Has it really been two and a half years since I’ve posted anything to this blog? I purchased the domain for this site several years ago, I when I was writing regularly. It’s a small yearly fee and it makes the URL easier to remember and share. My domain comes up for renewal every October, and for the last two years it’s been an unpleasant reminder that I’ve neglected something that was once a big part of me. Writing has always been my coping mechanism for life’s Big Things. And I think we can all agree this last year especially has been full of Big Things.
So much has happened over the past year, and at many points I’ve wished I’d thought to document how it’s affected our family. Parenting a preemie in a pandemic has meant we’ve had to lock down tighter than most of our friends and family. In many ways, the emotional isolation has been harder than the physical isolation, as few people understand our level of caution. But having seen Emmett ravaged by RSV and even common colds, we know too well how illnesses go straight to his lungs. And unless you’ve experienced the trauma of seeing your child on a ventilator, it’s hard to explain how you just don’t take chances with something that could put him back on one. His pulmonologist warned us that while most kids who contract Covid have mild cases or are even asymptomatic, Emmett would likely not be one of them. She urged us to take extra precautions, and as a result, our quarantine has lasted well beyond when our friends and family widened their bubbles and much of the country declared they weren’t going to let this virus run their lives. Unfortunately for us, the more everyone else relaxed their restrictions, the more dangerous the world around us became for Emmett, and the deeper we were forced to retreat to keep him safe.
I feel hope now that vaccines are rolling out, though we’re likely at least several months out from a pediatric vaccine. Dave and I have been vaccinated, as have our parents and many of our friends, so for the first time in a year we’ve been able to get out a little more and socialize with vaccinated people at least!
The optimism I’ve felt these last few months has lifted a weight from my shoulders and I’ve been able to turn my attention to a project I started a couple years ago: I’m writing a book!
Wow, my hands just got all clammy. Every time I share this out loud to anyone, feelings of imposter syndrome wash over me and self-doubt creeps in. Writing a book has always been on my bucket list. I always figured I’d write a novel in my retirement or something, but then life dropped a little 1 lb. 14 oz. trauma into my lap nearly five years ago, and after several people urged me to write a book about our experience, and seeing just how much this blog has helped other preemie parents cope, I’m finally doing it. I started it two years ago, and then stalled out last year because I just couldn’t stomach revisiting a traumatic point in my life while I was stressed with a new traumatic event. I finally picked it up again earlier this year, with more determination than ever.
It’s been a lot of work, turning the daily stream-of-consciousness I’d hammered out each night after much stress and little sleep into a work of prose someone might actually pay money to read. But I’m finally “done” writing the book. I use “done” in quotation marks because I’m always finding something new to revise, and will likely go through a few editing rounds before all is said and done. I’ve decided to try the traditional publishing route first with self-publishing as a backup plan, knowing how competitive the publishing game is, and that securing a memoir, in particular, can be next to impossible unless you’re a celebrity.
There’s an old French proverb: vouloir, c’est pouvoir — “to want, is to be able.” If there’s one thing Emmett has taught me, it’s that even when the odds are stacked against you, there’s a way.
I’ve been incredibly neglectful of this poor blog. I really do miss writing and I often think I should make a point to write more, athough I’m sure I’ve lost all the readers I once had. Even though life was crazy while E was in the NICU, I spent so much time just sitting in the hospital not being able to do anything, so writing was a great emotional outlet. Now life is a whole new kind of crazy, and self-care tends to take a back seat.
In one week, Emmett will be two, and much like last year, I’m increasingly more anxious and weepy as the anniversary of his birth draws nearer. Compounding my anxiety around his birthday, E has also had a tough year, medically. Some days it feels like prematurity is just … haunting us. He is such an amazing little boy, and I’m so aware of how much worse things could be, but every new diagnosis, every new specialist referral, every new modification we have to make to our lives … I’m just drowning. Most of all, I just want him to be normal and healthy, and it always feels like normalcy is right beyond our reach. I live in fear over what’s next.
