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 need to take a moment to talk about how appreciative I am of my tribe.
I’m referring to my circle of mom friends. They come from all areas of my life — from old friends who happened to become moms too, to other moms I’ve met along the way who have became friends. I actually married into some of my closest mom relationships. D has a very close-knit group of friends, many of whom were his fraternity brothers in college — and a few he’s known even longer than that — and over the years I’ve become friends with many of the wives. As fate would have it, we all ended up having kids around the same time, and it’s been great to have a built-in network for playdates. Kids’ birthday parties tend to have very large guest lists in our circle.
Last weekend, some of these married-into mom friends and I went away for a girls’ weekend (sans kids), and I can honestly say it was one of the best weekends I’ve had in a long time. We drank way too much wine, stayed up way too late, and I know we at least attempted to sleep in, but since we’re all moms, of course we were all wide awake by 7 a.m. I’ve never laughed, cried, and cried from laughing so much in one weekend. It was so good for the soul.
The best part? While us moms were getting a much-needed break, the all the dads got the kids together and I’m pretty sure the kids had one of the best weekends of their lives too.
A few months ago, I had to go to Washington, D.C. for work. I’m part of a Facebook mom group with moms all across the country (and beyond), and had the opportunity to meet up with several who happened to live in the area (plus one who traveled for the meet-up opportunity!). Even though it was the first time many of us had met in person, it felt like catching up with old friends. This group of mom friends is particularly special to me because I “met” them online when I was pregnant with Emmett and we all had babies due in August. When Emmett was unexpectedly born three months early, I nearly left the group because I didn’t feel like I belonged anymore. But they were so supportive of our situation and I’m so glad I stuck around because I do not know what I’d do without them now.
Last night we had some friends over for dinner (part of the former fraternity family crowd). Their twin girls are about a year younger than T and two years older than E, and the kids just all get along together so well. We joke that T and the one twin are getting married one day, and the other twin is always so doting over E. We’ve sort of accidentally fallen into a Sunday night dinner routine with these friends, but instead of your typical dinner party where you might try to impress with fancy meals, it’s often simple grilled meat and veggies or frozen lasagna — but then the adults break out the good wine while the kids play. Because nothing beats sharing a good bottle of wine with friends.
I don’t know what I’d do without my mom tribe. Parenting is just so damn hard and these friends are my lifeline. Sometimes you need the friends who will tell you you’re not a failure when you admit your baby rolled off the couch once. Or who won’t bat an eye when you pour that third glass of wine and suggest the kids all watch a movie because it’s been THAT kind of week.
Thank you to my mom tribe. You know who you are and you keep me sane.
As I mentioned in my previous post, in addition to throwing a birthday party for Theo and Emmett a few weeks ago, I also decided to take Emmett back to the NICU on his actual birthday for the first time to visit. The days and weeks leading up to his birthday were very emotional for me, as I mentally relived everything we had been through, continued to question myself for not picking up on signs that something was off sooner, and also just marveled at how far he’s come. It’s so cliche, but time really does go by so fast, and it seems impossible that it’s been two years since he came into our lives.
It felt like being on autopilot as I pulled into the familar parking garage, walked through the hospital lobby, down the long hall past the maternity ward, up the elevators to the fourth floor, and buzzed through security into the NICU. Only this time instead of lugging a breastpump or an overnight bag, I was holding a 23 lb toddler and a box of donuts for the doctors and nurses. Surreal doesn’t even begin to describe the experience.
I was able to visit with six different nurses who had cared for us during this time, as well as Dr. L, who had initially been one of my least favorite doctors but eventually became one of my favorites. He has a very frank demeanor that can come off a little cold at first, but you eventually learn what a big heart he has. I have no doubt he’s seen his share of heartbreaking situations, and I can only imagine there are just certain things you have to do to compartmentalize such an emotional profession. Dr. L was the neonatologist who had prepared us for the fact Emmett could need a g-tube — and then the next day E finally started eating. I made sure to tell Dr. L what a good eater Emmett is now! I shed some tears talking to everyone and it felt like visiting with old friends or family. Emmett clung to me the whole time, as he usually does in unfamiliar situations, but one of the nurses coaxed a high five out of him before we left.
