AOK, one month old today

I just realized that my last post left the blog hanging on a down note. It turned out that AOK's feeding setback was just a minor one. They stopped his feeds for 24 hours to examine him for any signs of infection. Satisfied that he was fine, they put him back on his regular eating schedule. In fact, he is up to 22 ccs of milk every three hours and seems to be tolerating it quite well. He is (for the most part) holding down his vitamins and milk fortifier, and he's putting on about an ounce of weight per day. He's clocking in at a sturdy 2 pounds 9 ounces today.

He seems to be a pretty tenacious little baby. Whenever the nurses stretch their arms into his isolette to bath him, or change his diaper, or poke him with a needle, or anything at all really, his little limbs flail and stretch and swat at their hands. He pulls the tubes from his nose, because wouldn't you? It's kind of heartbreaking and funny at the same time, if that makes any sense. Such a tiny  little person so filled with determination.

I'm warning you, I'm starting to sense that any time I try to write about my boy I am just going to descend into the purplish realm of schmaltz. So forgive me if this turns into the verbal equivalent of an Anne Geddes photo. This child's eyes are starting to focus and open wide and when I say his name to him he struggles to look up at me. We have locked gazes briefly here and there and I when we do I can sense the fact that we are mysteries to one another. But I have never felt anything akin to the feeling I get when he looks at me. I'm proud of this boy just for having the strength to make it this far.

We planted a tree in honor of Nicholas at my grandparent's house on Saturday. We were joined by a small group of family and our oldest friends. I just said a few words and then my brother and father and I placed the tree and scooped the dirt with our hands to cover the root bulb. It was a simple and moving moment, and it occurred to me that this small ceremony was more profound to me than any of the elaborate funerals I have ever attended with their incense and pallbearers and hymns and robes and priests delivering eulogies while reading the deceased's names off of notecards. I was so thankful for everyone that attended.

Speaking of funerals, I had to attend the funeral of my cousin Michael Penny today at my old church in Somerdale, NJ. Michael battled muscular dystrophy his whole life. He wasn't supposed to live past the age of fifteen. He was 33 when he died and I know that the reason he defied all of those dire predictions was because of his determination and the love and care of his family. The guy did more with his life even with all of his physical challenges than most folks do who have full use of their body. He was an honors student, a writer, a businessman, and he really was an inspiration to everyone he ever met. I would suggest to myself that the next time I feel like complaining about something, think about Michael, who never complained despite the difficult hand he was dealt in life and who instead just set out to accomplish things despite his challenges.

And now for that promised one step back.

See what I get? As soon as I post about the fact that Alex has had no setbacks, he goes ahead and gets set back. Hopefully, this is nothing major, just another example of the doctors being extremely cautious. He had been up to eating 18 ccs of breast milk every three hours. After a few days of reflux and related minor problems he seemed to be tolerating his food very well and was up to 2.5 pounds. They started him on multivitamins and began fortifying his milk with high calorie formula.

Yesterday right after his morning feed however, he spit up some green bile, which could be the sign of an infection. The doctors, fearful of his developing a dangerous infection or rupture in his digestive tract (known as NEC) immediately stopped his feeds for 24 hours while they ran some tests. He has shown no other signs of illness and xrays of his belly reveal no ruptures or signs of infection. Because he seems ok, he began feeding again today at noon, at a reduced amount of 9 ccs every 3 hours. Hopefully this was just a temporary reaction to the fortification of his milk and not the sign of a major problem to come. I am a little disappointed because I was so excited about the idea of him gaining weight, but hopefully this is just a minor step backward.

As the staff has told us: "expect setbacks." Of course my mind has now been recalibrated to skip directly to the worst case scenario, but I am fighting this urge and trying to take each day for what it reveals to us instead of trying to extrapolate long term outcomes.

Up next week for AOK: the first of many eye exams. Because he is is so small and was born so early, he is at increased risk for a kind of eye condition called retinopathy of prematurity. This condition can lead to impaired vision or blindness in the worst cases but is treatable if caught early. So his eyes will be carefully monitored as he gets bigger. Just another nugget for the bag of worry.

In One Vein and Out the Other

"Alex is boring. We like boring."

So said our doctor a few days ago. He has a very calming way of delivering nice colloquial assessments of Alex's condition. As the NICU staff has explained to us, preemies have a way of "taking two steps forward, one step backward" during their stay in the hospital. Alex, however, has been mostly moving forward so far, avoiding most of the major complications associated with babies born so early. Other than the normal As and Bs (apneas and bradys) and one or two fairly frightening dsat situations, it has been a calm NICU stay. Of course we are in no way able to completely relax, as something troubling could occur at any moment. Not to mention the fact that we have to consider the long-term implications of his prematurity. He is at higher risk for any number of eye or ear problems, developmental delays, learning disability, social or behavioral problems. Many of these things could take years to manifest, so you can look forward to seeing me pace around nervously for many moons to come. One positive side effect of this is that the unexplained episodes of anxiety attacks I'd been experiencing the past few years have completely subsided. Instead I can now focus all of my latent anxiety like a laser on the well-being of my baby. Like a nervous laser.

