4th of July – Keeping up with the Hoffmans

Today was a good day. D spent the night at the hospital last night and said Emmett had one of the best nights to date. This morning we took Theo to a 4th of July parade, and then I went back to the hospital so I could hold E this afternoon. When I got there, not only was E swaddled in his isolette, but he was wearing clothes! His temperature on his isolette was turned down to 26C, and the nurse gave me the great news that he would be moving to a crib tomorrow! They will also be turning his oxygen down to 1 liter, which is officially low-flow. Lots of great progress.

I didn’t get a lot of time with E today. Just the three hours I held him, and then I left the hospital to meet D and T at our friends’ house for more Fourth festivities. As hard as it was to have so little time with E today, I know he doesn’t consciously miss me while I’m gone, where T definitely does, so it was important to spend this holiday with him. It was good to see friends and we lit off a few fireworks after dark and kept T up WAY past his bedtime. So worth it to see the sheer elation on his face over the fireworks. D went back to the hospital for the night again and I came home with T to tuck him into bed. And then I started a load of laundry, including preemie clothes (!!) since we can start dressing him once he’s in the crib. The hospital will provide us with clothes if we want, but I figure we might as well use some of the preemie clothes we got as gifts since he probably won’t fit in them for long. He gained another 36 grams tonight, bringing him to 3 lbs 15 oz. There’s a very good chance we’ll crack 4 lbs tomorrow!

One year ago, we got the news 13 weeks into our pregnancy that our baby no longer had a heartbeat. And while I’m grateful for how well E is doing, I can’t help but feel sad about the rough journey we’ve had to this point, and still have ahead of us. Four pregnancies: two miscarriages; one perfect, textbook pregnancy; one premature birth. My OB doesn’t think my preterm labor had anything to do with our losses, but she doesn’t know what caused it either, and we’ll probably never know. She did say if we were to get pregnant again I’d have to be on progesterone injections throughout the pregnancy — possibly in addition to the drug cocktail I was on this time around just to keep from miscarrying. Even then, there are no guarantees. Yeah, no thanks. My body hates babies. We’re done.

Interestingly, we have plans for the Fourth tomorrow with the same group of friends, at the same house we were at this time last year, after just learning we had lost our baby. I was still carrying my baby because I couldn’t get in for a D&C until the following week because of the holiday weekend. I was still wearing maternity pants, with a flowy top to hide a small baby bump. Many people at the party didn’t know we had even been pregnant, and I didn’t feel like talking about it. They had no idea the multiple glasses of wine I drank that night were the first I’d had in three months and that I so desperately wanted to escape the nightmare I was living yet again. Now here we are, one year later, living a different nightmare. It’s more bearable this time because our baby is alive. But it’s a lot more draining because it’s so drawn out and there are still so many unknowns.

But I should try to focus on the positives. Emmett is really doing very well, all things considered. The CLD is still haunting me because we don’t know how severely he’ll be impacted, but for the time being, he’s making forward progress. He’s continuing to gain weight. He’s still having occasional events but they aren’t too frequent or severe. He handled the drop to 2 liters of oxygen like a champ, and they’re talking about possibly dropping him to 1 tomorrow. He put on 28 grams today, bringing him to 3 lbs 14 oz.

His heart rate has been jumping up frequently these last couple days, but that seems to only happen when he’s agitated. The higher heart rate episodes seem to have coincided with when they started swaddling him – perhaps he just prefers having his arms free. And he has shown us that despite his lung issues, he can let out an impressive cry when he wants us to know he’s unhappy!

Tag: 4th of July

NICU day 47

NICU day 46