A few days later, I went in for my first volunteer shift in the NICU. You may recall, this process has been almost a year in the making, but I finally got all the paperwork, vaccinations and hospital clearance I needed to start. To be honest, I’m kind of glad I got to do E’s birthday visit first, because that visit was just for us, whereas my focus was on the current NICU families when I was there volunteering. It was still surreal to see our old room, hear the familar beeps and alarms, scrub in at the wash station and smell the hospital soap, but I wasn’t as affected by the visit as I thought I’d be. At least I didn’t feel like it at the time, though I didn’t sleep well that night and had dreams about the NICU all night. Nothing bad; just those those fitful tedious dreams where you feel like you’re stuck in a loop. I go back again for another shift in a couple weeks and it will be interesting to see whether I become more desensitized as time goes on.
I’ll wrap this up with a repost of what I had written on Facebook and Instagram on Emmett’s birthday, along with the photo I shared from our NICU visit:
Today, Emmett is two. And today I struggle to balance polar emotions: overwhelming love and pride for our little fighter, mixed with crippling guilt and trauma. May 18 is the day he was born, but it’s also the day we nearly lost him.
I’ve never been one to hold onto any romanticized ideas around pregnancy or “the perfect birth” (let’s face it, childbirth is messy, undignified and hurts like hell). Yet today I’m still mourning the fact that we missed the entire third trimester, and I was cheated out of that beautiful moment the doctor places your newborn baby on you. Instead, my baby was immediately whisked away to be resuscitated and wasn’t even stable enough to be held for five days.
Today, for the first time since Emmett was discharged, we returned to the NICU — the most beautiful and horrible place I’ve ever been. A place we were imprisoned for more than three months, but where I fell in love with my baby and he grew and thrived in the care of angels on earth. It was both surreal and healing to go back and proudly show off what a beautiful, vibrant little boy Emmett is today.
Happy birthday to our miracle baby. For all you’ve put us through, our lives are so blessed because of you.
Earlier this month we had a joint birthday party for Theo and Emmett. Since their birthdays are nine days apart it made sense to combine them this year, and we’ll probably do that going forward for as long as they’ll let us. Last year I wasn’t ready to celebrate E’s birthday, so we opted to celebrate the anniversary of his homecoming instead. It was a much happier day for me than his birthday, and we got to do the obligatory cake all over his face experience (since he was only 9 months adjusted on his actual birthday, he wasn’t ready for cake then). We’ll probably still do something special for his gotcha day each year, but this year seemed like a good time to make the transition to celebrating his actual birthday. I think it helped that the day that worked best for our schedules ended up being about a week and a half before his actual birthday, so I was able to compartmentalize a bit. We ended up having a fun pirate-themed party in our back yard (Theo’s choice on the theme), and then on E’s actual birthday I took the day off work and we went back to the NICU to visit (more on that in a separate post).
I still can’t believe we have a five year-old and a two year-old! Theo is turning into this cool little dude who is the epitomy of the boy stereotype — wild and dirty and obsessed with bathroom humor (I’m so tired of hearing the word “poop” 8,000 times per day) — but sensitive and sweet and loving too. And really smart. He can count to (at least) 200 and surprises us with his ability to add and subtract with ease. I think numbers just come easily to him – something he certainly gets from his dad, not me! He’s got strong opinions and doesn’t back down easily or admit when he’s wrong (something he gets from both of us, lord help us). He’s what my dad calls “sometimes wrong but never in doubt.” He doesn’t show much musical or artistic interest, and the jury is still out on sports. I don’t think he’s going to be super athetic, but he may surprise us. He starts kindergarten in the fall, which I’m in complete denial about – but at the same time I’m looking forward to seeing how he flourishes in school. He recently tested as “gifted” in his pre-K assessment.
Emmett is certainly coming into his “terrible twos” phase, complete with GREAT BIG EMOTIONS over every little thing. I can tell he’s going to be my wild child. For as active as Theo is, Emmett takes “active” to a whole new level. He does not sit still, unless he’s in an unfamiliar environment, in which case he clings to me with an impressive tenacity. Actually everything he does is with a surprising amount of strength. For as little as he still is, the kid is strong, and I think he’s going to be very athletic if his lungs and legs don’t hold him back. We’re still waiting on the arrival of his leg braces his OT ordered last month, and while I’m not looking forward to the inconvenience, I’m anxious to get going on helping him. He’s finally starting to talk, and is proving to be quite chatty, repeating everything we say and even stringing together very basic 2-3 word sentences. He’s much more aggressive than Theo ever was at this age and we’re going through a bit of a biting and hitting phase. I know it’s normal developmentally for this age as kids test their boundaries and learn to express themselves, but it’s still disheartening to see. I’m also feeling guilty for judging the parents of the little boy who used to bite Theo at this age, and now understand you can sometimes do everything right but some kids just go through this phase! Hopefully it’s short lived.
