brady – Page 2 – Keeping up with the Hoffmans

NICU day 38

June 26, 2016August 7, 2018 Keeping up with the Hoffmans

Today was another emotional day. After taking T swimming this morning, I headed back to the hospital after lunch and found out they had lowered E’s oxygen flow to 3 liters — after discussing with D just last night that they were going to keep it at 4 for another couple days. The nurse said he’d been doing really well on it, so I didn’t push the issue. I was a little annoyed at the lack of communication and continuity between the night team and the day team, but if E was handling it fine, I guess I was fine with it too.

I hadn’t even been there more than 20 minutes when he had his first brady. I chalked it up to a random episode (he’s allowed to have those), or maybe an adjustment to the lower flow — but then he had another shortly afterward. I was beginning to get concerned, but tried to brush it off. Then when I was holding him, he had about five of them in a 45 minute span. I couldn’t hold back my tears – I felt like he was crashing on me – and the nurse came in and took him from me to put him back in his isolette. It was all very emotional. She suctioned his nose, hoping maybe he just had a booger (that caused some issues for us once before), but his nose was clear. Then she noticed his feeding tube had come partway out. She said that can sometimes cause a vagal nerve response, which was a likely culprit of our episodes. She pulled the tube out and reinserted (not fun to watch), and he seems mostly good since then. She also turned his oxygen back up to 4 and said we’d try again later. This time I spoke up and advocated that we give him at least another day and let him rest. He’s had a few additional bradys since the tube was repositioned, but the nurse said he may have just been worn out from the day’s events. Really hoping that’s the case, and the culprit was just his NG tube earlier. Who knew a rogue feeding tube could cause so much drama?

As much as I hated to leave him, I’ve been feeling incredibly guilty about all the time I’ve been spending away from T lately, so I went home to have dinner with the family. Since the nurse and I had agreed we’d try holding again after his 8:30 p.m. cares, I had to rush back to the hospital shortly after dinner. T didn’t take it very well and refused to even give me a hug goodbye. After the day I’d already had, this shattered my heart into a million pieces. I asked if he was mad at me because I had to go to the hospital again and he said yes. I hugged him (even if he wouldn’t hug me back) and left the house in tears. When I got to the hospital I saw a text from D telling me Theo was crying because he wanted to give me a hug. So we Facetimed for a few minutes and he was his sweet self again. I even held the phone up to E’s isolette so T could say good night to his brother. It was all very sweet and I’m glad it ended well, but the mom guilt is on overdrive these days. I feel a strong need to be with both of my boys all the time and I simply can’t.

This evening went better than the afternoon. I got to hold him for three hours and he did pretty well, though he still had a few events. He put on an impressive 87 grams tonight, which equals about 3 oz. in just one day! He’s now 3 lbs. 8 oz.

I really hope these last few trying days mean we’re about to move forward again. I’ve referred numerous times to the “two steps forward, one step back” mantra in the NICU. And the nurse tonight gave me another analogy: she said progress in the NICU is rarely linear. It’s more like loop-de-loops — you’re still going forward, but you’re looping backward on yourself in order to do so.

Hopefully Emmett doesn’t pull his NG tube out again — though this video was taken not even five minutes after it was reinserted, and I’m starting to think it may be hard to get him to leave it alone!

https://www.youtube.com/watch?v=EY4luPOPR9Q

Baby Emmett, NICU

NICU day 37

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

Today was an exhausting day. Emmett is still having a lot more events than before. The doctors say it may simply be time to up his caffeine dosage again, but the caffeine tends to raise his heart rate so I sometimes feel like we’re just swapping one set of alarms for another. And all those alarms just fry my nerves. I broke down crying during kangaroo care today because I’m just so tired of it all. Big picture, I know these desats and bradys are probably no big deal and he should outgrow them. And in talking to other NICU moms who have had much more serious complications, I almost feel guilty complaining. But I’m just so, so tired. And deep down I worry that the increase in events could be an indicator that something bigger is wrong, or that he’s beginning to take a turn for the worse. Or what if he doesn’t grow out of these events in the next two months? I know things can change on a dime in the NICU, so while he’s been a rock star by all accounts, I simply don’t trust him.

