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Well it's been four years since we chose to
take our son off of life support and pass away in our arms. It almost
doesn't seem real. But then I look at his pictures, his things, and the
memories come flooding back. I never believed he would die. I never
believed we would live this strange life of raising a twinless twin.
Will doesn't quite understand still. He talks about MJ and how he lives
in Heaven, but the concept of his twin brother dying hasn't yet hit him, I literally typed this same sentence last year, so again I am wondering when he will understand. Maybe I am hopeful he never truly will because then maybe he won't feel this pain. Our lives are so busy, busier then ever with Will and Maci. But four years ago today my heart shattered and piece went
with MJ when he died, its a piece that I'll never get back, and I really don't want it back. It's a piece that is forever MJ's. Slowly it gets easier the manage the pain. It
never gets better, just easier to manage on a daily basis. Today is
hard, today the memories flood back and I wonder how I made it through
those painful hours of saying goodbye . . .
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 the 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 changing hues from semi-health to a dull tone 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 went 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 nurse 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
heartbeat 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
obviously 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 Burger King. I
remember it tasting bland and not good, literally like sawdust. 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 brought 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 autopsy, 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.
Almost 7 years...
8 years ago
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