Super Emmett

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.






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4 months old

I had drafted the following post weeks ago – on his actual 4 month birthday- but never got around to finishing it until now. You could say life has been a little busy. 

I can’t even describe how good it feels to be writing this update from home. I know I keep saying this, but the NICU really does feel worlds away, and life at home is pretty normal for a newborn, if he were an actual newborn, that is. I go back and forth on how detailed I get on the “how old is he” questions when out in public. I’ve never been more aware of just how often this question gets asked! I’ve kind of fallen into a habit of quickly triaging the situation: what’s the likelihood I’ll see or interact with the person again? If slim, I just tell them his adjusted age. If I’m likely to see them again or we have friends in common, I say he’s four months old but was born three months early, so he’s more like a one month-old. Of course, this usually prompts a million questions. Some days I feel like a bit of a freak show with all the questions and shocked expressions. Other days I don’t mind telling the story. And some days I even feel downright proud. Why yes, he is a miracle! Yes, I am superwoman!

With that, here’s what our little miracle is up to at four months…

Adjusted age: One month.

Stats: 8 lbs 13 oz and 20 inches long.

Milestones: E lifts his head up and shows pretty good neck control for the most part — though he will occasionally slam his face into us or throw his head back while we’re holding him, usually when we least expect it. I’m terrified he’s going to backflip out of our arms.

Sleeping: He wakes pretty consistently every three hours to eat but has given us a few four-hour stretches. We’re still dealing with some reflux, which prevents him from falling back asleep sometimes, and for about a week there he was regularly awake and fussing between 3 and 6 a.m. Just in time for Theo to wake for the day. We have learned keeping him upright or inclined for a bit after eating helps some, so we’ve fallen into a routine where D will give him a bottle at night while I pump, and then since he usually finishes before I’m done, he’ll prop him up on a pillow in front of me while I finish pumping. By the time I’m done and have rinsed out all my parts, he’s usually sound asleep and his tummy has settled enough for us to put him down. During the day he mostly naps in his swing, which is inclined. We borrowed a Rock n Play from some friends, thinking he might like to sleep in that at night, but for some reason he hates it. He’s back on Prevacid, which seems to help some.

Eating: We’re still struggling a bit here. After the pediatrician had us increase the number of fortified bottles from four to six, we were given permission to drop down to five after he had some better gains. So I’m getting to breastfeed two to three times per day and then pumping and bottle feeding for the rest. It’s pretty time consuming. He still isn’t a great nurser and with us having to give so many bottles doesn’t give us much opportunity to practice. I’ve seen a lactation consultant and have started attending a weekly breastfeeding group where I can weigh him before and after nursing so I can see how much he’s getting. He is slowly getting better. It’s really an uphill battle, though, and I’ve been tempted to throw in the towel on nursing on numerous occasions.

Personality: He is still very snuggly. He’s also starting to show a bit more of his spunky side. When he’s hungry, he doesn’t usually cry; he yells! He really sounds quite demanding. I’m looking forward to seeing his personality develop more as he gets older.

Likes: Snuggles with mom, the sound of big brother’s voice.

Dislikes: Reflux and gas. This baby is like a whoopie cushion with the impressive amount of gas he can produce. It’s not just a little toot; it just keeeeeps going. I swear he farts out twice his body volume. No wonder he gets so agitated.

Mama: I’m feeling pretty good, though I’m still shedding hair like crazy, which is really annoying. My hair is longer than it’s been in a while but it’s permanently in a top knot so I don’t have to deal with pulling hair off my clothes all day. Washing my hair is frightening and I’m always surprised I have anything left by the time I’m done. The weight is still falling off, thanks to breastfeeding. Other than that, I’m beyond tired, but not feeling too overwhelmed.

I’ll wrap this with a few photos from the past month and will feebly vow to be more timely with his five-month update. How do I almost have a five month-old?!

Squishy snuggles.

Brother helper.

So tired.

Meanwhile, back at the ranch…

Hello? Is this thing on?

We’ve been home now for about a week and a half and things are going well. I’ve had a lot of people tell me they miss the daily Emmett posts so I thought I’d give a quick update on how things are going. I definitely don’t plan to blog every day again — there just really isn’t enough to talk about — but I do hope to keep writing regularly to capture memories, much like I did before Emmett came along.

