Reherniation

On Thursday, I realized that Samuel was not eating well at all. He was eating 30 ml at a time when he would normally eat more like 120 ml at a time. He seemed fussy, wanting to be held all the time rather than his usual desire for playtime. By Friday afternoon, all of this was magnified - less eating, less playing, more cuddling, more fussing.

I told myself he'd gotten his brothers' cold - which was true - and that this was the way his little self was processing it. But I worried that he wasn't eating or pooping and that he seemed more and more irritable and inconsolable. Chris and I were taking turns cuddling and walking with him but nothing was working. At 2 a.m., I put in an NG tube in the desperate hopes that we would be able to settle him with a little more food in his stomach. We had been done with tube feeds six weeks before but I always knew that we might use the NG again if he was sick and not strong enough to take enough fluids by mouth.

We started a slow drip of his feeds. Ten minutes later, Sam started to throw up massive quantities. Chris and I didn't even speak as we cleaned him up, changed his sleeper, and packed him up to take to Emergency at our Children's Hospital. At 3 a.m., with 20 minutes of sleep under my belt and a slow burn of worries, we were checked in and waiting for doctors. By 6 a.m., Sam had had chest and abdominal x-rays, blood, urine, and sputum cultures, and was sporting an IV in his tiny wrist. By 9 a.m., I had managed another 20 minute nap and an evaluation with the surgical resident. We were waiting for our surgeon to come in and confirm what the doctors all thought likely; Sam had reherniated his diaphragm.

Throughout this, I was pretty calm. I worked diligently to soothe my fussy little man, visited a couple of the lovely nurses back on Unit 2, and felt sure that we would head home pretty soon. It reminds me a little of the total denial I experienced when my water broke with Samuel on his birthday, how I really figured that they would just check me out and send me home.

So Samuel has bowel up in his chest. It's not a lot and the left lung is still inflated and functioning almost completely. But there it was on the x-ray and then again on the echocardiogram. No wonder he is cranky and doesn't much want to eat - I wouldn't be that happy about my guts getting all cozy with my lungs either.

That Samuel's diaphragm repair would rupture is something we expected would happen at some point. He had virtually no left diaphragm at birth. The diaphragm that was made for him cannot stretch enough to manage his fast baby growth. We had kind of hoped he would make it a bit longer before reherniating - that he would be that much bigger and stronger before tackling another big obstacle.

And so Sam will have surgery tomorrow. He will be intubated and have an epidural and pain meds to deal with again. He will have his sweet baby chest cut open again. He will be off his feeds and have to start all over with little drips to stimulate his intestines once they are all tucked back into his belly again. The surgery could take anywhere between three and eight hours. We won't know the exact condition of the diaphragm until our surgeon gets in there to do the repair.

I had some tears, some of it foot stamping petulance because I just wanted to go home, some of it panic as I jumped aboard the worry train. Reviewing with the surgeon and anesthesiologist, it's never fun to hear words like stroke and cardiac arrest and to anticipate another possible intubation and narcotics withdrawal process. As much as I love those ICU folks, I really don't love that we will get to live with them again for a few days.

But so it is. It will be okay. Samuel is one tough little man. And honestly, I'm pretty tough too. Besides, the doctors have the hardest job. Sam just has to lay there and then apply his considerable healing strength to getting back home again. And I cant do anything more than hang out and love my baby; luckily, I happen to have some talents in that arena.

Samuel is sleeping now back in a crib on Unit 2. He is surrounded by blankets and cozy sleepers and a few special items from home. The anesthesiologist is strategizing the bits and pieces of working with this baby and his unique anatomy and history. The cardiologist gave the green light that his heart is strong enough to sail through this surgery. His surgeon is - we hope - home sleeping to be bright-eyed and busy-tailed for morning. Sam's IV pole is ready to provide fluids when he comes off of his feeds at midnight. I will stay the night at his bedside and Chris will come in the morning when my parents arrive to spell off with the big boys. We will send our baby off to surgery, holding tight to the one truism we can always land in during moments like these; love is bigger than fear. Always.

I'll keep you posted. Prayers and healing thoughts sent to our baby - and his amazing caregivers - tomorrow morning would be greatly appreciated.

Sleeping peacefully in the ER while we wait for news.