tongue tie – Keeping up with the Hoffmans

NICU day 67

July 24, 2016August 7, 2018 Keeping up with the Hoffmans

Today was a good day. Last night was another fussy night because of the reflux, but we’re still seeing way fewer events.

The best part of the day was that we had a major breakthrough in breastfeeding. Part of that is definitely thanks to the tongue tie clip, but a big part is thanks to the nurse who suggested we try nursing with a nipple shield this morning. Without going into too much detail (because my coworkers and father-in-law read this blog), the nipple shield helps create a shape that makes it easier for a baby with a tiny mouth and under-developed muscles to latch onto (think more bottle nipple than human nipple), and also helps reach the roof of their mouth, which stimulates their sucking reflex. The difference was like night and day, and he actually nursed for about 15 minutes straight instead of the on-off-repeat cycle we’ve been on.

Unfortunately, toward the end of his feed, he had a pretty big brady. The nurse said that’s a common issue for preemies. The whole suck-swallow-breathe thing can be tricky for preemies to coordinate and he must have forgotten to breathe temporarily, which made his heart rate drop. The nurse warned us we could start seeing those pretty frequently now with feedings, which is kind of disheartening. Just when we overcome one hurdle, a new one presents itself.

The rest of the day went really well. I came home around noon and D headed back for the afternoon and will stay there tonight. I’m happy to report we have officially reached 6 lbs!

Baby Emmett, breastfeeding, NICU

NICU day 66

July 23, 2016August 7, 2018 Keeping up with the Hoffmans

Last night I spent the night at the hospital. Like the night before when D had stayed, Emmett had a pretty long night of just general fussiness. The good news is, he’s having way fewer events than he has lately. But that reflux is just brutal. He spent pretty much the entire night grunting, punctuated by the occasional crying spells. So I didn’t sleep well and was up a lot. It was kind of like … having a newborn.

This morning, after a quick attempt at breastfeeding (still not really getting it), I left the hospital to meet D at the pool for Theo’s swim lessons. Since I was running late, I decided to pump on the way, something I’ve done many times. I’ve mastered the art of pumping and driving. I have a hands-free setup, so I simply get everything situated before I start the car, and then unhook once I get to my destination. I usually wrap a cardigan around myself so it’s not so obvious to the cars next to me. Well, I may have been driving a little fast, trying to make it to the pool on time (I bet you can guess where this is going). Yeah. I got pulled over. While pumping.

I had a moment of panic when I saw the lights. Although a cardigan is sufficient cover from drivers in the lane next to me who probably aren’t looking too hard into my windows, the thin, semi-sheer fabric didn’t exactly hide the outline of my pumping shields. Or the noise of the pump, for that matter. So much awkward. Thankfully, I think it was even more awkward for the police officer, who quickly let me off with a warning. I think he wanted to get out of there even faster than I did.

I had a good day with Theo, watching him swim, and then meeting up with some friends with kids his age for lunch and play time. Then I had to rush back to the hospital (once again pumping in the car, but this time paying close attention to the speed limit!), so I could meet the doctor for E’s frenectomy (tongue tie clip). I was nervous about the procedure, but it ended up being very quick and he hardly cried at all. The eye exams were 100 times worse. They immediately put him on me afterward to nurse — both for comfort and because they want him extending his tongue as much as he can right away. It went a little better than this morning’s session. He’s still kind of a lazy nurser (which will hopefully improve with practice and maturity), but I could already tell his latch was improved, so I’m hoping we continue to make forward progress.

He’s still hanging out on the oxygen tank at 1/32 liter and hardly having any events (knock on all the wood). He got a bath this evening — first time in the sink — and did pretty well. Weight was up 58 grams, bringing him to 5 lbs 15 oz. He very well may crack 6 lbs tomorrow!

Baby Emmett, breastfeeding, NICU

NICU day 63

July 20, 2016August 7, 2018 Keeping up with the Hoffmans

Today was a pretty good day. They were able to drop E down to 1/64 on his oxygen tank, which is virtually nothing, and his oxygen saturation looked really good most of the day. For a little while it was bouncing up then down, but it never stayed at either end, and by late afternoon it was more steady than I’ve seen it in weeks.

