Baby Emmett, NICU, prematurity

Prematurity Awareness Month

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.