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.

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.

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.

AOK

I haven't been up to writing these past few days. We've been through so much emotionally that there is no way to encapsulate it in a blog posting. I wish I had the gifts of a writer like Joan Didion so I could do justice to Nicholas in an eloquent rendering of the pain we've been through, but I do not, and that's ok. Over the course of time I will be able to discuss in more detail what has transpired. It is true that in his brief and troubled five days on this planet, my tiny son Nicholas was able to evoke in me emotions deeper than any I have ever felt before, and that without ever uttering one word he changed me and my life and my relationship with my amazing wife irrevocably. He will never be forgotten; we will see him every day when we look at his brother Alex, his identical twin. While Nick's story has come to a painful and all-too-quick ending, Alex's is really just beginning. And what a story it is.

And so, with apologies to Kenny Powers, so begins Chapter 2: The Next Chapter. Or: Life In The NICU. 

Born at 26.4 weeks gestation and weighing in at a tenacious 2lbs 5oz, our boy Alexander Owen Kennedy is now a cranky, long-term resident of the Pennsylvania Hospital Neonatal Intensive Care Unit. This ward is home to the sickest and most premature babies and the most exhausted and distraught new parents. Caring for all of them is a group of nurses unlike any I've ever encountered before. These women have devoted their careers to caring for sick babies at the most critical stages of their lives.  I know that even on my best days I would not have the emotional strength required to provide clear-minded, even-handed care to these tiny patients. Watching the babies come and go in the NICU, I wonder often about the bond these nurses and doctors form with their charges. At worst, some of these babies won't make it despite the staff's best efforts; at best, the kids will stabilize and ultimately leave the care of the nurses after many, many weeks. And yet these nurses are the most serene and helpful people I've yet to encounter in the health care industry. In fact the only reason Kris and I are able to sleep peacefully at night is because we know that the nurses of the NICU are there for Alex. (OK, in my case the box of cheap wine also provides a nice assist.)

I will describe in more detail soon the NICU and some of the things that go on there. Suffice to say it looks and sounds like the set of a Stanley Kubrick movie, and its walls have seen enough hope and anxiety to last many, many lifetimes.

Alex is doing well, breathing on his own, and awaiting the day that he can begin feeding on mother's milk. I know that Kris has been longing for this day, when the physical bond can be reestablished between her and our son. It may be as early as tomorrow.

I hope to write a more comprehensive account of Alex's story soon. Sometimes my thoughts run away from me on this blog. But eff it, it's therapy. Thanks for reading.

Nicholas Harrison Kennedy

June 20-June 25, 2009.

Loved forever.

Home

Kris was discharged from the hospital yesterday, and we were able to take some comfort in spending our second wedding anniversary together at home instead of the maternity ward, which was becoming increasingly tiresome. The sight and sounds of all those moms with their normal, healthy births, happily nursing their crying newborns was beginning to make us extremely sad and, at leaat for me, was starting to inspire some ugly feelings of jealousy and resentment towards these innocent happy moms.

So it's good to be home. Kris is recovering well and is of course pushing herself harder than she probably should be since she is an unstoppable force of nature. At home, it was nice to have visits from some friends to chat, share a beer and listen to music. Special thanks goes out to to our wonderful friends Megan, Daylen, Stacey, Ruth, Dana and Syd, who brought us some fine cheeses (Kris has been unable to eat brie for months), wine, and an entire anniversary dinner that we enjoyed in our backyard. It was a much needed moment of peace. Later on, our neighbors brought us even more food. I think I will be able to put back on alll the weight I've lost these past few weeks.

It is nice to be able to fall asleep with Kris next me again. But for some reason, when we first wake up the pain of our situation is so strong we spend part of the morning crying together. As the day progresses we become calmer and more at peace. I remember this same pattern happening when my mother was sick and after she died. It's almost like you have to remember all over again each morning what you are going through.

