21 percent oxygen – Keeping up with the Hoffmans

NICU day 35

June 22, 2016August 7, 2018 Keeping up with the Hoffmans

Emmett is now 5 weeks old and weighed in tonight at 3 lbs. 3 oz. The weight gain makes me really happy. For one, gaining has always been our biggest goal since his other issues should work themselves out as he grows. But also, seeing those numbers go up provides a tangible measure of progress that I can fully understand. Unlike all the other numbers that leave my head spinning, weight = good. And the closer he gets to weighing what a term baby would weigh, the better.

He’s still having some oxygen saturation issues, and they turned his cannula flow down to 4 liters today, which may be contributing, or at least didn’t help. All day we were chasing the numbers. They’d turn his oxygen down and he’d desat. So they’d turn it up and he’d high-sat. Lather, rinse, repeat. But he’s at 21% currently and satting nicely so hopefully we’ve turned a corner.

He’ll need to get down to 2 liters before we can truly attempt breastfeeding, though the nuzzling we’re doing during kangaroo time is still going really well and he did quite a bit more actual sucking today. Still not officially feeding, but he was definitely pacifying. The nurses are impressed with his progress, and it just felt really normal and natural to have him there like that. It’s funny the things you take for granted until you’re thrown into a situation like this where “normal” is rare and momentous.

Baby Emmett, monthly updates, NICU

NICU day 31 and 1 month old

June 18, 2016August 7, 2018 Keeping up with the Hoffmans

Today Emmett is one month old. When Theo was a baby I wrote monthly update posts to keep track of milestones, and while this time around is obviously very different, I’ve decided to start those up again. I don’t have the energy to write a daily post and a monthly update, though, so as long as we’re in the NICU, the monthly updates will be combined with my daily updates.

First, the day 31 update:

Overall, Emmett had a good day, though he had a few more events today after a streak of several days with very few. It wasn’t enough to be concerning, but definitely noticeable. I’m hoping he was just having an off day and this isn’t going to become a trend. Dr. P visited today and let me know she didn’t plan on turning the pressure on his oxygen down for another several days, even though everyone thinks he’s ready. Like the doctor I had talked to yesterday (Dr. B), she too tends to take a more conservative approach. There are several doctors that rotate through the NICU and they all seem to have varying philosophies on how aggressively to proceed. Doctors P and B tend to be on the more conservative side. Dr. L is definitely the more aggressive one, and the others fall somewhere in the middle. I will say, at least right now I’m a lot more comfortable with taking a conservative approach that won’t wear E out and will let him focus on gaining weight. Speaking of, he’s up another 40 grams today and is now a full pound over his birthweight!

Now for the 1 month update:

Adjusted age: 30 weeks 5 days gestational.

Stats: 2 lb 14 oz (I created the image below before tonight’s weigh-in and don’t have the energy to change it) and 14.5 inches.

Milestones: Everything is a milestone at this point. Breathing via high-flow cannula at 21% oxygen is probably the most notable, though

Sleeping: This section will probably be one of the more robust ones subsequent months. As for now… he’s a great sleeper? But he’s supposed to still be a belly baby so that means nothing right now. Since T was such a terrible sleeper, I still have high hopes the universe will give us a good sleeper this time.

Eating: 25ML every three hours via NG tube, plus 28kcal of fortification added to my milk. Pumping still sucks but my supply is doing well.

Personality: Yet another section that will be more robust as time goes on. If it’s even possible to read anything at this age, I think he may be very social like his big brother. He loves being handled and whenever the nurses come around for cares, he gets very alert and stares up at them.

Likes: kangaroo care, sucking on his pacifier or hands.

Dislikes: having his blood drawn.

Mama: has had a really easy recovery. Guess that’s the silver lining of a small baby. Unlike with Theo where I couldn’t sit down for a week, I didn’t even feel like I had given birth the next day this time. I’m about 4 lbs. away from my pre-pregnancy weight, despite the fact that I’m completely ravenous and eating everything in sight. I was like this with Theo, too. Way hungrier while breastfeeding than while pregnant. Gotta love the extra calories making milk burns.

