiful pregnancy ending with a healthy baby. And while I still long to be pregnant again and be able to achieve a new hope that only a parent of an angel can have, I know that something beautiful has already happened.

It's the friendships that I have made and the support that I am able to give to other families. If MJ would have survived, we more then likely never would have joined Project Sweet Peas and we never would have met the amazing women that I am lucky to call my friends. In the aftermath of losing MJ and being completely absorbed with my grief, I lost a lot of friends and family. I haven't even spoken with two of my bridesmaids since we lost MJ. (Kind of pathetic, huh?) I realize friendship is a two way street, but at the same time, a phone call would have been nice when I was so completely devastated I could hardly do anything. The girls from PSP and a few others (you know who you are!) have helped me pick up the pieces of my broken life. While I will never feel completely whole again, I am starting to feel not so broken. I know that I can pick up the phone to anyone of them, at anytime, and it feels as though I have known them my entire life. And you wouldn't believe that I have only met two of them - and just a few weeks ago!

It's starting to feel as though the cloud is starting to lift and I can live again. I am so thankful for that. Tomorrow I start my second round of the fertility drug chlomid. The first round simply didn't work so we are doubling my dosage. I hope this works! While I thought I was ready for another pregnancy a long time ago, I am thankful for unanswered prayers. I finally have the clarity to truly appreciate what it will mean to be pregnant again, and I know that I have the support of some truly amazing people who I am honored to call my friends.

Delivering and Remembering

2010-07-06T08:20:00.000-07:00

So Friday we drove the little over an hour drive to Children's Mercy Hospital and delivered 20 more bags in MJ's memory. I thought this trip would be an easy one, stop in and say hi to the Child Life Specialist, and then go visit my sister for the afternoon. And overall, it was, but just as we got off of the highway, we pulled right behind a Children's Mercy Ambulance. And all those thoughts of that day that MJ got transferred came through my head.

When I was pregnant, we had two options to choose from to deliver. The first option was to deliver at KU Med Hospital, and hope for the best with MJ and that he would not need ECMO, or the heart and lung bypass machine to keep him alive. Every test that we could have done in utero, we did. And every test gave us a very optimistic outcome. His lung size looked good, he was a good size (weight), and most importantly, his liver was not in his chest cavity. Almost 70-80% of babies with CDH survive if their liver is 'down'.

The second option was to deliver at a nearby hospital and have MJ immediately transferred to Children's Mercy.

We chose to deliver at KU Med for multiple reasons: we thought that a transfer would be a lot on his little body, we did not want our boys to be separated, we did not want to be separated from each other, and we truly thought that MJ would not need ECMO.

The day after I delivered Will and MJ, the doctors came to us and said the were not sure if MJ was going to make it through the night. We cried, we prayed, and we sat by his side for as long as we could. And he made it through the night. We were so optimistic and so happy that he made it. Then the doctors came to us and said they thought that he would need to be transferred and they were making arrangements to do so. At that time, that was our worst fear. It was just about the most awful thing in the entire world to watch him be transferred. Three nurses and two paramedics came to KU Med to transfer MJ. He was hooked up to countless machines and each machine had to be unhooked and then hooked up to the transfer machines. It took about an hour and a half to complete everything. I stood and watched and sobbed the entire time. They then let us reach in and touch him before they whisked him away to the waiting ambulance. As soon as they left, Willie, my dad, and his dad all left to go be with MJ. My mom, and his mom stayed with Will and I. We were completely devastated. Although the hospital was only about ten minutes away, it felt as though we were separated by miles. The hospital offered to release Will and I one day early, but Will was starting to come down with some jaundice, so we decided that MJ was in the best possible hands that he could be in, with Willie, my dad, and his dad with him, and Will needed to be in the best place possible for him, if he needed that same level of care. The next day we were released, and Will's jaundice was much better.

Seeing that ambulance brought back all those same emotions of devastation and heartache. I thought of that child's parents and how they must be feeling, and how I hoped and prayed that the child in that ambulance was safe and would come home. It's crazy how seeing one thing can bring back so many emotions and literally take me back to that day. In some ways its comforting. When we lost MJ I was so incredibly scared that I would forget. And while some of the emotions that we felt at that time have faded on a daily basis, the littlest things bring it all back. The sadness, the heartache, but most of all, the joy and hope that we had in our hearts. A few weeks ago Will was screaming and crying at my sister's house when we were visiting them. Her boyfriend commented on how we all knew that Will's lungs were healthy. It felt like a stab in my heart because if MJ's lungs were healthy, we would have two screaming babies at that moment. And so many emotions came back. So the moments like that, while I cry and my heartaches, I long for them. Because then I know, I just know that my little boy is always with me and he lives forever in my heart.

So, after that looong tangent, here are some pictures from our delivery of bags. Will had a great time being there, almost like he remembers that place and he truly enjoys when we go. Maybe he remembers that's where his brother was and that's why he likes it so much.

On a side note, my post about Questions is still open! So if there is something that you want to ask me . . . Go Ahead!

145

2010-07-02T07:30:00.000-07:00

Gift bags that is. As of today at about 2 pm, we will have delivered 145 gift bags in MJ's name through MJ's Memories and Project Sweet Peas. In just nine short months. I feel very blessed that we have had so much support and commitment from family and friends. It is because of all of the support that we have been able to donate these gift bags and will continue to donate these gift bags. We have delivered bags to Stormont Vail Hospital in Topeka, KS, Children's Mercy Hospital in Kansas City, MO (where MJ lived and died), and we have sent five gift bags via mail to various people through our Gift Bag Request. Two days ago I sent out two bags to a family that had twin boys. And that was hard, knowing that they will more then likely bring their two boys home with them. But I am so glad knowing that I can do this in MJ's name, and keep his memory and his spirit alive.

This afternoon we head back to Children's Mercy to deliver 20 more bags. It's always hard going back there. I have feelings of dread and anxiety as we walk back into the hospital where my son died. I am just glad that we don't have to go up to the NICU. We deliver the bags to volunteer services, and it makes it just a little easier. I hope that I never have to walk into another NICU again.

So thank you to everyone who has donated, voted for us in the Pepsi Refresh Project, or simply gave us words of encouragement. When we started this project in October, just two and a half short months after we lost MJ, I never thought we would bring it to the scale that we have it today. I mean, I wanted to. I wanted to do something truly amazing and honor my son at the same time. And I think that we have, and then some.

Our next donation is planned for the end of August, in honor of the day that MJ died: August 29. On that day we are hosting a Butterfly and Balloon Rememberence Release in honor of him and all of the angel babies that have gone too soon. A Butterfly and Balloon (with your personal message) will be released that day on behalf of you (if you cannot come to the actual event) for a $10 donation to MJ's Memories. I am really excited about the Butterfly and Balloon Release, I think that it will be an amazing, yet very hard day, at the same time. Hard because it will mark one year without my son. And amazing because I can look back and think about how awesome his life was and everything that we have done in his memory.

Questions

2010-06-30T14:57:00.001-07:00

I have seen this being done on a few other blogs and I have just loved to read them, so here is my turn!

I am going to give you all the chance to find out a little more about me. You can ask me questions and I will answer them all in another post. You can ask me what ever you want, it can be about Will or MJ, or my husband, or family, or anything really!

I am looking forward to answering all of your questions, so start asking away!!!!

It's a Blessing and a Curse

2010-06-29T08:37:00.000-07:00

While we were at the CDH Summit this past week, many people asked me if my experience with losing one twin made my grief experience different. I don't really know how to answer that. I don't know any other experience in grief. (And God willing - I won't.) The only way to really sum it up is that it's a blessing and a curse.

It's a blessing because in my grief I have this amazing little boy to make me smile and hug and give kisses to. It's a curse because his every movement, his every smile, his every milestone is a reminder of what I am missing.

It's a blessing because I know what MJ would have looked like. I know what MJ's smile would be. It's a curse because I look at Will and see double. I can literally see MJ sitting right next to him and laughing right along with his brother.

It's a blessing because every time that Will achieves something, I know that MJ would have been right there with him. It's a curse because every time that Will achieves something, I know that MJ would have been right there with him.

It's a blessing because I didn't come home with empty arms. It's a curse because I came home with an empty arm.

It's a blessing because even through my tears and my heartache, I have so much. It's a curse because I know what I am missing, each and every day.

I could go on and on. Every day of my life is bittersweet, a blessing and a curse. People look at me and think that I had a singleton, but I didn't and I don't. I am forever a mother of twins, whether anyone chooses to recognize it or not. I carried two babies in my belly, I birthed two babies, I held two babies, I love two babies, and I had to say goodbye to one of them. I know that I am a mother of twins. To honor my twins, I got another tattoo while in Philadelphia - once you get one, they are addicting!

Will is William Glen Skaggs IV and MJ is for MJ :) I just love it so much, and I whenever I look down at it, I remember my twins.

A tragic, sometimes almost magic, beautiful week

2010-06-28T12:52:00.000-07:00

So this past week Willie, Will, and I packed up the car and headed East. We had a great week. Many days were filled with memories that I will always cherish, and many days were filled with tears as I remembered the little boy that will forever be missing from my life. We made the most of out just about every day out of the last seven.

Last Saturday we met with a family that I think will forever be in our lives. We met online, through a due date club on Babyfit.com. I knew prenatally that MJ would be born with CDH, their family did not know that their precious son, Eli would be born with CDH, as well. Because of our experiences with our sons, we are forever bonded, and I am so happy to have that connection with them! Eli was a CDH Warrior and came home in just 30 days! Recently he got rid of his feeding tube and is doing wonderfull now. We met for dinner and had it not been for Will and Eli getting overly exhausted, I think we would have stayed there all night! Will was just fascinated with Eli . . .

Eli, however, did not share the same fascination . . .

After our visit and stop in Indianapolis with them, we headed on over to Cortland, NY to visit my sister and boyfriend. We had a great time with them! Tracy is pregnant and due in Decemeber, which is very excited for our family. Because we live so far away, we don't get to see each other very often, so I was so excited that we were able to stay with them from Sunday to Wednesday. We did a lot of stuff with them, including strawberry picking, which Will absolutely LOVED!

Once we left on Wednesday, we decided to swing by New York City for some quick site seeing before heading to Philadelphia. It was well worth it! Neither of us had ever been before, so we were very excited to make a quick stop! We stopped by the Statue of Liberty and Ellis Island and drove past the World Trade Center sight before leaving. We even stopped for some delicious pizza!

After NYC, we finally made it to Philadelphia for the CDH Summit. We got to meet some wonderful, amazing people who are doing some wonderful, amazing things for CDH and CDH Research. There is so much to talk about - I really don't know where to begin!

The Children's Hospital of Philadelphia (CHOP) was there and we learned how they treat CDH babies, pre and post natally. To say this was hard to listen to was an understatement. We spoke with CHOP while I was pregnant and seriously considered going there to deliver Will and MJ. But in the end, we thought we had made the best decision and we stated in Kansas to deliver our boys. Hearing them talk about how they treat CDH babies, what there statistics are, and to see how dedicated these doctors are, well, those what-ifs started to creep into my mind. Don't get me wrong - Children's Mercy Hospital is a wonderful place to be, and they are full of top notch doctors who care, as well. I just don't think that I can't not think about the what-ifs. Especially when I was able to see CDH survivors right there in front of me. One of them was born just after Will and MJ, and he was doing great. Will and him got along quite well, and it was too cute for words. But at the same time, seeing Will interact with another little boy just his age, who survived CDH, really got to me. I suppose it always will, and I am going to have to see him play with other little boys for the rest of his life, so I better start sucking it up.

Day Two of the Summit was probably the most wonderful part of it all. Willie, my hubbie, delivered an amazing speech called "How to deal with people who just don't get it - Communicating Grief and Needs" He did so amazing - he even surprised me!