I got to try breastfeeding twice again today. The morning session was a bust; afternoon was a little better. The lactation nurse stopped by for the afternoon session and we had a long chat about plans and expectations. I felt much better after talking to her. She said we’re doing everything right, and that all we can really do is keep practicing. Some babies just take a while longer to figure it out, especially one born as early as E and with as many breathing problems. The whole suck-swallow-breathe coordination is surprisingly complicated for a preemie. She also thinks getting his tongue tie clipped will help, so I’m both looking forward to and dreading that. It’s a quick procedure, but I’m sure it’ll hurt.

It was a relatively uneventful day, which was nice for a change.

Baby Emmett, NICU

NICU day 62

July 19, 2016August 7, 2018 Keeping up with the Hoffmans

This morning I woke up excited to try breastfeeding again after last night’s progress. Unfortunately, Emmett had other plans and showed virtually zero interest when the nurse put him on me. It was really disappointing. The nurse and I agreed we’d try again later, and I’m happy to say this afternoon was a much better experience, similar to last night. Like last night, he still isn’t completely getting it, but he was making an effort, and latched a few times. I think the big difference was catching him when he was wide awake. Until he really gets the hang of it, I think trying to nurse him while he’s sleepy is going to be futile and we’re going to have to be more opportunistic about trying when he’s alert. Now that he’s latching, though, I’m noticing just how much his tongue tie is going to affect his ability to effectively nurse, and so the doctor and I agreed they’d clip it in the next few days.

While talking with the doctor today, she also recommended we reconfigure his breathing support. Whereas he had been on 1 liter of oxygen, anywhere from 21 to 30 percent concentration, she instead recommended we try an oxygen tank at 100 percent, but drop the pressure way down. In theory, the lower flow but higher oxygen concentration should give him just the boost he needs to keep his saturation up, while reducing the amount of forced air into his nose, causing him less irritation and congestion. Also, if he were to have to come home on oxygen (still hoping that’s not the case), it would be a similar setup as this — a portable tank with higher concentration and less pressure. They started it at almost no pressure, but then ended up having to bump it up to 1/4 liter after he had a couple apnea episodes this afternoon, and then up to a 1/2 liter after another big apnea tonight. If he doesn’t tolerate that well overnight, he’ll go back to his previous configuration. Two steps forward, one step back, I guess.

Late this afternoon, we got the news that E would have another eye exam at 6 p.m. I knew it was coming up soon, but these exams always seem to sneak up on me. It was just as horrible and torturous as the previous two, but I’m happy to report his stage 1 ROP has resolved itself so we never have to repeat that awful exam again! I can’t help but think the eye exam is at least partially to blame for his regression tonight. He tends to have a rough time after those.

Weight was up 44 grams tonight, bringing him to 5 lbs 7 oz.

I can't stop kissing his fuzzy little head. — I can’t stop kissing his fuzzy little head.

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Baby Emmett, breastfeeding, NICU

NICU day two

May 20, 2016August 6, 2018 Keeping up with the Hoffmans

Emmett is two days old now – about 55 hours to be exact. So much has happened in just one day, and I think the gravity of what we have ahead of us is starting to sink in. How can we do this for three months? It feels impossible. But I guess we have to. The alternative is even more difficult to fathom and I refuse to even type it. The good news is, Emmett continues to impress the NICU team, though we certainly got our first taste of the “two steps forward, one step back” pattern we were warned about today.

