micropreemie – Page 6 – Keeping up with the Hoffmans

Baby Emmett, friends & family, NICU, toddlerhood

NICU day 47

July 4, 2016August 7, 2018 Keeping up with the Hoffmans

Today was a good day. D spent the night at the hospital last night and said Emmett had one of the best nights to date. This morning we took Theo to a 4th of July parade, and then I went back to the hospital so I could hold E this afternoon. When I got there, not only was E swaddled in his isolette, but he was wearing clothes! His temperature on his isolette was turned down to 26C, and the nurse gave me the great news that he would be moving to a crib tomorrow! They will also be turning his oxygen down to 1 liter, which is officially low-flow. Lots of great progress.

I didn’t get a lot of time with E today. Just the three hours I held him, and then I left the hospital to meet D and T at our friends’ house for more Fourth festivities. As hard as it was to have so little time with E today, I know he doesn’t consciously miss me while I’m gone, where T definitely does, so it was important to spend this holiday with him. It was good to see friends and we lit off a few fireworks after dark and kept T up WAY past his bedtime. So worth it to see the sheer elation on his face over the fireworks. D went back to the hospital for the night again and I came home with T to tuck him into bed. And then I started a load of laundry, including preemie clothes (!!) since we can start dressing him once he’s in the crib. The hospital will provide us with clothes if we want, but I figure we might as well use some of the preemie clothes we got as gifts since he probably won’t fit in them for long. He gained another 36 grams tonight, bringing him to 3 lbs 15 oz. There’s a very good chance we’ll crack 4 lbs tomorrow!

Baby Emmett, health & body, loss, NICU

NICU day 46

July 3, 2016August 7, 2018 Keeping up with the Hoffmans

One year ago, we got the news 13 weeks into our pregnancy that our baby no longer had a heartbeat. And while I’m grateful for how well E is doing, I can’t help but feel sad about the rough journey we’ve had to this point, and still have ahead of us. Four pregnancies: two miscarriages; one perfect, textbook pregnancy; one premature birth. My OB doesn’t think my preterm labor had anything to do with our losses, but she doesn’t know what caused it either, and we’ll probably never know. She did say if we were to get pregnant again I’d have to be on progesterone injections throughout the pregnancy — possibly in addition to the drug cocktail I was on this time around just to keep from miscarrying. Even then, there are no guarantees. Yeah, no thanks. My body hates babies. We’re done.

Interestingly, we have plans for the Fourth tomorrow with the same group of friends, at the same house we were at this time last year, after just learning we had lost our baby. I was still carrying my baby because I couldn’t get in for a D&C until the following week because of the holiday weekend. I was still wearing maternity pants, with a flowy top to hide a small baby bump. Many people at the party didn’t know we had even been pregnant, and I didn’t feel like talking about it. They had no idea the multiple glasses of wine I drank that night were the first I’d had in three months and that I so desperately wanted to escape the nightmare I was living yet again. Now here we are, one year later, living a different nightmare. It’s more bearable this time because our baby is alive. But it’s a lot more draining because it’s so drawn out and there are still so many unknowns.

But I should try to focus on the positives. Emmett is really doing very well, all things considered. The CLD is still haunting me because we don’t know how severely he’ll be impacted, but for the time being, he’s making forward progress. He’s continuing to gain weight. He’s still having occasional events but they aren’t too frequent or severe. He handled the drop to 2 liters of oxygen like a champ, and they’re talking about possibly dropping him to 1 tomorrow. He put on 28 grams today, bringing him to 3 lbs 14 oz.

His heart rate has been jumping up frequently these last couple days, but that seems to only happen when he’s agitated. The higher heart rate episodes seem to have coincided with when they started swaddling him – perhaps he just prefers having his arms free. And he has shown us that despite his lung issues, he can let out an impressive cry when he wants us to know he’s unhappy!

Baby Emmett, breastfeeding, NICU

NICU day 45

July 2, 2016August 7, 2018 Keeping up with the Hoffmans

We had another good day. Relatively uneventful in itself, though we are on the cusp of some pretty big milestones and I had some good conversations with the nurse about our plan of attack.

As far as today goes, the biggest news of the day is that they turned his oxygen flow down to 2 liters. So far he’s handling the change very well and doesn’t seem to even notice the difference. His weight was up another 11 grams this evening, bringing him to 3 lbs 13 oz. In just two weeks he has put on a full pound, which is fantastic.

As for the big stuff on the horizon … we learned today that in about another week he could both be in a crib, and be breastfeeding. We knew these were possibly coming soon, but today we got some more specifics on how the transition for each works.

For the crib, the first criterion is size. It usually happens around 1800-2000 grams, but 1600 grams is the minimum weight. He’s currently 1728 grams. The second and more important factor is temperature. Currently his isolette is set at 27º Celsius (80.6º Fahrenheit) and it needs to be able to maintain his body temperature for 24 hours at 23-25º C (73.4-77º F). They’ve already started dropping the temperature on his isolette a little each day, so as long as he keeps handling the change without a drop in body temperature, they think he’s on track to be in a crib in about a week. This is particularly exciting because then we can put clothes on him and can pick him up whenever we want, instead of having to schedule one long hold each day.