In the past year, E has had three surgeries (ear tubes, adenoids and tonsil removal), and we’re facing the possibility of another surgery this year on his throat to correct his aspiration. We had another swallow study a few months ago and learned he’s aspirating thin liquids, so we have to thicken everything he drinks (even water) with these special gel packets. Because of his aspiration and ongoing breathing issues, we were referred to the aerodigestive program at Seattle Children’s (coordinated pulmonary, otolaryngology, nutrition and OT/PT care), and we have our first appointment next month. While it sucks to know his issues are severe enough to qualify us for this program, I’m actually looking forward to the idea of coordinated care, versus all the individual specialist appointments we’ve been having. We had a repeat sleep study a couple months ago and learned the sleep apnea he was diagnosed with last fall was mostly corrected with his tonsillectomy, though we may be facing a third sleep study because he still has mild apnea (it was mild enough they didn’t recommend any treatment, though). What else… we just found out a few weeks ago he needs leg braces, and he’s also allergic to peanuts. That last one probably has nothing to do with prematurity, but it’s just. One. More. Thing. We now carry an epi pen wherever we go.
I have been a part of a preemie parent support group since Emmett was born, and I’ve been going to more meetings lately in an effort to better cope with everything. One of the group leaders brought up an interesting point at our last meeting that I try to remember on days I’m feeling down about our situation. She said as preemie parents it’s easy to think, if only he’d been born full term, everything would be fine. But we can’t assume that’s the case. I don’t know why I went into labor early, but maybe there’s a reason my body kicked him out, and things could have been catastrophic if he’d stayed in any longer. Full-term babies can face complications too, and losing a baby later in pregnancy or in childbirth would certainly be worse than what we’ve endured. It’s kind of a morbid way of thinking, but the point is, you can’t assume things would have been better had they gone differently. There are just too many unknowns.
Speaking of NICU support, I finally completed all my vaccinations and volunteer paperwork, had my hospital orientation this week and will get to start volunteering in the NICU on the parent advisory board in a few weeks! I have so many mixed emotions about going back and I know it will be hard at times, but I’m mostly looking forward to being able to help other parents the way this group helped me.
Last weekend we participated in the March of Dimes’ March for Babies event and it really reinforced just how important the preemie community has become to me. Two years ago I had no idea this community existed, but now it’s such a huge part of who I am. We met up with a family who had been across the hall from us during most of our NICU stay, I caught up with a girl from my sorority I hadn’t seen since college whose 23-weeker is still fighting in the NICU (stay strong, Daisy!), and I filled out a couple butterflies for my friend who lost her twin boys last fall. The whole event was just really inspiring, emotinal and fulfilling to participate in. With that, I’ll leave you with a few photos from the event.
November is Prematurity Awareness Month. Specifically, November 17 is World Prematurity Day. As with last year, this time of year brought up a lot of feelings for me, from pride to anxiety, and everything in between; often both at the same time.
One additional thing hit really close to home this year: the birth of a friend’s baby just shy of 26 weeks around the beginning of November. Sadly, her sweet boy fought for 24 brave days before losing his battle just last week. I had tried my best to be there for her during his NICU fight with hope and advice and an ear to listen, but nothing can prepare anyone for the death of a child. “Devastated” doesn’t even touch what I’m feeling right now, and I know what I feel is only a miniscule fraction of what she and her husband are going through. And while I know his path and health challenges were different than Emmett’s, his death hit me really hard, not only for the empathy I felt for my friend, but the realization that that could have easily been Emmett too. On a related note, survivor’s guilt is very real.
One positive thing that came from this past month is the reinforcement of just how much I want to help other preemie parents. I had mentioned previously that I was going through the steps to start volunteering at our NICU on the parent advisory board. The volunteer onboarding process is quite long, and I had kind of stalled out on the process with life being so busy, but this past month has lit a fire under me and I’m determined to make time to finally get onboarded at the hospital. I know it’s going to be hard at times. And I know I’ll shed some tears right along with the parents. But it’s something I feel called to do.
At the beginning of the month I found a “30 day preemie photo challenge” that I decided to participate in on Facebook. And while pulling up a photo per day and describing each left me feeling raw all over again, it was also cathartic to revisit our journey a little over a year later. If you’re connected to me on Facebook, this will be a repeat, but I thought I’d share the photos here as well.