As Alex was up to a full feed of milk, the nurses were able to remove the IV that was delivering his supplemental nutrients a few days ago. But yesterday a slightly elevated white blood cell count in his labs meant that the IV was replaced to administer a three-day course of antibiotics. He is not showing any symptoms of being sick, but they want to preempt any kind of infection before it gets out of hand. He is also set to receive multi-vitamins and fortified breast milk with a higher caloric content so he can put on the ounces. We'll see how he tolerates that.

Kris and are are getting together this saturday with our close family and friends to have a small memorial ceremony for little Nicholas. We're just going to plant a small tree at my grandmother's house in his honor. I'm trying to think of a few things to say about such a brief life. I simply cannot process how much his five difficult days on earth have changed us.

In other news: I was punched in the face after being caught in the middle of a bar fight while trying to relax and have a few beers with my buddies, the stress from the past month has caused an ugly flair-up of my eczema, and getting an appointment with my dermatologist is like getting a meeting with the President of the United States. The doc can see me...on September 24. Must be a lot of bad skin in Philly this time of year.

Alex, almost three weeks old. And other anecdotes.

Alex continues to do fairly well with his feeds. They are still gradually increasing the amount of milk he gets, and soon he should be on a full feed of milk and able to come off the supplemental intravenous nutrients. Which means he can lose another tube soon. His digestive system works pretty slowly still, and he has been having some difficulty, um, "processing" the milk in a timely manner, but so far there have been no symptoms of injury to his miniature digestive tract. He is back to his birthweight of 2 pounds 5 ounces and has been hovering around that number for a few days. Hopefully he will start to add weight again soon.

He's been having a little bit of reflux after his feeds, with milk creeping its way back up his throat and into his nose. Whenever this happens he tends to have some apnea spells and a dips in his oxygen level, both of which cause the monitor alarms to go off and both of which seem to occur as soon as I arrive in the NICU. The nurses seem nonchalant about this and the doctors have told us not to worry about these spells but there's just no way I can stave off the panic attacks. Usually a little stimulation or repositioning of his head or a slight increase in his nasal O2 corrects the problem, but the adrenaline in my bloodstream usually last for hours afterwards. Perhaps I can talk a doc into prescribing me some valium so I can actually enjoy my visits with my son. Just kidding. (Not really.)

Last night, Kris and I finally got to go to a Phillies game again. We are partial season ticket holders but we've had to miss the past three games for obvious reasons. It was so nice to be back at the ballpark, comforted by the symmetry and routine of the game, the season just moving forward as if nothing out of the ordinary had happened. There was a somber note to our enjoyment, however. A young couple who have the same season tickets just a row in front of us lit up when they saw Kris. Though they are strangers, they'd been casually getting updates on our pregnancy throughout the course of the season. The woman said "amost time, huh?" and we had to tell her we had the twins prematurely. "But they're both healthy, right?" Well, no...I explained that we lost one and the look of sadness that welled up in her eyes was crushing. I could see how much she regretted bringing it up, and I ended up trying to comfort her, oddly enough. It's ok. It's ok. We are dealing with it and our other boy is doing very well. I sort of feel like we ruined their night. Kris thought we should have just lied and said everything was fine and be done with it but I knew that we'd be seeing these people until September (October?) and I couldn't bear the thought of concocting false updates about two healthy twins for the next two months. As a couple, we are forever changed. We will always be parents who lost a child. We shouldn't hide this fact just to make a social situation easier. I really did feel bad for this nice woman, though. Thankfully, the Phils won, there was a rare inside-the-park homerun, and the game ended with fireworks. Spirits were lifted.

Fianlly, I'm happy to report that the events of the last two months have helped me to erase most of the beer belly I've been slowly working on over the past five sedentary years. Thanks to stress and the inability to eat a full meal of any sort for four weeks, I've dropped several pounds and can almost see my abs. While I'm pleased with the results, I cannot in good conscience recommend this diet to anyone.

Have a great weekend. We have a bunch of pictures to upload and hope to get to it soon.