The good news is, he’s still gaining steadily. He gained another 25 grams and is up to 3 lbs 5 oz now. His team was so happy with his gain that they’ve lowered his fortification from 28 to 26 kcal and increased his milk intake to 28 ML per feed. So he’s starting to take more of my milk and less fortification. It’s rare for early preemies to be on exclusive breast milk and they’ve told us even after he’s released he’ll probably need three “milkshakes” per day (bottles of breast milk fortified with extra calories via formula powder). But I’m glad we’re moving in the right direction by increasing the ratio of milk to fortification.

I’m home again tonight and D is at the hospital. On the one hand, it’s hard for me to be away, but on the other, after such an emotionally exhausting day, it’s probably good. It’s always the hardest to leave when I need the break the most. Here’s hoping for a better day tomorrow.

Baby Emmett, NICU

NICU day 36

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

Today was a day of highs and lows. I woke up this morning to the news that Emmett would be having his eye exam at 8:30 to check for ROP (retinopathy of prematurity). I knew they would be checking for it soon, but hadn’t realized until this very morning that it was already scheduled. D quickly drove over from work so he could join us for the test. The ophthalmologist warned us that for a baby born as early as he was, it was very likely he would have it to some degree. They rank it in severity from stage 1 to stage 5, and the doctor said we were hoping it was below stage 3. Then he explained how he would conduct the test. My stomach churned, hearing him describe how they would peel his eyelids open and us an instrument to move his eyeballs around so he could get a good look at all sides. The nurse suggested we not watch and we happily obliged. So we mentally braced ourselves — both for the test itself and the results. I’m glad we didn’t watch, because the sounds Emmett made brought me to tears. Thankfully it was over quickly, and the ophthalmologist informed us that he was stage… ZERO! No signs of ROP, which is pretty amazing. He isn’t out of the woods yet (it can present itself later) and we’ll have to repeat this awful test every couple weeks until he’s close to full-term, but what a relief!

Having E pass his ROP test with flying colors made me insanely happy. I’m so proud of him. I don’t want to jinx anything but we keep passing all the scary stuff (brain bleeds, ROP) and now he really just needs to gain weight and all his bradys and desats should work themselves out. And – he was up another 43 grams tonight, bringing him to 3 lbs 4 oz. Like I’ve mentioned before, his “wimpy white boy” status and early gestation don’t seem to be holding him back either. He just keeps defying all odds. The neonatologist stopped by shortly after the eye exam and reiterated how great he’s doing and said if he keeps up the good work, we’ll drop him down to 3 liters of flow this weekend, and by next week he could be down to 2, which would allow him to try breastfeeding if he’s ready! After our chat, she basically told us not to bother coming to rounds because that’s about all there is to say about him at this point. Really can’t ask for much more than a boring patient in the NICU.

I warned you that this was a day of highs and lows, so here’s where it gets low. The ROP test completely wiped him out and he had a major increase in bradys and desats today. The nurse said that was to be expected, but it was still really disheartening. He’s had a bad streak the past few days anyway, and this test just kind of put him over the top. His poor eyes were all red and puffy from the exam, and even kangaroo time wasn’t very calming for him today. We started out in the nuzzling hold but he just couldn’t seem to get comfortable and his heart rate was skyrocketing from all the fussing he was doing. He wasn’t doing any nuzzling this time anyway, so after about an hour of failing to make him comfortable, I had the nurse help me reposition him so he was upright in the traditional kangaroo hold to see if that helped. It helped some, and he did eventually calm down. But then shortly after we put him back, the RT came in to change him to a different high-flow machine and the machine made a really loud sound and scared him into three brady-desats in a row. It scared the crap out of me and even the RT was very apologetic and said he didn’t think he’d react like that. I think it was all just too much for him.

D went back to the hospital after dinner and thankfully said he seems to be doing better this evening. I’m hoping we’re past the recovery period for the eye test and he’s on his way back to normal. Really dreading having to repeat this every two weeks. I know things could be much worse — and like I said earlier, he’s really doing amazing. It’s just so hard to see him uncomfortable and not be able to do anything to help him. It was just a really draining day.