Day 1: ultrasound pic
Day 2: baby bump pic (this was the last photo I would take of my pregnancy at 25.5 weeks)
Day 3: very first pic.
Day 4: tiny toes.
Day 5: little hands.
Day 6: tubes. After a while you learn to see past them to the beautiful baby underneath.
Day 7: first pic with mommy. I am forever grateful for our nurse, Glenda, who took it upon herself to capture this moment, as I was still in a state of complete shock.
Day 8: first pic with daddy. Also, first pic with brother. We really struggled with how to tell Theo that Emmett was here. Theo had just turned 3 and we weren’t sure how he would react or if it would be scary to see him like that. Fortunately, he didn’t know babies came into the world any other way. It was love at first sight and they’ve had an incredible bond ever since.
Day 9: favorite NICU pic. This was shortly after he moved from the isolette to an open crib. We were finally allowed to pick him up whenever we wanted. And while we couldn’t go more than a few steps due to his wires and monitors, it was the first time in almost two months I could do normal things like pick him up when he cried.
Day 10: first feed. Emmett was 4 days old when his medical team first introduced just 1 mL of colostrum via feeding tube. I wasn’t there, but I snapped this photo when I arrived at the hospital a couple hours afterward. I remember I could already see a remarkable difference in him. His skin looked more vibrant, he was calm, and he already looked so much stronger than he had the day before.
Day 11: first outfit. They had just turned the heat in his isolette down to room temperature in preparation for moving him to an open crib and this was the first time he wore clothes. The hospital actually provided most of his clothes since many parents end up donating their preemie-size clothes to the NICU after their babies outgrow them. We did have a few preemie outfits we got as gifts, and it felt good to pay it forward by donating those to the NICU as he outgrew them too.
Day 12: sleeping. Emmett slept a LOT in the hospital and I remember thinking maybe we lucked out with a good sleeper this time around. Turns out that was just his prematurity and we would soon learn Emmett would follow in his big brother’s footsteps by not sleeping through the night until he was 9 months old (adjusted).
Day 13: awake. This was after he had pulled his feeding tube out at 3 a.m. The older he got, the harder it was to get him to leave it alone. I always told myself that feisty attitude was what made him such a fighter, though.
Day 14: any NICU pic. I walked by this wall hundreds of times during our 98-day stay. And it made me smile every time. Under each photo is a plaque that lists the child’s weight and gestation at birth. Seeing these beautiful, smiling faces and knowing they all had scary starts like ours filled me with so much hope.
Day 15: nurses. We had many wonderful nurses throughout our stay. Kris was one of our favorites. Not only for the way he cared for Emmett, but for how he made Theo feel special too. This was especially meaningful since I had a lot of guilt over feeling like Theo’s needs always came second during this time. This was the day Emmett got to graduate to the pediatric wing and I loved that Kris involved Theo in helping move Emmett down the hall.
Day 16: doctors. I couldn’t find any pictures of our doctors, but they were all wonderful too. So I’ll post another nurse picture. This was Emmett’s first bath. The nurse on the right, Glenda, kept saying it was “spa day!” I wouldn’t say Emmett was exactly relaxed, but I always knew we were in good hands when Glenda was our nurse.
Day 17: socks. We didn’t bother much with socks in the NICU, but we had some adorable footie jams!
Day 18: hat. My parents got us this hat and it was one of our favorite items we were gifted. He certainly was — and still is — our little fighter.
Day 19: kangaroo care. I would spend hours holding him skin-to-skin like this. We were only allowed to take him out of his isolette once a day, but we could hold him for as long as we wanted. His cares (diaper, temperature and feeding) were every three hours, sometimes four. So I would often hold him for the entire stretch between cares to maximize my snuggle time.
Day 20: funny pic. #bluesteel
Day 21: look, no tubes! On August 1 we got to lose oxygen support, and on August 20 he finally got to lose the feeding tube. Being able to see his entire face unobstructed was a huge step toward some semblance of normalcy after more than three months of “stuff” on his face.