Random Notes

It is an odd feeling to be a parent and yet have no child at home. Kris and I have settled back into a revised version of our pre-pregnancy life: cooking meals together, barbeques in the park, going out with friends, sharing a bottle of wine on the couch while we watch the Phillies or a movie. And yet, there exists in the world a tiny little person to whom we gave life. We have a son. Sometimes we will just look at each other in disbelief and say it: "we have a son!" It never ceases to cause nervous giggles. But our son doesn't live at home yet, and so accompanying this giddy feeling of new parenthood is a distict sense of his absence. Of course we can visit him whenever we like, but it isn't the same as having him napping just upstairs in his nursery. I am a dad and yet not fully a dad. I can't wrap my head around it. Kris can pump her milk and freeze it in her little labelled bottles; she is literally able to express her motherhood. All I can do is walk around in a haze bumping into things.

I enjoy seeing my son. This past week he has been shedding medical devices, tubes, and wires as he gets healthier. He is no longer under the strange blue lights they used to treat his jaundice so he doesn't have to wear an eye mask anymore. The thrill I get when he opens up his eyes and seems to stare right at me is indescribable, even though I'm sure I just look like a pile of shadows to him. Yes, I enjoy visiting him, but being in the NICU does not provide me with much comfort. I'm so scared of losing this little boy that all of the incidental lights and beeps of his monitors cause an overwhelming anxiety in me. I know that it is common for a preemie to have an apnea spell, or a momentary drop in his oxygen levels. But whenever his monitor starts whirring and beeping during one of these spells, I almost faint. Every time. I end up leaving the NICU more shaken than when I entered. I think I may need to stay away for a few days to reset my central nervous system, but then I feel guilty about not being there for Alex. Kris doesn't seem to have these problems, she takes it all in stride. I can already see our parenting styles beginning to take shape.

Yesterday when we entered the NICU we walked in on four of the nurses engaged in a heated philosophical/religious discussion. There were two atheists, a Catholic and an evangelical Christian discussing evolution, divine providence and the existence of miracles, which let's face it are probably not the best topics of discussion for two athiests, a Catholic, and a evangelical Christian. As one nurse put it to me: "things can get pretty heated in here after our 4pm coffee." She was right; these women were going at it, in a good natured kind of way. While I find it hard to believe that one could retain any sense of divine order after working in a NICU, it struck me that these women seemed even more sure of their individual belief systems precisely because of their experience in the NICU. What one woman sees as a triumph of science and technology, another sees simply as god's grace working through the skilled hands of the doctors and nurses. When word got out that I was on the side of the athiests, they tried to draft me into supporting their argument, but for once I knew to keep my mouth shut. I've never been able to comprehend people's ability to thank god for things that go right and then exonerate him for all the stuff that goes wrong, chalking it up to some mysterious divine plan. But I wasn't about to argue with any of these women who are nursing my son back to health. I politely declined the argument, saying "I'm not getting on anyone's bad side in the NICU!"

I know I'm getting off topic but there has been thankfully little to report about Alex. He is up to 7ccs of milk every three hours and things are going well. He is off his nasal cannula and has gained about 6 oz. We have been able to bathe him (he did not like) and hold him and he is without a doubt the most perfect tiny little baby I have ever seen. I'm sure they all say that, but seriously. He is.

Please check out Kris' blog. She's posting from the journal she kept while she was in the hospital trying to stave off labor.

Alex Report

I felt better yesterday so I thought it would be ok to visit Alex in the NICU. I kind of forgot how tiny he is. He's been doing very well. Still off the ventilator, he is receiving only humidified room air via a nasal cannula to keep his airways open. These tiny babies have a bad habit of forgetting to breathe occasionally, which leads to a lowering of the heart rate, lots of beeps and alarms, and a stern tapping of the foot from a nurse to kickstart their lungs again. The cannula helps them to continue breathing. They tell us that he is doing pretty well with these apnea and  brady spells, but of course whenever we visit he likes to have one or two of them to keep me on my toes. Hopefully as he grows and gets stronger these will go away.

They started feeding him on Kris' milk four days ago and he seems to be tolerating it well. They start very slowly with just about 20 ccs per feeding and they will gradually increase this amount over the course of ten days to get his immature digestive system acclimated. They have to be very careful during this process because he is at risk for various kinds of injury to his digestive tract. So far, so good. The breast milk (referred to as "liquid gold" by our doctor) is so good for him. He should start to put some weight on and soon he will look more like a baby and less like a groggy salamander.

In other news: it appears now that I am a crier. I'll just go ahead and weep at the drop of a hat now. Even at good things. I was able to kangaroo with Alex yesterday ( a way of holding him skin-to skin). I opened up my shirt and they place my tiny son against me. I felt his miniature fingers trying to clutch my chest and the floodgates opened up like I was a teenage girl who just met a Jonas Brother. I mean I cried, friends. Pure love is something else; you can feel it in your veins. It is all encompassing. I had no idea.

Let's hope for more of these happy moments. Enjoy your weekends.