BPD – Keeping up with the Hoffmans

Baby Emmett, breastfeeding, prematurity, toddlerhood

Super Emmett

September 21, 2017August 6, 2018 Keeping up with the Hoffmans

It’s been a while since I’ve given an Emmett update. This week he turned 16 months old; 13 adjusted. Last month we celebrated the anniversary of his homecoming – in lieu of celebrating his birthday in May. We just weren’t quite ready for a birthday party when he turned a year. For one, he wasn’t developmentally ready for cake and what’s a first birthday without a baby smearing himself with cake? But also, we weren’t quite emotionally ready for celebration. Honestly, the day Emmett was born was the worst day of my life. It’s a pretty shitty way to feel and I’ve definitely had my fair share of guilt over those feelings.

That said, his “homecoming-iversary” party turned out to be the perfect way to celebrate E’s unique journey, and I threw myself into the details of the planning, giving him the Pinterest-worthy party he deserved. I know he didn’t care about the details, but I love that kind of thing and it was meaningful for me to pull off “the perfect party.” We went with a superhero theme since is our super hero, after all! Here are some pictures from the day:

In other updates, he’s now almost 19 lbs and 29 inches long, which puts him in the adjusted 18th percentile for weight and 32nd for height. For his actual age he’s in the 3rd percentile for both. But he’s FINALLY on the charts for his actual age!!! This is huge, since a few months ago he was in the 3rd percentile for his adjusted age and nowhere close to the charts for his actual age. We’ve been seeing a nutritionist and working to add more calories to his diet and it’s great to finally see it paying off. His lungs have been in relatively good shape lately too. He still breathes hard, but he hasn’t been wheezing, and we haven’t had to use his inhalers for a few weeks. Of course, winter is coming. I’m bracing myself for the onslaught of colds sure to hit our household, knowing every cold and illness usually goes straight to his chest. I need to find out if we’re still eligible to receive the Synagis shot to protect him against RSV this year.

In other health news, we’re facing ear tubes, adenoid removal and possible tonsilectomy this fall. At a recent checkup, the pediatrician noticed his tonsils were huge. She referred us to a pediatric ENT, who confirmed — on a scale of 1-4 his tonsils were a 4 and are actually touching. He also determined his adenoids were huge and in need of removal, and his frequent ear infections made him a good candidate for ear tubes. We’ve been down the ear tube path with Theo before (in fact, we’re seeing the same ENT at Children’s), but the adenoids and tonsils are uncharted territory for us. The ENT explained that they don’t typically remove tonsils on kids under 3, but ordered a sleep study to see if the tonsils are causing any complications like apnea. If so, the benefits would outweigh the risks and we’ll go ahead and remove at the same time they do ear tubes and adenoids so he’ll only have to be put under once. We completed the sleep study three weeks ago and are still waiting on the results (it can take 3-4 weeks to analyze everything). The sleep study was not fun. They had him hooked up to a bazillion monitors, which he of course, hated. And I got to spend the night on a couch in the hospital with him, which opened the floodgates with my PTSD. It felt very much like being back in the NICU, even though logically, I understood we were there under much different circumstances.

Speaking of health stuff, I recently looked back at my calendar and tallied all the various appointments we’ve had this past year. Let’s just say I’m thankful for a flexible work schedule and an understanding employer, in addition to a husband with the same flexibility and understanding at work. I’ve taken E to most appointments, but D has taken him to several as well.

27 occupational therapy
3 physical therapy
3 feeding specialist
7 lactation
3 nutrition
1 weight check
1 swallow study
4 pulmonologist
1 echocardiogram
1 public health
5 Synagis shots
5 well-child
13 sick-child
1 ophthalmology
1 dentist
1 otolaryngology
1 sleep study consultation
1 sleep study
2 infant high risk clinic

Regarding that last one – the infant high risk clinic – we saw them once when he was around six months adjusted, and again at a year adjusted. It’s a clinic run by the UW and they follow preemies and other high-risk infants through the first few years of life to assess factors like developmental/neurological delays/disorders, hearing, growth, etc. I was really nervous for this last appointment since they would be formally evaluating him for any delays and I’m happy to report passed with flying colors! They use the Bayley scale to assess development, and told us anything over an 84 is considered normal. He scored a 105 for cognitive and 89 for physical development! And they were able to rule out both cerebral palsy and autism, both of which are common among preemies. Such a relief. He does have a slight speech delay, which they attribute to his frequent ear infections (they also noted he has some mild, likely reversible, hearing loss from the fluid in his ears). Theo also didn’t talk much until he was almost two, and now he never shuts up. So I’m not too concerned about the speech delay yet.

