It's with a very heavy heart that I write these words. It's almost as if putting them onto my phone is making them real when a part of me has wanted to keep these realities from myself.
This last part of the week has been so emotionally rough for David and I. Holding the life of your child in your hands is exhausting. We've had to have some very tough discussions and make even tougher decisions and guidelines for our family and the future.
In our care conference we went over all of Aiden's history, his progress, etc. Before the doctors came out and said it themselves, it became clear to us that so far it medically isn't working. I know his stats, numbers, and history. I am mature and logically minded enough to recognize this. On paper it's not working out.
There is a good reason why he's considered a "critically ill child" and "fragile". He has had to be heavily sedated his entire life. So much that the doctors explained that he has often been a single step away from what's considered general anesthesia. The reason for this is because he has no lung reserve due to their small size, so the smallest upset sets him back for days.
His body is growing, but his lungs don't appear to be. We very clearly know this because of his sedation needs and inability to handle even a small upset without turning completely purple. We also know this because if they were growing, he wouldn't have had to be switched to a ventilator that gives him even more support. If his lungs and body were growing together, this wouldn't have happened. But because his body is growing and his lungs aren't, the other ventilator was failing and he had to be put on this one to maintain him.
It's so discouraging that his lungs are the only real issue. Everything else is perfect on him. We all realize that his body grows slower than normal babies, and that he will only have a 3.5 foot tall person to maintain. But his chest size is so small, we still have a big "will they grow to sustain him?" question mark hanging above his head.
So David and I have had to discuss just how long we want to keep going and trying with him. Would it be easier on everyone to let him go when he's younger? Do we let him stay in a hospital his first year of life only to have to let him go then? Where do we draw the line?
And then we had the crushing realization that we have to think about the girls too. Melodie has testing for kindergarten in May. She is such a sensitive, mature, little spirit. I know she especially will have a hard time if he passes, and I don't want that to hinder her start in school.
It was an awful conversation to have. But we decided, and told the doctors, that even if he requires more support and medicine, we are going to do everything needed until the end of May to keep him going. That way Melodie can test for kindergarten, and if anything happens, will have the entire summer to grieve before school starts. Then in June we can reassess his situation and make a decision whether to keep going or let him go.
Having that conversation with the doctors was worse then the one we had with the neonatologist before his birth. Just writing about it now has me feeling sick to my stomach and teary eyed.
Before the care conference Aiden was fitted for his neck brace. This is a very exciting thing, we could hold him! But I'll admit holding him directly after the care conference made that moment very bittersweet. It calmed me, but also made my fears of losing him sit on the surface of my mind. Almost as if a part of me didn't want that moment holding him because it would make losing him that much harder.
I love this little boy with everything I am. I've found myself tearfully begging Heavenly Father to let him live like I so often did while pregnant. I haven't slept in a few days. I've had consistent nightmares of his funeral, wake up to pray and beg until I fall asleep, only to have the same nightmare again. If I were to lose him I don't know if I could bare it.
As I pray I feel only the same thing, that he's going to be okay. But "being okay" doesn't offer me the comfort and peace of mind I need. I just want to know how will he be ok, alive or not?
David and I decided that we are going to try and relish every moment we have with him. As hard as it will be, we are only going to look at a day at a time and try not to let ourselves think about the future.
So today, he had a great day. He was very stable and weaned off the ventilator. He got super upset when he pooped and purple cried, but he calmed himself down without needing extra help. I finally got him to take and suck on a pacifier for the first time in his life. And he woke up, wiggled his little body around, looked at me and moved his eyebrows as I talked to him, and gave me his first genuine smile as I munched on his cheeks.