Sep 17

Sep 17 How old are we?

I don't know how old my children are! <-- realization I had while getting what will probably be my last haircut for... ever. Another stylist's partner showed up at the salon with her baby. Conversation with her client revealed said baby was 12 weeks old. I realized if someone asked me how old my kids were, it'd be difficult to give them an answer.

I've been counting the days. Each day is so important even though they all ultimately bleed together... we've been so necessarily in the moment we haven't really looked up. We've been in the NICU for 57 days.

I've also been counting gestational weeks since every week brings new developments and expectations that are relevant to medical decisions being made by their team. These girls are 39 weeks old on paper today (more like 37 in terms of time spent existing... If that's confusing, read my last post.)

But weeks old? It seems really stupid to say this, but I hadn't thought about it that way yet! I guess they're 8 weeks old. How cool is that!? Weird, and not all that useful yet, but cool! What's weirder is that they don't even have a meaningful adjusted age ... 8 weeks old minus 9ish weeks premature = -1 week? Seems like a suboptimal age.

I used to laugh when people gave their kids' ages in weeks (once you could reasonably measure it in bigger chunks.) Turns out the joke's on me... when do I start counting in regular weeks without qualifying the answer? More importantly, when they turn 21, do I make them wait 9 more weeks before celebrating with them?

8 weeks, 57 days, 39 weeks, 37weeks... In weird preemie/NICU land, those are all the same. The math feels like it doesn't exactly add up in the outside world, but those numbers will keep rolling over in my head until only one matters.

GIRLS UPDATE

Reflux and anemia continue to be real bitches. We're working through management options while keeping fingers crossed that more time will magically fix the issues. In spite of these major challenges (eating, breathing, and staying oxygenated continue to be kind of big deals), both girls are still doing well!

Eating & Reflux

They're making progress eating more (and more often) by bottle and have transitioned to breastmilk only followed by a high calorie formula chaser (not the official term but I'm sticking with it), rather than constantly being shoved full of fortified breastmilk via a tube in their face. Sia is leading the charge, and Farrah seems like she's getting ready to follow her sister's example after a couple pretty down days (the preemie NICU roller coaster ride continues.) I'm hoping the diet change will be nicer on their systems and have a positive impact on reflux.

Anemia

Both are still very pale, anemic babies. Follow up blood tests show that Farrah's body seems like it's doing a better job making red blood cells despite her being overall a little more anemic, while Sia is still riding the transfusion high and is reading as less anemic... but also not yet making her own cells. None of this is surprising, though it is disappointing. They'll check levels two weeks from now and reevaluate. If Farrah's levels have continued to drop and Sia's system hasn't come online by then, there may be more transfusions to consider.

Events

Both girls are now generally having less than 10 "events" per 12-hour nursing shift (this is HUGE progress!) and most are associated with reflux and are almost always self-resolving. All of this is great.

Coming home

This week was the first time the word "discharge" was used in a realistically immediate sense (weeks) vs. referring to some far-off imaginary and not yet worth talking about day in the future. It feels good to be anxious about the girls coming home in a few weeks rather than being so fearful about the next five minutes you can't see past that day. I realize that sounds weird but being able to think about the future instead of only what's right in front of you is progress.

The most immediate "going home" anxiety is that it looks very likely that Sia will be ready to come home much sooner than Farrah. While I'm so thankful she's doing so well and I'm SO EXCITED to snuggle a tube, wire, sensor, tape, baby lo-jack free baby, I'm nervous about the babies being separated. Once one leaves the NICU, they can't come back in. It's not that I want to bring a baby anywhere near a hospital, but coordinating everything is feeling overwhelming (care for Sia, visits to Farrah, pumping, breastfeeding practice, actual bottle feeding with both girls (and when do I do which of those?), doing life stuff...) It'll all work out and we have amazing support, but it's just daunting. Not enough hours in the day or arms on my body, and I have yet to master teleporting and/or being two places at once. Pretty sure I just described parenting multiple children… The crash course begins 😬