Slow Progress

Crew is making progress, albeit much more slowly than any of us had hoped. He remains on the ventilator and I can see that it does no good to speculate about when he might be extubated. He's had major abdominal surgery, which makes it painful to breathe, and he just feels icky and tired all around. Can't say that I blame him. I hope he comes off the ventilator soon and I really really hope that he feels better soon. He still hasn't had anything to eat as he is waiting for his bowels to heal and strengthen. No nursing whatsoever and no bottles. He's on intravenous nutrition until sometime later this week, hopefully.

I hate seeing my poor little guy look so lethargic and weak. I've been so spoiled with his robust and vibrant behavior over the last many weeks that seeing him return to his less stable, weak state brings back bad memories. He definitely breathes better when I am with him, so even though it was a major ordeal to get him out of his bed, I was able to hold him for two and a half hours today. He was much more stable in my arms than in his bed. I was touched that as soon as he heard my voice when I got there this morning, they had to reduce his oxygen from his consistent rate of 29% down to 21% (room air) and he was still high-satting. He couldn't keep it up for long, but it let me know that he needs his mommy and even though he appeared sedated and semi-oblivious, he knew that I was there.


Today is "day of life 76." I can't believe we have been doing this for 76 days. I'm so tired. My hip is out of joint from the way I sit in the car for the commute and from the ergonomically totally incorrect rocking chairs in the NICU. I nap during the day when I can and I go to bed early and it makes no difference. I can't seem to make a dent in the level of exhaustion. I'm so tired that I can't focus on anything.

I know that Crew is my blessing and my miracle. This has been such a marvelous week for so many reasons, but it has also been draining. When I am not so exhausted, it is easy for me to trust that all is going to be well and to be blinded by all the brilliancy of the silver linings in my life and situation. When I'm in a disheveled mental place where I'm falling asleep while pumping, it's easy to get caught up in the drama of the NICU. When people tell you all of the horrible things that are happening or could be happening in his brain and body, you can only shut it out so long. The front line of the NICU sucks.

I know that he is going to be fine. And yet in the very very back of my mind I remember that I can no longer pretend that only "other people's" babies die because it's already happened to me. When he looks pale and he won't breathe and no one can tell me why he's not improving, the nurses don't realize that I'm demanding action and answers because I lost his brother only 76 days ago and I'm not ready to lose him too. I'm too tired and worn down to find my own compass this week. I really really do know that I need to not worry, but sometimes it's just too hard to fight the tide. Please forgive me if I'm not totally sane about the precariousness of Crew's life, considering my unique perspective. And some days I'm simply too tired to find any kind of peace and solace. That takes focus and energy and I'm running desperately short on both of those right now.

A lot of this is coming from the fact that he is so far away. When he was closer to home, I felt like we could endure it indefinitely. Running over to the hospital was almost a happy thing. This situation of having him far away, in a facility that I don't like or trust nearly as much, is much more difficult. Do you remember when I said "we have had so much more consistency with nurses this time!"? Well, that ended that very day. Since the day of that post, we have returned to having a different nurse every single 12 hours.

I just want to bring him closer to home. After that, I just want to bring my baby home and have all professional busybodies leave us alone. I fantasize about sending Kinley off to school and then climbing into my bed with Crew and Tanner to watch Curious George. Really, that's what I think about in the shower these days. Crew, Tanner, The Man in the Yellow Hat, and me. Alas, I know that I am not destined to live a life of solitude with Crew. Once he's home, it's into the arms of the pediatrician, occupational therapists, physical therapists, etc. I have had the strangest conversations with occupational therapists recently. I have a few longwinded stories about their counterproductive philosophies on breastfeeding that will wait for another day.

Don't worry, I'm not always so morose. It's just been building up this week and I needed to vent. You know, like the volcano that I can be sometimes. I promise I'll be less gloomy in a few days.