Back to the NICU

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.

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Coping.

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.

Family photo before the walk

Emmett and his NICU “roomie.”

Playing with a balloon sword before the walk.

Butterfly garden for babies remembered.

Countdown to D-day B-day.

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.

Sweet, naive me.

8 months old

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

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

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

Adjusted age: 5 months

Stats: 14 lbs and 25.5 inches

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

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

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

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

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

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

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

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