Tag: brady

Baby Emmett, NICU

NICU day 14

Keeping up with the Hoffmans

Last night was a little rough. It wasn’t anything terribly serious, but Emmett had about a million desats and a few bradys and the alarm was pretty much going off all night. And when he wasn’t tripping his alarm, he was fussing, so I was up consoling him a lot. Needless to say, I didn’t get much sleep. I’m home tonight and hoping to catch up.

The nurse thinks the increased desats may be partially due to the increased feed volumes. Basically his stomach gets so full it pushes up on his lungs and makes it a little trickier to breathe. They aren’t too worried about it and say he should learn to adjust pretty quickly. Right now the highest priority is putting on weight, as the desat and brady episodes are something he should naturally grow out of as he gets bigger.

Unfortunately, we had to postpone one part of his feeding plan. In addition to increased milk volume, we were supposed to increase the fortification of my milk from 24kcal to 28kcal — but he’s losing a little too much fluid via his diapers and the nurse thinks he might not be processing the fortified feeds as well as he should. So we’re going to give it a few more days and try again. At his weigh-in tonight he was up to 2 lbs. 2 oz. Keep growing!

The nurse drew his bili again this morning and it was slightly elevated — up to 3 from 1.5. It wasn’t high enough to put him under the lights again just yet; they are hoping at this point he can regulate his bilirubin on his own. So they’ll check again in a couple days and decide then whether he needs another session.

He also had another head ultrasound today to check for brain bleeds. Apparently this is something they do three times in preemies — at one week of life, two weeks and then a final time at 30 days. I had assumed since our first scan was clear that they wouldn’t be doing one again, so I was a little surprised when the ultrasound tech showed up on our room this morning and I got a little emotional with worry. Happy to report all is still clear. At least now I’ll be prepared for the third and final ultrasound in another couple weeks.

We had a good kangaroo care session today. He was very mellow and stayed on me for about two and a half hours. I also got to help the nurse reposition him in his isolette, which included holding him while the nurse repositioned his sleeping pad.

All in all, a pretty good day, despite a sleepless night before. E is now two weeks old, which is really hard to believe. It feels like it’s been forever and just yesterday at the same time.

Those are my hands holding him!
Those are my hands holding him!
Baby Emmett, NICU

NICU day 12

Keeping up with the Hoffmans

I should be 28 weeks pregnant today. Mondays were the day I got to jump to the next week. It’s surreal to be staring at my baby through an isolette instead of staring at my growing belly (not to mention, my body is almost back to normal again, which is weird too). Never in my wildest dreams did I think we’d be here, and some days I still feel like I’m dreaming. I kind of alternate between just going through the motions in a daze and feeling completely overwhelmed with reality. But at least for now I feel like we’re settling into a pretty good routine, and balancing home life and NICU life – something I was told was one of the hardest parts – hasn’t been as hard as I’d imagined. Part of that might be my tendency to time manage better with a really full plate. But I think a huge part of that is having an equal partner in D, and having a child at home who forces us to maintain some sense of normalcy. And even though D went back to work, his work is very flexible and he’s able to do a lot of it from the hospital. We manage to have dinner together most nights, and lunch together pretty frequently as well. It’s not an ideal situation by any means, and some things like sleep, housework and the dogs have definitely taken a back seat. But overall I’d say the balancing part isn’t as bad as it could be.

I didn’t get a lot of sleep last night. E’s alarms kept sounding – he had several desats, even though his oxygen was turned up to 28%. He also had a few bradys, which are always a little unnerving. The good news is, his bili levels were low again (1.5) so he got to come off the lights. It’s normal for them to come on and off several times – and even term babies sometimes deal with this – but I’ll be happy when the lights are gone for good. He’s eating like a champ and we’re up to 16 ML every three hours, which is considered a full feed for this age. From here on out it’s just fine-tuning as far as feedings go, depending on his weight and other needs. The doctor mentioned starting him on vitamin D (and something else I’m blanking on right now) and iron. But those will just go in through his feeding tube. Typically preemies get to start bottle or breast feeding around 34 weeks — 33 at the earliest (they have a hard time coordinating sucking, swallowing and breathing before then). But in the meantime, we’re told the pacifier can help develop his sucking, and when we’re doing skin-to-skin I can sort of follow his lead and if he makes his way toward the breast (some babies will do this instinctively – pretty amazing), to let him. As of now he’s still pretty tiny and immobile when we’re doing kangaroo care, so I don’t see that happening any time soon. But that’s encouraging to look forward to.

Speaking of kangaroo care, today’s was kind of a bust, which was really disheartening. He just couldn’t keep his oxygen levels up, even though his oxygen is usually higher when he’s on me. He just seemed kind of stressed out and not breathing well, so the nurse ended up putting him back in his isolette after only about 15 minutes. Incidentally, right afterward she suctioned a large booger out of his nose and then he started breathing a little easier. She said we could try kangaroo care again later, but I had to leave shortly afterward to get home and take T to a birthday party.

D spent the afternoon at the hospital and will stay the night tonight. He said E had a really good rest of the day with no alarms or anything. Maybe it really was just a booger. Amazing how something seemingly insignificant can cause such problems for a preemie. At one point this evening the nurse redid his cannula and D was able to snap a rare photo with E’s face more visible while it was briefly off. He really is growing and changing fast, and I think he looks a bit like Theo! His weight was up to 921 grams today, or just over two pounds. Keep growing, little Emmett!

IMG_1471

Baby Emmett, NICU

NICU day 10

Keeping up with the Hoffmans

We have hit double-digits on days in the NICU. Here’s to hoping we don’t ever hit triple digits.