Day 22: getting big. I remember when he hit 6 lbs and thinking, full-term babies are born in the 6-lb range! He’s normal baby size now! He was just over two months old here (37 weeks adjusted).
Day 23: family pic. Because D and I were in two places at once almost our entire NICU stay, we didn’t get a family picture until the day we were finally discharged.
Day 24: random preemie pic. My view most days.
Day 25: in the bed. Moving to an open crib was the first major milestone we were able to check off our discharge list.
Day 26: car seat test. This was the day before he went home. We had to prove he could handle sitting in a car seat for an hour with no events (desats or bradycardias) before they would discharge us.
Day 27: holiday in the NICU. I only spent a few hours at the hospital on the 4th of July. I spent the afternoon holding Emmett in between taking Theo to a parade that morning and watching fireworks that evening. Holidays are hard in the NICU, especially when you have other children at home. You’re torn between wanting to be there for your baby, and creating memories and preserving traditions for your other children.
Day 28: going home outfit. It’s funny, I had Theo’s going home outfit picked out months in advance. But it didn’t hit me we might want something special for Emmett until a couple days beforehand. I guess we were a bit preoccupied. Thankfully, a coworker had given us this adorable vest and tie onesie so he still got to come home in style.
Day 29: first day home. There’s something so extraordinarily ordinary about this photo. It makes me exhale just looking at it, and I remember feeling like I hadn’t fully exhaled in more than three months. In that moment our family was finally complete and under one roof.
Day 30: today. Today Emmett is such a joy and his zest for life is contagious.
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.
We’re less than two weeks away from Emmett’s first birthday, and every day brings a growing feeling of dread. Logically, it doesn’t make any sense. He’s doing really well, all things considered, and it’s not like anything bad is going to happen on his first birthday or anything. It should be a happy day. But I suppose this is just part of the PTSD experience — and from what I gather from other preemie moms — normal, even.
I have this app on my phone called Timehop. Most of the time I love it. It shows you pictures you took or things you posted to social media this time last year and every year it has access to. It’s been fun to revisit baby photos of Theo or to see some of the ridiculous thoughts that occupied my mind eight years ago that I somehow thought all of Facebook needed to know. But you know what’s been popping up lately from this time last year? Pregnancy photos. Casual, breezy selfies I snapped in the bathroom at work, or in front of the mirror in our bedroom. And while I rarely take selfies normally, I’ve always felt an uncharacteristic sense of body confidence while pregnant, and found myself admiring and snapping photos of my growing bump quite often.
And so it’s weird to juxtapose last year’s carefree photos with my current state of anxiety. It’s haunting to see these photos now, knowing what was about to happen. I had no idea my world was about to come crashing down while exploding with love, all at the same time. Oblivious that I was about to embark on the hardest year of my life. Unaware I would soon come to think of a hospital room as home and that I would create familial bonds with the caregivers who held my son’s life in their hands.
I also find myself reopening Pandora’s Box with the whys. We were told my preterm labor was unexplained, and that we’d probably never know why it happened. For the first couple weeks, that bothered me a lot. And then we got preoccupied with other life or death matters (literally) and I was able to push the questions out of my mind. But I find myself asking why a lot more again these days. Was it the fertility treatments? Did all the medications I took to prevent me from miscarrying again trigger something else that caused labor? Was there some connection medically between the losses and the preterm labor? My OB says no, but that seems hard to believe. Did I work out too much or too hard? I was really into barre while pregnant and took pride in the strength and flexibility I was capable of, even as I got bigger and my center of gravity shifted. Did I overdo it hosting Theo’s birthday? I remember my back hurt really badly that evening, and that was just a week before Emmett was born. Was it the pedicure I got just three days before Emmett arrived? I’ve heard there are acupressure points on your foot that are supposed to induce labor and that sometimes women who are overdue will get a pedicure or foot massage in hopes of kick starting labor. Could any of these things have triggered it? And the reciprocal question that haunts me: is there anything I could have done to prevent it?
So many questions that I’ll probably never have the answers to.
Keeping up with the Hoffmans 