My favorite part was how he talked about how people try and throw you a life vest - but you really get an anchor instead. Basically just that people who are not in the Babyloss world will never get it, and too often they say the wrong thing, even if they don't mean to. (If anyone would like a copy of his presentation, please email me at megan@projectsweetpeas, and I can send it to you - it has wonderful tips on how to communicate and deal with people who don't get it)

Then the very best part came - the CDH Researchers presented. I was eagerly anticipating what they had to say the whole time. I always thought that we would never be able to participate in the Research Studies because we lost MJ. But I was wrong! We had an autopsy performed and they save samples for a few years, which means that we CAN participate. I was so excited because it means that MJ's life will help so many others. But that's not even the best part. Their presentation was on genes and how they are trying to find the gene that gives you CDH. Well, I raised my hand and explained that I have identical twin sons, one with CDH, and one without, so how can it be a gene? They said that somewhere, somehow, something happened to one of these genes and that gave MJ CDH. They then asked how I knew that they were identical twins, and I told them that my placenta was tested after birth. After their presentation came over and asked if we were willing to enroll in the CDH study because having identical twins like ours - one with CDH and one without is how they are going to get a breakthrough, because they can compare them to each other and see where and why there is a difference. Currently there are over 400 families in the study, with only eight sets of identical twins. I am so extremely happy to say that we are the ninth family of identical twins! To know that my sons, BOTH of my sons can contribute so greatly to research makes my heart fill with joy. MJ can and will go on to help and possibly save the lives of so many. I am filled with tears of happiness. My little boys are so incredibly special. So we all got our blood taken, Will, too, and he was not too fussy about it! He did great!

So to sum it all up, it was a tragic, yet sometimes almost magic, beautiful week. Tragic because I so missed my little boy and was constantly reminded of what we are missing. Yet magic because we were able to meet so many amazing people who have made an incredible difference in my life during the past 10 months. Beautiful because I know that this is only the beginning of great things for our family. My family of four is able to contribute to something incredible.

How's Motherhood Treating You?

2010-06-14T15:21:00.000-07:00

Today I was asked a very simple question. How's motherhood treating you? As I sit here and ponder the true answer to that question, not the one I gave, I feel as though I have two separate answers to that question. On one hand I am in love with every single minute of it. Will is such a happy baby and brings so much joy and laughter and love into my life. When I am with Will, it's almost as if everything is right in the world and there is no heartache or tears. Almost.

And then I remember. I look at Will, and I know there should be another smiling baby sitting right next to him. I should have two identical babies in my arms to love and hold and cherish. I know that MJ should be able to live his life just as Will does.

So how do I answer that question honestly? How do I explain that sometimes I feel as though I am living two separate lives? In one life I am a happy new mother with an amazing son. In the other life I feel as though my insides are shredded and the pain on knowing my son died in my arms is too overwhelming to bare. I don't think I could ever answer that question truthfully if and when I am asked again.

Lately I have been thinking a lot about twins and why my twins are separated by death. There has been a commercial for Best Buy on lately about sending two identical twins to buy the same thing at different stores. The commercial goes on to reveal that these identical twin women go on to marry two identical twin men. I hate that commercial. It's like every time I see it, I am reminded that my identical boys will never have that bond. They will never dress alike, they will never pretend to be each other, they will never get to stay up late and get in trouble together, there are so many things they will never get to do. It's so unfair. And not just for me, but for each of them. Will will never get to know his brother. He will never remember seeing him alive. He will only have pictures and the memories of his parents. Sometimes I just want to scream WHY?! WHY ME?! WHY MY TWINS?! How on earth did this happen? Why did it have to happen?

This has been a pretty rough past five or six days for me. Sometimes I feel as though nothing can ever be easy for me and Willie. I just want something to go our way. I want something to be easy for us. I don't understand how some people just have so many good things happen to them, and others have this hard and difficult road to follow. I want one thing, just one thing to go our way. We are trying and have been trying for baby number three for quite some time. I had to used the fertility drug chlomid to conceive Will and MJ. I was on the drug for two months, and both times I was able to ovulate. Two weeks ago was my first month on chlomid, and Friday I went in for a follicule scan to see if the chlomid was going to work. It didn't. So now we wait to hear back from my doctor to see what our plan is. He is out of the office until tomorrow, so we are just waiting now. I assume that next month we will try again with chlomid, just double the dosage and hope for the best. I don't know why, but for some reason I have this feeling that it's going to be even harder this time to conceive. I have this feeling that my c-section did a number on my uterus and I just won't be able to conceive without a lot of help. I am scared. I am frustrated. And I don't understand why yet again, life is only getting harder for us. So many people around me are popping up pregnant, without even trying, or planning for a baby. I just don't know why we can't be one of them. One thing, I really just want one thing to go our way.

However hard things may be in our life, I am always thankful for what I do have: an amazing husband and son, a wonderful family to fall back on for support, and a few close friends to get me through the really rough days. In closing, I found this poem on Rachel's blog and found it very fitting. If you are not a babyloss momma, please know that in no way am I trying to discredit you as a mother. It simply means, to me, that because of what I have endured, I am more thankful for what I do have.

Thoughts on Becoming a Mother

There are women that become mothers without effort,
without thought, without patience or loss and though
they are good mothers and love their children, I know
that I will be better.

I will be not be better because of genetics, or money or that
I have read more books but because I have struggled and
toiled for this child. I have longed and waited. I
have cried and prayed. I have endured and planned over
and over again.

Like most things in life, the people who truly have
appreciation are those who have struggled to attain
their dreams. I will notice EVERYTHING about my child.
I will take time to watch my child sleep, explore and
discover. I will marvel at this miracle every day for the
rest of my life.

I will be happy when I wake in the middle of the night
to the sound of my child, knowing that I can comfort,
hold and feed him and that I am not waking to take
another temperature, pop another pill, take another
shot or cry tears of a broken dream. My dream will be
crying for me.

I count myself blessed in this sense; that God has
given me this insight, this special vision with which
I will look upon my child that my friends will not
see.

Whether I parent a child I actually give birth to or a
child that God leads me to, I will not be careless
with my love.
I will be a better mother for all that I have endured.

I am a better wife, a better aunt, a better daughter,
neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my
own body. I have been tried by fire and hell many
never face, yet given time, I stood tall.

I have prevailed. I have succeeded. I have won.

So now, when others hurt around me, I do not run from
their pain in order to save myself discomfort. I see
it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it
less lonely. I have learned the immense power of
another hand holding tight to mine, of other eyes that
moisten as they learn to accept the harsh truth and
when life is beyond hard. I have learned a compassion
that only comes with walking in those shoes.

I have learned to appreciate life.

Yes I will be a wonderful mother.

-author unknown

A lot on my mind

2010-06-13T12:23:00.000-07:00

Today I am packing for the CDH Summit in Philadelphia that we are going to next week. We are making a road trip of it, and we are really excited. We get to meet another CDH momma that we met online on our way. When we were pregnant we belonged to a due date club on Baby Fit.com We both had CDH babies. I knew ahead of time, where she did not know ahead of time. We lost MJ, and her son survived and is doing wonderfully! I can't help but think about if we didn't know and what sort of emotions that we had. I don't konw which would be better, knowing about CDH or not.

Anyway, after our stop in Indianapolis to meet them, we are headed to my sisters for a few days before the Summit. I am really excited to see her and her boyfriend. They live in New York and we have never been there before, so it will be really great to see them and where they live. Then we head to Philadelphia for the Summit! Which is really exciting to finally be able to meet so many different people that I have met online, and never in person before. Plus, we have never been to Philadelphia before, so we are excited to eat some Philly Cheesesteaks! We have traveled with Will a few times before, via both car and plane, but this roadtrip is going to be quite a drive and a long time on the road. I hope that it all goes well and we don't have too many hiccups. But knowing life, we will :)

While I am packing today and getting things ready for our trip, I can't help but think how different life would be right now with MJ. We probably wouldn't be going to the Summit this week. MJ would hopefully be home from the hospital, but he may not, and our life would be drastically different. I look around our living room and its scattered with Will's toys. I think, if MJ was home right now, what would our living room look like? He probably would have come home on a ventilator or at least oxygen. He probably would have needed a feeding tube. What would our home look like? I remember when the doctor told us that MJ would be in the hospital 6-12 months. He was talking to us and was very frank and matter of fact. No emotion. I so desperatly did not want to cry in front of him. Dr. K was the head of the NICU and one of the most respected doctors at Children's Mercy. I bit my lip so hard to keep from crying, it bled. He left the room and I just lost it, I was holding Will and I was crying so bad. Our nurse that day, Phyllis, held me and I just sobbed. At the time I was thinking MJ would be home before Christmas, which would have put him at five months. I was thinking, how are we going to manage a year in here? And a ventilator at home? How will I ever figure it all out? But Phyllis, she talked to me and she said that no one had ever talked to us about MJ coming home because they didn't think that he ever would come home. And I remember her telling me that she truely though MJ was a survivor, that he was going to make it. She said she felt it in her heart, and the other nurses did, too. It made me feel so much better, and I kept repeating what she said in my head, he's a survivor, he's coming home. We lost MJ three days later.

I miss him so much, each and every single day. That hole in my heart sometimes seems so huge. So while today we pack to learn more about CDH and meet the people that have gotten me through the last nine months, I miss MJ even more then I did yesterday. However, I think that every day. Each day without my son makes me miss him more. I will never stop loving MJ. I will never stop missing MJ. I will always be his mother, and he will always be my son.

That's Quite a Story

2010-06-09T12:50:00.000-07:00

Yesterday I had a dermatologist appointment for a mole check. (Being Irish I have tons of moles and get them checked to make sure none look cancerous.) As my dermatologist was checking over my skin, he asked the dreaded question. "How many kids do you have?" I was hoping he wouldn't ask because last time I was there getting checked, the nurse asked me the same thing, and it was just maybe six to eight weeks after we lost MJ. I broke down crying last time, and I was hoping that she put it in my chart not to ask that question. So I told him, we had twins, and we lost one. Many people assume when I say that, that MJ was stillborn, and he asked if that was the case. So I then explained to him that MJ had CDH and what CDH was, and I was very surprised when he wanted to know all about CDH and MJ's short life.

It made me feel good to talk about MJ and tell someone about him. Hardly anybody asks about MJ any more, and he really is one of my favorite things to talk about. I think about him constantly and when someone asks about him - no matter how much I cry while I talk about him - it makes me feel good that I can tell someone else how hard he fought to live.

Just as he was leaving, he said, "Thank you for sharing that with me, that's quite a story you've got."

Well, it's not a story to me, it is part of my life. It's a part of my life that brought me the best 34 days of my life, and one day that will always be the worst day of my life. It's part of my life that makes me more comfortable in a hospital then around a newly, happy, pregnant women. It's part of my life when I had to sign three times for my son to be cut open by a surgeon attempting to save his life. It's when I had to make a decision that no parent should ever have to make, it's when death tore my heart out and took my son.

So my story, MJ's story, some people look at me in amazement when I tell it, shocked beyond belief at all that I have endured. And to me, it's my life, it's 35 days that have changed my entire way of thinking, it's shaken me to the core, and I wish so badly I could go back and do it all again. I wish so badly that I could take those 35 days with MJ and turn them into eternity.

Missing Him

2010-06-02T08:54:00.000-07:00

As each day passes without MJ, it brings along new feelings, thoughts, and heartaches. I wonder more and more each day what life would be like with identical twin boys. Would they look alike to me? How hard or how easy would it be to tell them apart? Would my heart be filled with joy every single second? (I know the answer to that one - YES). Will brings me so much joy - I can't help but wonder how different it would be with MJ along for the ride, too.

