Well it has been a long time since I've been to this page. A lot has happened since then. The worst has happened since then. Little Liam died on January 22nd. I don't know how else to word that. He was chugging along and we had finally started to really prepare to bring both our boys home, and then it became only one. We had purchased two swings and his crib was ready to go, all the clothes washed and put away, carseats unpacked and we were in a little bit of a panic because all of this was done when we thought we had only a couple days until Owen came home. Both boys had their surgeries scheduled for the 18th of January, we were nervous but excited. Finally after months Liam was going to have an intact intestinal system and a belly button and look whole. But surgery was postponed because of some results on a test. . . . I remember how bummed out both Eric and I were, we just wanted it over with. It was going to be a tough long surgery and we just wanted to get it behind us. Looking back it seemed like everything was getting a little bit worse, but at the time I chalked it up to him just being done with his insides being on the outside . . . who knows. Anyway he had his surgery the next day I think. It was a super long surgery but miraculously he came back extubated which was huge. He was so mad though, and as a side note. . . I challenge anyone who thinks bowel surgery is essentially painless to have their intestines pulled inside out through their belly button and left there for 2 months before shoving it all back in and poking around to make sure everything looks good. . . .okay, back to the task at hand. It quickly became an intense balancing act between controlling his pain and supporting his oxygen needs. But he was "stable" just recovering from a difficult surgery.
We went home late that night and celebrated. We opened champagne and toasted to the fact that both boys surgeries were a success and that they would be coming home soon. Liam had a belly button finally! A few hours later in the middle of the night, my cell phone rang. It was the hospital calling to let us know that for some unknown reason they couldn't get a blood pressure reading on Liam. But we shouldn't be too alarmed. The next morning we called and he was stable. Then a few hours later, they called again, Liam's condition had become quite critical and we should get to the hospital as quickly as we could.
Panic sets in, it was already raining, I just remember speeding as fast as I could as I called Eric and let him know to get there too. He beat me there, and the feeling in the room was grim. We were told that this had literally become minute to minute and that they thought that Liam had become "septic" when and infection gets into the blood and contaminates all of your major organs. The worst case scenario. I can't go into too much of the details of that day except to say that he continued to "code" throughout the morning. They were doing everything humanly possible in hopes that by the most aggresive treatment we could help him turn the corner and fight off the infection. He would be stable for a half hour or so and then crash again, and again, and again. At one point they did emergency surgery to relieve the pressure in his abdomen that may or may not be causing the pressure on his lungs. We just sat there, I couldn't talk or even look at Eric because I knew I would break. Meanwhile Owen was right next to him just being so patient and good. I think after the surgery people were starting to know that this wasn't going to be a happy ending, but I was still clueless and blissfully unaware that this could end so tragically. It wasn't until after shift change that I became painfully aware of outcome. I remember I went to the pumping room, and took out my Preemie book and read the chapter on difficult decisions and loss and I just cried. . . . only a little. . . but I knew. I texted Eric and asked him if we were just torturing him. I pulled myself together and returned to the battlefield. It was just getting worse, you could tell as a lay person that organs were shutting down and that the effect of the lack of oxygen was taking an unforgiving and lasting toll on this tiny little baby. The next two times he crashed I stopped praying for God to get him through it, and started begging God to take him. . . . that I was ready to let go, and to please release him from this pain.
Liam's doctor came to us to let us know that she and the team would keep doing this and trying to save him, but that we would need to make a decision to continue or not to continue, I already knew, but how do you say stop . . . . Eric and I both knew it was time, but we talked and I asked Eric to tell her that next time he crashed that we just wanted to make him comfortable and let him go . . . . give him back to God. The pain is still just as sharp, just as fresh as it was that night. I have no idea if it will ever be just a little duller.
We had him baptized by the Chaplin very quickly and he crashed, they swaddled him up and let me hold him. He was such an Angel . . . . I just remember thinking, My God did I make the right choice, please don't wake up because I don't want to have killed you . . . and he didn't . . . . he was gone before that moment, his little body was so much heavier than the 6 pounds 10 ounces that he weighed, its like when your soul leaves your body you get heavier. I was torn, I didn't want to let him go, but I wanted to run away.
His nurses, took out all his I.V.'s and bundled him up just like a newborn and let me hold him, and I did, until his little face felt cool, and then I gave him back, it was the most painful thing that I have ever done. It felt like someone reached in and clawed out every piece of my insides and just left me there to keep living.
Eric and I went to the parent room and just cried for what seems like an eternity, the nurses would come to check on us and they had the unfortunate task of having us sign things like body release papers and autopsy papers. . . . God bless NICU nurses, I can't imagine a harder task. Eric called our parents to let them know that Liam was gone. We woke up a few hours later and wanted to go home, but I wanted to see Owen first, so we went back to the same room where we had just said goodbye hours ago to our baby to hold our other son. I just wanted to feel him breathe a little before going home.
I know that it is God's will, and I believe that this is how it was always meant to be, but that doesn't take away the searing hot pain I feel at our loss. Liam has gained eternal life, and all of the things that go along with being in heaven, but I have just lost a son. So its true he is in a better place, but selfishly I want that place to be here with me.
This is how I say goodbye, by telling his story. I love you Liam, I will see you someday.
This week we went on probably our last hike of the season as the weather out here in Phoenix is getting hotter and hotter! I love summer and I love the heat, but I will miss being able to get outside and hike and run. I think I still have a few more weeks of running before I have to turn to the treadmill until fall. Owen stayed awake the whole way up to the top of North Mountain just enjoying the view so we got him out at the top to take a few pictures! We saw a little squirrel family it was so cute.