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.
I’m three weeks late on posting, but Emmett is officially a year old. The day came and went pretty uneventfully. We’ve decided to celebrate the anniversary of his homecoming in August this year instead of his birthday, so we’ll do a cake, presents, party, etc. at that time. I did put him in the same “Uno” shirt I got for Theo’s first birthday and sent him to daycare in that, and I posted something on Facebook to commemorate the day. Mostly I’m happy to have it behind us. I had mentioned in my previous post that it’s been a little surreal to see photos pop up on my Timehop app of my pregnancy, and I’m happy to not be seeing those anymore, but now I’m seeing NICU pictures, so there’s that. Actually, I’ve started re-reading my daily blog posts from last year each day, and while it does bring up a few feelings of anxiety still, I’m also finding it a little bit healing.
He really has come so far.
Adjusted age: 9 months
Stats: 16.2 lbs and 27 inches
Milestones: Clapping! Walking with a walker!
Sleeping: All night, most nights! Still wakes once a couple times per week. Naps are pretty predictably and hour mid-late morning and another hour early-mid afternoon. I’m thankful we didn’t have to do any sleep training this time around and he kind of figured it out on his own. I hated sleep training Theo but we were desperate, with him waking every two hours!
Eating: He’s doing three solid meals per day now, plus an afternoon snack. Not as interested in nursing these days and is pretty easily distracted, but we’re still trying to get bottles/nursing sessions in him every 3 hours since he needs the calories and breastmilk is more calorie-dense than the solid food he’s getting. Still adding avocado, butter or full-fat yogurt to his purees. Gotta fatten this peanut up!
Personality: The two words I’d use to describe him are happy and busy. So busy. He’s into everything these days. I thought Theo was a busy kid, but Emmett is insatiable when it comes to exploring and getting into stuff. I think he may be my wild child.
Likes: Getting into stuff and exploring, above all else. Also loves his brother so much. He lights up whenever Theo walks into the room.
Dislikes: His inhalers, the Nose Frida and being away from mom. Separation anxiety has officially arrived. I used to be able to drop him off at daycare without much fuss. He’s so intent on exploring and getting into things that he’d crawl over and empty the toy bin as soon as I set him down and hardly even noticed I left. Recently, though, he cries and grabs my legs if I try to leave the room. Breaks my heart.
Mama: Still obsessing over milk supply, though the Domperidone has helped a LOT. I’m still not up to full supply, but I’m usually only 2-3 oz short of what I need to send with him to daycare each day, and there have been a handful of days where I actually pumped enough! I started on the lowest recommended dose of 60 mg per day, though, and have recently increased to 70. I can go as high as 160, I believe, if needed. I’m so close to making enough, that I’m hesitant to increase much more since I’ll need to wean slowly. As of now I still have enough freezer supply to make up the difference and I think E is pretty close to dropping a bottle at daycare now that he’s eating more solids.
In other exciting news, I’ve just begun the process of becoming a volunteer at the NICU where Emmett stayed. There’s a parent advisory board that meets with NICU parents to help them through their journey and I found this resource to be so valuable when we were there. It just really helps to talk to someone who gets it; who’s been there and come out the other side. I know it may be tough to be back there, and I’m sure it’ll bring up a lot of emotions, but I also think it will be healing and a good way to give back. More to come on that — it’s quite the process to get ramped up and approved to volunteer (both by the board and by the hospital) and they don’t like you to officially start until you’ve been out of the NICU for a year, so I wouldn’t start doing any work for them until August, anyway.
Still can’t believe we have a one year-old. I don’t think it’ll really feel like we do until he’s a year adjusted. Right now he just feels like your typical 9 month-old.
Here are some photos from the past month, including some professional shots we had taken.
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.