I never thought for one second that I would have to live without MJ. I mean, I thought about it, but I never really grasped the thought until probably a good month after we lost him. It didn't really hit me actually until about three months after we lost him. I didn't really accept it until six months. And now, we have been without him for nine months and four days, and I think I am accepting that I have accepted it. My days are filled with unexplainable highs, and unexplainable lows. One minute I am simply amazed with Will and the joy and love he brings to my heart. And the next minute I am crushed with grief.

And no one wants to talk about MJ anymore. It seems as though people are scared to talk about him. Scared that they will hurt my feelings, or bring back all the pain. The truth is that the pain will never go away, and I think about him constantly. Every sunny day, every rain drop, and everything in between. I think about him. I miss him. I am consumed with grief and missing my baby boy. And honestly, the pain - that raw emotion that brings it all back - it makes me feel closer to my son. I actually like feeling it all over again. Because it means that I haven't forgot, and I haven't let go, and honestly, I never will. The raw pain and the raw emotion are good. It's the kind of pain the cuts you to the core, and physically hurts. It feels like being stabbed over and over again in your stomach. But its good, it means I love him.

But I can go on. I have to go on. I owe it to my husband and my son here on Earth. I have to smile, and I have to live. And that hurts, too. It hurts knowing that I must live with a scar on my heart, one that will never be repaired and will never go away. I have to smile, and laugh, and love, and live. And I will, and I am.

But what I wouldn't give to be this girl again:

This is me the morning my water broke - I was so full of excitement for meeting my boys. I knew, I just knew that MJ would be one of the lucky CDH babies that survive and thrive. I couldn't wait to see both of my boys, and for MJ to have his surgery and come home. We had everything ready: our living was full with two swings, two bouncers, diapers and wipes stockpiled, two cribs in their room, the name Will hung above one, and MJ hung above the other, two of every outfit that we had, two high chairs, two car seats, and one double stroller.

I was ready to become a mother of twins. I still am - just never in the way that I imagined.

It's Hard Not to Get Excited

2010-05-26T13:45:00.000-07:00

When so many things are going right and are going to happen in the next few months. Everything with the Pepsi Grant is going to be amazing, I just know it! We should receive the funds sometime this week, along with a package full of goodies from Pepsi. I can't wait for this to happen! Once this does, then we will start ordering all of the things to put in our gift bags - $18,000 worth of stuff!!! We have figured that at absolute minimum, Project Sweet Peas as a whole will be able to donate 600 gift bags with the grant money. Think about this - that means that 600 families will be able to feel the love and comfort that we include in our gift bags! I am SO excited about this! There are so many other things that are the brink of happening with Pepsi - and I want to so badly announce all of them, but I don't want to get too excited and then something fall through. So I am going to simply let them happen and embrace them as they come. I don't want to set myself up for disappointment if something falls through. But they are super amazing!!

It is our goal as a Local Project to donate 50 gift bags and 35 Memory Boxes on August 29, 2010. This day marks the one year anniversary that we lost MJ - it is his Angel Day. So what have we planned for MJ's Angel Day? Something so amazing that I just cannot keep my mouth shut about it. We are planning a fundraiser in MJ's honor that day. We are planning a Butterflies and Balloons Rememberance Release. That day we will be releasing Butterflies and Balloons in his memory and for all of the angel babies that are no longer with us. Ten dollars will purchase one butterfly and one balloon to be released. Your presence is not necessary! If you cannot come to the Butterflies and Balloons Rememberance Release, then your butterfly and balloon will be released on your behalf. A message will be written on each balloon and a photo of the release will be emailed to you! All proceeds benefit MJ's Memories, a local project of Project Sweet Peas. I am so excited about this! For more information on the Butterfly and Balloon Rememberance Release, please email me at megan@projectsweetpeas.com

I think this is the most perfect way to spend MJ's Angel Day. At his service, we released 35 butterflies, one for each day that we had MJ with us. One of the butterflies landed on his twins face just before it flew away. I know that it was my baby boy saying goodbye one last time. I will never forget that moment when I looked down and on Will's cheek, a little butterfly kissed him goodbye. Butterflies will always hold a very special place in my heart now.

We Made it Through

2010-05-10T07:27:00.000-07:00

The weekend, we made it through the weekend. I can't believe how fast Will recovered from surgery, it seems as though it never even happened, he barely missed a beat. We had to stay the night at the hospital because he was born at 36 weeks, but I swear it was only three hours post surgery and he was back to his normal self. A little cranky, but overall, just my happy, smiley baby.

Just a few hours after surgery and playing already!

So many things brought back so many memories of MJ. Being in the hospital, eating cafeteria food, waiting to speak with doctors about how the surgery went, all of the wires and such hooked up to one of my babies, so many little things made me think of MJ and our time with him. But they were good memories, ones that made me smile and think of my amazing little boy and how he fought so hard for a shot at life. And Will is so much like his brother! He hated having his blood pressure taken, and when it was taken, it would never work right, just like MJ. The wires attached to his chest were falling off every two minutes, just like MJ. So many little things that Will went through and how he went through it, well, it just made me smile because it shows that my little boys are twins, and are so much alike. I am so thankful for the 35 days we spent with MJ, because we got to know him, and I can look at Will and think, MJ was just like that.

For the first time ever I was able to think of MJ and smile, and appreciate the time we spent with him, instead of feeling my heart rip out.We were able to talk about MJ and smile, instead of cry. We had been having a few really good days, my husband and I.

And yesterday, Mother's Day, wow it was a whole lot harder then I ever thought it was going to be. Since we had been having good days, I thought it would make yesterday easier. I thought I would be able to smile and appreciate the time, the precious time we had with MJ. But that was not the case. Yesterday morning I felt like my heart was ripping out all over again. It seemed as though the entire last week that we spent with MJ went through my mind over and over again, and I broke all over again. The morning was really rough. We cried. A lot.

But we did manage to salvage the day and go on a picnic and then to the zoo. My husband made it a wonderful afternoon for us, and I am so thankful for that. I just wish I had two babies to do this with . . . .

Tomorrow is gonna be hard.

2010-05-06T15:51:00.000-07:00

MJ's twin, Will is going to have surgery. It's a minor surgery, and we may not even need to stay in over night. He has a hernia in his groin that needs to be repaired. It's something that he was born with and didn't pop out until a few weeks ago. It should be a piece of cake.

When we saw the pediatrician and he said that Will would need surgery I basically lost it right there in the room. The thought of having to sign for another surgery for one of my babies just crushed me. In MJ's short 35 days, he had three surgeries, and each one got harder. He had one surgery to be hooked up to the ECMO machine (where they actually hook up cannula's to his corotad (sp?) artery to take his blood out of his body, pump it through a machine to oxygenate it, and then pump it back into his body), one surgery to fix his diaphragm and move all of his stomach organs out of his chest cavity, and one surgery to be disconnected from the ECMO machine. I remember signing for MJ's last surgery and walking out of the operating room and just feeling crushed. How on Earth could my little tiny baby endure so much in such a short amount of time? We lost MJ four days after his last surgery.

And not only do we have to go through another surgery, but it's for a hernia. The words hernia and surgery mean horrible things to me. The words hernia, and surgery relating to one of my babies means this to me:

Can you find MJ? He is in the middle behind the bears.

This is the what we walked into each day as we sat by MJ's side, fighting with him. The day before his hernia repair surgery he was placed on this makeshift bed on the operating table. He was 16 days old. The only time he left this table thereafter was to be placed in my arms for me to hold for the first and last time. This is what hernia and surgery mean to me. Somehow, I can't help but blame my own inadequacies for the hernia's in both of my sons. Will is lucky enough to have a hernia in his groin, and MJ had one in his diaphragm. If both of my boys have them, then they must be related, right? And if they are related, then it must be something to do with me and my body.

I don't know if I am right or wrong, but I know that tomorrow as I have to for the fourth time hand my baby over to a doctor so he can operate on him, I'm gonna be a wreck. I hope that tomorrow goes smoothly and we do not have to stay the night. I hope that Will doesn't feel any pain, and that his brother will be right by his side throughout everything. And if you pray, it would mean a whole lot to me if you would think about Will tomorrow morning.

Sweet Little Moments

2010-05-04T07:48:00.000-07:00

We got Will's nine month pictures taken last night. These moments are always so bittersweet for me. While I love getting those pictures and showing them off, these little milestones are one of the biggest reminders that there should be two little boys in those pictures, not just one.

We always have Will photographed with something of MJ's when we take him to get photos done. It's always hard, but for some reason I thought it would be a little easier this time. Yesterday was the third time we have taken Will for these milestone photos.

This time we brought along one of MJ's teddy bears. . .

Seeing Will play with this teddy bear, it just really got to me. I literally just broke down right at JC Penny. I remember when MJ got this bear. He got it just before his surgery. We got word that his surgery was planned, and so my dad drove down from Chicago with it. I remember so many things about this bear, and seeing Will with it just brought everything back. It's crazy how one minute I can be fawning over Will, excited because he looks just too darn cute getting his picture taken, and then a sweet little moment like the one above happens, and I feel literally as though I am swooshed into the past. I remember walking into the operating room they had set up for MJ overnight. You see, MJ was so critical that they didn't feel as though he could handle being moved to another floor where they do surgeries at. For babies like MJ, the NICU has a makeshift operating room, and the night before his surgery they moved him there. I remember feeling as though we were at the top of the hill, making our way down the hill and on to bringing him home. In mind, if he could survive his surgery, he had already done the hardest part. It never crossed my mind that MJ's battle would be too much for him to overcome.

I wish so badly that Will was playing with MJ, not MJ's teddy bear. Sweet little moments from my sweet little baby: they bring so much heartache. But the heartache is good, the pain is the reminder that it was all real. That I did have two tiny babies, that I am a mother of twins, and that my love for my son transcends death.

What a Wild Week!

2010-05-02T14:41:00.000-07:00

I know I haven't posted in forever, but this week has just been very nuts for me. To start off, I want to say THANK YOU to everyone that voted for us and helped us win the Pepsi Refresh Everything Grant for $25,000!!!! We are still unofficial, as we are in a two week confirmation stage. Basically, Pepsi wants to make sure that we are a legit organization. After all, they aren't just going to shell out $25,000 to just anyone! I have been working on paperwork all weekend once they announced the winners Saturday morning - but I am SO glad to do it. Not only did we place in the Top Ten, we acutally placed FIRST out of all of the projects going for $25,000, which I think was around 500. I just can't believe it - it is such an honor to be able to carry out our mission! So once again, THANK YOU.

So back to my crazy past few days. Thursday was eight months since we lost MJ. Every month, when that number of months get bigger, it gets harder. Emotionally is just a lot for me to take in. It seems like it always takes me a few days to recover from going through all of the emotions of losing him again. I just ache and ache for my son. And those anniversary days make the ache worse. And even though its hard, and I cry and the pain is very, very real. It's a good thing. It makes me feel close to MJ. It makes me remember him and every little thing about him. Its how I know that I will never, ever forget him. Nor will I ever stop loving him.

So after an emotionally charged Thursday, Friday came and was the last day of voting. And I couldn't believe that we kept moving UP! We finished the voting in the top place, which really, just still amazes me.

Saturday morning we got up and headed out to Kansas City for the March of Dimes walk. We walked with Team Lillian. Lillian is the daughter of friends of ours. She was born at 24 weeks gestation and has been in the hospital for about two months. She has faced a lot of battles, but seems to be doing well and is one the right track to coming home. Lillian has a twin, Addilyn that passed away at 21 weeks gestation. We brought along 5 balloons that we walked with, one balloon for each week that MJ lived. At the end of the walk we released them. Here are a few photos from the walk. . .