For breastfeeding, sometime around week 33 or 34 (he’ll be 33 weeks on Monday), they’ll start scoring him on a scale of 1-4 every time they come in for cares. 1 means he’s awake and showing strong hunger cues like sucking on his hands or rooting. 2 means he wakes up when he’s handled and shows some hunger cues. 3 means he’s briefly alert with cares but shows no hunger cues, and 4 means he sleeps through cares with no hunger cues. If he goes 24 hours with all 1s and 2s then they start the “72 hour breastfeed” which is like breastfeeding bootcamp. During this time they want me around as much as possible so I can nurse him whenever he’s hungry. After those 72 hours they are fine mixing breast and bottle, but those first 72 hours are critical to breastfeeding success. Since it will take a while before he’s eating efficiently they will weigh him before and after each feed, subtract the amount he’s taken in via nursing and make up the difference with the tube. Once he’s getting 80% of his feeds via breast or bottle, they will remove his feeding tube. It can be a long process and we’ve been told this could very well be one of the things that keeps us here until close to his original due date as he learns to work for his food.

So that’s the plan. I love me a good plan.

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 42

June 29, 2016August 7, 2018 Keeping up with the Hoffmans

It’s hard to believe it’s already been six weeks. Emmett has really grown a lot since then. He was up another 16 grams tonight, bringing him to 3 lbs 10 oz. They bumped his feeds up one more ML, so he’s now on 31 ML feeds. Until we know more about how the CLD is affecting him, growth is still our biggest priority.

We had a pretty good day today, with much fewer events than the last week. I didn’t think the prednisolone was supposed to start working for a couple more days – but whether it’s the medication or just him having a good day, I’ll take it.

Not a lot else to report today, which is good. Boring days are always good days. Tomorrow I head back to work, which is surreal. Really hoping this provides a welcome distraction and makes the time go by faster until we can bring Emmett home. Feeling excited, scared, nervous and a whole bunch of other emotions.

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.

Baby Emmett, NICU

NICU day 40

June 27, 2016August 7, 2018 Keeping up with the Hoffmans

Emmett had a pretty rough night last night. D was with him and said his alarms were going off all night. This morning we met with the doctor who told us Emmett has chronic lung disease, or bronchopulmonary dysplasia. He turned his oxygen flow back up to 4 liters and ordered a chest x-ray to be sure, which confirmed the diagnosis. It was upsetting to hear the word chronic. Contrary to what we’ve been told all along, this may not be something he simply grows out of. The doctor recommended putting him on a 10-day dose of prednisolone and we agreed. The other options were to put him on a diuretic to drain the fluid from his lungs, or to turn his oxygen flow back up even higher — but that would reverse a lot of the progress we’ve made thus far on weaning his respiratory support and could put off breastfeeding even longer. So we’re hoping the prednisolone helps, but it’s very possible this may be an ongoing issue for him and the doctor said in some cases babies with CLD even go home on oxygen. I’m feeling pretty defeated.

On a positive note, his red blood cell count was good today so he got to come off the Epo. We had a good kangaroo session today with very few events and he seems to be doing well this evening. He’s back to 21% oxygen and satting in the high 90s for the most part, with the occasional brief desat. He lost 10 grams tonight, which isn’t super surprising after several days of high gains. He also missed at least part of his 5:30 p.m. feeding because he pulled his feeding tube out yet again when I went home for dinner, and the nurse didn’t realize it until she went to check on him and the tube was out and there was milk all over him and his bed. Something tells me this kid is going to be a trouble maker.

Baby Emmett, NICU

NICU day 39

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

Today was relatively uneventful – a welcome change from the past couple days. Emmett is still having a higher number of episodes, but I think it’s only obvious in comparison to the good week he had last week. I still stare down the monitors, silently willing the numbers to go back up every time he has a brady or desat, but as scary as those events are, he always pulls out on his own.

Most notable events of the day: they turned his oxygen flow down to 3 liters (though he’s been hanging out around 24% to compensate) and he’s put on another 20 grams. He’s 1600 grams even currently, which still rounds out to around 3 lbs 8 oz. He pulled out his feeding tube yet again overnight. This time he at least had the sense to pull it out completely (all 17 cm) so it didn’t cause him any reactions. The nurse simply went in to start his feed this morning and his gavage was just laying beside him. Stinker. They are having to get creative in their taping tactics to keep it in place. I can only imagine this will become more of an issue the bigger, stronger and handsier he gets.

Kangaroo care went well today. He started out nuzzling but after a while he seemed uncomfortable and grunty so I pulled him upright into the traditional kangaroo position, and he passed out. It was hard to put him back, he seemed so content. It’s nice that he’s finally feeling sturdy enough that I’m comfortable repositioning him on my own without having to call a nurse in to help. What a difference from just a few weeks ago when it took two nurses just to pull him out of his isolette and put him on me!

FullSizeRender (2) — The face of contentment.

Baby Emmett, NICU

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