It has been a whirlwind couple of days. I will update on each gaggle member separately

Margo

Margo Millie, the “go big or go home” girl, is home!!! Baby A, who came out first kicking and screaming—so hard that she gave herself a pneumothorax—is also the first one home at 55 days old (due date is tomorrow). She was born at 3lb 13oz and is now 7lb 7oz.

It is amazing to think about how far she has come in 8 weeks.

When I last posted, she was getting close to the 80% by mouth feeding threshold required to get her feeding tube out. She met that milestone on Sunday, so they took her feeding tube out then. Once the feeding tubes are removed, the babies here transition to eating ad lib, so they get fed whenever they want to eat, rather than sticking to the 3 hour feeding schedule. Since Margo had an event on Friday, we had a 5 day countdown to Wednesday for discharge. Meanwhile, they look for at least 48 hours of consistent feeding and weight gain while off the feeding tube. Margo hit her 48 hours of good feeding on Tuesday.

On Tuesday morning she also did her first attempt at the car seat test. She almost passed the first time, but she had a desat event while pooping in the car seat, so she barely failed. They repeated the test Tuesday night, and she passed. All systems go for Wednesday discharge!

These last few days have been so nerve-wracking, waiting to see if Margo kept eating and waiting to see if she had another event. I kept reminding myself not to fully believe the discharge until she got unhooked from the monitors. Around noon on Oct 30th, we finished her last feeding, signed the discharge papers, and officially unhooked her!

Annalee

While Margo has been transitioning to discharge, Annalee has been struggling with her feeding. She was showing signs of disengagement during feeding, as well as continued stridor. She stopped progressing on her feeding. As I mentioned before, they first tried to reduce her feedings to 4x a day rather than 8 to give her more rest. They also tried decreasing her calories because she’s been gaining so much weight (as of yesterday, she was 8lb4oz!). Neither of those helped very much. On Monday, Annalee had a particularly bad feeding in front of the speech pathologist (those are the people in the NICU who work on feeding), so they tried giving her a 24 hour break from feeding to see is a reset would help. That didn’t help either.

Then they tried feeding her with this fancy binky trainer contraption. She has a very strong suck, and she did better when the flow was heavily moderated. But that’s not sustainable to drink from a binky, so it was time for us to take the next step to figure out what was going on: a swallow study

In a swallow study, the baby drinks apple flavored barium while they take video x-rays so they can see where the liquid is going when the baby swallows. They look for things like delayed swallow where the swallow happens in two steps; a thing called penetration where milk starts to go towards the lungs; and aspiration, where milk goes into the airway. Then they try different variations of nipples, milk temperature, and thickness to see if anything helps.

This meant that Annalee got to go on a field trip down to radiology. She loved the apple flavored barium, and she did a great job during the study! It was cool to watch her swallowing on X-ray video. It turns out that she did better with cold liquid and a faster flow nipple, but even with that, she had some issues as she got more fatigued.

This gave us a good plan moving forward. She’s now on cold milk with a faster flow nipple, and a feeding limit of 25ml (full feed is around 60ml). We will see how that goes over the next few days. So far, she’s taken most of her 25ml feeds, so it seems to be working. The team is still deciding how to progress her from here. They will need to start increasing the volume that she’s allowed to take by mouth, but it’s unclear how fast she will be able to do that. If she’s on the slow side, it may mean her coming home on a feeding tube. If they go that route, she would start taking steps towards discharge like making her bed flat sooner than later. She is still having events around feedings so it would be probably at least a week before she could come home anyway.

I am simultaneously excited for Margo and worried for Annalee. I guess I should get used to this feeling.

It also dawned on me that the girls will outgrow their newborn clothes soon, so I did a little NICU photo shoot with these Polish outfits that my friend Ewelina got us.

Me

It’s been so nerve-wracking while waiting to see if Margo made it to discharge. I’m so used to setbacks by now that I just expect them. Monday was a good distraction because I went to work for the afternoon to make a guest appearance at our product management summit that is happening this week. I hadn’t been at work since July 11, the week before I went inpatient. I remember leaving work that day feeling so many emotions, wondering what life would be like when I finally came back. I definitely cried on my way home. At that point, we had so much uncertainty ahead of us, wondering how far we would make it or if we would even make it.

This week, it was such a relief to go back to work on the other side of this journey. Sure, we still have a little ways to go for Annalee, but if we consider all the awful things that could have happened, it’s nice to recognize that we made it through this journey relatively unscathed. I am so grateful for that, and I hadn’t realized how much stress I was carrying until I went back to work without it. We made it! We are gritty warriors after all. This journey also helps put little work problems into perspective, and it’s a good lesson in managing uncertainty and building patience. I am excited to see how that benefits me at work and in other areas of life. I sure got my dose of grit this year.

Initially, I wasn’t excited about bringing the girls home separately, but now I am excited to at least have Margo, and at least our days will be different—not the same kind of tedious boring that they were in recent weeks. We will still visit Annalee every day, and they are keeping a bassinet for Margo when she visits.

Also, I feel like my grammar is getting rusty. Please forgive me!