Team Lillian

Releasing Balloons for MJ

Right after we did the walk, we headed over the Children's Mercy Hospital, where MJ lived, and donated 30 more care packages. We are so blessed to be able to do this in MJ's name. It means so much to us, I really just can't explain it. And, at the same time we are doing this for the families who were in the same situation for us.

Willie with 30 PSP Bags!

Donating the Bags

After getting home on Saturday, we have been working so hard on the Pepsi Grant Paperwork. We are getting a lot of help figuring it all out from Pepsi, and we have a small amount of time to get it done in. But the work is completely worth it, and I couldn't be happier to do it.

Day 25 of 30 Days of Project Sweet Peas!

2010-04-26T14:50:00.000-07:00

We are so close the end and I am getting so excited!! Please don't forget to vote today - only four more days of voting!!! You can vote HERE!

Wanna know some interesting facts about Project Sweet Peas?

- We have donated over 350 care packages since starting in July 2009
- We donate care packages to hospitals in 14 states and 2 countries!
- We started with just three local projects and have grown to 15 since July 2009
- All project leaders are 100% responsible for each respective local project - from gathering donations, to filling bags, to delivering bags to hospitals
- I have only met ONE other project leader since joining in October 2009, Theresa from Donny's Shining Light
- I have never been around a more positive and amazing group of women in my entire life!
- Winning this grant from Pepsi will mean so many things to each and every one of us, I don't think I could begin to explain!

So please, don't forget to vote today!

Day 25 of 30 Days of Project Sweet Peas!

2010-04-25T18:53:00.000-07:00

Less the one week left of voting! Please don't forget to vote every day through Friday so we can win this grant!!! Today we finished filling 30 more bags to donate to Children's Mercy Hospital. We have completely depleted our supply so we are in desperate need of this grant so that we can continue to donate these bags! Here are a few pictures of today :) And before you look, please VOTE!

Day 23 of 30 Days of Project Sweet Peas!

2010-04-23T12:39:00.000-07:00

Not a whole lot to update today. Just wanted to say hi and wish everyone a great weekend! Please check out the Project Sweet Peas blog for more information about our new local projects. Don't forget to vote! Only 8 days left of voting, and we are so close to getting the grant!

Thanks!

Day 22 of 30 Days of Project Sweet Peas!

2010-04-22T08:58:00.000-07:00

Yes, I know I forgot yesterday, too. I am a bad blogger, LOL. Only eight days left of voting!!! Please remember to vote through the end of the month! We have slipped down to number three, and while number three is amazing, we don't want to keep slipping, so here is the link once again to vote:

http://www.refresheverything.com/projectsweetpea

Thanks for your vote!

Day 20 of 30 Days of Project Sweet Peas!

2010-04-20T11:11:00.000-07:00

WE ARE IN FIRST PLACE!!!

I can't believe it. I am just in awe that we have come this far. When we first applied for this grant, I thought it would a long shot to get it. Even just ten days ago, I thought we would be lucky to be in the top twenty. Now, and I starting to believe that we can win. I am just so nervous about it! There are still eleven voting days left, and I just don't want to jinx us and get too excited that we may just get this grant. I think about all the different families that all 15 local projects can help, and it just amazes me.

Today I will be highlighting a new local project of ours: Nimkee Blessings. Nimkee Blessings donates bags to The Hospital for Sick Children in Toronto, Ontario. For more information on Nimkee Blessings, please contact Michelle at michelle@projectsweetpeas.com Here is Nimkee's story . . .

In July 2006, I found out that I was unexpectedly expecting. I was scared, nervous, but elated and hopeful that this pregnancy would mean great things for me and my family. I embraced this new life that was growing inside of me, looking forward to our future together. I imagined what the next summer would be like with a new baby here. I pictured the next mother’s day with a little one in my arms. My boys were happy and excited….life was good.

I called my midwife and arranged to begin my prenatal journey as healthy as possible. One day she was here to draw some blood for regular prenatal tests and she asked if I would like her to draw a little bit extra to send away for a ‘maternal serum test’. I had never opted for this in the past, but this time I said, “Sure, go for it, it will give me one less thing to worry about.”

Several years ago in August of 1999, I delivered a stillborn son named Noah-Alexander. I already had 2 sons, and I went on to plan 2 more pregnancies after his birth. Each pregnancy was very nerve-wracking for obvious reasons, and every day of those subsequent pregnancies was a joy, and a struggle, and resulted in 2 more healthy sons. I told myself that lightning won’t strike twice and tried to relax and enjoy this new journey.

I remember the day that my midwife phoned to let me know she had some results for me. She stopped by to explain to me that there was a 1:8 chance of my baby having Trisomy 18. I had never heard of it. She told me it’s a chromosomal abnormality and that she had made me an appointment with a genetic counselor in the city nearly 2 hrs away. I attended that appointment and was told what Trisomy 18 is, and was offered termination, and/or a chance to have an amniocentesis performed. I opted for the amnio to find out for sure what we were possibly dealing with. I could not envision myself spending the duration of the pregnancy wondering what might happen.

I went to Toronto, nearly 8 hrs south of here, to North York General Hospital to have the amnio performed. I was frightened about the risks, but everything went fine. 3 days later I received the preliminary FISH (fluorescence in situ hybridization) test results which indicated that Trisomy 13 was detected in his cell sample. The final results came back a couple of weeks later and told me that I was expecting another son, and he did indeed have Full Trisomy 13, aka Patau Syndrome, in EVERY single cell of his entire body, meaning he had 3 copies of the 13^th chromosome instead of just the 2 that he should have received—one from his father, one from myself.

More information about Trisomy 13 and Bennett-Chadlen can be found here at this site: http://www.livingwithtrisomy13.org/MemoriesOfBennett.htm

I chose to embrace my son’s diagnosis and give him as much love and comfort as I could during our time together. I was told that he may be premature, stillborn before Christmas, and I was very frightened as I remembered what I went through with Noah-Alexander so many years ago. This time I was prepared and decided to preplan his funeral arrangements in the event that it should occur suddenly. I wanted to be able to give him the type of service that I hadn’t been able to give to Noah. I knew that when or if it should happen, that I would be recovering from childbirth, and grieving, possibly unable to think clearly and plan as thoroughly as I would like to. I didn’t want to have any regrets.

I travelled to Toronto once again to have level II ultrasounds, and fetal echocardiograms to see if any birth defects could be detected. The doctors had noted the possibility of a non-severe Congenital Diaphragmatic Hernia. I requested to have a Fetal MRI to see what we were dealing with. He had no organs up in his chest and his lungs developed normally, which was great news! These CDH babies do require immediate intubation at birth so that they don’t cry and possibly swallow air which could cause the internal organs and intestines to swell up and make it more difficult to fit everything back in place during the surgical repair. They were unable to see clearly if there was indeed a CDH, but we prepared for that just in case.

I made arrangements to have the remainder of my prenatal appointments in Toronto at Mount Sinai Hospital, and Bennett-Chadlen would be transferred across the road and treated at the Hospital for Sick Children in Toronto, Ontario, Canada.

Bennett-Chadlen was born on March 29^th, 2007, 2 days overdue. He was very alert and responsive following birth and intubation and did not require the paralyzing sedatives because he was not fighting the ventilator. When I was able to see him for the first time, I spoke his name and he turned his head to look at me. He heard me and knew I was there! It was the most amazing feeling in the world. My friend quickly snapped a photo of him looking right at me, and another one looking at her because he saw the flash of the camera. I cherish these photos more than words can express.

The surgeon came over to Mount Sinai to see him and told us the wonderful news that he appeared to be doing very well and may not require the surgical repair. He said he was transferring him to do further tests, and would be able to extubate Bennett-Chadlen if the hernia was not detected.

The next time I saw my boy later in the day, he was unresponsive and on full life-support. He fought hard and lived his life in 8 days, passing away due to unexpected complications on Good Friday, April 6^th, 2007. Easter is always a period of remembrance, as well as his birth and angel dates.

We miss him very much, and are very happy that we had the chance to hold him and sing to him as he passed away in our arms, surrounded by his siblings, family, and dear friends.

We had a chance to have a prenatal photo shoot taken by photographer Heather Renee Morgan of Lifespark.ca, and she also did a photo shoot while he was in the NICU. On his final day we had a photographer come from a wonderful organization called Now I Lay Me Down To Sleep and he took photos of all of us surrounding Nimkee with unconditional love. I highly recommend that all new mothers-to-be of babies who have been prenatally diagnosed with any type of possible complication should be sure and get these photo mementos to hold onto. I have made my photos into video montages, and display Bennett-Chadlen’s keepsakes in my home so others can know he is still very real to us.

I want to be able to reach out and give love, comfort, and support to others as they to endure the difficult NICU days. It’s difficult to prepare for such an emotionally charged period, but we will strive to do our best to provide others with things that will help make the NICU experience a little more positive, comfortable and memorable.

We will also make available some Bennett Blankets and Bennett Bunnies to give as sibling gifts. My boys have these and they sleep with them every night, drifting off to sleep cuddled in their baby brother’s “hugs”.

Much love, peace, and Nimkee blessings to you and yours……Melissa & family

Day 19 of 30 Days of Project Sweet Peas!

2010-04-19T14:34:00.000-07:00

Wow! The weekend went by waayyy too fast! I can't believe I simply didn't have anytime to post anything, so I missed two days of 30 Days of Project Sweet Peas :(

But I am back today and I am SO happy to announce that currently we are NUMBER TWO in the Pepsi Refresh Grant!!! How amazing is that????? We still have 12 days left of voting, so we still need votes every day - we went up in the polls real fast, so we can certainly go down real fast. Thank you all so much for your continued support!!

Today I would like to highlight another Local Project that is part of Project Sweet Peas: Joey's Wings. Joey's Wings is a newer Local Project and Sara has been a great addition! I was so happy when she joined us recently! Joey's Wings donates bags to UCONN Health Center and John Dempsey Hospital in Connecticut. For more information on Joey's Wings, please contact Sara at sara@projectsweetpeas.com Here is Joey's Story . . .

My name is Sara Walsh and this is my son Joey’s story…the story of an angel.

My pregnancy was uneventful, and halfway through we had our second ultrasound to find out the sex of our baby. She confirmed our due date of January 8, 2008 and informed us that we needed to see one of the doctors to review the ultrasound. I never expected the doctor to give us the news that our baby had a Congenital Diaphragmatic Hernia (CDH for short). It wasn’t until I got home and did a little research that reality hit me. Only 50% of CDH babies survive and those that do live can have mild to severe health problems.

We learned we were expecting a boy, Joseph Frederick Walsh, our Joey. Joey had a left CDH that allowed his intestines, stomach and part of his liver to migrate into his chest cavity. This pushed his heart against the right side of his chest and was affecting his lung development. We also found that Joey had a heart defect, but the main concern was his lungs. The outcome for babies with CDH is very difficult to diagnose prenatally. The doctors felt that Joey’s CDH wasn’t severe, but that wasn’t a good indication for survival. It all came down to how well developed his lungs were when he was born. I cherished my pregnancy, met with specialists and prepared the best I could.

I was not prepared when I went into labor more than 5 weeks early at 3:30 in the morning on November 30, 2007. By the time I reached the hospital an hour later, I was already 5 cm dilated. They could not stop the labor; Joey was coming today. I delivered Joey at 3:17 p.m., 6 pounds and 5 ounces. The neonatal doctor had to prevent Joey from crying when he was born to avoid aspiration, so I never heard him cry. Two hours later, the neonatologists came in and updated us on Joey’s status. Joey did not have a right lung and his small, fragile left lung popped during ventilation. His chest cavity was filling with air and his organs were shutting down from lack of oxygen. There were very few options and it was obvious that the doctors weren’t hopeful for any chance of survival.

