Not home yet
I've been reluctant to write about the NICU countdown before now. It's hard enough managing our own expectations, preparing to bring Liam home without getting our hopes up about bringing him home on a specific day - I haven't wanted to manage every else's expectations too or get into all the 'he might be coming home on x day - no, he's not going to be coming home after all' conversations. But now that we're starting our fourth real countdown, or in other words, now that we've failed three countdowns, I'm just as tired of giving vague answer when asked if we know when Liam is coming home. So here's how it works:
Babies born early have to be able to maintain their own body temperature, breathe and eat on their own in order to go home. Sounds easy enough. But breathing well means never forgetting to breathe, even when you're sleeping, and eating well means not only taking milk in and digesting it, but doing all that without dropping your heart rate or oxygen level, or forgetting to breathe. That's the hard part for preemies. Some kids get hung up on eating and some get hung up on remembering to breathe. Either way, in the NICU when the heart rate drops and oxygen level goes down, we call it a "spell."
Spells are really common and expected in preemies. As they get older and more mature, the spells become less frequent. The real test to go home is to be in a crib, eating on your own and go five days without having a spell. Those five days are the countdown. If you have a spell while eating, it's blamed on poor eating coordination (suck, swallow and BREATHE) and you earn yourself a three day countdown. If you have a spell at rest, five days.
Spelling at rest is what our little Liam has been up to. On day four or five of his countdown. And so then we start back at zero.
When he first showed signes of being ready to give up the feeding tube, Liam's primary nurse lined up his HepB vaccine and circumcision and made plans for him to get all of his feedings by mouth unless he showed that he really couldn't handle it. And we vaguely talked about a countdown. Because at that point Liam hadn't had a spell for nine days. But he also hadn't yet proven he could eat on his own. HepB and circ happened the next day, he took all his feeds by mouth, and not surprisingly, he had a spell that night. It had been a long, hard day - you'd forget to breathe too! I don't count that spell as a failed countdown - we were barely talking about a countdown.
But the next day the feeding tube came out, the day after we had proof that Liam could eat on his own and continue to gain weight, so the countdown was officially on. And it was scheduled to end on Wednesday in the middle of the week that Tim was working on the Cape. But as we counted down, I didn't feel like Liam was ready. He hadn't had a spell, but when he was breastfeeding his heart rate would drift down considerably - he was threatening to spell. And then on day four, he finally did have a spell in the early early morning. I was a bit relieved to not be bringing him home before he had his eating skills all sorted out. Fail One.
And so a new count down began. This time shooting for Sunday. And it was a week when we mostly had our favorite nurse Brenda, Liam's primary nurse who knows him so well, and she and I were both impressed with the feeding progress he was making, not needing me to pace him, doing a good job taking the breaks he still needs. We made it through day four. I called the NICU at 5:30am after pumping and was told we were good to go. And then he spelled again. On day five. Fail Two. And it was devastating.
So we started another countdown. With the aim to be home today, Friday. And we worked hard not to get our hopes up. I tried not to feel like we were jinxing things when we said bye to Brenda on Monday afternoon as she prepared for the rest of the week off. We had nurses we'd never had before, which made the whole maybe going home thing a bit harder since them getting to know Liam meant talking about maybe going home, which I was reluctant to do.
I talked with Liam's nurse at 6am yesterday morning and learned he'd had a good night. And then when I called to check in at 8am, I learned he'd had a maybe spell. His heart rate had dropped, but oxygen had only drifted, so maybe it wouldn't count and we'd have to wait until his full team had their morning conversation to know for sure. But I wasn't hopeful. And when I got to the hospital at 11am I learned we were once again on day zero. Fail Three. We begin again.
Liam is not yet 40 weeks old, so this is all still expected of him. It's just so frustrating because he goes four or five days between spells - just long enough to almost get home. But we want him to be safe to come home. All the information around preventing SIDS is about how not to abuse your child and how to help prevent apneic episodes - these instances where heart rate and oxygen drop - and even though Liam always self resolves when these spells happen, it's not a risk we want to take. If we aren't home on Tuesday, our new goal, I will talk with Liam's team about acid reflux, since reflux cause Nathan to spell even after he had all his developmental ducks in a row.
I have also decided that I need to change my expectations. When Liam was born so much older and bigger than Nathan (relatively speaking) and didn't have the complications Nathan had, I was certain he'd be home by his due date, and kinda assumed he'd be home a little earlier. But when we were hoping and praying for a full term baby, I was prepared to be pregnant for 42 weeks if that was what it was going to take to bring a full term baby home, so I guess I just need to be prepared to wait to 42 weeks if that's what it's going to take to bring a healthy, mature baby home.
SO that's where we are - Day 1 of 5. Not home yet.