We are about to head to CHOP to visit with Nick. Kris has yet to see him other than when they held him up right after he was born. It is not going to be an easy visit. I am sure we will have a serious talk with the docs about what is going on. He has been having seizures again. Very soon we will have to make a decision about whether to continue him on life support. In our hearts, we know the right thing to do. We will have to find strength to make this decision and hope that we will eventually be at peace with it.

I will try to post more about Alex after we visit him today. He has been doing well. He was on medicine to close up a hole from his lung to his aorta called a PDA (a common thing for preemies) and we should know how well the medicine worked today. If it worked well, he will be able to start feeding on tiny amounts of Kris' milk. And soon, we will be able to hold him. When he is stable, we will begin practicing kangaroo care. This is the process of holding your baby skin-to-skin and it is extremely beneficial to the baby's development. More on this later.

Thanks again for everything, friends.

Hope and Sadness and Love

This was a difficult weekend, and yesterday was perhaps one of the worst days of my life. Ironically it fell on Father's Day, a holiday I didn't expect to be celebrating for another year. I'm finally home for a few minutes for a shower and a change of clothes (and, I'll admit, an early afternoon beer). I'm not one for cliched use of synecdoche, but I will say that my heart has been stretched so tightly between the opposite poles of happiness/hope and sadness/despair that it truly seems ready to break. And yet my ordeal is nothing when compared to Kris', who has had to endure all of this emotional distress on top of her own physical recovery from her surgery. My love and admiration for her has never been stronger and if any of you ever see me out and about taking her for granted, do me a favor and punch me squarely in the jaw with all your might.

Briefly, the facts. After a week and three days of deferring labor with various drugs, the doctors decided early Saturday morning that the births could wait no longer. Kris had dilated to 5-6 cms and there was clearly some unknown problem that they were just prolonging. I was called at 5:30 AM and I ran every red light from Fishtown to 8th and Spruce to make it. After a procedure that seemed quicker and less painful than my wisdom tooth extraction, Nicholas Harrison (previously Mr. A) and Alexander Owen (aka "B") were in front of our eyes. Tiny fellows: both 14.5 inches long, Nick was 2lbs 8 oz and Alex was 2 lbs 5oz. Both wrapped their tiny hands around the tip of my finger and in an instant every conception of the idea of love that i had ever previously felt was dwarfed by an emotion so profound that all I could do was cry uncontrollably. While fumbling with my iPhone to take a picture of them. 

A few hours later, after they were intubated and strung up with dozens of wires, Nick was transported to CHOP so they could monitor and deal with his CCAM. Kris was sent back to recuperate. I sat in a chair. For about 27 hours.

This part is hard to write, but these are the facts and I have to deal with them. Yesterday Nick had a seizure and was given a head ultrasound to see if he was bleeding in his brain, something that premies are at risk for. Indeed, he was bleeding on both sides of his brain, both in the ventricles and in the brain tissues itself. Of the four levels of severity that bleeding can take, his was grade 4, the worst. I don't think this has anything to do with his lung issues, but then again that probably didn't help. The doctors think this may have started in utero. As one can imagine, the prognosis is not good. The likelihood of him surviving lung surgery, or surviving it without sustaining even worse bleeding is slim. And even if he did survive, they tell us that the neurologic damage he is going through now will be devastating. He will have cerebral palsy and may never develop cognitively beyond the level of an infant. It is likely that this week we will be asked to make a decision about whether we want to continue him on life support. I don't know how anyone can deal with an ethical issue of this magnitude, but we will make this decision this week. (I ask the religious among you to withhold your moral judgement or ethical suggestions, because I will most likely say mean things to you in return, and I don't want to do that.) We will know more as the week progresses.

On the other side of this fucking see-saw is the boy Alex. I am so frightened to entertain a hopeful thought about this kid, but by all measures he is doing very well for an infant born so early. He is breathing on his own and everything looks good for now. He is receiving medicine to deal with a common premie condition called PDA or something that I don't understand, and once that is resolved he can begin feeding through a tube. Kris has been to see him several times and her usual stony disposition has melted away into a display of maternal love so tender that I almost fainted. Of course, Alex is still critical and it will be some time before we can truly start to feel some sense of calm. But today we are allowing ourselves a slight feeling of hopefulness.