Writing down some of these milestones felt a little silly this early, but it will be good to have a benchmark for future months. I will say, starting these monthly updates made me excited for what’s to come, and for the first time since E was born I’m actually thinking about the future instead of just trying to survive the day.

Baby Emmett, NICU

NICU day 24

June 11, 2016August 6, 2018 Keeping up with the Hoffmans

Emmett is a rock star. Another boring day today and he’s still doing fantastic on the CPAP. I held him for almost three hours and he was so content the entire time. He was sprawled out as if he didn’t have a care in the world. Unfortunately, his weight didn’t change at all today. Better than a loss, but not exactly what we were looking for. The nurse and doctor aren’t worried, though, and pretty much reinforced what I mentioned yesterday – that the upward trend over time is what matters and daily gains or losses don’t mean much because there’s a fair amount of fluctuation at this age. He’s also at a point developmentally where he’s doing a lot more on his own, and the fact that he’s been on 21% oxygen (room air) for about two days straight means he may be burning more calories by simply breathing.

D and I both took Theo to swimming lessons this morning, and it was nice to get out as a family (or as complete of a family as we can as long as E is in the hospital). I headed back to the hospital after lunch and my parents came for a brief visit before swinging by our house to pick up T for the remainder of the weekend. Tomorrow afternoon D is trading me at the hospital and I’m going to get as much of T’s big boy room completed as I can while he’s away at grandma and grandpa’s.

Really hard to believe we’ve been here 24 days…

Baby Emmett, NICU

NICU day 21

June 8, 2016August 6, 2018 Keeping up with the Hoffmans

Emmett is three weeks old today. Also, I have a new niece, born today. It was bittersweet hearing the news my brother and sister-in-law were in labor. On the one hand, I’m excited to meet my niece, and having cousins who are exactly three weeks apart in age will be fun as they grow up. But it also dredged up a ton of repressed emotions and I had myself a good cry. I was hit with the realization that their baby was supposed to be two months older than ours. That I’m still supposed to be pregnant. And I’m mourning the loss of a normal birth experience; the anticipation, the excitement, the rush, the joy. For as painful, long and excruciating as my labor with Theo was, I’ve always said I would repeat that day every day for the rest of my life if I could. There is simply no feeling in this world like having a screaming baby handed to you that you just gave life to. If I could bottle up that high and sell it I’d be rich.

But we didn’t get that this time. And since we’re done having babies, we don’t get that ever again. I got cheated out of that experience. Instead of intense joy, I’ve never been more scared in my life. I was alone and unsure if D would make it in time. Unsure if my child was even going to live. And there’s still so much uncertainty. Even the best moments so far like getting to hold him for the first time and having Theo meet him are overshadowed by the fear that this story still might not have a happy ending.

I’m glad one of my favorite nurses was on today. She saw how upset I was and gave me a hug. She pointed out how well Emmett is doing, and she offered to connect me with another mom so I would have someone to talk to. I mentioned yesterday that the support group isn’t very well attended, and actually last night’s session ended up getting cancelled altogether. This experience is very isolating. So this afternoon I had a “mom date” with another one of the moms in the NICU. Unfortunately (for me — good for her!) she is getting discharged tomorrow, but we really hit it off and she gave me her phone number and told me to call or text her any time I needed to vent or ask questions. She’s been here for more than three months and has a heartbreaking and amazing story. I’m so happy she gets to go home tomorrow and only wish I had met her three weeks ago!

I attended daily rounds again this morning. While there wasn’t much new to report, I’ve let the nurses know that as long as one of us is here during rounds, we’d like to attend. For me, knowledge = some semblance of control in an otherwise uncontrollable situation. His iron is a little low (27) and if it gets below 25 they will treat with a hormone patch. He’s on iron supplements currently, though, and they are hoping that will do the trick. They’ll check again in a few days. I think my eyes must have still been a little bloodshot from crying when I attended rounds, because everyone was giving me major “hang in there” looks, and the doctor kept assuring me he’s doing well. I’m feeling a bit schizophrenic on the sympathy front. On the one hand, I can’t stand it when someone like Nurse Bitchy completely ignores my pain, but I also get really uncomfortable with all the pity. I’m not really sure what I want — besides the privilege of still being able to complain about swollen ankles and make jokes about how awful it is to be so huge in this heat. That would be nice.

