micropreemie – Page 7 – Keeping up with the Hoffmans

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, breastfeeding, NICU

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, NICU

NICU day 34

June 21, 2016August 7, 2018 Keeping up with the Hoffmans

Another pretty good day, but we were still having a higher number of desats overnight and through the morning. The afternoon seemed better, so hopefully we’re headed for another good streak. The doctor decided to increase his caffeine again to see if that helps. Since he’s been gaining weight beautifully lately it’s possible he just needs a higher dose now. Despite the desats, the doctor decided he’s ready to step down on the flow in his cannula, so we’re going from 5 liters to 4 starting tomorrow. They also bumped his feeds up to 27ML.

D had a late soccer game tonight so we decided, for the first time since E was born, that neither of us would stay at the hospital overnight. So I’m home with T now and when D gets done with soccer he’ll just come home too. It just didn’t make a ton of sense for him to go to the hospital when he wouldn’t get there until close to midnight. It makes me hyperventilate a little when I think too hard about neither of us being there, but most of the NICU parents don’t stay there every night, and it’ll probably be good for us to actually stay together every now and then, anyway.

I called the nurse to check on E tonight and found out he gained another 20 grams, so he’s up to 3 lbs 1 oz. Unfortunately, the nurse said he spit up most of his evening feed, which I hate thinking about after our experience with him spitting up the other night and desatting. Hopefully I can actually get some sleep tonight.

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, breastfeeding, NICU

NICU day 32

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

Today is Father’s Day. We didn’t do much. D spent the night at the hospital last night, and then I brought T to meet him and we all had lunch together in the hospital cafeteria. Fancy schmancy. D took Theo home to nap and I stayed at the hospital for an afternoon of kangaroo care, before going home for dinner (reheated casserole!) and then back to the hospital after tucking T into bed.

Today’s kangaroo care was great! We got to try “nuzzling” for the first time since the nurse thought E was showing signs he may be interested in breastfeeding soon. Basically, instead of holding him upright and parallel against me, I held him in the crook of my arm as if I were nursing him, but just followed his lead. He didn’t really know what to do just yet (nursing instincts don’t typically kick in until around week 32), but he did a little rooting and gave me the occasional lick. It may not sound terribly significant, but it was wonderful. We’re still a couple weeks away from him really being able to do much more than that, but it was a good step in the right direction. At the very least it was great to be able to hold him like one would normally hold a baby and to look down at his face. Usually during kangaroo care he’s right under my chin, so I can only see him if I really crane my head back — or use the selfie mode on my phone. 🙂

Today was otherwise pretty uneventful, which is always good. I don’t think he had any bradys today and only a few minor desats. Weight was unchanged, but he’s had several days of sizable gains so that’s not unreasonable.

Another day down. Some days I feel like a prisoner etching tally marks into my cell wall.

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 30

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

It’s been kind of a hectic evening in the NICU. Emmett is fine, but there was a delivery that required almost all hands on deck around 10 p.m. (I’m sure that was me a month ago!), and it’s been chaos and hustling and loud beeps and alarms ever since. I had to close my door because I don’t really want to know what’s going on, in case it’s not good. Feeling really thankful for private rooms right now. My heart goes out to those parents because I know just how scared they must be.

A byproduct of this dramatic delivery is that Emmett’s nurse got called away and we got temporarily stuck with the roving nurse that just fills in on people’s breaks. She didn’t position him very well for his feeding (and didn’t even realize his feeding tube was wrapped around his neck until I pointed it out), and then shortly after she left, Emmett started spitting up while on his back and went into a pretty big desat. No one even came to check on him until I had to go flag down another nurse. No clue where the roving nurse was. E seems to be comfortable now, but I’m spent. People keep telling us to get away and take some time for ourselves, but then stuff like this happens and I wonder how long he would have been spitting up and desatting before someone came to help him? I know this is a very good hospital and I’m sure the NICU staff know what they’re doing, but there’s just no substitute for having a parent in the room with him.

Other than an eventful evening, today was actually pretty good overall. Emmett had his feeding tube moved from this mouth to his nose again, which just looks so much more comfortable, lets us see more of his face, and allows him to get his hands to his mouth like normal babies. I think we may have a thumb sucker! He put on another 30 grams last night, and 20 more tonight, so he’s now up to 2 lbs 13 oz. They’ve also increased his feeds to 25ML.

Despite the fact that he’s doing great on five liters of flow in his cannula, the doctor decided to give him another day to rest and grow before going to four. I ran into the doctor in the kitchenette this evening and he said all the respiratory therapists are basically begging him to let them lower the flow, though, because E is such a rock star and can handle it. He probably can handle it, but there’s really no rush. Even if we weaned all the way off respiratory support way ahead of schedule, it’s not like we’re going home next week. And we’re still 2-3 weeks away from E being developmentally ready to breastfeed, which would be the only other reason to push for less flow. I’m totally fine with this doctor’s more conservative approach.

It’s after midnight and I’m exhausted. Things are still fairly chaotic here but I’m going to attempt to get some sleep anyway.

Baby Emmett, NICU

NICU day 29

June 16, 2016August 7, 2018 Keeping up with the Hoffmans

Today was a pretty good day. Emmett went from 6 liters of pressure to 5 in his nasal cannula. He handled the transition pretty well. He had a few more episodes today, but the team said that was to be expected.

We’re also down to three hours between cares again instead of four. Three is the standard; they had only gone to four before because they were worried about his weight gain and wanted him to rest more. But even though he has been going up and down on his weight over the last few days, the overall trend is still upward, so they were comfortable going back to three. And that makes holding him between cares easier on me!

Onto day 30…

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