There's so much more I want to say. But I need a shower, and a nap, and maybe some lunch. Thanks again to everyone who has sent messages, visited, offered their help. We have never felt so loved. Whatever the outcome, we will get through this because of you guys. Special note: NO THANKS to the Philadelphia Phillies, who have repaid my support by going 1-8 at home during my time of need. I'll remember this, guys.

Trying to retain some levity here. Bear with me. I love Kris, I love Nick, I Love Alex, and I love you.

One more week

It is an odd kind of loneliness, spending the evenings separated from my wife and nascent children, reading, watching TV, strumming the guitar, doing anything to take my mind off of this situation so I might grab some sleep. Especially when I have Cole the Dog staring at me from his bed with a curiously suspicious stare: "where the hell have you taken Kris. I 'd prefer her to you, you know." I can't stay overnight with her anymore as she has been transferred to a different unit. I was unprepared for the physically palpable feeling of sadness and helplessness I go through when I leave her in the evenings. To say that Kris is a strong person would be a ridiculous understatement, but I feel awful that there is nothing I can do to lighten her burden right now.

Enough about me. Kris' condition has remained pretty much unchanged since Saturday. She's been having mild contractions every 5-8 minutes or so and she hasn't dilated any further. (I never thought that I would be discussing the state of my wife's cervix with so many people, including co-workers who I am otherwise unfamiliar with. "How's Kris doing, Mike?" "Fine! Her cervix has thickened up since we last spoke, Fred. How's your better half?")

So here we are almost one week later from that scary day when some dude walked into the room and told me they were THIS CLOSE to deciding to take the kids out. Every week is crucial. Here's the thing, though. This is why there can be no relaxing. This could all change in an instant. Today, Kris noted that the contractions were ever so slowly speeding up and becoming more painful. By 3pm she was tracking at three minutes apart and the contractions had changed from mild cramps to outright painful. The docs made the decision to put her back on the indocil, to try to relax and control the contractions. And it seems to be doing the trick for now. When I left her tonight she was tracking at 6 minutes and the pain had subsided.

And now I'm back home with Cole and Steely Dan and a box of syrah (not bad, btw). It's pretty clear that this is going to be a constant back and forth struggle to stave off labor. I am pretty sure we aren't going to make it to 32 weeks as we had hoped. Every day we can steal helps.

I want to thank everyone who has come out to visit Kris. It is really making her days and nights a lot easier. I want to thank Meg and Andy for attempting to help me feed myself, and Fiona for helping with the animals, and Mary for bringing food and supplies, and everyone else. The happy side effect of going through a difficult situation like this is realizing just how lucky you are to have all of these amazing friends and family. I would recommend never taking this for granted. The support we have been shown from friends--both lifelong friends and brand new friends--has been nothing short of inspiring, and it's so beautiful it makes we want to cry.

But instead I'll pour another glass of wine from this spigot and thank you once more.

Why not make this story even MORE exciting

Ah, the beauty and joy of pregnancy. It really is a gift from god.

Kris went for our weekly ultrasound yesterday morning, and the docs informed us that Mr. A's CCAM is indeed still growing: the CVR is up to 2.1! Time to start taking some action, so they were planning on giving Kris two injections of steroids, 24 hours apart, which has been shown to stop the growth of these lesions. BUT WAIT! Kris started complaining of severe back pain while on the ultrasound table, so the technician poked around and found that Kris' cervix was starting to shorten: symptoms of preterm labor. They threw her in a cab and sent her to Pennsylavania hospital to be evaluated by the labor and delivery unit, and I left work to meet her there.

The normal contractions that Kris had been feeling during her pregnancy started to turn quite painful and more frequent. They gave her the first of her two shots of steroids, which is both for the CCAM and to help the babies lungs if they indeed are born early. But when the nurses saw saw Kris beginning to dilate, all hell broke loose. They  started her on a dose of magnesium sulfate and some other mystery drug to try to stop the progression of her labor. We are only at 25 weeks, and while they have had success with babies born this early, we really could use more time. A lot more time.