Last night and today were relatively uneventful with E again. He had a few desats (oxygen saturation levels dropping below the 88% threshold), but only one bradycardia that I’m aware of today. I held him for almost two hours again this morning (he did amazing!), and then I went home and passed D the baton. D’s dad and step mom came to visit this afternoon while I watched Theo, and then they all came home and the in-laws brought us dinner. Then D went back for the night. E got weighed again tonight and is up to two pounds! You know your perspective is skewed when that seems SO BIG! Proud of my boy. Feedings are going great. We’re now up to 12 ML every three hours, and they began fortifying my milk today with extra calories and protein to help him pack on more weight.

So, tonight was supposed to be my night to get some rest at home, but when I was giving T a bath, he complained that his penis hurt. Then after his bath, when he was going pee, he started crying and said it hurt to go. Great. Sounded like a UTI to me, so I got him dressed and loaded into the car, and off to urgent care we went. Only when we got there, urgent care was closed. (D asked me if they had “I hope it wasn’t really urgent” on the door.) I didn’t think it was quite ER-worthy so I told Theo the doctor went home and we’d have to wait until morning. His response: “The doctor was tired?” (Yes, sweetheart. So is Mommy.) When we got home, he went pee just fine and said he was all better. Go figure. I guess I’ll see how he feels in the morning and whether I actually need to take him in. I hope he isn’t starting to make stuff up for attention. We really have been trying so hard to make things as normal as possible for him throughout this whole ordeal.

In other T news, he woke up from his nap this afternoon with a runny nose. I’m really hoping neither D or I catch his cold, or we’ll have to stay away from the NICU until we’re better. That would be pretty devastating. So far it hasn’t been so traumatic to leave E at the hospital because we’re never gone for long and one of us is almost always there. Not being able to see him for several days, though? I think that would break me.

Tomorrow I’ll spend the morning with T, then D will come home and have lunch with us and then I’ll head back to the hospital for the afternoon/night. Onto day 11…

Kangaroo selfie. (Pretty sure this ordeal has aged me about 10 years.)
Kangaroo selfie.
Baby Emmett, breastfeeding, NICU

NICU day 9

Keeping up with the Hoffmans

Today was a relatively uneventful day, as far as E is concerned. They increased his feedings to 9 ML every three hours. Tomorrow they’ll go up to 12 ML and will also start fortifying with a high-calorie supplement to help him put on weight. Speaking of weight, he is finally officially back to his birthweight. Actually, he’s a little above (860 grams vs 840 grams, but still rounds out to 1 lb. 14 oz.). So that’s all good news.

His breathing was a little all over the place today. For much of the day he was on 21 percent oxygen, which is essentially room air. But he had a few desaturations, so they’d turn his oxygen up a bit. But then he’d be hitting 99-100 percent oxygen (sweet spot is between 88 and 98 percent), so they’d turn his oxygen down. Repeat, repeat. It was a bit of a dance, trying to keep a balance. He had a few more brady episodes today (heart rate drops), but not nearly as many as we had yesterday. We got to do kangaroo care again today around 2 p.m. for almost two hours and it was blissful like yesterday. My sister-in-law came to visit for a bit this morning, and our friend Matt cooked us dinner this evening at our house. I’m back at the hospital and will be staying the night. It’s pretty quiet here right now and the night nurse is someone I like. Overall, it was a good day.

The one sour part of my day was fighting with insurance. I have been trying for a week to get a breastpump sent to me (thankfully the hospital has given me a loaner in the meantime). The issue is, I need a hospital-grade pump, and the insurance company seems to think that’s not necessary. It drives me absolutely batty that the people in charge of approving or denying insurance claims don’t even have the medical knowledge that should be required to do so. My insurance plan clearly states that a hospital grade pump is covered when medically necessary. And since prescribing a hospital grade pump is nationwide standard protocol for preemies — and I have a preemie — you’d think this would easily fall under the “medically necessary” category. A regular pump isn’t typically good enough when you’re trying to bring in your milk: A) by solely pumping and not nursing (nursing is much more effective) and B) weeks or (in my case) months ahead of schedule.

When I’d initially called to order the pump last Friday, they’d said they were shipping it Monday. When it hadn’t arrived by Tuesday, I called, only to find out I’d been denied (thanks for notifying me?). The insurance rep kept asking me if I had tried a regular pump first and I had to keep repeating myself that that’s not what my doctor prescribed. At one point she even asked me if I’d tried “just nursing him.” (Uh.) They told me my doctor needed to provide a statement of medical necessity – which is pretty much what I thought the prescription was, but okay, fine. So I called my doctor and explained what I needed. No problem, they’d send that over that afternoon. When I still hadn’t received my pump today, I called again. They claimed they had never received the statement of necessity. I had my doctor send it again. They still claimed they hadn’t received it. But then changed their story and said because it was previously denied, I couldn’t file the claim again for a year. I ended up escalating to a supervisor, and an hour later, they finally agreed to cover it. I’m still fuming. With everything I’m going through right now, this is really the last thing I need to be worrying about. The part that makes me so angry is you know they knew they should be covering it. I’m pretty sure insurance companies deny things and “lose paperwork” on purpose because they know a lot of people won’t fight it or will give up.

Now that I’ve gotten that off my chest, I’ll end this post on a positive note with a couple photos. Because it really was a good day overall.

Tiny hand.
Tiny hand.

 

Tummy time (note, despite the fact that you aren't supposed to put infants on their tummies to sleep, it's actually good for preemies and helps them with their breathing - just thought I'd point that out so no one worries! :)
Tummy time (note, despite the fact that you aren’t supposed to put infants on their tummies to sleep, it’s actually good for preemies and helps them with their breathing – just thought I’d point that out so no one worries! 🙂