We met Joey around 6 p.m. He was hooked up to monitors and a ventilator. We held his hands, kissed his toes. I kissed his forehead and he opened his eyes for me. He looked at me as if he was telling me, “Mommy it’s okay, you did all you could”. We loved him and didn’t want him to suffer. We took Joey off ventilation and held him as he passed away, around 7:56 p.m.

Joey taught me to appreciate what I have, not what I lost. I am grateful to have had Joey for the short time that I did. I also learned that there is no way to completely prepare yourself, no matter how ready you think you are. We were lucky that the staff at the hospital had an outfit for Joey to wear, a stuffed animal for him, hand and foot print molds and a journal with a lock of his hair. I cherish these things and wouldn’t want any parent to not have the same.

Joey’s Wings is our opportunity to help others the way we received help. I couldn’t think of a better way to preserve Joey’s memory than by helping others.

Day 16 of 30 Days of Project Sweet Peas!

2010-04-16T14:31:00.000-07:00

I didn't post anything yesterday. Time simply got away from me and Day 15 came and went. However, yesterday was a very big day! We delivered 20 more care packages to Stormont Vail Hospital! Willie and I ran over there on our lunch breaks and delivered the bags. Then I got back to work and immediately after work, I went to night class (I am pursuing my master's degree). So that is my excuse for not posting . . . . but I do have some great news today!

We are NUMBER FIVE in the Pepsi Refresh Rankings!! I am so excited to say that, it really just warms my heart. I am also so happy to say that as of yesterday, Project Sweet Peas as a whole has donated over 350 care packages since July 2009! How amazing is that?

A little bit ago I received this note

Megan,

Thank you so much for your gifts. We are so sorry to here for your loss, but I truly believe you are keeping little MJ's Spirit alive through this project. Our daughter was born at almost 31 weeks and for the most part we have had a bunch of really "good" days. She truly is the most precious thing in our life and there is nothing we would not do for her as I am sure was the case through your difficult times. I have know doubt your little boys spirit was here yesterday with us. I say this because yesterday was not a "good" day, she hit a rough patch which included fluid pressing on her young lungs hampering her ability to breathe. To say we were down is an understatement, but then your "bundle of joy" came through the door. You and MJ truly lifted our spirits and I am proud to say that today she is feeling much better as are we. Thank you so much it means the world to us.

(I removed names for privacy reasons).

What a great note! It totally made my day, as I have been having an off day today. I just miss MJ terribly. I simply feel lost today. It's almost an indescribable feeling, one that only a mother of an angel can feel, I think. I feel like I am roaming through time, with no direction, and simply lost. My heart aches for my baby boy that should be here on earth with me. My heart aches for MJ. My son, who should be here to brighten my days and warm my heart, is gone. Sometimes it still just doesn't feel real.

Thank you all so much for your support of Project Sweet Peas and the Pepsi Refresh Grant. Please continue to vote as there are still 15 days left until the Top Ten winners are announced.

Thank you!!!

Sometimes Goodbye is a Second Chance

2010-04-14T10:23:00.000-07:00

I know that I have written about this a few times before, but somehow this is just echoing through my mind today. I know that if MJ would have survived he would live a life of great pain. He would have had severe brain damage due to the lack of oxygen his brain received that last day of his life (and the numerous other times that his oxygen stats plunged). He would have more then likely lived with a tracheotomy for several years, he may still have been living in the NICU with no homecoming date in sight. MJ was born with a massive birth defect and simply put, was dealt a pretty shitty deck of cards. I would give anything to have my baby boy back, healthy and whole, with a complete diaphragm and two whole lungs. But that is not my life, and my son is no longer with us.

I remember the exact moment that I hear the song Second Chance by Shinedown. It was just a few weeks after we found out that MJ would be born with CDH. I was driving home from work. Willie was gone that evening at class. I was turning left onto 45th street from Topeka Blvd. I was wearing a white maternity wrap and a brown skirt. I heard that song and put my hand on my belly and just cried. That was the first moment that I thought 'what if he doesn't make it, what if I have to live without my son, how in the hell would I ever do it?' I remember thinking of birthday parties for Will without MJ and so many other things. And then I cried for even thinking that. I felt so guilty that I could even think about MJ not beating CDH.

And then MJ was born, and our worst fears were thrown at us: he would have to be transferred to Children's Mercy, then he would have to be put on ECMO, then he would have to have surgery on ECMO, then maybe he couldn't come off of ECMO, and then it happened: Our son became an Angel.

And then so many times we heard that song, and those lines "Tell my mother, tell my father, I've done the best I can, To make them realize, this is my life, I hope they understand, I'm not angry, I'm just saying, Sometimes Goodbye is a Second Chance."

And then we started MJ's Memories and we started donating these care packages to families of babies just like MJ. And still, we kept hearing that song over and over again. And then I started thinking, maybe this is his second chance. It's his chance to live in Heaven, pain free, and have us honor his memory every day.

That's what I think anyway. This whole Pepsi Refresh grant has really shown me some amazing things. It has shown me how so many people are so willing to totally get behind us and support us. It shows me how 15 families, each affected by their own tragedy or miracle can come together and not only support one another, but people we haven't even met and most likely won't meet. I am lucky enough to 'know' one of the families that received one of our bags through Facebook :) It shows me how special each one of those 15 children is. Whether they live in heaven, or they live on Earth, each one of them have impacted and will continue to impact thousands of people. And for that I am so grateful. Grateful that my son can live on through so many people, and that so many people care enough to let him.

So thank you so much for voting for us everyday. There are only 16 more voting days left, so please, please, please, continue to vote so that we can keep doing what we are doing. THANK YOU!!

http://www.refresheverything.com/projectsweetpea

On a side note, we just received a wonderful note from the Good Knight Network letting us know that they have pulled together their 2,000 volunteers to vote for Project Sweet Peas!! Let's show them how much we appreciate their votes by voting for them as well! http://www.refresheverything.com/SuperSafetyProjectAnd

Day 13 of 30 Days of Project Sweet Peas Giveaway!

2010-04-13T11:20:00.000-07:00

We have applied for a grant through the Pepsi Refresh Project, and have been selected as a finalist to win a $25,000 grant!! So here is how you can help us: vote once a day, every day for Project Sweet Peas to win. We need to be in the top ten at the end of the month to win. And to entice you to help us out and vote every day, I am doing a 30 Days of Project Sweet Peas giveaway! Everyday in the month of April I will be writing about the amazing things going on in Project Sweet Peas. And if you leave a comment that you voted each day, I will randomly pick one of these comments to win an Awareness Braceletof your choice! I make awareness bracelets of all colors, and I have a Pregnancy and Infant Loss Charm Bracelet featured right now.

**Please note that you must leave a comment each day to qualify for the giveaway for that day. **

WELL!! We are now NUMBER THIRTEEN on the THIRTEENTH day of voting! How awesome is that?! Thank you all so much for your votes, now go vote again! LOL Today I am going to highlight another amazing local project: Amazing Grace, who donates their packages to hospitals in Washington. For more information about Amazing Grace, please email Heather at heather@projectsweetpeas.com Here is Grace's story . . .

Hello, my name is Heather and I would like to share my story with you.

My husband Tom and I are high school sweethearts and have been married for four wonderful years. We always knew we wanted to have children and decided to add to our family back in June of 2008. We are planners so when my goal of becoming pregnant in the late spring early summer had come true we where thrilled. My pregnancy was going great. Not much sickness, a little tired but not more than you would expect. I was making big plans for the baby room, and of course planning out what our baby would wear home from the hospital. Things couldn’t have moved any smoothly.

It was just after Christmas 2008 when I went in for my 7 month check up. It wasn’t until after the nurse had taken my blood pressure 5 times that I realized there was something seriously wrong. My doctor had told me that he was going to send me over to the hospital for more testing because my blood pressure was very high and my body was producing a very high amount of protein that was unsafe for me and my baby. After several tests and a night in the hospital it was determined that I had developed a disorder called Preeclampsia. Although the cause of Preeclampsia is still unknown it affects 5-8% of pregnancies and the only cure is to deliver the baby. As you can imagine my husband and I where not ready and had no idea what the future had in store for us. My doctor had told me that the chances of our baby surviving at 28 weeks was hopeful but everyday that he could keep her in the womb would increase her chances of survival. I was put on bed rest to avoid any chances of high blood pressure induced seizures and given steroid injections to help our babies lungs develop. After a week of bed rest and several trips to the hospital I had become very sick. The Preeclampsia had started to shut down my kidney and liver functions and the decision was made to deliver the baby before both of our lives where to weak to survive.

Our precious baby girl Grace Lynn Morgan was born at 12:45pm on Tuesday January 6^th 2009. She weighed 2lbs 2oz and was 15 1/4 inches long. Immediately after she was born she was placed on a CPAP to help her breath and taken to the NICU. My husband was by her side every step of the way while I was in recovery, along with two NICU doctors, 5 NICU nurses and several machines. Grace pushed through and hung on. I had to wait several hours before I could see her and I will never forget the first time I was brought to see my little miracle. She was hooked up to a breathing machine, two heart monitors, and several iv’s. Thankfully, Due to the steroid injects I was given she only had to be on the CPAP for 5 days. The pain I felt not being able to leave the hospital with my baby or hold my baby for the first week of her life will never leave my heart. Because God was watching over her and because of her strong will and amazing perseverance Grace made it through her two month stay in the NICU.

On March 2^nd 2009 Grace came home! This was truly the most amazing day of our lives. I know that if it where not for the love and support from the doctors, nurses, family, and friends my husband and I would not have made it through the toughest time of our lives. I want to give back to those families who are going through the horrendous pain we had gone through. This is why I have created “Amazing Grace”. Grace is doing great now and is developmentally right on track. We are so blessed and will never take a day with Grace for granted.

Day 12 of 30 Days of Project Sweet Peas Giveaway!

2010-04-12T12:28:00.000-07:00

We have applied for a grant through the Pepsi Refresh Project, and have been selected as a finalist to win a $25,000 grant!! So here is how you can help us: vote once a day, every day for Project Sweet Peas to win. We need to be in the top ten at the end of the month to win. And to entice you to help us out and vote every day, I am doing a 30 Days of Project Sweet Peas giveaway! Everyday in the month of April I will be writing about the amazing things going on in Project Sweet Peas. And if you leave a comment that you voted each day, I will randomly pick one of these comments to win an Awareness Braceletof your choice! I make awareness bracelets of all colors, and I have a Pregnancy and Infant Loss Charm Bracelet featured right now.

**Please note that you must leave a comment each day to qualify for the giveaway for that day. **

Welcome to Day 12 of 30 Days of Project Sweet Peas! I am so excited to say that we have once again moved up another spot to NUMBER FIFTEEN!! WOOHOO Now we are only 5 away from getting into that Top Ten and winning the $25,000! So thank you all so much for all of your votes, we need them more then ever right now, so keep voting!!!

Ava's Angels is a local project that donates bags to the University of Minnesota NICU. To learn more about Ava's Angels, please contact Lisa at lisa@projectsweetpeas.com. Here is Ava's Story . . .

I am the type to plan out everything. Even though I couldn't wait to have kids, I waited for a few years until the time was "just right". My husband and I were thrilled when we found out we were expecting our first child. Our baby was due May 16, 2009.

The pregnancy was going great. My husband and I are both healthy and we don't have any genetic problems on either side of our families. It never crossed my mind that our baby would be born anything but perfectly healthy, much less would have to fight for its life.

I counted down to the date of our 20 week ultrasound when I could finally find out the sex of our baby (and I could begin shopping!). December 23, 2008 had finally arrived! However, at our appointment we found out that the baby girl I had always dreamed of had Congenital Diaphragmatic Hernia (CDH).....and a 50/50 shot at life. I had never even heard of it, but began to understand how serious it was when the doctors gave us the option to terminate the pregnancy - a "late term abortion" that wasn't even legal to do in my state. We decided that we would not give up on our daughter and would do everything we possibly could to fight for her life. We had a crash course in parenthood and felt so helpless that our child was sick and there was nothing we could do about it. Our rollercoaster began.