There was about an hour there where I thought they were going to throw a cap over my head, wheel us into the OR and bring these dudes out. A neonatologist came in the reassure us with some helpful statistics about retinal detachment, brain bleeds, premature survival rates, intubation, extubation, and about fifty other things I didn't register becuase all I could think of was TINY BABIES. One interesting statistic caught my interest, oddly enough. Fifty-eight percent of identical twins are born premature. I thought: great, with all of the terrible insane odds we've unwillingly beaten, for once we're in the majority.

Things have settled. Labor, for now, has seemed to stop progressing. No more dilation. Kris is still contracting, but they are not painful and they are becoming less frequent. She will receive these drugs for the next 24 hours and then we will hope that she stays pregnant for many weeks. Doc says that she could continue to have these background contractions for weeks; as long as she doesn't go into labor we are good. Way back when they said they really hope to get the wonder twins to 32 weeks. Seems so far away now.

Oh, and we have to stay in the hospital until the kids are born, whether it's tonight or 8 weeks from now. We were really hoping to get away from the house this summer before the kids were born, but we were thinking more of a place like with a beachfront view or a pool. Something like that. At least the room has cable and I can watch the goddamned Phillies.

Pennsylvania Hospital, 8th and Spruce. Visiting hours 11-8.

I am never impregnating anyone ever again.

One Step Forward, 1.7 Steps Back

It's funny how medicine can dole out hope and dread in equal alternating amounts on an almost weekly basis. There's almost no way to maintain a level head. When a diagnosis is not positive, I anxiously await that next visit that can provide some amount of hope, but I mostly just fear that things will worsen. And after a bit of good news, when I'm hopeful, I fear that next test that could snatch away my brief respite of happiness. It's enough to turn my remaining brown hairs white.

Last week we had good news: the lesion had not grown and Mr. A's CVR was at a nice, low-risk 1.3. If the cysts stayed the same size at today's ultrasound, we'd be somewhat in the clear and could resume a normal monitoring of the pregnancy. Sigh. Well, as you may have guessed, this is not the case.

The mass is indeed larger this week, and the CVR has grown to an eyebrow-raising 1.7 to 1.9. This places our little guy above that risk threshold for the time being (1.6 being the number that they start to worry about hydrops or heart failure or other delightful mysteries of the womb.) Things are OK though: right now there is no sign of any heart failure or hydrops and both bros seem happy and otherwise healthy.

So this means we will continue our weekly pleasantries at CHOP. As I've said, the course these CCAMS usually take is that they start to stabilize and stop growing around week 28. So we just have to wait and hope that we can make it to that point and beyond without complications. That is four weeks from now, and it seems like goddamn forever. And there's nothing to do about it other than convince ourselves that it all will be OK in the end. And watch my hairs turn gray.

A small, tentative sigh of relief...

Today was the first time I didn't accompany Kris to our ultrasound because I was scheduled on a session. It was hard waiting here at work for the phone to ring with our latest exciting Thursday update, but I have to admit I didn't miss being in the darkened sonography room staring at that screen filled with fluid squiggles. Each ultrasound we've taken so far has produced a startling or concerning revelation; the mere sight of that black and white screen evokes a Pavlovian sense of panic in me.

But Kris just called to tell me that today's session has actually revealed our first bit of good news in many weeks. The mass in Mr A's chest is the same size as it was last week, while Mr. A himself has grown! If you remember, this stage of gestation is when the cursed CCAM tends to grow exponentially, plateauing (in general) around week 28. The doctors say that if the mass is the same size three weeks in a row, they consider it to have stabilized. We are at week 23!

This means that our baby's all important CVR (the ratio of the size of the mass to his cranium) is still below that risk threshold of 1.6, and dropping. There is still no sign of hydrops or heart failure, and if in fact the mass stays the same size, that risk will continue to decrease.

