desats – Page 2 – Keeping up with the Hoffmans

NICU day 57

July 14, 2016August 7, 2018 Keeping up with the Hoffmans

Today was kind of a rough day. Emmett’s reflux is getting pretty bad. He isn’t spitting up much, but it is backing all the way up into his nose, which creates massive boogers, which causes him to have trouble breathing, which causes him to desat. He’s also clearly in a lot of pain over it, and he grunts and cries a lot. Because of all the desatting, there was some talk about putting him back on caffeine, or possibly increasing his oxygen support again, but after talking with the doctor, he said it’s not really a lung issue; it’s just the reflux. The caffeine would likely make it worse, and the extra oxygen support wouldn’t even really do much good. We may start him on antacids though.

Breastfeeding was a little discouraging today. He was pretty sleepy and didn’t latch as much as he did yesterday, and having him laying sideways made his reflux worse, so after a few minutes we gave up and I held him upright, but shortly after that he needed his nose suctioned because he was having difficulty breathing. It’s just been a draining day. I know the reflux isn’t anything terribly serious; it’s more uncomfortable for him than anything. But it’s just so draining.

On a positive note, weight was up another 62 grams. He is now 5 lbs!

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Baby Emmett, breastfeeding, health & body, NICU

NICU day 56

July 13, 2016August 7, 2018 Keeping up with the Hoffmans

Today had its ups and downs. After yesterday’s conversation with E’s team, I was excited to get to the hospital today and try breastfeeding. When I mentioned it to the nurse this morning, though (a new nurse we’d never had before), she said, “we usually don’t try that with babies who have breathing problems.” I instantly felt disappointed — and a bit defensive. First of all, he’s on 1 liter of oxygen and we were told we could try nursing once he got down to 2. Second of all, he has chronic lung disease, so by her standards we’d never breastfeed. Third, despite the CLD, he’s been doing pretty well lately (and the doctor said he’d hesitate to even label him CLD at this point since he responded so well to the steroids) so her “breathing problems” comment rubbed me the wrong way. Thankfully I was able to talk to the lactation consultant, who was still on board with trying today, and the doctor was in agreement this was the right time too. So the nurse finally agreed.

The nursing went pretty well. He would latch and then fall off, latch and fall off, and then went to sleep after about 20 minutes of this. So I don’t think he really got much and they didn’t bother weighing him before and after to check, but the LC said it was a great effort for his first time, considering how little he still is. Our plan is to do this once a day until he starts to get the hang of it, and then we’ll kick off the official 72 hour breastfeed. Meanwhile, he’s still getting full meals via feeding tube.

Unfortunately, his reflux seems to be bothering him quite a bit today. He was desatting a ton and he just sounds so uncomfortable when he breathes. This evening at one point he even sneezed and milk shot out his nose. It had been over an hour since his last feed so it was all his previous meal that was backed up all the way into his nose. It’s frustrating listening to him snort and grunt and not be able to help him.

This evening I went to barre for the first time since before I gave birth. It was good to be back, but I definitely felt like I hadn’t been there in two months! I am definitely going to be sore tomorrow, but it feels good to work out again. I’m back to my pre-pregnancy weight, but I just feel squishy. I need to build up some muscle tone again. I grabbed a quick beer with my friend after class and then headed back to the hospital for the night. I have a feeling we’re in for a long night with all the snorting and desat alarms.

Weight was up 78 grams tonight, bringing him to 4 lbs 13.5 oz.

Baby Emmett, breastfeeding, NICU

NICU day 55

July 13, 2016August 7, 2018 Keeping up with the Hoffmans

Today was another pretty good day. Emmett’s desats were brief and infrequent, and he only had one brady that I saw, which was also quick. He still gets pretty uncomfortable with the reflux, but he doesn’t seem to be desatting as much as a result, so maybe it’s either improving or he’s learning to deal with it. They increased his feeds to 41 ML and he put on 64 grams tonight, bringing him to 4 lbs 11 oz.

I had a good conversation with E’s nurse, physical therapist and the lactation consultant about breastfeeding today. As I’ve mentioned before, being able to nurse E is so important to me, and I’m nervous because preemies often struggle to breastfeed. Many preemie moms end up having to pump exclusively, or switch to formula, despite their best efforts to nurse. To compound my fears, E isn’t really cueing the way he should for us to start nursing. He’s been scoring 2s and 3s on nursing readiness, when he needs to be getting 1s and 2s. But today his team thought we should give it a try tomorrow anyway. They said sometimes babies don’t exhibit obvious hunger cues on their own, but when faced with an actual boob, they figure it out. So we’ll give it a shot tomorrow. I’m keeping my expectations low, but am glad we’ll at least try. The process will take a nurse, a lactation consultant and a physical therapist (that sounds like the start of a bad joke), so I’m sure there will be plenty of awkwardness. It’s a good thing after birthing two babies I’ve pretty much lost my modesty and dignity, anyway!