My friends and family were all anxious for me to have the results of our ultrasound so they would know if we were having a boy or a girl. I would say, "It’s a girl, but...." Even after explaining the situation to them, they didn't understand why I was worried. Babies aren't supposed to die and surely mine wouldn't.

We spent the next couple of months preparing for our little girl to spend the first few months of her life in the Neonatal Intensive Care Unit (NICU). We took a tour, met with the surgeons who would operate on her, learned about the machines she would be hooked up to....everything we could to prepare ourselves for the stress of having a child in the NICU.

On February 25, 2009, we found out that our daughter had Ventricular Septal Defect (VSD) in addition to CDH. To learn that she had a heart problem was devastating, but we still remained as positive as possible until March 11, 2009. On that day we learned that our baby girl had more heart problems and that they would likely be fatal. Because of the CDH, her heart was displaced to the right and squished by organs and therefore couldn't form properly. We met with a board of physicians and even with the new findings, all of the doctors had no doubt that she would be born alive but said that she would likely die shortly after birth. I spent the last few weeks of my pregnancy enjoying feeling her move and trying to prepare myself to say goodbye to her. Strangers would stop me and ask me what I was having and when I was due and say, "I bet you're excited!" If they only knew...

Over the Easter weekend, I stopped feeling my active little baby girl move. Ava Rose Daher had passed away at 35 weeks gestation. My labor was induced on Monday evening and our beautiful daughter was born with angel wings on April 14, 2009 at 6:53 am.

Going through this experience is life changing. Unless you have been through it, you can never truly understand. Our goal with this project is to provide some source of comfort, no matter how small, to families going through similar situations.

Day Eleven of 30 Days of Project Sweet Peas Giveaway! And Some Other Stuff!

2010-04-11T17:32:00.000-07:00

We have applied for a grant through the Pepsi Refresh Project, and have been selected as a finalist to win a $25,000 grant!! So here is how you can help us: vote once a day, every day for Project Sweet Peas to win. We need to be in the top ten at the end of the month to win. And to entice you to help us out and vote every day, I am doing a 30 Days of Project Sweet Peas giveaway! Everyday in the month of April I will be writing about the amazing things going on in Project Sweet Peas. And if you leave a comment that you voted each day, I will randomly pick one of these comments to win an Awareness Braceletof your choice! I make awareness bracelets of all colors, and I have a Pregnancy and Infant Loss Charm Bracelet featured right now.

**Please note that you must leave a comment each day to qualify for the giveaway for that day. **

Welcome to Day Eleven of 30 Days of Project Sweet Peas! We are keeping strong at 16 and I am so happy! Thank you all so much for voting! Today we will take a break from highlighting the other projects involved in Project Sweet Peas because we have been working on getting some more bags out to hospitals. Yay!

Our goal is to get twenty bags out by Friday. They will all go to Stormont Vail Hospital in Topeka, KS. We are very excited about this because we have donated 20 previous bags to them and they are out! So now we will be able replenish them and make sure that every family that needs one, will get one.

We are hoping to then donate another 30 bags by the end of the month to Children's Mercy Hospital. And then we will be doing something VERY special on our next donation, which will be in August, but more on that to come later! Here are some pics of us working on our bags :)

Boy Bags

Girl Bags

Our project manager, Will, LOL

We have also started our garden for MJ today. We have been wanting to do this for a long time, but have not been able to do so because of the weather. Well the weather has finally been nice and so we were able to! Here are a few pictures of what we have done for MJ.

Day Ten of 30 Days of Project Sweet Peas Giveaway!

2010-04-10T19:34:00.000-07:00

The path that led me here began in August of 2005. I found out I was pregnant! The most exciting news! Neither of us expected it yet both of us were thrilled. I was no where close to being naive about the different things that could go wrong yet I was positive that this would be the one. The planning and bonding for this little one began immediately. I played music, talked, read, and sang to this little being growing inside of me. I was full of joy and anticipation of becoming this baby's mommy. Then February of 2006 rolled around and I had to schedule a level II ultrasound. We were told our little precious boy, for unknown reasons, had a major birth defect called Congenital Diaphragmatic Hernia or CDH. That day my world fell apart. The following weeks and days became a constant emotional roller coaster. I wasn't due until May 20th. We met with all the specialists that were required within a couple of weeks and then prayed I'd make it as long as possible. By March 30th, my body could wait no longer. I was in labor and not stopping. Scared and teary eyed, I was prepped for a c-section. At 11:32p.m. our little man came into the world without a sound. After several minutes, I was allowed a 3 second glance at my dark headed, sleepy baby and then watched helplessly as he was whisked away to the NICU. Unable to see him all night, I slept with a polaroid of him that a nurse took for me. I was up every half hour. When I finally did get to see my baby, it was overwhelming seeing all the tubes and wires attached to him. He was drugged, unresponsive to my touch or voice. I wanted to fall to my knees screaming and crying. I wanted to scoop my baby up in my arms. I wanted him back inside me where he was happy and safe. We spent an hour with him, caressing, whispering, praying, taking pictures, watching the nurses do their thing, wondering what was to happen next. Then the doctor came by to talk to us. Our baby's lungs wasn't responding to the extreme pressure the oscillator was pumping into them. If we allowed much more, his lungs could puncture. Our choices: Spend the little time we had with him now or say goodbye as they prepared him for a ride in the helicopter to another hospital that had an ECMO machine. We chose the latter. It was the hardest thing up to that point to say goodbye, not knowing if I'd see my baby alive again. I couldn't go with him. His daddy met him and stayed with him. I was released the next day. Almost 24 hours later, I was reunited with my son. And if I thought there were many tubes before, I was sadly mistaken. There were even more now. But at that point all I saw was my little boy. I stood by his side for hours at time, only sitting for a minute here and there. I couldn't leave him alone. I held his hand constantly, stroked his dark, smooth hair, caressed his soft skin. This was to become the routine for the following days ahead. Every day the doctors and nurses said he was stable and that was good. They backed up on the sedatives and he moved a toe, a foot, a finger, a hand...yes, it kept going until he heard my voice on day 6 and moved everything, opened an eye to find me and then tried moving his head. That was a no-no while on ECMO. So sadly we watched as they drugged our baby up again. But he heard me! And he KNEW who I was! A few hours later, we received devastating news. He developed a level 4 brain bleed. ECMO had to be removed. I asked that they not give up and do what they could. We stood by for what seemed like eternity waiting for our little baby boy to respond in any way. I watched the numbers on the screen go down steadily. I asked the nurse why his chest wasn't moving, as the doctor tried to avoid the answer in fear of upsetting me, I'm sure. She was honest. His lungs just were too small, she said. I knew then what we had to do. I said to his daddy, I want to hold my baby. And he told them to stop what they were doing. I asked that all the tubes be taken off of him so I could SEE my baby's face. We held him for about 45 minutes before he flew to heaven from his mommy's arms. We cradled him, sang to him, told him how much we love him. That was the hardest thing I've ever had to do.

Because of my experience in the NICU, helplessly watching my son, I am offering my help to others now. Whether they are faced with only days, or weeks, or months, being in the NICU is a stressful time. You don't know what is to happen from day to day. You surely aren't thinking of things you could use or things you need. All you care about is that baby and being with him/her. You are not thinking of the chances of your baby not making it and what you might want for him just in case. You are not thinking of saving up on every memory because it may be all you will have for a lifetime. I want to help other families who are faced with the uncertain future of being in the NICU with their baby. I want to give them what they need, what they want....even if they don't know they need or want these things. I want to offer my support. I hope in doing this I can also spread my son's life to other's and that he can inspire others to keep fighting.

Day Nine of 30 Days of Project Sweet Peas Giveaway!

2010-04-09T09:11:00.000-07:00

When I was 5 months pregnant I had my scheduled ultra-sound. Just like anyone who is pregnant, I was anxious to find out what I was having! Would it be a room of beautiful, pink princess decor or a rugged jungle themed room for a boy? That day I not only learned I was having a girl, I also learned that she had a Congenital Diaphragmatic Hernia. I couldn't pronounce it, let alone spell it. My world changed that day. Forever.

I know all too well the ups and downs of having a child in the NICU. It is a roller coaster ride that plays with your emotions on every level. I also know the heart ache of making life ending decisions and the pain you learn to live with. The pain never goes away, it is something you just learn to live with. Christa passed away in my arms on September 4, 1997. She was three weeks old. This was the first and last time I ever held her.

Christa was born on August 14, 1997 at Vanderbilt Hospital in Nashville, Tennessee. She lived her entire life at Vanderbilt Children's Hospital.

Christa's life has deeply inspired me to reach out to others who are about to experience or are currently experiencing "life in the NICU." It is often difficult to explain to friends and family the emotions you are enduring. My goal is to offer support, words of hope, and prayers to many familes who are struggling with the reality of the NICU. Working with Project Sweet Pea allows me the opportunity to facilitate Christa's Butterfly Kisses, which will become Christa's beautiful legacy.

After Christa received her angel wings, I was blessed with two more children. Noah and Ashlyn-Grace are my miracles! Noah also had a short stay in the NICU when he was born with a Pneumothorax. I was on bed-rest with Ashlyn-Grace for 5 months due to complications and pre-term labor. I'm happy to announce that they are both very healthy, energetic children today!

Christa is my hero. She taught me to live each day with passion because tomorrow is NOT a promise to any of us. Make today count and tell those close to your heart that you love them!

Day Eight of 30 Days of Project Sweet Peas Giveaway ( Plus a little something extra)

2010-04-08T09:23:00.000-07:00

Before I start Day Eight of 30 Days of Project Sweet Peas I have to share a poem that my husband wrote:

At the time of the tulips

By William Skaggs III

At the time of the tulips

and at the time of spring,

the grief of a parent has been lifted just so high.

Just high enough for the grieving parent to lay in the warmth of an upcoming summer day.

The fog was thick, not letting in light,

no plants to grow.

Then out of the blue with time on his side his mood had changed

washing the fog away.

The grief of a parent for their child will rumble like the unsettling weather of the spring storms, but with each passing day the storms seem to be manageable and not as fierce as before.

The grief will always last but the love and memories will always outlast all.

**Please note that you must leave a comment each day to qualify for the giveaway for that day. **

Welcome to Day Eight of 30 Days of Project Sweet Peas! We are still holding strong at Number Seventeen, and we still really need your votes so we can move up to number Sixteen and beyond! Please don't forget to vote so that you may help us out! Drake's Doodlebugs donates care packages to Ochsner Medical Center and Saint Tammany Hospital in Louisiana. For more information on Drake's Doodlebugs, please email Christy at christy@projectsweetpeas.com This is Drake's Story . . .

Burt and Christy Michel were having trouble getting pregnant. After an appointment with the fertility specialist they found out that they had to start fertility medicine. After an ectopic pregnancy ,a miscarriage and many failed attempts, they found out they were expecting with an EDD of March 3 2008. At their 20 week ultrasound, they found out they were expecting a boy !! They also found out that he had a Congenital Diaphragmatic Hernia. It is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, no matter the race, religious background, or financial status .No matter how well the prenatal care!

Drake Alexander Michel was born on February 18, 2008. After 6 major surgeries ,and 7 weeks in the NICU, He passed away in his mommy's arms on April 6, 2008. No mother should ever get to hold her baby for the first time and have to say goodbye at the same time.

Drakes Doodlebugs is a local project started to give a little comfort to families of babies in the NICU. Having someone show that you are not alone through this stressful time is priceless.