What this means is that if the mass is the same size next week, they will consider the mass to have stabilized and we can resume a normal course of monitoring for this pregnancy. No more weekly trips to CHOP, just normal visits to Kris' OB/GYN. We can most likely deliver at our hospital instead of CHOP. Mr. A will definitely require surgery to resect the lobe with the mass in it after he is born, but if this holds steady, they'll do it when he is about a month old and he'll only be in the hospital for about three days. Effing medicine!

We're not out of this yet, friends, but this day just got a whole lot sunnier for the Kennedys. I can say that I believe with all my heart that all your love, thoughts, prayers, vibes (whatever you want to call it) have played a major part in getting Mr. A, Kris and I through this. I want to hug all of you and buy you a tasty soda.

The Next 6 Thursdays

Quick update. We will be following this up every Thursday with a quick ultrasound to measure the growth of the mass in Mr. A's chest. As you may expect, I now dread Thursdays. Today's weather was beautiful, and it precedes a four-day weekend, but I'm still a nervous wreck.

Well, the mass has grown a bit, but they say they expected that. Its "volume ratio" has increased as well, but it still sits below the number that would cause concern. We are now locked in a race not so much against time as a race with time. These lesions tend to stabilize and stop growing around week 28, so growth is ok just as long as it isn't too much growth. In that case we'll need to take other steps to manage the mass.

Well, I'm going to go sit in the backyard and drink an Anchor Steam and try to shake off the anxiety of another Thursday. See you all tomorrow night you know where.

Not out of the woods, just slightly less scary woods

Everybody's good vibes via text and Facebook and other magical internets were felt, heard, and appreciated today. They certainly helped my anxiety from completely overtaking my brains and making me run through a wall. Poor Kris: a one hour MRI and two 2-hour ultrasounds. Whoa. Here's what's up.

Basically, the way we are approaching this isn't much different from before. We just just have a better idea of exactly what is going on. The CCAM (see earlier post) is a hybrid lesion, meaning it is made up of a mass that has its own blood supply and other, smaller cystic lesions. This doesn't really impact the management of it. Yet.

Right now, the mass is large, but not large enough to cause immediate concern (i.e., heart failure). He will be measured every week; they say the mass should plateau and stabilize around 28-30 weeks. Then it should stay the same size as the baby grows and will be dealt with after he's born. They assure us the "vast majority" of cases behave this way and are successfully treated after birth.

(Side note: when I was a medical copy-editor, the phrase "vast majority" used to drive me nuts because it's either a majority or it's not, amiright. The "Vast" in "Vast Majority" used to get a violent slash from the red pen. I hereby retire my grudge against "vast majority" because I'm liking the odds on "vast" right about now.)

Of course, the lesion could not behave like the vast majority and cause some problems down the road. Additoinally, the fact that we have identicals with one placenta could cause problems. But right now, tonight, we can relax a little bit.

Also, CHOP is sick. I have complete confidence in these doctors, nurses, technicians, and technology. Although we have carved out the tiniest sliver of odds by pulling down monochorionic identical twin boys with one presenting hybrid congenital cystic adenomatoid malformation/bronchopulmonary sequestration...at least we live in the right town for it.

Tonight, I dream in ultrasound.

Thanks for your love and good thoughts. Check these dudes out.

Approaching Tomorrow

I'm not expecting to get a lot of sleep tonight, as tomorrow is the day we take this whole show on over to Children's Hospital for an extended day of tests and waiting. Throughout the course of this pregnancy, we've yet to have an ultrasound that didn't reveal a startling surprise ("you're having twins but they're fraternal and each has their own placenta. Congrats!"; "You're having twins but they're identical and they share a placenta! Good luck!"; "We're concerned about Baby A...he has CCAM. Um. Sorry.")

So you'll forgive me for approaching tomorrow with a touch of trepidation. We'll be enjoying an MRI, a fetal EKG, genetic counseling, in-depth ultrasounds, and finally a diagnosis and consultation with our new team of specialists. I'm taking comfort in the fact that we'll be in the best possible hands for our situation. Of course, I am hoping for some kind of good news; if not "we think it's going to clear up on its own" then at least "we are confident that this can be treated and the baby will be fine."