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Baby Emmett, NICU

NICU day 33

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

Today we reached 31 weeks gestational age. We’re into the single digits in weeks on our countdown to going home. I realize we could go home earlier or later — and the doctor told me the other day that if things keep going the way they are, she sees us going home much earlier — but until we get closer to having a better ETA, I’m using our due date to avoid getting my hopes up.

Emmett had another good day today. His weight is up 60 grams, finally bringing him over the 3 lb mark! His hematocrit levels are also up 5 points, so the Epo seems to be doing its job. He’ll stay on it at least another week and then they’ll reevaluate.

E got to “nuzzle” again during kangaroo care today. He did more rooting than yesterday and even a tiny bit of sucking, but didn’t officially latch. Great progress. The only bad part was when they were putting him back, the moisture in his cannula backed up into his nose a bit and he stopped breathing. Babies this young don’t typically aspirate, thankfully, but their bodies’ response to getting water in their airway is to just stop breathing. Which is also scary. The nurse had to pull his cannula out and stimulate him a bit to get him going again. It was only for a few seconds, but they felt like an eternity.

He’s still having a few more events than I would like, which is only more noticeable due to the good streak we had last week. But we’re told repeatedly that he’s doing really well, especially for a “wimpy white boy.” I’ve had multiple NICU staff point out that statistically, Caucasian males have the most problems and longest stays in the NICU. Conversely, black females typically do the best. There aren’t any conclusive studies that explain why this may be, but it is statistically accurate. So not only is Emmett doing great for how early he was born, but he’s doing so in spite of his race and sex. He should grow out of these events as he gets older and bigger, so growth is still our biggest goal.

Wide awake – and looking so much like big brother!

Baby Emmett, NICU

NICU day 28

June 15, 2016August 7, 2018 Keeping up with the Hoffmans

Emmett is now four weeks old. I sound like a broken record but time has really flown, yet it also feels like we’ve been here forever. If we’re going by due date as our planned release date, we’re about 1/3 of the way there, so that’s promising.

E is still doing fantastic in the breathing department. They decided to give him one more day at 6 liters on the high-flow and will step him down to 5 liters tomorrow. He is also still having very few events, compared to just a week ago. He had two self-recovered bradys today that I’m aware of, and one of them didn’t even include a desat (usually he desats right after a bradycardia event).

Unfortunately we did get the news today that his red blood count is very low, and since he’s already on the maximum dose of iron, they’re moving onto something a bit more aggressive: Epogen – an injectible protein that causes your body to generate more red blood cells. So if Emmett wins the Tour de France he won’t pass any blood doping tests. The hope is that the Epo will help him avoid a blood transfusion, which carries more risks. The main risk factor with Epogen is an increased risk of ROP (retinopathy of prematurity – a degenerative eye disease) – but that risk is usually higher in babies closer to 33-34 weeks, when the eye’s blood vessels are rapidly growing. Babies are also at much higher risk of ROP when they’ve been on high levels of oxygen for an extended period of time. Since he’s never spent much time on high levels and has been on room air for several days now, the doctor felt he was a prime, low-risk candidate for the Epo. They will administer it three times per week for two weeks and then recheck his levels. With any luck he’ll be off the Epo before he reaches that 33-34 week stage where his eyes are at a higher risk anyway.

Another small thing we dealt with today was some jumping blood sugar levels. First they were high, then they were low, and then they were normal. They are going to recheck in the morning, but didn’t have any idea why they might be doing that. They didn’t seem too concerned, but I get a little uneasy with the lack of explanation.

They didn’t weigh him last night until after midnight, so I didn’t include that in yesterday’s entry, but he went up a whole 70 grams! But then tonight he lost 30, which we kind of expected after such a huge jump yesterday. Still, he’s up to 2 lbs 11 oz — almost a pound above his birthweight! Keep growing! He will be one month old on Saturday and I would love nothing more than for him to hit the 3 lb mark. #squadgoals

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 19

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

After a good day yesterday, E had a lot of events overnight. Even though we seem to be having a good day about every other day, the events have been increasing in frequency. He also is more dependent on breathing support than they’d like him to be at this point. So D and I were invited to attend rounds this morning to talk about next steps.