It’s been a really emotionally challenging year, but he’s worth it all. I’m hoping this coming year brings us fewer appointments and health issues, and we can just sit back and marvel at how fast he’s growing up – and maybe actually take the time to stop and enjoy it. I do worry that I’ve spent his entire life willing him to grow – and I haven’t taken the time to enjoy the fact that he’ll never be as little as he is today. He’s now walking, sleeping all night, eating real food, and drinking cow’s milk – which means I am DONE pumping! I’m still nursing morning and night and plan to do so a while longer like I did with Theo. I remember those last few months nursing Theo were my favorite part of my breastfeeding journey last time – when I wasn’t concerned about supply or feeding schedules and we were just sort of in it for the extra credit at that point. He still doesn’t have a lot of hair, but I’m noticing it’s starting to grow in curly in the back like Theo’s was at this age. He’s definitely starting to look less like a baby and more like a toddler. We couldn’t be more proud of our cute little superhero.

I’ll wrap this long post up with some more pictures from the last few months.

Baby Emmett, breastfeeding, monthly updates

9 months old

March 6, 2017August 6, 2018 Keeping up with the Hoffmans

Can we really be getting that close to a year old? Time is so non-linear when your baby has two ages and you vacillate between viewing him as a nine month-old (because that’s what he is, and he’s been in your life for nine months) and a six month-old (because he looks and acts like a six month-old and you’ve only had him home for six months). I will say, I’ve started just telling people his actual age when they ask, as I’m learning most people have no clue what a six or a nine month-old look like. Sometimes I’ll get a comment about how little he is (usually from other parents of young children), at which point I’ll say he’s a preemie and has some catching up to do. Sometimes this leads to a lot of questions I may or may not feel like answering, but a few times I’ve ended up connecting with other parents of preemies. In fact, just last week I met a woman whose baby was in the same NICU at the same time as Emmett! Small world.

Here’s what’s happening at nine months:

Adjusted age: 6 months.

Stats: 14.6 lbs and 25.75 inches. Not much growth since last month. It may just be his continued illnesses and increased activity, but we’ve started seeing a pulmonologist for his wheezing and she referred us to a nutritionist because she wants him to start packing on the pounds. His lungs will grow and get stronger as he does.

Milestones: Eating solid foods! So far we’ve tried sweet potatoes, avocados, apples, bananas and peas. He still pushes his tongue out more than he swallows, and so more ends up on his shirt and tray than in his stomach most nights, but his OT feels good about how he’s doing, and the important thing is that he enjoys it. Right now solid foods are less about nutrition (he still gets everything he needs from breastmilk), and more about introducing flavors and textures. He is also so close to crawling, but hasn’t quite made any forward progress. He gets up on his hands and knees and rocks back and forth, and sometimes goes backwards, so I’m sure it’ll happen any day now. Update: I had drafted this post last night, and he officially made his first forward crawl tonight.

Sleeping: We’re dealing with a little bit of a regression. After getting used to just one wakeup per night, he’s now usually up two to three times per night. But he’s been nursing less during the day (more on that below) and I feel like his middle of the night feedings are his most productive, so I’ll take any opportunity to get some extra calories in him. As tired as I am, I know it’s temporary. Theo was the world’s worst sleeper as a baby and he’s great now. I’ll sleep again someday. For now, coffee.

Eating: Solid foods once per day (at dinnertime so we can all eat as a family), four to five 4-ounce bottles at daycare (fortified with NeoSure), and nursing whenever we’re home together. As I mentioned earlier, he’s been nursing less, though. He’ll often latch for 3-4 minutes and then pop off and fight me if I try to relatch him. I think it’s mostly an issue of him being easily distracted, as he does this on the bottle too, but will focus and eat better if we go into a quiet room. He also eats really well when he’s sleepy and relaxed. The rest of the time, he’s got a major case of FOMO (fear of missing out). I’m hoping this is a quick phase, because it’s incredibly frustrating, and my supply is already struggling and it worries me when he goes several feeds in a row without eating much.

