NICU day 46

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!

IMG_1713

NICU day 45

We had another good day. Relatively uneventful in itself, though we are on the cusp of some pretty big milestones and I had some good conversations with the nurse about our plan of attack.

As far as today goes, the biggest news of the day is that they turned his oxygen flow down to 2 liters. So far he’s handling the change very well and doesn’t seem to even notice the difference. His weight was up another 11 grams this evening, bringing him to 3 lbs 13 oz. In just two weeks he has put on a full pound, which is fantastic.

As for the big stuff on the horizon … we learned today that in about another week he could both be in a crib, and be breastfeeding. We knew these were possibly coming soon, but today we got some more specifics on how the transition for each works.

For the crib, the first criterion is size. It usually happens around 1800-2000 grams, but 1600 grams is the minimum weight. He’s currently 1728 grams. The second and more important factor is temperature. Currently his isolette is set at 27º Celsius (80.6º Fahrenheit) and it needs to be able to maintain his body temperature for 24 hours at 23-25º C (73.4-77º F). They’ve already started dropping the temperature on his isolette a little each day, so as long as he keeps handling the change without a drop in body temperature, they think he’s on track to be in a crib in about a week. This is particularly exciting because then we can put clothes on him and can pick him up whenever we want, instead of having to schedule one long hold each day.

For breastfeeding, sometime around week 33 or 34 (he’ll be 33 weeks on Monday), they’ll start scoring him on a scale of 1-4 every time they come in for cares. 1 means he’s awake and showing strong hunger cues like sucking on his hands or rooting. 2 means he wakes up when he’s handled and shows some hunger cues. 3 means he’s briefly alert with cares but shows no hunger cues, and 4 means he sleeps through cares with no hunger cues. If he goes 24 hours with all 1s and 2s then they start the “72 hour breastfeed” which is like breastfeeding bootcamp. During this time they want me around as much as possible so I can nurse him whenever he’s hungry. After those 72 hours they are fine mixing breast and bottle, but those first 72 hours are critical to breastfeeding success. Since it will take a while before he’s eating efficiently they will weigh him before and after each feed, subtract the amount he’s taken in via nursing and make up the difference with the tube. Once he’s getting 80% of his feeds via breast or bottle, they will remove his feeding tube. It can be a long process and we’ve been told this could very well be one of the things that keeps us here until close to his original due date as he learns to work for his food.

So that’s the plan. I love me a good plan.

Burrito baby

Burrito baby

NICU day 44

Emmett reached an exciting milestone today: he is now officially double his birthweight, at 3 lbs 12 oz. He had another pretty good day today. Still a few more events than I would like, but nothing like he was a few days ago. The team is happy enough that they want to turn him down to 2 liters of oxygen flow tomorrow. It makes me nervous, but they think he can handle it.

There was also some talk today about moving him to a crib soon, which is huge. They have turned down the temperature in his incubator and have been swaddling him in a blanket. This was mostly to keep him from pulling out his feeding tube, but it’s good to see he is getting better at regulating his temperature.

Today was my first day working from the hospital and it went well. It made the day go by faster and I was actually pretty productive, so I’m feeling good about my decision to go back and save my leave for when E comes home. I still have every reason to believe that will be sometime mid-August, but it’s crazy to see how much progress E is making and how the team is plowing ahead with next steps. It’s weird – I’m actually kind of scared of the progress. For one, I’m afraid of getting too comfortable again. I think what made the last week’s setback so hard was the fact that he had been doing so well the week before. But two, I’m honestly afraid to take him home. The NICU can keep even a very sick baby alive. Can I? I remember when T was a newborn I would just stare at him while he slept, terrified he would stop breathing. And he was healthy. With E’s prematurity and the CLD, I’m going to be a basket case. I may need more weaning from the monitors than E does. I kind of want to get one of those Owlet monitors, but D thinks I’ll drive myself even more crazy.

I’m home tonight and did some cleaning and organizing of the nursery this evening. I unpacked T’s old newborn clothes and hung them in E’s closet. Seeing those little clothes (which look huge, compared to Emmett’s size) brought back a ton of memories. As scared as I am to bring him home, it’s starting to feel more real and I’m also getting excited.