Day Seven of 30 Days of Project Sweet Peas!

2010-04-07T08:43:00.000-07:00

**Please note that you must leave a comment each day to qualify for the giveaway for that day. **

Welcome to Day Seven of 30 Days of Project Sweet Peas!! I am so happy to announce that we have moved up one spot into 17!! Now we are only 17 spots away from the TOP TEN! So close we are almost there, so PLEASE PLEASE, KEEP VOTING!! The project that I will be highlighting donates bags to Kootenai Medical Center NICU/PICU in Idaho/Washington area. This is the story of Ayda's Blessing (for more information, please contact Shanell at shanell@projectseetpeas.com). . . . .

When I was 17, me and my boyfriend, now my husband found out that we were expecting. We went through the normal pregnancy stuff, doctors, planning the room, until May 9, 2007. We went into the doctors to see if we were having a girl or a boy. We found out that we were having a girl, but we also found out that she was diagnosed with a birth defect called a congenital diaphragmatic hernia. We had no idea what a congenital diaphragmatic hernia was. In Ayda, our daughters cause, we found out that early in gestation, her diaphragm didn’t completely form, and there was a hole on her left side of the diaphragm. Her stomach and her intestines moved their way up through the hole and placed themselves where the heart was supposed to be, causing the heart to be where the lungs are supposed to be, causing her lungs to not form completely due to the very small amount of room in her chest. They told us that 1 out of every 2,000 babies are born with CDH. The survival rate is only 50%

Ever since that day, our lives were forever changed. I couldn't finish school because all of the distractions and doctors appointments were a little more important. All I wanted to focu on was my daughter and what was going to happen once she was born.

Late in August, I went into preterm labor and was admitted into the Sacred Heart Birth Place Antepartum. They placed me on bed rest and I was having about 4 medications to try and keep me from giving birth. They told me that if I gave birth to Ayda right now, she wouldn't survive since she only weighed 5lbs at the time. I was in Antepartum a month before Ayda was born. I couldn't go home, the hospital was about 2 hours away from my house. The hospital was my new home.

On September 20, 2007, Ayda Rose Browand was born at 4:42pm, weighing 7lbs 11oz. I couldn't hold her. They took her over to the bed and cleaned her up as they put her on oxygen. I looked around. My hospital room was full of stress. I had my husband, mother in law, mom, grandma, two Antepartum nurses, 2 OBGYNs, 2 NICU doctors, and 4 NICU nurses. It was so stressful! They wouldn't let Ayda cry because they didn't want more organs to get sucked up into the chest cavity and cause even more of a problem. They started to wheel Ayda up to the NICU. Sam followed them and kept on calling me with updates.

Once I was able to go upstairs to see her, I was in shock. the room was full with nurses and doctors, alarms were going off saying that her oxygen was too low and her heart rate was too high. they would shoot some medicine into her arm. The sound of the ventilator hummed in the background. I wheeled myself over to my precious baby just to see her eyes closed, her chest moving not from her breathing, but from the ventilators breathing, and not seeing her wiggle her toes. They had to put her on some special medications that would make her not be able to move because she was trying to spit out the ventilator when she was born. All I could do was pray and stare. I couldn't help her, she couldn't help herself. We were both helpless.

The next couple of weeks were like riding a roller coaster. She would do really good, and then she would drop back down. "45% oxygen", I would stare at the monitor every second, just to make sure she was being a good girl. They said my eyes were glued to that thing. I would send Sam up to check on our daughter and the first thing I would ask was "how are her oxygen saturations?". She became so unstable they started to talk to us about "the last resort", ECMO. We decided to say no. We didn't want her to suffer any more than she already was. The rest of that night, I was scared that we just let our baby pass, I was up about every 3 hours making sure she was okay, calling the nurses over and over. Praying was the main time I spent while at the NICU.

The morning after our decision about ECMO, they told us that Ayda was now stable enough to have surgery. They scheduled it for October 1st, Sams sisters birthday. We were so relieved. Finally, we were moving our way through the tunnel. Her surgery went well. A couple of weeks later, she re-herniated and a second surgery went through. They had to put mesh in to patch the hole. After her surgery, they slowly began bringing down the settings of her ventilator, oxygen, and all the other wires and tubes she was hooked up on. When she was off of the ventilator she was able to eat. At the beginning of November, they moved us up to the NICU step-down unit. That meant we were on our way to going home!

On November 30th, we were able to go home!!!

After she came home, Ayda had 2 other surgeries and 2 other small procedures from the time we came home until about a month after she turned a year old. Currently Ayda is growing like a "normal baby". She has hearing loss and has to wear hearing aids, and she has a very weak immune system and gets sick very often, but we have been able to keep her as healthy as we can. Even though we went through a hard time in the NICU, I would never change anything about the journey we went through. That is why I am here. It is my passion to help other parents that are in the same situation that my husband and I were in during the time our daughter was in the NICU.

Day Six of 30 Days of Project Sweet Peas Giveaway!

2010-04-06T07:20:00.000-07:00

Welcome to Day Six of 30 Days of Project Sweet Peas!!! Currently we are in 18th Place!! That's one higher then yesterday at this time! But for some reason, we can't seem to break that number 18 mark - so please, I am begging everyone, KEEP VOTING!! Today's project that I will be highlighting is Kiernan's Kindness. Kiernan's Kindness donate bags to Phoenix Children's - NICU St. Josephs - NyICU Los Ninos - and NICU Scottsdale Shea - PICU in Arizona. For more information on Kiernan's Kindness, please contact Julie at julie@projectsweetpeas.com Here is Kiernan's Story . . . .

Kiernan was born at 36 weeks and immediately taken to the NyICU (nursery icu) which we knew was going to happen. We had toured it only 2 days before his birth and thought we would actually have at least 2 more weeks to prepare but medication was no longer stopping contractions. At 32 weeks inutero Kiernan was diagnosed with CDH and a chromosomal defect called klinefelters syndrome and the long road began. Trips twice a week for NST and amnio counts which was nice to see my baby all the time but did get old and he began to hate it as well. Once he was born it was about 14 hours before i got to see him in person for the first time and i could not hold him yet. He was on all kinds of IV's and an oscolator plus all the monitors. We quickly learned how to read them and what went where and why.. The first night nurse made him a sign with his name on it and decorated it. In fact each child in there had a personalized hand made sign with there names. It was a small but thoughtful thing and it was heart warming. It really gave us the sense that these nurses were special. St.Joes where he was born was actually our 3rd hospital. We started at one hospital that thoguth they were going to have to deliver a 31 week preemie that only had a level 2 nicu and went to a hospital with a level3 nicu and once the cdh was found we were transfered to St. Joes since they were the ONLY hospital in the valley that could deliver babies and do ECMO if needed. Only 1 other hospital can do ecmo and they only take transfers and dont deliver. Kiernan was intubated the second he was delivered and it was a c-section for 2 reasons 1 the cdh and 2 i had already had 2 prior c-sections. My wonderful husband took a picture of him and brought it over to me so i could see him since he was taken right away to Nyicu. He was born not breathing anyway but they had already planned on intubating so they were prepared. The hardest thing i ever had to do was go in there the first time after he was born and see him hooked up to everything and sedated and know that I couldn't pick him up and hold him. The nurses were so nice and answered all of our questions and comforted us in whatever way they could. Kiernans first night was rough and he had to be put on heart medicines and needed the oscalator and it was just so hard. The surgeon came the next day and did there x-rays and ultrasounds and stuff they needed and started to prepare for whne he might have surgery to repair the cdh. They set goals and my little guy started to hit them ALL. To the amazement of the staff and docs he was switched over to regular ventilator 2 days later and then surgery was set for the next day. I got to hold him for the first time the day before surgery. I begged them to let me hold him. I did not know what was going to happen but wanted to at least hold him once while he was alive in case he didnt make it. I wanted him to know his mommys touch. He was still on all the stuff and it took about 15 minutes for them to get him ready so i could hold him but it was awesome yet very sad at the same time. He had surgery the next day and did great. I ended up staying an extra day due to spinal headaches from not resting enough after the c-section. It was so hard to leave without him. We went back to see him only hours later I couldn't stay away. Within a week he was off the ventilator completly and getting closer to starting feeds. He was about a week old before we could hold him anytime and put clothes on him and then at 2 weeks old we got to feed him. He was moved to intermediate care right around two weeks when he was down to just the picc line and almost up to full feeds. A couple days in there and then i got to breast feed him. The most wonderful thing in the world and he was a champion feeder. He was born August 20, 2008 and went home as healthy as a cdh baby could be on Sept. 10, 2008 -- His originally scheduled c-section date. Our experience with the Nyicu was great and i just want to be able to give support to other parents going through what we did. We love St. Joes and it is still a second home in a way seeing as we still go there for follow ups and specialist at least every other week. I hope other parents can have a positive experience like we did at such a trying time in there lives.

Day Five of 30 Days of Project Sweet Peas Giveaway!

2010-04-05T10:42:00.000-07:00

Shelby's Sunshine is another amazing Project Sweet Peas that donate bags to hospitals in Indiana. Here is Shelby's Story . . .

Our daughter Shelby Grace was born on July 10,2006. At 18 weeks in utero she was diagonsed with a left sided Congenital Diaphragmatic Hernia (CDH). When she was born she was placed on ECMO. She stayed on ECMO for 7 days. Her first diaphragmatic hernia surgery was done on her ninth day of her life. Shelby's spline, large/small intestine, liver and part of her stomach were up in her left side chest cavity. The surgery placed all these organs back to their correct spots. The surgery was a success...the bad side was Shelby's left lung was not developed because of all the organ's being pushed up in the left side chest
cavity. Through-out the next year Shelby went through another diaphragmatic hernia surgery(which was a huge shock), a G-tube was placed in her stomach, a nissen was performed, she had a hital hernia surgery, her cliff lip was repaired and she was hospitalized for numerous reasons.

We struggled everyday to continue to keep her healthy and keep her out of the hospital. At home where Shelby's three older sister. Who to this day have been a HUGE assest in Shelby's recovery.

At the age of three, Shelby continues to amaze us daily. That is why we call her "Amazing Grace". She has a Mickey Button to help her continue to gain weight, to keep her healthy and to help give her calories she does not get from eating ny mouth. The good news is, Shelby is eating more and more by mouth. Our hope is she will someday soon be able to get rid of her mickey button.

We do not know what the future holds for Shelby's health, we will continue to fight for her and give her the best we can. We do know it is time to give back to families that are in NICU's in the state of Indiana. To let them know they are not alone. To let them know there are other families that have walked in their shoes and are willing to show them some extra love, support and much hope.

Happy Easter and Day Four of 30 Days of Project Sweet Peas!

2010-04-04T07:12:00.000-07:00

Steve and Kate Crawford were expecting their first daughter, when they were told at their 18 week ultrasound that the baby had a life threatening birth defect known as Congenital Diaphragmatic Hernia.Only half of babies born with this defect will live. After many ultrasounds, echocardiograms and fetl monitoring, the baby's outcome looked hopeful. Shannon Elizabeth Crawford was born January 16, 2007 at Magee-Women's Hospital and was transferred that same day to Children's Hospital of Pittsburgh. On January 17th, 2007, the couple found out their daughter also had a heart defect known as Hypoplastic Left Heart Syndrome. The combination was deadly and Shannon was given a 1% chance of surviving. On Janury 19th, 2007, it was decided that Shannon would not make it through any surgery, and prolonging life was not an option. Steve and Kate let their daughter pass quietly in their arms that night.