Since many of his events seem to happen around feedings (a full stomach can make it hard to breathe), the nurse brought up the possibility of going to continuous feedings, instead of “meals” every three hours. They had already stretched out the feeding time from 45 minutes to an hour to allow him to digest his feeds without getting quite so full, but the doctor wasn’t quite ready to jump to continuous yet. For one, it would require an additional special feeding tube, but more importantly, he said the human body is designed to have meals, not continuous feeds so he preferred not to jump to that just yet.

The doctor recommended instead that we increase his caffeine intake. I can’t recall whether I’ve mentioned this before, but yes, you read that right — caffeine. They give caffeine to preemies because it prevents them from going into too deep of a sleep, because their brains are immature and they “forget” to breathe when they sleep too deeply. Since Emmett has gotten bigger (he gained another 28 grams today and is now up to 2 lbs 6 oz), and also because he’s eating more, his initial caffeine dose just might not be cutting it anymore. So he essentially got bumped from a grande to a venti.

The other thing they wanted to look at was his heart. We’ve known he has a murmur, which is really common with preemies and pretty much expected. But the doctor thought we should get a better look at it, so he ordered an echo cardiogram. Thankfully, we got the good news later this afternoon that the murmur is very mild and not likely the culprit of his increased episodes. It should resolve on its own eventually. In some cases the murmur could get worse down the road as his lungs grow, but at least now that we have a baseline, we know what to look for. If in a few weeks he suddenly starts having more episodes they’ll repeat the ECG to check its progress.

The good news is, after increasing his caffeine earlier he had a good rest of the day, so we’re keeping our fingers crossed that’s all we needed. The doctor also started him on a steroid inhaler (Flovent – the same thing I’ve used to treat my asthma) to treat some inflammation in his lungs. They’re hoping a couple weeks on the Flovent will allow us to start weaning him off some of his respiratory support so he can work toward breathing more on his own — an important step in getting him home eventually.

As if that weren’t enough excitement for the day, he also had his first bath! Now that his umbilical stump is gone, it was a prime time to do it. And he was starting to smell a little ripe. 🙂 He wasn’t a big fan of the bath and cried through most of it, but they put him on me for kangaroo care once it was over and we had a really nice session. I held him for almost three hours and his heart rate and oxygen saturation were really good.

After going home and having dinner with D and T, I’m back at the hospital and hoping for an uneventful night.

https://youtu.be/fMX0Lixn3qk

Baby Emmett, NICU

NICU day 17

June 4, 2016August 6, 2018 Keeping up with the Hoffmans

Today was a rough day. Lots of bradys and desats. The doctor said it’s just normal preemie behavior, but I couldn’t ignore the fact that this was out of the ordinary for him. So the nurse suggested we check his blood gases to make sure he was still oxygenating well overall. He was, thankfully, but it’s just so nerve-wracking listening to those alarms all day. He seems to have the most events around his feedings, which the nurses say is normal since we’re pushing a lot of volume on him for his size, and when his stomach is full it can start to crowd his lungs. But since growing is the primary goal, and he’ll outgrow these events as he gets bigger, they feel we’re on the right course of care, especially since he always pulls out of these events on his own. The good news is, he’s up 30 grams to 1020 — or 2 lbs 4 oz — and three nurses mentioned tonight how much bigger and healthier he’s looking.

I’m finding all these events kind of hard to handle. At one point this evening I just had to go home for a few hours. It’s tough. On the one hand, I’m afraid to leave because I don’t want something truly catastrophic to happen while I’m gone. On the other hand, I can’t do anything about it anyway, and the mental break is probably much-needed. Someone once told me to make sure we go home often — after all, we have the world’s most expensive babysitters. I guess that’s true, but it’s certainly easier said than done.

D feels like he may be coming down with a cold, so I’m back here tonight for the third night in a row. I’m tired. At least E seems to be sleeping peacefully now ~~and hasn’t had any events since I got back~~ (never mind – spoke too soon).