Tonight I'll just try to have a clear head and not twist my mind into a spiral of worry. Like the man said: tomorrow never knows.

Refocus

It's strange how quickly the focus of your life can change. Prior to last week's news, my main concern was worrying about how I was going to pull off being a parent. Oh my god, will I be a good dad? Everything's going to change! I suppose, in retrospect, I was really just being selfish. What I really was worrying about was whether I would be willing to do what was necessary to be a good parent. Wondering if I would be sad, confused, possibly even resentful about the changes to the structure of my life that would need to be made. And I realize now how self-centered my thinking was, because today, on this Monday after a beautiful and anxious weekend, all I want in the whole world is for these two mystery men growing in my wife's belly to be born healthy and safe. If our hopes are realized and that happens, I know now that there is no change or sacrifice I wouldn't make to my life for these guys. So, if there is one bright kernel of positivity than can be extracted from this whole situation, it is this: I now realize just how very much I want to be a father, and I know that I will be a good one. Now let's do this.

The way Kris and I relate to our pregnancy in the context of this new medical diagnosis has completely changed. What was once giddy and exciting is now tinged with anxiety and fear. Things we were looking forward to are now dauntingly scary to us, such as the idea of preparing the nursery. What should be a loving and hopeful act now comes loaded with the specter of heartbreak and instead of just being able to enjoy creating this room for our children, we must consider the possibility that there will be no one to inhabit it. It's a crushing thing, and I know we just have to put it out of our heads. Flip side: imagine the joy we will feel if we are able to bring home two healthy, happy whippersnappers. Egads, it's enough to make me wish I believed in something to pray to.

I hate it when a doctor says the word "concerned"

Well, first the good news: two identical twin boys! Inasmuch as two identical Kennedy boys are good news to anyone. If what they say is true, and babies behave the way they do in the womb, then we have two future terrors on our hands. In the ultrasound they were literally boxing each other. Well, kicking and jabbing at least.

Here is the hard news. One of the babies (we affectionately call him "Baby A") was diagnosed with what they call Congenital Cystic Adenomatoid Malformation (CCAM). Basically, there are lesions or cyst-like growths in the lower lobe of one of his lungs. No one knows the cause, but it is very rare (we are really hitting all the long odds with this pregnancy: .4% chance of identical twin boys, 1 in 35,000 chance of CCAM. Powerball, here we come).

What this means is that he and mom will have to be very closely monitored. There are several different treatment options depending on the type of growth he has. They say most babies are able to be delivered normally. After about a month they will go back into the hospital and have the lesion surgically removed. Because babies are made of magic, the lobe they remove will grow back and baby has to potential to be the next Michael Phelps or Placido Domingo because that lung will be good as new. Don't quote me on that though, I'm not a doctor just an optimist.

The problem arises when the lesion grows too big or fills with too much fluid. This takes up space where the normal lung or heart should be. This is no good. It could result in all kinds of problems for mom, and could lead to heart failure in the baby. They have several unbelievable options for treating this outcome: surgery on the fetus to remove the lesion before birth, shunting the lesion to drain it, or using a needle to drain it. Is this the future?

Of course, because his brother and boxing partner is also in there with him, this all becomes much more high risk for the four of us. Luckily for us however: even though this condition is very rare, there is a center dedicated to its treatment, and it is here in Philly at CHOP. So if anyone ever hears me complaining about living in Philly again, give me a slap. These guys are the best in the world. We go for a full day of tests on Thursday, and should have a clearer idea about what our course of treatment will be.

I want to thank everyone for all the good vibes and kind words. This is going to be a scary couple of months for us, so bear with us. Your love and kindness will get us through. Special thanks to CL, an old friend and pediatrician who buried a very old hatchet I bestowed on her a decade and a half ago and took a late night call from me to calmly explain all of this and talk me off the ledge.

I'm still going to plug the Audible show on the 22nd! BE THERE.