It’s been an interesting month, health-wise. As I mentioned before, we’ve been seeing a pulmonologist at Children’s Hospital, due to E’s chronic breathing issues. After chest x-ray and echocardiogram results came back normal, the pulmonologist decided to refer us to a feeding therapist to check for silent aspiration as a potential cause for his wheezing and coughing. She didn’t think it would be the culprit, but wanted to “rule it out.” Unfortunately, we weren’t able to rule it out because it turns out that is the culprit. Or at least part of it. Emmett is aspirating as he’s eating. So now we have to add thickener to his bottles. As of now I’m still allowed to continue breastfeeding morning, night and weekends as I have been, as long as I keep him upright and give him breaks, but we have a swallow study coming up May 2 to assess the severity. Depending on how badly he’s aspirating, we could end up having to go to all bottles. After working so hard to breastfeed this kid, now this.
I suppose I shouldn’t be surprised by anything at this point. Eveyone had warned me that prematurity doesn’t end when you leave the NICU, and that the consequences of being born early can follow kids for quite a while — sometimes a lifetime. But I’ll admit that a part of me had hoped he would be the exception. He is such a strong little boy, though, and I know we will get through this. And as frustrating as it is to keep encountering hurdle after hurdle, I am also acutely aware of just how much worse things could be. Perspective is so important.
With that said, here’s what’s going on with our 11 month-old:
Adjusted age: 8 months.
Stats: 15.6 lbs and 27 inches. We have growth finally! He is still a peanut, just barely clinging to the charts around third percentile for his adjusted age and nowhere near the charts for his actual age, but it’s nice to see progress. Thank you, butter.
Milestones: Finally reliable at sitting (without feeling like I need to spot him), pulls up to standing, and even lets go briefly.
Sleeping: Getting much better! He sleeps through the night about half the time, and the times he doesn’t he’s only up once. But a good friend told me to never trust a baby. So there’s that.
Eating: This kid loves to eat, and he’s getting much more efficient about it. In other words, more is finally ending up in his belly than on his belly. He also doesn’t appear to be picky at all, and will even eat any green veggie (could have something to do with the fact we’ve been instructed to add butter to everything, though!). We’re experimenting with some dissolvable finger foods like puffs, yogurt melts and mum mums, but haven’t made the leap to real table food yet. I’m still terrified of choking and he also still doesn’t have any teeth yet! I know I need to get over that fear and start giving him stuff soon, though.
Personality: So happy and very curious and determined! He gets into everything, but is also very good about responding to me correcting and redirecting him when he gets into something he shouldn’t. He seems very socially aware, if that’s even possible for an eight month-old. It will be interesting to see if this trait of his continues as he develops.
Likes: Bathtime, big brother, getting into stuff.
Dislikes: Still hates his inhalers.
Mama: Still stressing about my milk supply. Interestingly, when we took E in for his feeding evaluation, the OT, who is also an IBCLC (lactation specialist), confirmed what I’ve known deep down for quite a while — I’m not making enough milk. I knew I was only pumping about half of what he needed, though everyone kept telling me babies are more efficient than the pump and if he was really hungry he would let us know — so I had just continued to dip into my freezer stash to get him though the day at daycare and continued to exclusively nurse on the weekends. But the OT reiterated that while yes, babies are more efficient than the pump, nursing is still supply and demand, and by the time I got to the weekend my body was already adjusted to what I was pumping all week — about half of what he needed. On the weekends he was probably nursing just enough to take the edge off, but there’s no way he was getting enough from me alone.
I cried on the way home from the appointment, feeling like a shitty mom for basically starving my baby on the weekends. Thankfully, the OT/IBCLC and I worked out a plan, and I’m feeling good about what we have to do to move forward and get him enough food without losing any more of my supply. So now after nursing, I’m supposed to offer him an extra ounce or two via bottle, and ideally pump too, though she acknowledged that wasn’t very practical with busy schedules. She also said I was a good candidate for Domperidone, which is supposed to be very effective at increasing milk production. In fact, it’s so effective that adoptive mothers sometimes take it so they can actually induce lactation. I just started it and am hoping to start seeing results soon. If it doesn’t work, I think I’m probably ready to throw in the towel on nursing once we reach the end of our freezer stash, knowing I’ve tried everything I could. And depending on the results of the swallow study, that may be the direction we’re headed anyway. I had hoped to nurse to a year adjusted, but I may have to settle for a year actual.
A year. How is that possible it’s been almost a year?
Playing with the big boys
Loves his play kitchen.
Family.
Easter egg hunting.
Swimming in his grandparents’ pool in Arizona
Meeting his great great grandma for the first time
Keeping up with the Hoffmans 