Baby Emmett, NICU

NICU day 54

July 11, 2016August 7, 2018 Keeping up with the Hoffmans

Emmett had a good day today. They officially stopped his caffeine and increased his feeds to 39 ML. He put on 12 grams tonight, which still rounds out to 4 lbs 8 oz. His face is starting to look downright chubby, and he’s getting rolls all over. He looks just like a normal chunky baby now, just smaller all over.

D was with him all day since I went into the office, and I just got back to the hospital around 9 p.m. tonight. In the short time I’ve been here he’s only had a few very quick desats and is hanging out in the high 90s most of the time. He’s still pretty grunty and refluxy, but overall it’s pretty boring here, which is fine by me.

Baby Emmett, NICU

NICU day 52

July 9, 2016August 7, 2018 Keeping up with the Hoffmans

Today was overall a pretty good day, although I did find out this morning when I called the hospital that they had to put the cannula back since E was having apneic episodes overnight. They said it’s normal to have to go back and forth a few times before it stays off for good, but it was still a bit of a bummer to hear. I slept in this morning, took care of some stuff around the house and then headed over to the hospital around noon. I’ve been here all day and will stay the night since T is still with the grandparents and D was going to a concert tonight. Tomorrow we’ll get T back. I’ve really missed him since I haven’t seen him since Thursday!

E is still having pretty frequent desats, but they’re quick and he pulls out of them on his own. He’s still bothered by the reflux, and consequently, so am I. It’s just so hard to listen to him grunt and cry and not be able to make it better, and the pain is causing him to hold his breath, which is contributing to his frequent desats. I may try modifying my diet to see if that helps. I read that cutting out dairy, acidic foods, spicy foods and reducing caffeine can help. Our kangaroo time got cut short today because he was so congested that they had to put him back in his crib and suctioned out about a million boogers that were a result of all the milk backing up into his nose. Poor kid. But at least now I can pick him up when he gets fussy, and being held upright seems to help with the reflux.

Emmett is continuing to grow at an impressive pace. He packed on 102 grams last night and an additional 76 tonight. He’s now 4 lbs 8 oz!

Baby Emmett, NICU

NICU day 51

July 9, 2016August 7, 2018 Keeping up with the Hoffmans

Last night I went to the Dixie Chicks concert with a couple friends. It was a much-needed girls’ night out, and I was too tired to write by the time I got home. But now it’s 4 am and I’m up for my nightly pumping session so figured I’d get a quick update out while I’m up. Because yesterday was actually a pretty big day… Emmett is off oxygen!

They decided to remove his cannula yesterday morning, despite the fact he’s still having desats from the reflux. Even when they periodically turned up his oxygen through the desats it didn’t seem to make any difference, so they thought they’d go ahead and give him a try. Worse case scenario they put it back. As you can see in the picture below, they left the pads taped to his cheeks in case they needed to put it back. But so far he’s doing great. No increase in desats — maybe possibly even a teeny improvement, if anything. Maybe he’s just more comfortable without something on his face and up his nose, and it’s possible he’s getting less air in his belly now. They warned us that if he were going to need it back, they would either know right away due to an increase in events, or they would know after a day or so on it because he would start showing signs of fatigue from doing too much on his own. Fingers crossed he continued to do well through the night when I call in the morning for an update!

Baby Emmett, NICU

NICU day 50

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

It’s been kind of a rough day. Even just typing out “day 50” sends a new wave of exhaustion through my body. I’m so tired. Emmett seems to have very suddenly developed a case of severe reflux and it’s been causing us a lot of issues. It started yesterday evening with him spitting up a couple times (out of character for him), escalated to a fairly traumatic spit up/choking/brady/desat episode late last night, and now all day today he’s been having desat events and struggling to breathe at times because he’s refluxing up into his mouth and nose. They had recently increased his feeds (he’s up to 36 ML per feed now) and think that could be what’s causing the reflux, but he’s been on full feeds for several weeks now, so the increase shouldn’t make that big of a difference — they’re just pacing his growth. Either way they don’t want to back off on the feeds since growing is still our primary focus. They’ve talked about possibly lowering his caffeine since he seems to be growing out of the apnea, and caffeine can exacerbate reflux. In the meantime, they’ve raised the head of his bed so he’s at a bit of an incline, and for now we wait and see if he gets better or worse. I held him upright this evening during one of his feeds and that seemed to help some.

To add insult to injury, he had another eye exam this afternoon. The same horrible ROP check he had two weeks ago. Unfortunately, this time he is presenting with stage 1 ROP. As I mentioned before, it’s rated from 1-5, with 5 being the worst. The good news is, the ophthalmologist said 90% of babies grow out of stage 1. About 75% will progress to stage 2 first, but will still be among that 90% and grow out of it. IF it gets to stage 3, we start discussing treatment options, but I’m hoping it doesn’t come to that.

On a positive note, he gained 62 grams tonight, bringing him to 4 lbs 3 oz.

