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!