You Were Only Waiting For This Moment to Arrive

Just a quick status update and some pics today...I'm too tired to write! Things are moving rapidly these days. It seems like AO takes a giant step each day. We couldn't be happier. Since my last post, he was moved from the intensive care nursery to the transitional nursery, where babies like to hang out until they are big and strong enough to go home. He's taking more and more of his feeds via the bottle and seems to be learning how to breast feed pretty well. He's 4 pounds, 2 ounces! He is out of the isolette and in an open bed, which makes handling him much easier. We are able to take him out and hold him at will now, instead of needing a nurse to prepare him. He's quite a screamer when he gets cranky, but our nurse showed us how to swaddle him which magically calms him right down. Our nurse told us she's thinks he's only a week or so away from coming home! What was once unfathomable is now becoming quite real. The house is ready and waiting for him!

I played music for him for the first time. His first song ever was "Blackbird" from the white album. I suprised myself by bursting into tears somewhere around the first chorus. My whole life I had dreamed of sharing my love of music (and specifically the Beatles) with my child and now here I was, finally in that moment. As he slept peacefully to those familiar chords, I was overcome with emotion. Again.

He does not, however, seem to like Barber, Britten or the Books. We're going to have to work on that.

Hitting the bottle

Alex must be reading this blog, or at least be able to intuit when mom and dad are getting depressed about his lack of progress, because this week he pulled a cute new trick out of his tiny hat to cheer us up. He ate from a bottle.

I'm sure this sounds like a little thing to parents of full term babies, but to us this step represented a very crucial turning point in his transition from a critical preemie to a healthy, growing baby. In the NICU they call these guys "feeder-growers," a vaguely creepy term meaning the baby is no longer receiving intensive care but is eating and growing to a size where he can be considered for discharge. At Pennsy, that weight is 4.5 pounds and little AO still has a while before he reaches that benchmark. Today he clocks in at 3 pounds 8.5 ounces, a weight I considered unimaginable just a few weeks ago as I was staring at his impossible tiny toes and fingers.

His nurses and doctors had been reluctant to try him on a bottle because he was anemic and having more episodes of apnea and bradys. The stress of trying to suck and swallow and breathe may have been too much for him. They were holding off on another blood transfusion in hopes that his body would begin to produce its own red blood cells. As his anemia got worse, they decided to go ahead and give him some blood, which freshened him up quite instantly (I wonder how much it would cost to get my own tranfusion, it looks to be quite restorative).

Since his O2 sat levels got much better and his As and Bs decreased after the transfusion, they let him try a bottle on tuesday for some of his feed. He slurped it down nicely and showed no signs of stress. Over the next week they will try to transition him from tube feeds to to full bottle feeds, and then it's on to the boobs.

Other developments. They have determined that AO's strange white blood cell fluctuations are not the result of any impending bacterial infection (just last week the frightening word "meningitis" starting entering our conversations) but are instead being caused by a virus he aqcuired somehow in the past few weeks. Since it has not made him sick they are confident he will overcome the virus with no ill effects. They are glad to finally have an explanation for his abnormal labs, and they have decided to transition him off of the nasal canulla he is still wearing. He is now receiving just a .5 liter flow of regular room air. We could be tube free very soon.

All of this has brightened our moods immeasurably, and it has come at precisely the time when our frustrations were starting to overtake us. It is still hard to fathom his weighing 4.5 pounds, or not having tubes in his mouth and nose. Even harder to imagine is the day when we will place him in our car seat and simply walk out of the hopsital with him. But that day seems mercifully closer now.

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.

Eyes Wide Open

Sorry that I haven't posted in while, but thankfully there has been precious little to report. Alex's progress has been slow and steady ("boring") with very few setbacks. He continues to grow, reaching a whopping 2lbs 15 oz as I write this. While still tiny by any reasonably definition, he is filling out and looking more like a baby than a primordial amphibian (is it ok to say that? He'll never read this , right?) His eyes are opening ever wider and he seems to be able to briefly focus on things nearby. Kris printed out some simple black and white images to hang in his isolette so he has something to look at other than wires and tubes. We've got a target, some Motherwell images, and the Black Flag bars because it's never too early to learn about punk rock.

I've had some difficulty coming to terms with this strange arrangement. We have a son, but he is not here. Even though I see him almost every day, he was sort of becoming an abstraction, a concept of a baby rather than an actual human being. A baby in the hospital, to be visited and then left there to rest and recover. I suspect this had something to do with the fact that I haven't been holding him very much. Last week the docs were concerned about an infection (which didn't materialize, thankfully) and didn't want us to overstimulate him by holding him. When he was able to be held, Kris did the honors. I felt that I was not fully bonding with him...I even had a moment of resentment towards Kris because she was able to hold him to her breast for non-nutrative suckling, a sort of preparation for his eventual breast feeding which gets him used to the feel and smell of nursing. During these moment Kris was glowing, fully maternal and fully connected with our child, while I could only sit and watch. I felt fairly close to useless, or at least superfluous. It was a fleeting moment of jealousy and it startled me to feel it.

But since Alex has emerged from his infection scare, we've been able to hold him every day. Two days ago I kangarooed with him for almost two hours and I can only describe the feeling it evoked as "spiritually replenishing." He was cooing, looking around and up at me. I felt like a father. I felt fully engaged with our baby. It was one of the greatest feelings I have ever experienced.

And so he lay over there in his glass box while I'm here at my computer. He's eating and sleeping and growing, and next week they are going to see how he does without any nasal canulla. He may even start taking milk from a bottle. Things are moving forward. Soon he'll be three pounds, then four pounds, then one day they will simply hand him over to us with a hug and a handshake. And then we'll start a new adventure with this mysterious boy, at home.