In June of 2007 the couple found out they were expecting again, only to miscarry their "Peanut Shelbe" in September. The couple was exhausted and felt hopeless at trying. To their amazement, they found out they were expecting once again in January of 2008, shortly after what would have been Shannon's first birthday. At the first ultrasound, the couple received the shock of their life - twins. In August of 2008, Kate delivered the twins girl 6 weeks premature. Grace Kathleen and Lily Anne spent two weeks in the NICU at Magee-Women's Hospital. Grace needed no extra support, she was monitored until her weight of 5lbs was met and she was released. Lily needed CPAP. She remained on a heart monitor after her arrival home for one month. Kate and Steve decided to add one more in May of 2009. At 7 weeks of pregnancy, Kate was put on bedrest for bleeding. She later found out she had two conditions, Placenta Previa and Placenta Increta. Kate gave birth to her son in early December of 2009, 7 weeks early. Stephen was intubated, suffered from jaundice, reflex and dropping heart rate. Stephen spent 19 days in the NICU and was realased right before Christmas. He joins his twins sisters at home, where they are all growing happy and healthy.
Kate knows what it is like to sit in a NICU and have nothing to do but stare. She was been through the best outcome and the worst. For her, the small things she was able to hold on to in the NICU continues to bring her much comfort. She always wished she had more to remember Shannon by and loves to be able to provide these items to parents. Project Sweet Pea holds a special place in her heart.

Day Three of 30 Days of Project Sweet Peas Giveaway!!!

2010-04-03T07:50:00.000-07:00

Gabriel was born on November 18, 2006 with an undiagnosed Congenital Diaphragmatic Hernia (CDH), a life threatening birth defect. CDH affects 1 in 2500 babies. Only 50% survive. Our little boy spent his life in 3 different hospitals enduring multiple surgeries and procedures while he fought for life for 55 days before earning his wings. He passed away peacefully in the arms of his parents on January 12, 2007. He will always be loved and missed.
Gabriel's little sister, Makayla, was born on February 15, 2008. At 10lbs 4 oz she made her way into the world through a difficult delivery. She recovered quickly and luckily only had to spend two days in the NICU before coming home. We know how blessed we are to have our little girl healthy and happy, and never take a moment for granted.
Corin (Gabe's mother) and Jeanne (Gabe's grandmother) started Gabriel's Gift because we understand the stress of having a sick child in the NICU. Our goal is to give comfort and support through this project. Being in the NICU, especially for an extended stay, can be tough, but we want to let parents know that they are not alone.

30 Days of Project Sweet Peas Giveaway Day Two!!

2010-04-02T05:37:00.000-07:00

As I have written about so many times before, one of the things that I do to remember and honor my son is donate care packages to families that have a baby in the NICU. I am able to do this through the help and support of Project Sweet Peas, which is a group of families just like mine, who have been in the NICU and know how hard it is. There are twelve local project spread out across the country that deliver these care packages. I am honored to be a part of this organization. And we need your help!!!

We have applied for a grant through the Pepsi Refresh Project, and have been selected as a finalist to win a $25,000 grant!! So here is how you can help us: vote once a day, every day for Project Sweet Peas to win. We need to be in the top ten at the end of the month to win. And to entice you to help us out and vote every day, I am doing a 30 Days of Project Sweet Peas giveaway! Everyday in the month of April I will be writing about the amazing things going on in Project Sweet Peas. And if you leave a comment that you voted each day, I will randomly pick one of these comments to win an Awareness Bracelet of your choice! I make awareness bracelets of all colors, and I have a Pregnancy and Infant Loss Charm Bracelet featured right now.

And the winner from Day One Giveaway is (picked with the help of random.org) . . . . . Michelle from Missing Juanito!! Michelle please send me an email at megan@projectsweetpeas.com and let me know which Awareness Bracelet that you would like. Check out Bracelets for Awareness for idea, you can pick any bracelet with any amount of charms!

Welcome to Day Two of 30 Days of Project Sweet Peas! TodayI am going to talk a little bit about why my husband and I decided to start our own local project to benefit Stormont Vail Hospital in Topeka, KS and Children's Mercy Hospital in Kansas City, MO.

When I was 21 weeks pregnant with Will and MJ we received the devastating news that MJ would be born with CDH. I remember the doctor told me that some people would shock us with amazing support, and so many countless people did! But he also told us that some people would shock us and be so unsupportive. That very same day we experienced that unsupportiveness. A family member, who shall remain nameless called me and simply told me that I had so many things to smile about in my life that God wanted me to be sad for a little bit. WHAT? God wants me to be sad because I have had such a great life??? Did she not remember that my father almost died of cancer the year before? Did she not remember so many other things that I have not been able to smile about? That comment started a trend of unsupportiveness from the unnamed person and I am glad to say that they are no longer in our life. I am glad that I can shield Will from the pain and hurt that their comments and actions have caused me.

After losing MJ we experienced the same shocking supportiveness and shocking unsupportiveness from people that surrounded us. It's the shocking supportiveness that I hold so close to my heart and choose to focus on. I could not have gotten through the many days and nights without being surrounded by the people that love me and my family.

One day I was browsing around the Internet and I came across a website called Project Sweet Peas. I read their mission statement, I checked out a few Local Projects, and then I saw that you could start your own local project if you wanted to. Immediatly I emailed info@projectsweetpeas.com and called my husband and said lets do this. We both wanted to not only lend the same support to so many other families, but do this for MJ. To make sure that his name will live on through our love. I don't know if we ever thought we would be able to bring it to where it is today, but we are both so happy with where we are at. We have donated 52 bags since October! And the end of the month we are getting ready to donate another 50 bags! That would be 102 care packages in just seven months!

So please, please, please, help us give that comfort and support that helped us through so many days and nights to people who are going through the same thing that we did: watching their child lie on a hospital isolette and fight, simply fight for LIFE! And head on over to http://www.refresheverything.com/projectsweetpea and vote for us. You can vote once per day, per email address. So if you have multiple email addresses, you can vote more then once!

And don't forget to leave a comment that you voted, so that you can win a FREE Awareness Bracelet of your choice!

** You can also get in on the free Awareness Bracelet by posting our link on your blog so that your readers will vote!**

It's a Two Post Kind of Day

2010-04-01T20:12:00.000-07:00

So while this month is super exciting about the possibility of Project Sweet Peas winning a $25,000 grant from Pepsi Refresh (please don't forget to vote here!) It still doesn't change the fact that I miss MJ horribly. And it doesn't change the fact that everyday life sometimes just sucks. So here is a little bit about my day.

Tonight I started my master's program. I had actually started when I was pregnant with the boys, and completed one class, but due to preeclampsyia and MJ's diagnosis, I had to drop out after just one class. The way the program that I am in works is a cohort module: you begin the program with the same 12 people you end the program with, taking only one class at a time, one night per week. It's a great program, and since I completed one class last year, I did not need to complete it again this year. So I simply jumped into the program after the first class.

Being the new person entailed everyone chit chatting and small talking with me before class began. I knew what was about to happen. I knew that someone would eventually ask how many kids, if any I have. I sat there, with my hands shaking so bad that I had to clench both of them shut. And them someone asked why I dropped out of the program last year. I said that I had to drop out due to a very difficult pregnancy and I have not been ready to come back until now. I was hoping that no one would ask anymore details then that. But it didn't happen. One of the girls asked what flavor baby I had, just as class was getting started. The only thing I could think to respond was 'It's complicated." It's complicated? Who says that? Apparently I do. It's all I could manage to mutter out. I know that eventually I will talk about it, and I really do like to. I don't want to be known as 'That Girl' before I am ready. I want people to not have all of these preconceived notions of how I am and what I have been through before they know me. Don't get me wrong, I love to talk about MJ, I just like it to be on my terms. I want to be the one to bring it up, not have to explain that I have twins sons, and one of them has died. I hate that. I hate it so much. I just want to be able to not ever have to freak out about the question that so many people ask: "How many kids do you have?"

Thankfully, it was never brought up again. It probably will next week, and that's fine. Maybe I will be more ready next week. As if I will ever be ready to say that yes, my son did actually die.

30 Days of Project Sweet Peas Giveaway!! (I need your help!) Day one

2010-04-01T07:55:00.000-07:00

Butterfly Mommies and a day for Turquoise

2010-03-31T13:57:00.000-07:00

Never before did I think I would be a blogger. But after the death of MJ, I stumbled onto the blogging world and have become become not only a fan, but a blogger myself. There are a lot of wonderful resources through blogging and the babyloss blogging world has become a source of great support for me. Butterfly Mommies is one of those outlets and the women their have created a network of mommies with babies in heaven. They are about to start a radio show and have asked the babyloss mommas to help them start out with their first show by answering the following question:

What forms of support helped you the most during your time of loss and even now? How would you recommend other people support grieving mothers? (As we know, many times people who love us often don't know what to say or how to act)

There are many forms of support that have helped me throughout my journey without my son. After MJ's death I became more and more involved in the congential diaphragmatic hernia (CDH) world and attempted to learn all I could about the horrible birth defect that took my son. I knew that MJ would be born with CDH when I was 21 weeks pregnant. I knew the odds: only 50% of these babies survive. I knew that he would have a hell of a fight. But I also knew that he would make it. I refused to believe anything but, and simply put my faith in God that MJ's story would be on of survival. So I never truly fought to understand what CDH was, and I never thought I would not take my son home with me. Since he died I have wanted nothing more then to figure everything out about CDH, so that I truly understand why and how my son died. Through my yearning for knowledge I have met wonderful, lifelong friends. I have met other mothers that have lost their sons or daughters. I have stepped up and poured my heart out to complete strangers to raise awareness. I have cried, I have laughed, and most of all I have missed my son. Meeting and talking with other parents that have lost their babies helps me understand that I am not alone, and that my son can and will be part of my everyday life. The support that I have received and given is life changing, and in the realm of devastation, I have found beauty in the way that my life has changed in the last seven months since my son died in my arms.

Supporting a grieving mother is very hard, yet very easy at the same time, I feel. The one and only thing that I have left of my son is his memory. I want and I need to be in control of that. His pictures, his name, his things, and so many other things that I have of him, I need to be in control of. I want to be the one to speak his name, so ask me about him. I want to tell the world that my son lived and that he fought hard, so hard for his life, so let me. I want to raise awareness of the awful birth defect that took his precious life, so help me do so. But let me do it on my terms, and the way that I want to. I want to be the one that distributes his pictures, so please don't use them without my permission. Basically, please respect me enough to 'parent' my son's memory and his things. After all, you wouldn't take my son and do what you please with him and his things if he were living? Would you?

I also want to thank the countless people today that have worn turquoise, posted something on their facebook page, remembered MJ, or simply talked about CDH today. I can't even explain to you what that means to me. The single thing that I am most scared about in this world is that MJ will be forgotten. It is my mission in life to ensure that he never will be. He is a part of my daily life, just as much as his surviving twin, Will is. I speak his name daily. I think about him constantly. I look at his pictures all the time. And I thank God every single day for the 35 days we spent with him. So thank you for helping me make this a Day for Turquoise

March 31 is Congenital Diaphragmatic Hernia Awareness Day!

2010-03-30T15:00:00.000-07:00

Please help support awareness of the horrible birth defect that stole my son MJ from my life by wearing turquoise tomorrow. And if some asks why, please tell them what CDH is.

Breath of Hope

Congenital Diaphragmatic Hernia (CDH) occurs in about one in every 2,500 live births. Absence of the diaphragm may occur on the left, right or both sides, but the absence on the left side is most common. CDH occurs when the diaphragm does not fully form, allowing the stomach oragans into the chest cavity, which severely hinders lung and heart development. There is a wide discrepancy between the “visible” mortality from congenital diaphragmatic hernia reported from children's centers, which treat only those infants who survive gestation, birth, resuscitation, transport and often major surgery, and the true mortality for congenital diaphragmatic hernia, based on all prenatally diagnosed cases, which has been called the “hidden mortality” of Congenital Diaphragmatic Hernia (CDH).