Baby Emmett, breastfeeding, NICU

NICU day 15

June 2, 2016August 6, 2018 Keeping up with the Hoffmans

Today was a good day. D spent the night at the hospital last night and said he had way fewer alarms than the last time he roomed in. And today was the same. Fewer alarms are always good! Despite wanting to hold off yesterday on increasing his fortification, the doctor today decided to up it to 26kcal just to see how he did. He did great! He isn’t losing excess water any more, so it seems he’s handling the increase well. And he put on another 20 grams since yesterday, which is awesome.

D and I attended rounds this morning, and there wasn’t a whole lot to report, which is a good thing. We’re in maintenance mode right now. Or as his nurse said to me, “this is the boring part.” I’m totally fine with boring. He’ll have his third and final brain ultrasound on June 18 and will have his eyes checked on June 23rd. Barring any surprises or changes in health, until then they’ll just be fine tuning his breathing assistance and feeding.

Speaking of feeding, I’m finding that I’m getting a little obsessive with pumping output. I’m still a little behind what I should be producing at this stage, but I’m rapidly catching up. The lactation nurse says I should ideally be making 24 oz per day right now and I’m on track to get 21-22 today, up from 19.75 yesterday, which is up from 18.5 the day before. I’m taking fenugreek, drinking mother’s milk tea and trying my best to stay well hydrated. I’m tracking all my sessions on an app that puts everything into graphs and tables for me. I do love me a good graph! Breastfeeding was always something that was so important to me with Theo, and even though I got off to a rough start this time around, I’m trying really hard to make this work. I’ll be the first to admit, I have control issues. And since so much of what we’re dealing with is beyond our control, this is something I feel like I can control, though not without a ton of effort on my part.

E and I had a great kangaroo session today. He did have one brady episode, but aside from that, he was great and we snuggled for more than two and a half hours. I was completely blissed out, and E got down to 21% oxygen and still managed to keep his saturation in the 90s most of the time. In fact, I went home for dinner shortly after our session and came back a few hours later and he was still hanging out happily in his isolette at 21%. It really is amazing what that human contact does for him. And it makes sense. Babies need to be held a lot, and he should still be on the inside – the ultimate hold. It’s just too bad it’s such a process to get him in and out of his isolette and that we can only do it once a day. I’m looking forward to the day I can hold him all the time. I did a lot of babywearing with Theo and I have a feeling I’m probably never going to put E down once I get to take him home.

Baby Emmett, musings, NICU

As long as he’s okay, I’m okay.

June 2, 2016August 6, 2018 Keeping up with the Hoffmans

Predictably, we get asked a lot: “how are you doing?” My answer is usually, “we’re okay.” And it’s true. We’re okay. Not great – this isn’t an ideal situation, no matter how you spin it. But I’m acutely aware of how much worse it could be. And that fearful day I was in labor by myself, I definitely pictured all the worst case scenarios. I was mentally prepared to say goodbye.

But as it turns out, Emmett is a NICU rock star. The doctors and nurses all say so. All of his “setbacks” so far have been minor, and par for the course for a baby born before he even reached the third trimester. So while I can’t help but hold my breath with every desat and feel like my heart stops with every brady, it’s completely unreasonable to expect a micro-preemie to regulate his oxygen levels or heart rate on his own. The doctors have every expectation he’ll grow out of this as he gets bigger and stronger, and by the time his original due date rolls around, he should be a fairly normal infant, just three months behind what his actual age says. Most preemies go by two ages, actual and adjusted, until they’re about two years old, by which point they usually “catch up” to their actual age.

That said, I’m aware that things can change on a dime. As I’ve mentioned multiple times, the NICU mantra is two steps forward, one step back. So far we’re more like three or four steps forward for every step back, but I know that may not always be the case. There may even be days where we are taking more steps back than forward and so I’m trying to temper my optimism with a good deal of caution. People keep telling us how strong we are, but I can’t take credit for that — it’s only because Emmett is so strong. If there comes a day where we take some major steps back, I might not be okay. But until then, I keep repeating: as long as he’s okay, I’m okay.

We can handle anything as long as he’s okay.