Hitting The Wall

Fifty-one days so far in the NICU, and 11 days in the antepartum unit before that. Sixty-two days straight of visiting the hospital at 8th and Spruce. It's beginning to take its toll on our mental health. Both Kris and I are starting to show signs of depression: we're listless, exhausted but unable to sleep. We've no interest in eating most of the time. We're irritable with one another. I get furiously angry at inconsequential things like a slow internet connection, or lack of parking near the hospital. Add to this stress the fact that our household budget barely reaches into the black each week as we adjust to being a single-income family. It's adding up, and it's draining me. I'm struggling to stave off the feelings of profound sadness by concentrating on music or work, but even there my focus is becoming cloudy. I feel like I'm sleepwalking through the days and even when I am in the NICU with my son, I have to spend most of the time staring at him as he sleeps in a plexiglass box and even he is starting to seem not real. Distant.

We desperately want our boy to come home with us so we can commence being a real family, but Alex has yet to turn that corner and give us any sign of when he might be healthy enough to be discharged. For the most part he is fine, or at least not too bad for a fragile preemie. He suffers from reflux, but there really isn't anything that can be done for him other than positioning him to minimize the regurgitations. They won't prescribe reflux meds to such a small guy. His episodes of apnea and bradys were decreasing until this week, when he became anemic. Rather than give him a blood transfusion the doctors were hoping that he would begin to produce red blood cells on his own. This failed to happen, and after tests showed a decreasing red blood cell count and increasing bouts of bradys and dsats, today he  received another blood transfusion.

Another boondoggle is the fact that he shows strangely high levels of white blood cells every ten days or so. Because elevated white blood cells can mean infection, the doctors run him through the traditional course of treatment for sepsis, meaning he gets a broad spectrum antibiotic delivered via IV. However, every time this has happened (3 or 4 times so far?) his WBC count resolves to normal levels on its own within hours or a day and blood cultures come back with no sign of infection. The docs are stymied. Although they cannot explain it, they assure us that this is still normal for a baby like AOK. If this continues as he gets more mature however, it will prevent him from being discharged. It is very disheartening to see him struggle on these days: he becomes pale and listless, his monitors beep like crazy. I feel helpless yet again. Nobody seems to think this is anything serious, but I've been conditioned to fear the worst. 

I've been reluctant to write about this recently because I am starting to lose my energy for describing this situation. Last week I had to explain the whole story three separate times to coworkers who didn't even know we had the twins yet. They meant no harm of course, but the effort it takes to reveal that we in fact had the babies and that one died and the other one is still in intensive care and will be for indefinite amount of time is becoming too much for me to bear anymore. As our other pregnant friends have their babies and are sent home in a day or two, the old feelings of jealousy start to bubble up, this time coupled with a strange burning sense of anger. Why did this happen to us? A pointless question to ask, or course, but one that I find myself facing more and more often. I'll do my best to stay positive.