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.