Unlike in the NICU where things were constantly changing, life back at home is moving much more slowly and we’re settling into a busy but blissfully mundane routine. Our days and nights are filled with normal newborn stuff: Getting stuck under a sleeping baby while watching entirely too much HGTV. Getting peed on in the middle of the night because we were too slow with getting a new diaper on in our groggy state (rookie mistake!). Bouncing, rocking, swaying, shushing while trying to figure out what the heck it takes to get McScreamy back to sleep at 3 a.m. In just over a week, Emmett has suddenly become less like a sick patient and more like a typical newborn and I feel like we’re getting to know him all over again outside the rigid hospital setting, where everything is strictly measured and timed. While we’re trying to maintain some semblance of the routine already set in place, we’re following his lead more and letting him sleep and eat according to his cues and our needs.

Feeding continues to be a challenge for us. He takes a bottle pretty well now, but he seems to be getting worse, not better, at breastfeeding. When we left the hospital, his latch was good, but he simply lacked the stamina to nurse effectively for every feed. We were instructed to give him four bottles of expressed breastmilk per day, each fortified with a scoop of Neosure powder for extra calories, and were given the all-clear to nurse at his other feedings. With him eating an average of eight times per day, it meant we were doing about 50/50 nursing and bottles. We’ve had two weight checks with the pediatrician since, and while he’s gaining, he isn’t gaining as rapidly as he should, so we were recently instructed to bump it up to six “protein shakes” per day, which only leaves about two feedings to practice breastfeeding. His stamina is better, but all the bottle feedings have spoiled his good latch and he gets frustrated easily at the breast. We’re going to see a lactation specialist this week to see how we can improve our nursing sessions so we can hopefully start doing more nursing and fewer bottles. Trying to bottle feed and then pump with almost every feeding is pretty time-consuming. Not to mention our neverending dishes thanks to all the bottle and pump parts. D has been taking most of the middle of the night feeds so I can pump while he gives a bottle and we can both get back to sleep as fast as possible.

Theo has been amazing. I know we’re less than two weeks in and that this is probably the honeymoon phase, but seeing Theo’s nurturing side come out is probably my favorite part of having two kids. He loves to kiss and hug baby Emmett, and has been so gentle. He is also very proud of “his baby” and loves to introduce him to everyone. I’m handling taking care of two kids better than I thought I would too. We pulled T from daycare while I’m home on maternity leave to minimize the germ exposure to E while he’s so small. And while I had visions of chaos — either neglecting a screaming baby while tending to a needy toddler, or ignoring my firstborn while an infant consumes all my energy and attention — so far things have been going pretty well. Theo is usually happy to entertain himself while I’m dealing with Emmett, and even likes to help by grabbing my water or my phone for me if I’m stuck nursing E on the couch. He’s gotten pretty good at fetching himself a snack and he knows how to operate Netflix on his own (not sure if that’s more of a brag or a confession!). On more than one occasion I’ve let him crawl in bed with me in the mornings where he’ll play quietly on the iPad while I catch a few more Zs after being up with the baby most of the night. I’m not winning any mother of the year awards but everyone is clean, fed and happy. I’ll call that a win.

Overall things are going well. I’m insanely tired, but I’m happy. I touched on this on my last post, but it really is amazing how long ago the NICU feels already. With all the typical newborn stuff we’re immersed in, it’s almost easy to forget that he’s not in fact, a newborn. He’s a three month-old, who spent a quarter of his first year in the hospital. It feels like years ago, not weeks ago. And while I still haven’t figured out how to gracefully answer the “how old is he?” question while out in public, life just feels normal right now. And that’s a pretty big deal.


NICU day 98 – HOME.

I never thought this day would come, but we are home. After E’s weight loss last night, they decided to check his weight again this morning. With his good feed volumes, a loss just didn’t make a lot of sense. Whether he managed to gain between last night and this morning or last night’s weight was off, he somehow managed to be up 22 grams this morning. So around 6 a.m. we got the official word from the doctor: we were free to go.

D came home and then I took him to work and T to daycare, and then I came back home to clean and get a few other things wrapped up. I spent the afternoon at the hospital, talked to the nurses and doctors (there were many tears involved), took some pictures, signed some papers, and then I went to go pick up D from work, and T from daycare (after nap), so we could all go back to the hospital and take E home as a family. It was an incredibly emotional experience.

It’s funny, everyone says the NICU days feel long while you’re there, but after you leave they feel like a distant memory. I couldn’t have understood while we were in the thick of things, but we’ve only been home about six hours and already I’m starting to see how that could be true. In many ways it feels like a bad dream that I just finally woke up from.

I’m going to cut this post short because I need to get to bed. And unlike in the hospital, there will be no nurses to feed him when he wakes up in a few hours. Now the real fun begins…

A final quiet moment in the hospital.

Headed home as a family of four!

Waiting for Daddy to bring the car around.

First car ride!

Fun in the swing.

My boys.