The biggest milestone today: they removed his breathing tube! That’s a huge step in his journey toward breathing on his own. The problem was, he still needed some assistance, and the team determined a CPAP (like what adults with sleep apnea use) was the way to go — and Emmett HATED it. It was too much air pressure for him, so every time he would get a puff of air from the CPAP through his nose, he would open his mouth in reflex and chuff out some of that precious oxygen. This caused the oxygen sensors to go berserk every couple minutes and made it sound like he was crashing. Even though the nurse and RT assured me he was fine – that he just needed to get used to it and that the alarms were just overly sensitive, the sound of all those alarms was just so unnerving, and in my sleep deprived state (3 hours last night and 4 the night before), it was simply too much for me to handle. Emmett was flailing around in protest, alarms were going off left and right, and I broke down sobbing. This went on for a couple hours. They even put a chin strap on him to keep him from letting all the air out his mouth, but then his face just looked smooshed and he was still fighting the machine. Finally, the team determined he was expending too much energy fighting and tried a nasal cannula instead of the CPAP. It was like an instant calm came over the room and things have been better ever since. I swear, I’m going to be hearing that damn alarm in my nightmares. D joked that E will probably need it to fall asleep once we take him home.

One thing I should mention, that was pretty amazing, was in between pulling the tube and putting on the CPAP, I got to see his full face again for the first time since birth. It was only a split second, but I snapped a quick photo.

Another benefit of not having the breathing tube is that he can actually cry now! As of right now it sounds more like a kitten mewing than a baby crying, but to me it’s the most beautiful sound in the world. I hope six months from now when he’s hollering and screaming all night, that I remember and appreciate how truly beautiful that cry really is, and how far we’ve come.

His bilirubin was looking a little low today, so after bragging yesterday that he hadn’t needed phototherapy yet, he started on it today, and will be on it through the night. They’ll draw his levels again in the morning. Thankfully, he doesn’t seem to mind it, though our whole room is glowing blue.

Around 1 p.m. the nurse wanted to insert a PICC line for nutrition and antibiotics. It’s a bit of a complex procedure so they require parents to step out of the room. D and I used the opportunity to take a walk and get some fresh air. We went down to an outside courtyard and sat in the sun, and I called my parents and gave them an update. The nurse called me on my cell when they were done and we went back to the room and found a calm and sleeping Emmett. Everything had gone perfectly with the PICC.

Around 5 p.m., the doctor stopped by to tell us she was concerned with how high his metabolic acid levels were. She said it could be something as simple as dehydration (he has been peeing a ton), or it could be an infection. She wanted to give him fluids and another dose of antibiotic (he’s been on antibiotics since birth due to the amniotic rupture), and then check his levels again at 8 p.m. If they didn’t drop, she wasn’t sure what could be causing it and mysteries are no good. D and I were a little troubled, but took a break to go home to the dogs, ate some dinner, cleaned up the house a bit and then met the doctor back in E’s room at 8. Thankfully, his metabolic acid levels are now fine. What a relief.

Another highlight of my day? I officially have working boobs. I may have shed tears of joy over pumping a whole 1.5 ML of colostrum this morning. It’s not much, but it was enough to get into a syringe and we can start feeding tomorrow (he’s been on just IV fluids so far, and the doctor wanted to figure out what was happening with his metabolic acid levels before we attempted feeding). I’ve been pumping every 2-3 hours around the clock since he was born and was beginning to get pretty frustrated with my lack of anything to show for it. But since this morning’s pump, I’ve been gradually increasing my production and am now up to 8 ML. The nurse says we’re already way ahead of what he needs, so I guess I’ll just get started on that stash! Since we’ll be pumping for quite a while before I can actually nurse him, it’ll be nice to have a good stash built up so I don’t have to worry about running out. Speaking of nursing — the nurse and I both noticed he has a tongue tie, which could interfere with nursing. They said it would be no problem to clip it once we get a little closer to that milestone. No use in putting him though more than necessary right now.

D went home to sleep shortly after talking to the doctor this evening, and I’m spending another night in the NICU. Tomorrow I’m going to take a little break and take T to swimming lessons, and D will come stay in the NICU. Then around naptime we’ll trade off and I’ll head back here and he’ll take T to a party. I’ll probably go home to sleep tomorrow night since we’ll have T with us again. Balancing our home life and our NICU life is going to be a bit tricky. We still haven’t decided when or how to tell T about baby brother, but will probably wait until E is presentable enough that we can introduce them. Right now all the wires are pretty intimidating and he’s too fragile for us to even hold. I can’t wait for the day I can get a picture of Theo holding Emmett.

Really looking forward to seeing my big boy tomorrow. I’ve missed him so much.