Aug 28

Aug 28 TL;DR

TL;DR - Girls are doing better, I have some bad feelings, I have some good feelings, thank you all, look at my adorable babies.

Read on...

I've started and restarted this post at least ten times. Not sure what I want to say or how I want to say it. Sorry in advance for the verbal diarrhea. The past couple weeks have been a roller coaster… less "so fun let's do it again!", more "get me the fuck off this thing.” Most of the bumps the girls have come across are common for preemie babies, but that doesn’t make it any easier to watch them work through.

They are not Iron Man

Both girls are severely anemic – they came too early to have developed the 6ish-month stores of iron full-term babies have, and their bone marrow doesn’t really know what it’s doing yet. They’re receiving iron as part of their care, and the hope is that they’ll be able to start making their own red blood cells effectively asap. If they don’t, then blood transfusions might have to be considered. The problem with transfusion is that it tricks your body into thinking it’s already doing its job… so then it doesn’t do its job. During rounds and doctor updates, no one has brought up transfusions in a week or so, so I’m (maybe stupidly?) optimistic we won’t have to go there!

Hospitals are disgusting

Sia finished up a course of antibiotics for a “maybe” blood infection… When the girls started going downhill a couple weeks ago, a number of labs were done to try to figure out why. Sia’s bloodwork came back as possibly positive for a bacterial infection, though it was also possibly a contaminated sample. Follow-up labs were inconclusive, but they kept her on antibiotics just in case. I’m not convinced there was an infection to begin with, and if I never have to visit my children while they’re on contact precautions (gowns, gloves, mask) again, it’ll be too soon. Fuck that.

Keep it down

Reflux. Most babies have it. Almost all preemies have it. The girls have it… bad. The problem is when their food comes back up, they stop breathing in order to get it back down. It turns out keeping food down is important… but so is breathing! We’re not looking at medication yet (and medication won’t stop the reflux anyway, it’ll just make it less painful), but if we aren’t talking about it when we’re closer to going home, I’d be surprised. I just want the girls to eat… and to breathe… seems like a couple simultaneously very small and very big asks.

Coffee break

Caffeine is a magical thing. I know very few adult people who don't have a favorite coffee or tea ritual for their daily dose. Turns out it's also a great respiratory stimulant for premature babies! The girls had been on caffeine since day one, until they hit 34 weeks. Per standard, evidence-based protocol, caffeine was discontinued at that point as most 34 weekers can do without it… their brains are ready to independently regulate those vital body functions…

… but the girls weren't ready, and we weren't ready to watch them not be ready. Babies are supposed to be a certain color. They're not supposed to turn red, or blue, and certainly not a terrible purple/grey... over, and over, and over...

The thing is, I don't think our kids are as old as they are on paper. They were technically born at 31 weeks and 1 day based on the "first day of last period" metric. But if you know with more than just a little confidence when you got pregnant, and your kids are born prematurely and every day in the count makes a difference, I don't know how much value that metric holds... it may even be harmful. I think the girls are about two weeks “younger” than they are on paper, so it makes sense they weren't ready to live without the additional caffeine support. I don’t know… I’m not a doctor… but I do know that once they started receiving caffeine again, everything started improving. I’m so, so thankful. I’m also so, so on edge since, as of yesterday, they’ve discontinued caffeine again. It’ll take a few days to see if they’re ready this time. I’ll just be here, quietly freaking the fuck out, until they let us know one way or the other… *insert vomit here*

Bad feelings

Better out than in, right? Let me preface this emotional dump with this – I’m usually feeling much better about most of this. Usually. That said, I’ve been feeling like an artificial mom. Every step of the way so far on this journey I’ve been distanced from my children... a C-section birth actually cut them away from me, I didn’t get to see the girls at birth (almost as if they'd never existed, is what it felt like at the time), they were taken to the NICU right away, covered in tubes, wires, masks, and put in boxes. I’ve never felt further away from something… not just physically, but emotionally (at first). That sense of overwhelming “love” (what an inadequate word) didn’t come until a few days later, when I finally got to hold a very fragile Sia for the first time (skin to skin is better than any therapy in the world.) Not being able to be physically near your children, especially when all you can do is stand there and watch them struggle or suffer is so damaging. Knowing that holding them is sometimes the worst thing you can do is awful. Isn’t part of being a parent being able to support your kids? It’s just been so hard to know that sometimes the most supportive thing we can do is to leave them alone. I guess that’s a life lesson in some ways, but it’s a hard one, and it doesn’t exactly foster the “Yeah! I’m doing this parenting thing!” feeling… because you’re not. What the kids need right now is not a parent, but a nurse or doctor. We are not that. That’s hard.

Pumping for milk rather than being able to breastfeed makes me feel like a cow, not a mother ... the only “enjoyable” thing about pumping is knowing I'm doing the only thing I can to help. Everything else is awful. The worst part about it right now, for me, is that it just highlights that the babies aren’t here. Them not being here, stress, anxiety, and all the other negative emotions are terrible for building milk supply… and then there’s the added stress of not being able to supply enough milk for two babies. The downward spiral is real… feeling like I “failed” at keeping them in long enough, I “failed” at birthing them “naturally” (but let’s not go there yet), and now feeling like I’m “failing” at even the most basic function of feeding them… it’s not a comfortable space. I’m working on it. On the plus side, if you’re in the market for a pumping/nursing bra, I’ve tried every one of them. Ask me! I have opinions and experience! I’m useful! Silver lining?

I guess what I’m saying is I’m feeling like I’m a mom in label and on paper only. I don’t know what mothering means, physically. I’ve been denied those experiences at every turn. Once we’re through this initial storm I hope I’ll look back at this and laugh at how I didn’t take advantage of all the “free time” and “free babysitters” I had (Ha! Hospital bills. What’re those?), but… so many feelings. Also feeling thankful I started going to therapy before the girls got here…

Public service announcement

Certain episodes of the final season of OITNB probably should not be watched by preemie NICU parents. Pass it on. Great season, though…

And, finally…

Good feelings & good things!!!

There is SO MUCH to feel good about – it’s easy to forget that. I’m so thankful for all the support we have. Yes, I do mean doctors, nurses, and modern medicine. But, beyond that, I mean YOU. If you’re reading this, you’re likely a family member or friend and you are so appreciated. If you’ve reached out and been greeted with radio silence, extreme brevity, or a cryfest… I’m sorry! But also thank you. Knowing you’re there means the world.

Berto, you’re wonderful. You’re a rock, even if you’re sometimes a crying rock. I’m sorry I’m terrible at communicating (even when I think I’m doing a good job!) – I’m working on it and your patience and persistence mean the world. You’re an incredible father and partner. I love you.

The girls! THEY ARE DOING SO WELL!!! Bet you didn’t expect that after this little book of a post! But they are. They’re both over 4lbs and finally look like little babies instead of little old ladies. Dare I say they’re starting to get pudgy??! Both of them are working on bottle and breast feeding and both are making great progress! It seems like they’re on their best feeding behavior when Berto and I aren’t there, so the nurses are having most of the feeding fun, but that’s ok! Babies, I forgive you. You’re so fucking cute.

So, thems the updates. The good, the bad, and the getting better. Long story short, we are so lucky. Now look at these funny-looking (ADORABLE) babies.