Parenting, Chapter 1

I haven't had the heart to read through my old posts to this blog. I'm not yet ready to revisit the emotional twists and turns that our pregnancy took. We've been enjoying having Alex at home and learning the exhausting realities of parenting a (sort of) newborn. So while this blog maybe be less active, I may occasionally post some thoughts or observations here and there about AO and his progress from former preemie to genius musician and fireballing left-handed starting pitcher for the Philadelphia Phillies.

But I'm getting ahead of myself.

One thing that always annoyed me when I told folks we were having a baby is when other parents would curl their lip in malevolent glee and sneer "oh? Get your sleep now, because THAT"S ALL OVER WITH." What an odd response to such wonderful news, I thought. And surely they are exaggerating the way people do when they want to make their experiences seem more diffcult and important than they really were. Exaggerating.

They weren't exaggerating. Perhaps there are babies who sleep at night. Ours does not. In fact, just to rub in the fact that he isn't going to be sleeping at night, he sleeps all day instead, when Kris and I need to be up and doing stuff. As soon as the lights go out and we place our heads to pillows, AO's nighttime adventure begins. We've been taking shifts just so we both can scratch together some sleep, but as of now we look like extras in Dawn of the Dead.

Throw into the mix the pure evil that is AO's apnea monitor. This machine has two electrodes that attach to the boy and measure his breathing and heart rates. It is connected to him at all times and we have to lug it on our shoulder if we want to walk with him. He has it because of his spells of apnea in the hospital. Luckily, in the three days we've been home, it hasn't gone off once due to any trouble with his breathing or heart.

It has, however, gone off about 87 times because the mother effing electrodes keep falling off the boys tender skin. Friends, this beast is loud. Piercing. It is calibrated to a frequency that is the aural equivalent of lancing your ear drum with an ice pick. That is on fire. It goes off mainly at night, just in case we might have accidentally fallen asleep for a minute.

But, it is monitoring our boy in case any thing does go wrong, so I can't hate it too much. Once he doesn't need it (4 weeks maybe) I'd love to throw it off the Ben Franklin, but I'm sure my insurance company would frown on that.

Finally, one last thing. We had our first trip to the ER last night. Yesterday his usual baby spit ups turned decidedly worse and he had several instance of projectile vomiting that would make Linda Blair proud. Somewhere on one of the many doctors sheets we were given it said to call in if this happened. We dutifully called the pediatrician and the nurse on call told us to take him in the ER "just to be safe." I knew what was going to happen, and it did. Five hours after checking in to the CHoP ER we finally got in to see a doc who told us it was probably reflux. Which we already knew.

It's been an exhausting first few days, but it has been strangely enjoyable. I like caring for this tiny boy who fought so hard to come be with his parents. Must be love.

Here Comes The Son

Friends. This is the post I've been longing to write for months now. Alexander Owen Kennedy was discharged from the hospital today and is currently snuggling in his mother's arms on our couch, in our home. We are finally a proper family. My emotional state is currently going bonkers, so I won't write too much about this right now. Suffice to say we couldn't be happier.

I want to thank our friends and family for supporting us through this most difficult summer. I want to thank the doctors at Penn, especially Dr. Sam Garber, whose calm and steady demeanor was reassuring to us whether the news he was explaining to us was good or bad. He's the kind of medical professional one would call "inspiring."

And of course, we thank the wonderful nursing staff of the NICU, who cared for, fed, bathed, changed, calmed, and loved Alex during his stay. We are forever indebted to these women, especially his primary nurses Vildan, Lynn, and Leneya. The difficult task of leaving Alex at night was made easier knowing that you guys would be taking care of him. Our family will never forget you. Alex will always remember your names.

Maybe I'll write a recap post when I can get it together. For now, I'm just going to cry a bit more and look at my son sleep in our living room. It was a long summer. I'm looking forward to the fall, and beyond.

I love Alex, I love Kris, and I love you for taking the time to read this blog.

Still waiting...

You know that old bit where some prankster attaches a dollar bill to an invisible filament and leaves it just lying there on the sidewalk? And when an unsuspecting victim leans down to retrieve said dollar, the prankster yanks it a few feet out of reach; poor victim shuffles towards it, leans down again, and the bill is once again yanked out of reach. Repeat. Hilarity.

Well right now Kris and I feel like that sorry fool reaching towards the bill. AO's homecoming has been deferred by "just a few more days" so many times it is starting to feel like a cruel joke. We're frustrated of course, but it really is in his best interest to keep him in the hospital until they are absolutely sure he is ready to come home. For a few days he wasn't gaining any weight, so they added fortifier back to his milk. He started to gain weight but then he was spitting up too much. Add to this the fact that the fortifier the hospital uses is prohibitively expensive for home use. We are trying to see if we can use powdered formula as a breast milk fortifier. If this works, and he continues to gain weight, then he can come home.

They say this could be as early as tomorrow, Wednesday the 16th of September, 88 days after he was first admitted to the NICU. That's right, they say he could come home tomorrow. Stop me if you've heard this one before.

Limbo Summer

Apologies for those coming here in search of updates on AOK. I haven't had much time or energy to write recently. Football season has been gearing up (starts tonight!) and so work has become more demanding. I've also been trying feverishly to get our band's new collection of songs recorded before I'm on constant diaper duty. (The album will be ready in October. It's five songs that are obliquely about the experience we had this summer.) I've not been sleeping well and therefore my mind has been too cloudy to formulate thoughts for this blog.

It's been a frustrating set of weeks since my last post. Alex has been fine, health-wise, but has been unable to take that final step which would allow the doctors to send him home. He was taken out of his isolette several times but was unable to hold his temperature. This caused him to lose weight and earned him a trip right back into his box. He was switched to ad lib feeding (meaning he is fed whenever he shows signs of being hungry) but after gobbling up way too much milk right away he vomited quite prolifically and his conservatie docs restricted his food again. Subsequently he didn't gain any weight for an entire week. It was like time stopped completely for me and Kris and it seemed like we might be coming to the NICU for the rest of our lives to visit our miniature baby who refuses to grow.

Melodramatic? Yes, but your mind does funny things to you in the NICU. We seen dozens of babys and parents come and go while we feel temporally suspended. The din of the monitors and alarms doesn't even register anymore. During AOKs first few days in the hospital, the sound of his dsat alarm would paralyze me with anxiety and send me running out of the room. Now it barely even merits a raised eyebrow. Of course I have learned that it is a common alarm and doesn't mean the boy's heart has stopped or anything like that. But I have become densensitized, which might be a handything given that they tell us AO will have an apnea monitor on him when he does come home. I wish I could convey to you how loud this thing is.

STOP THE PRESSES! Kris just sent me a text saying that Alex is getting his car seat test today and if he passes it, he will be coming home this weekend! The seat test just monitors him while he sits in a car seat for an hour to make sure it doesn't restrict his breathing or cause any cardiac trouble. This is the final stage of our insane journey. We have stared in longing jealousy at AO's baby neighbors while they underwent the test, knowing that it meant their happy parents would soon be bringing their child home. I can't believe this is happening to us finally. Give me some time to process this. I will post more when I know what's going on.

Could this be it? The end of one long road and the beginning of a much, MUCH longer one? The mind reels. To be continued...

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.