The good news is, I got to hold Emmett for a full three hours today and he did amazing. It was just what I needed after an emotional day. There’s still so much uncertainty in our future, but I’m trying to focus on the little things that mean the most right now: a day with fewer events, 21% oxygen for most of the day, and a weight increase of 52 grams (he’s now 2 lbs 7 oz!).

Keep fighting, little man.

Baby Emmett, NICU

NICU day 20

June 7, 2016August 6, 2018 Keeping up with the Hoffmans

We had a good night last night and a good day today overall, though my head is swimming with medical stuff.

This morning, the respiratory therapist and nurse brought up the idea of taking E off of the NIV NAVA machine, which is what kicks in and breathes for him when he has apneic episodes. He’s having so few of these anymore (though still a fair amount of bradys and desats) that both the nurse and RT thought he could be weaned and go to continuous forced air via his cannula. This would still provide some backup and stimulate him to breathe if he didn’t, but wouldn’t give him the puffs that basically breathe for him. I’m not going to lie, the thought made me really nervous. As much as I want to trust the medical professionals, this just felt like a really big step when just yesterday we were implementing more support in the form of increased caffeine and starting him on a steroid inhaler.

The nurse invited me to attend daily rounds to discuss his care with the rest of the team, and I was relieved when his doctor said it might be a little too soon to wean off the NIV NAVA. Instead, she’d like to give him a few more days on the Flovent and let him gain more weight, and reassess in a few days.

Another discussion item in rounds was his elevated heart rate. Since boosting his caffeine he’s had a few episodes where his heart rate goes up really high (into the low 200s), which sets off the alarms and is always a little scary. The doctor assured us that periodic high heart rate episodes aren’t harmful, and that the benefits of the caffeine outweigh the negatives. She said we don’t typically worry about a high heart rate unless it’s sustained, or we start seeing other evidence his heart is working too hard, such as changes to his blood pressure or failure to gain weight. As of now his blood pressure is still good, though he did manage to lose 20 grams today, despite the fact that they bumped his supplementation up from 26 kcal to 28 kcal. The weight loss was really disappointing, especially since they’ve been telling us all along that weight gain is the priority. And the fact that it coincided with the increase in caffeine and higher heart rate has me a bit concerned. We’ve been told a day of occasional loss isn’t a big deal, as long as it doesn’t become a pattern. Here’s hoping it was a fluke and we have a nice gain tomorrow.

Despite the medical overload and the disappointing weight loss, today was a good day overall. He stayed on 21% oxygen almost all day and had way fewer events than the last couple days.

Oh, and something happened tonight that made me smile. I had given Theo a fortune cookie this evening and, well, I think I may need to save this…

Baby Emmett, NICU

NICU day 16

June 3, 2016August 6, 2018 Keeping up with the Hoffmans

These updates seem to be getting shorter and shorter because there’s less to report. I’m completely okay with that. Today was another good, relatively uneventful day, preceded by an uneventful night. He’s been on 21% oxygen most of the day (yeah!) and is having way fewer desats. They increased his feedings to 19 ML per feed and he’s put on another 20 grams since yesterday, bringing him to 990 grams, or about 2 lbs. 3 oz.

The biggest change for the day is that the nurse removed the feeding tube from his mouth and put it in his nose instead. He kept tonguing the tube and getting it out of position, so this should be more comfortable and secure, and also lets us see even more of his face. Since he already had the nasal cannula, you can hardly even see the feeding tube now, as it’s just tucked in with it. Here he is drooling all over me during kangaroo care today. 🙂

I had lunch with my boss and another coworker today. It was great to catch up, and they presented me with gifts for us, Emmett and Theo, cards and several gift cards from about 30 of my coworkers. Opening up the gifts and reading everyone’s messages made me tear up. The support we’ve received throughout this whole ordeal has been truly overwhelming.

Onto day 17…