Personality: I sound like a broken record, but he’s just so HAPPY. Smiles at everyone and is incredibly social. So far no stranger danger, though I know that often kicks in around this time. He also loves other babies, which is funny because I didn’t think they typically noticed other babies at this stage. Maybe it’s because he’s used to being in daycare with other babies, but when we get together with friends and we put the babies on the floor together he stares and smiles at the other babies — and then usually tries to grab their face.

Likes: Being tossed in the air. I get the biggest belly laughs out of him when I toss him up. Also laughs and laughs at big brother, sometimes when he isn’t even trying to be funny. Which causes Theo to whine and tell us to make baby Emmett stop laughing at him.

Dislikes: His inhalers. As I mentioned earlier, we’re seeing a pulmonologist to get his wheezing and coughing under control. He is now on a twice daily steroid inhaler, and an albuterol rescue inhaler as needed. They come with a special mask that goes over his mouth and nose so you can puff it in and he is not a fan. Especially since you have to hold it over his face until he takes 5-6 breaths… and then repeat. Sometimes if I catch him in a good mood and talk to him in a high squeaky voice while I give it to him I can avoid a freakout, but most of the time he screams and cries and tries to fight us.

Mama: I’m … surviving, I guess. As I mentioned last month, I’m feeling pretty overwhelmed, like I’m failing in all areas of my life. It hasn’t really gotten any better, but it hasn’t gotten any worse, either. I’m madly in love with this little man but also feel like I have a hard time just enjoying him because I’m always worried and stressed. I’m sure the stress is one factor in my diminishing milk supply, which in turn also makes me stress out (it’s a vicious cycle). Thankfully we still have a huge freezer stash. He’s getting about half fresh and half frozen at daycare because I can’t pump enough in a day to send with him the next day. At one point I had an oversupply and managed to completely fill two freezers with milk. We’re blowing through that at an alarming rate, though. At some point he’ll be eating more solids and drinking less milk, but at the rate we’re going, we’ll probably have to supplement with formula at some point, unless I can increase my supply. I’m pumping as much as I possibly can during the workday, nursing as much as possible at home, taking fenugreek, eating oatmeal and trying to up my water intake, but it’s not making much of a difference. Not that formula is the end of the world (and we’re already fortifying anyway), but it makes me sad sometimes that we don’t have the (relatively) easy breastfeeding relationship that Theo and I had. The fact that this is our last baby and so much of it hasn’t gone how I’d planned makes me mourn that aspect so much more.

Whew. Okay. As consolation for making it through my therapy session, here are some cute baby pictures.

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Baby Emmett, monthly updates

8 months old

January 25, 2017August 6, 2018 Keeping up with the Hoffmans

How do we have an eight month-old? It truly does not seem possible. We’ve had kind of a rough month, with Emmett being constantly sick. In the past six weeks he’s had bronchiolitis, three ear infections, and been to the doctor seven (yes, seven) times. He’s been tested for RSV, influenza and pertussis (whooping cough). All negative, thankfully, though it doesn’t change the fact he was wheezing for weeks on end and coughing so hard and for so long at night I thought for sure he would stop breathing and pass out. Thankfully he seems to finally be on the mend, though the pediatrician said this may be our new normal when it comes to colds for his first couple years, thanks to his premature lungs. I’ll admit, I’ve been having a really hard time with this. I’ve been saying lately that he seems like such a normal baby that it’s almost easy to forget everything he’s been through. But then something that should be as benign as a cold comes along and completely upends our lives, reminding us that no, he is not a normal baby. On multiple occasions I’ve cried myself to sleep, listening to him cough and wheeze. Mad at the universe for dealing us this hand. Scared for his future and what else could be in store health-wise. Overcome with emotion because of how much I love him and just want him to be okay.

I will say, throughout all this, he continues to be the happiest baby I’ve ever met. It’s almost as if he understands he’s been through worse and is taking it all in stride. I joke that it’s because he feels bad for all he’s put us through, so the least he can do is be a happy baby. Whatever the case, he’s pretty amazing.

Okay, let’s get to it. Here’s what’s happening with the Amazing Emmett at eight months:

Adjusted age: 5 months

Stats: 14 lbs and 25.5 inches

Milestones: Finally good at being on his tummy and holding himself up, and really trying to crawl! I really wouldn’t be surprised if he’s crawling by next monthly update. When he’s on his back he uses his legs to scoot himself backwards — kind of reverse crawling. Definitely wants to move.