Baby Emmett, NICU

NICU day 44

July 1, 2016August 7, 2018 Keeping up with the Hoffmans

Emmett reached an exciting milestone today: he is now officially double his birthweight, at 3 lbs 12 oz. He had another pretty good day today. Still a few more events than I would like, but nothing like he was a few days ago. The team is happy enough that they want to turn him down to 2 liters of oxygen flow tomorrow. It makes me nervous, but they think he can handle it.

There was also some talk today about moving him to a crib soon, which is huge. They have turned down the temperature in his incubator and have been swaddling him in a blanket. This was mostly to keep him from pulling out his feeding tube, but it’s good to see he is getting better at regulating his temperature.

Today was my first day working from the hospital and it went well. It made the day go by faster and I was actually pretty productive, so I’m feeling good about my decision to go back and save my leave for when E comes home. I still have every reason to believe that will be sometime mid-August, but it’s crazy to see how much progress E is making and how the team is plowing ahead with next steps. It’s weird – I’m actually kind of scared of the progress. For one, I’m afraid of getting too comfortable again. I think what made the last week’s setback so hard was the fact that he had been doing so well the week before. But two, I’m honestly afraid to take him home. The NICU can keep even a very sick baby alive. Can I? I remember when T was a newborn I would just stare at him while he slept, terrified he would stop breathing. And he was healthy. With E’s prematurity and the CLD, I’m going to be a basket case. I may need more weaning from the monitors than E does. I kind of want to get one of those Owlet monitors, but D thinks I’ll drive myself even more crazy.

I’m home tonight and did some cleaning and organizing of the nursery this evening. I unpacked T’s old newborn clothes and hung them in E’s closet. Seeing those little clothes (which look huge, compared to Emmett’s size) brought back a ton of memories. As scared as I am to bring him home, it’s starting to feel more real and I’m also getting excited.

Baby Emmett, NICU

NICU day 43

July 1, 2016August 7, 2018 Keeping up with the Hoffmans

Today I went back to work, which was surreal. I was simultaneously excited about and dreading going back today, but the day turned out to be really good. Everyone was happy to see me and I was greeted with a “welcome back” sign and donuts on my desk when I arrived. I stayed busy digging out of six weeks’ worth of emails and getting caught up on the status of my various projects, and the day went by pretty quickly. Tomorrow I’ll work from the hospital and then we head into a long weekend. I highly recommend starting mid-week for anyone returning from maternity leave. I did this with Theo too, and it just makes the transition so much more manageable. I will say, as unnatural as it felt to be in the office while my baby was in the hospital, it wasn’t as hard as leaving Theo at daycare for the first time when he was a baby. We’ll see how hard it is to go back after I take my “real” maternity leave when E comes home. But for now, going back to the office was a welcome break from all the beeps and alarms of the NICU.

D spent most of the day with Emmett today and said he had a good day. They turned his oxygen flow down to 3 liters this morning and he seems to be handling the change pretty well. Still having a few desats but not too many. His weight was up 11 grams today, which still rounds out to 3 lbs 10 oz.

Baby Emmett, NICU

NICU day 41

June 28, 2016August 7, 2018 Keeping up with the Hoffmans

Tomorrow Emmett is six weeks old. And on Thursday I return to work after taking my six weeks of short-term disability. The decision to return now was difficult, but I wanted to save the rest of my leave for when E comes home and I can have a somewhat normal maternity leave. I have mixed feelings about going back. On the one hand, it will be nice to feel like I’m using my brain for something other than medical terminology. On the other hand, it will be surreal to go back, knowing E is still in the hospital. Thankfully my employer has been very accommodating of our situation and is allowing me to work remotely from the hospital part of the time. Even if I can’t do anything for Emmett here, just being here makes me feel better, and studies have shown that NICU babies thrive more simply by having their parents present. D’s work has been very flexible as well, so on the days I go into the office, he will work from the hospital.

Today was a relatively uneventful day. E is still having a fair number of episodes, but fewer than he was just a few days ago. It will take a few more days for the prednisolone to have any effect on his lungs, if it will help at all. I’m still processing the CLD diagnosis. This could be something he overcomes with little to no lingering issues (children’s lungs can actually regenerate themselves), or this may cause him issues for the rest of his life. We just don’t know, and we won’t know for quite some time. For a planner like me, the unknown is one of the hardest parts about this whole situation.

Our little troublemaker is still pulling out his feeding tube every opportunity he gets. The nurses keep taping it down in different ways, hoping to secure it from his grabby fingers, but their efforts have been largely unsuccessful and have mostly just resulted in layers upon layers of tape on his face. His nurse this afternoon decided to take all the tape off and start over. So far so good, and bonus – I got a chance to snap a photo of his face without his cannula or feeding tube and only a little bit of tape. I so rarely get to see his naked face! He’s got his big brother’s “stink eye” look down pat. And our little chunk even has a double chin now. He’s up to 3 lbs 9 oz.