Diary of a NICU Dad - Day 128
I have not done of these in awhile! Looking back at these posts feels so far away, yet so close. At the time of this post Addie just had her Ladd's procedure to correct her malrotation and volvulus. We had hoped the surgery would have fixed most of her problems. But shortly after the surgery we realized that would not be the case. At that time they had already mentioned motility specialists at CHOP, or even Cincinnati. If you are new here, while we were in the hospital John would post updates about our journey on our private Facebook page. Every few weeks, I will be sharing excerpts from his diary... Diary of a NICU Dad.
It's hard to believe that we're wrapping up day 19 of this hospital stay. 3 weeks on Sunday. 128 days in the hospital since September 16th. And yesterday, Addie turned 6 months old. Out of the ~180 days she's been alive, most of it has been spent in the confines of a medical institution. Crazy when you think about it long enough. Last night, before bed, Steph and I flipped through, backwards, all of the photos we've posted to her Facebook page and to see how far she's come is really incredible. From the tiny, 1.5 lb, red-skinned human struggling to breathe in the isolette, to the 8 lb, fair-skinned, smiling little peanut. The transformation is something that you start forget. Our focus is always on the now because that's where we have to be. We have to live in the moment. We have to fight with the doctors for what we know is right. We have to give this little one constant attention. We have to be by her side without ceasing. We cry, we worry, we set our timers for the next regimen of meds. We wait for the next diagnosis, the next procedure, the next treatment. And that means that while we see her grow, we rarely have an opportunity to sit back and watch it. Taking a trip backwards, from her most recent, wide-eyed, smiling pictures, we were kind of floored. Its cliché, but we sometimes miss the forest through the trees. It's hard to see the bigger picture when your face is pressed against the glass in the frame.
But on her half birthday, as she passes 6 months of life, we're exceedingly proud of what she has done. She's impressed us with her strength, and her fight, and her spirit. Without that smile. Without those bright, blue eyes. Without that Stevie Wonder, bobble-head popping up over our shoulder, we wouldn't be able to do all of this. We always tell her, she's lucky she's so cute. And she's lucky she's so smiley. I can't imagine going through this with a baby who didn't have everything that is good in the world pouring out of her eyes. She makes it worth it. She makes it easier to press on for another day. We catch ourselves just staring at her while she lies in her crib, watching her fishy friends and her mobile. Saying, she's so cute. When I get to the hospital after work and she stares at me and instantly smiles, it makes it all ok in that moment. At some point, I think we'll be able to just enjoy these moments and not worry about what's next. But until then, they're what keep us going. That. And caffeine. And booze. Those help. Immensely. But take those away and leave us with just those eyes, and it's still manageable.
Over the last 24 hours, we've seen improvements. She slept through most of the night last night, save for the explosive poop that went through her sleeper and her two swaddles; she slept comfortably. Today, she had less reflux and was happier. She even took a tiny bit of formula from the bottle. But we're still on continuous NG feeds. A tiny bit of formula over a very long period of time. Not enough to really show us what she's going to do with "normal" feedings. Over the weekend, they'll compress her feeds. They'll try to see what she can handle in bursts.
We're in this weird place where no one can tell us whether what she's experiencing is a result of the trauma of surgery, the lingering effects of her malrotation, or something different altogether. I've used the term purgatory before and I really can't think of a better way to describe it. It's like the waiting room in Beetlejuice. Sitting next to the guy with the shrunken head, waiting for them to service 9,998,383,750,000 and realizing they just called 3. They're starting to throw around the G-tube and the Nissen again. They're telling us that if things don't start to move, we may need to see a specialist in Cincinnati or at CHOP. We are all hopeful that the malrotation was the problem, but now no one is sure.
But for now, we're finally on a short-term feeding plan we agree with, after much weeping and gnashing of teeth. We fought with doctors and nurses. Dealt with inconsistencies in treatment plans. Horrible communication. Disagreements between specialties. Questioning of our observation and parental instincts. All of this to get on this slower plan. If you want an earful, ask Steph her thoughts on the communication skills of Hopkins GPS. That's about as much as I'll say on that topic.
We're worried about what will happen. We've seen what she did right out of the gate after surgery and it wasn't pretty. She's on full strength meds again - Prevacid, Miralax, Simethicone, and some other med that neither of us can remember that helps coat her esophagus and stomach walls. She's developed an aversion to the bottle that Steph has been diligently trying to overcome. Working with OT and only with a pacifier and sweeties (sugar water), she's trying to change Addie's mind about what it means to take a bottle. She's become very aware that over the last 2 months, that bottle feeding means reflux and vomiting and choking and arching and an overall really crappy feeling. And we have to change that. Or we'll likely be transferred to another inpatient facility in Mt. Washington. There, they have a feeding clinic. That specializes in these types of issues. Behavioral aversions to eating and other such issues. Our surgeon wants to progress slowly, but needs to see forward movement and improvement over the weekend, or we're being transferred. The referral is already in progress, and they're preparing to have us sent there. But we're hopeful that Addie will surprise us. Just like the day she was born and didn't need the vent. Just like the day she decided she'd had enough of respiratory support and it was time to take the tubes out. Just like the first time she smiled, before the NICU nurses thought it was possible for a baby to smile. Just like she does everyday.
But we're realistic. We may not be done with our hospital stays. And it may not be time for this to be over yet. But her smile. Her eyes. Her spirit. It all makes it that much easier. And someday, we'll be flipping backwards through her Facebook pictures and we'll realize just how far she's come.