Sleeping: Still usually up once a night — sometimes twice, but sometimes none. Naps are getting longer and more consistent, but I still can’t get him to nap in his crib, so he mostly naps in his swing at home. They manage to get him to nap in a crib at daycare, but he also takes much shorter naps there, so I’m okay with the swing for now at home.

Eating: Still exclusively nursing at home and still getting four to five 3.5-4 oz bottles a day at daycare. We’re still fortifying bottles of pumped milk with NeoSure for extra calories, but I’m planning to ask his doctor at his next visit whether we can stop fortifying or at least try another type of formula, as this stuff really wreaks havoc on his digestive system. Lately he’s been going 4-5 days without pooping followed by 2-3 days of basically making up for lost time. And he’s so gassy! He hasn’t gained much weight (and no length) in the past month, though, so I’m not hopeful we’ll get the green light to stop fortifying, even thought I’m sure the slow growth has been due to illness. His OT thinks he’s ready to try solid food so we may start those in another week or so.

Personality: Happy, happy happy. He’s lately developed a habit of screeching — and if you only heard him you’d think he was in pain or upset — but if you look over at him he’s got a huge smile on his face. I think he’s just experimenting with his voice.

Likes: Big brother. I mean, isn’t mom supposed to be a baby’s favorite person in the world? Pretty sure I’m in second place, behind a three year-old. But I’m okay with that, because it’s so cute. And the adoration is mutual. These two could not love each other more, and I hope it always stays that way.

Dislikes: Still pretty much the only thing he hates is when we have to suck the snot out of his nose. But even then, he’s totally fine afterward.

Mama: I guess I already poured out the emotional chaos I’m dealing with these days. I think I may be dealing with a bit of a delayed PTSD reaction, to be completely honest. Funny, I went to a dinner with a preemie moms group I belong to about a month ago and many of them were talking about things like PTSD and PPD and how it didn’t hit them until about 6-8 months later. I nodded along empathetically, but inside was thinking “pssh… I’m good.” Yep. Eating my words (or thoughts, rather) right about now. I think, maybe, had things kept going well, I might have been able to continue to push off those thoughts indefinitely. But the constant sickness and the realization that prematurity didn’t end when we left the hospital basically brought it all crashing back. Some days I feel like I could probably benefit from some therapy. D and I both probably could, though he’d never admit it. But the idea of trying to make time for one more thing in our lives when I’m barely managing to juggle everything as it is? Would be laughable if it weren’t so sad. Maybe at some point I’ll try to set something up. In the meantime, writing has always been therapeutic. That is, when I can find the time to write…

Okay, here are a few photos from the last month.

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, NICU

NICU day 48

July 5, 2016August 7, 2018 Keeping up with the Hoffmans

So, this happened today:

Emmett got to ditch the isolette and is now in an open bassinet. At first I thought it seemed really soon. And then I realized he will be seven weeks old tomorrow. Seven weeks in the NICU, wow. If someone had told me months ago their baby had spent seven weeks in the NICU, I would have thought that sounded like the most awful thing in the world, but it’s flown by. Don’t get me wrong – this is by far the hardest thing we’ve ever had to go through, and we’re only about halfway there. But we’re also doing okay. As I’ve said before, as long as he’s okay, I’m okay. And huge milestones like this really do wonders for keeping a positive outlook.

Speaking of positives, E gained 48 grams today and is now 4 lbs 1 oz. He’s down to 1 liter of flow on his oxygen and the nurse told me tonight that she thinks he could be off oxygen altogether within a few days. I’ll believe that when I see it, considering they’ve prepared us for the possibility that he could come home on oxygen due to the CLD. He also still has a few more days on the prednisolone and we’ve been told that babies can sometimes rebound a bit once they’re off it, so I’m trying not to get my hopes up until I see how he handles that. But the fact that we’re even talking about it blows my mind.

Now that he’s in the bassinet he’s wearing clothes, which is pretty exciting. Last night I washed a bunch of preemie clothes we’ve gotten as gifts and he’s gotten to wear two of his outfits today (he peed on one and needed a wardrobe change!). We also have free access to him and can pick him up if he cries now. He still has a lot of wires and tubes to navigate so I’m not very comfortable with that yet, but I’m sure that will come with time. It’s funny, he suddenly feels much more like he belongs to us instead of the hospital.

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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, 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 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.