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.
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.
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.
I never thought this day would come, but we are home. After E’s weight loss last night, they decided to check his weight again this morning. With his good feed volumes, a loss just didn’t make a lot of sense. Whether he managed to gain between last night and this morning or last night’s weight was off, he somehow managed to be up 22 grams this morning. So around 6 a.m. we got the official word from the doctor: we were free to go.
D came home and then I took him to work and T to daycare, and then I came back home to clean and get a few other things wrapped up. I spent the afternoon at the hospital, talked to the nurses and doctors (there were many tears involved), took some pictures, signed some papers, and then I went to go pick up D from work, and T from daycare (after nap), so we could all go back to the hospital and take E home as a family. It was an incredibly emotional experience.
It’s funny, everyone says the NICU days feel long while you’re there, but after you leave they feel like a distant memory. I couldn’t have understood while we were in the thick of things, but we’ve only been home about six hours and already I’m starting to see how that could be true. In many ways it feels like a bad dream that I just finally woke up from.
I’m going to cut this post short because I need to get to bed. And unlike in the hospital, there will be no nurses to feed him when he wakes up in a few hours. Now the real fun begins…
We’re still here. We got news this morning that they would like to keep us another day to make sure we are set up for success on the eating front. But we were told if things went well today we could go home tomorrow! E had good feed volumes today, and I spent all day frantically tying up loose ends with work. I got to the bottom of my inbox and conquered my to-do list, checking off what I could, delegating what I couldn’t, and creating a comprehensive hand-off sheet for the contractor we’re bringing in to fill in for me. I also spent all evening doing laundry, cleaning and getting the house ready. After feeling a little panicked yesterday, like I had too much left to do, I actually feel really prepared now.
And then D texted me from the hospital tonight and said E lost 22 grams at his weight check.
Eff. We won’t get the official word from the doctor until tomorrow morning, but I have a feeling they’re going to keep us another day.
There is a good possibility we are going home tomorrow. Emmett continued to average around 80 percent of his feed volume throughout the day, and even took 50 ml via breast this evening, which is better than he’s done at the breast in over a week. He did lose 4 grams tonight, though, so I’m not sure if that will prevent us from going home. The nurse tonight said they don’t count 4 grams as a loss and would label it no change, but she also didn’t seem to be aware of our potential discharge tomorrow, and she thought he was still on scheduled feedings. She also tried to get me to breastfeed when he was just calmly staring up at me and showing no hunger cues and had just eaten an hour before. I’ve never seen this nurse before and I must say I’m not impressed. She doesn’t seem like she knows what’s going on at all. Thankfully at this stage in the game, the nurses aren’t as critical anymore so I’ll just wait until I see the doctor or until the day nurse comes around 7 a.m. to figure out what’s next.
I will admit, I legitimately freaked out this evening after I got home from work, realizing that we could potentially have Emmett home this time tomorrow and I still haven’t installed the car seat base or even thought about a going home outfit for him yet. I also still feel like I have a million loose ends I need to wrap up at work and a ton of chores around the house I had hoped to finish before we bring him home. Amazing how I’ve had three months to prepare for this and it’s suddenly crept up and I have nothing finished. As much as I want him home, I would probably be okay if they wanted to hold us for just one more day!
Note: I was just notified by my mom via text message that I did not post this last night. Oops! Lots of good news below, and this morning we just got the even better news that if the next 24 hours go as well as the previous, we can go home!
Here’s the rest of what I wrote last night.
It’s been more than 24 hours on the no feeding tube trial and we’re doing well. E ended the day around 85 percent of feed volume and managed to gain 44 grams tonight, so that’s a huge win. He’s now 7 lbs 13.5 oz. I haven’t nursed him since yesterday, as I was gone for several hours today and he was sleepy the times I was there, so he’s just been getting pumped milk from a bottle. I feel like a little bit of a failure that I can’t seem to give him those numbers when I’m nursing, but I’m still determined to keep working on this. I know preemie moms who have left the hospital on bottles and fought their way back to breastfeeding and went on to have a successful time nursing. So it can be done. The most important thing is that he is eating, and minus the feeding tube. If he keeps this up we could be home very soon.
Well, we’re doing another trial off the feeding tube. We aren’t quite at 80 percent due to the nurse gavaging him twice overnight (though if you ask me, sometimes I think they just gavage him when he could possibly wake up and eat), but he’s had several full feeds in the last couple days and when he pulled his feeding tube out again today the doctor suggested we just not put it back and see what happens again. This time around, the doctor suggested that we just do one or two breastfeeding sessions per day and make sure he is really awake, and bottle feed the rest. She thinks the one or two breastfeeds per day will give him the practice he needs so he doesn’t lose the skill, while allowing him to conserve some of his energy since he doesn’t have to work as hard for a bottle. We can work on gradually increasing the number of nursing sessions per day at home, but as long as we can maintain volume, the doctor said she sees no reason we need to stay here any longer. The next 48 hours will be very telling; we’ll either go home or go back on the feeding tube.
I spent most of the day at the hospital today, and went home late afternoon, and then D and I went out to dinner and a movie (T is with grandparents for the night). Then I came back to the hospital for the night. When I got here, E was wide awake and happy and the nurse reported he had taken two full bottles while I was gone. He then nursed and got about half of his feed volume from me, which is better than average. Since we aren’t gavaging after nursing now, the hope is that he can self-regulate and wake up again if he gets hungry sooner, or possibly take a bigger feed next time. I really hope this works, though I’m trying to be realistic since we’ve been through this before.
E had a good feeding day today. He hasn’t had to be straight gavaged since 3 p.m. yesterday and he took several full bottles today. I went into the office so I didn’t get to nurse him until 9 p.m. this evening, but he took about a half feed from me, which isn’t terrible. He definitely does better with the bottles. We ended our day at 72 percent of all feeds orally, which is great! Of course, since I’ll be here tonight and most of tomorrow, the breastfeeding will bring down our average. The analytical side of me hates to see those numbers plummet on a day where I nurse more than bottle feed, but the side of me that really wants breastfeeding to work wants to practice at every chance we get. Conflicting emotions, for sure.
Either way, it’s clear that E is starting to get stronger. He was very alert during his feeding tonight and I even put him back in his crib still awake. He very well may sleep through his midnight feeding, but it’s good to be making noticeable progress. Inching along…
I had really hoped we’d be out of the NICU by the time his three-month birthday came. But here we are. Actually, we had a really interesting conversation with Dr. L today at rounds. He asked us if we were tired of being here (duh) and said while they don’t like to do this, if we were interested, we could learn how to insert a feeding tube and we could go home on the NG tube while we continued to work on feeding.
I was shocked. He was basically putting the decision in our hands when to go home. I feel really conflicted. I want him home so bad. But I want him home healthy. And bringing him home on a feeding tube would mean multiple follow-ups with specialists, possible g-tube surgery, and the intimidating chore of changing his tube ourselves (which comes with the risk of accidentally inserting it into his lungs instead of his stomach – yikes.) It would be one thing if we were facing a long-term feeding issue. But all the doctors and nurses say this is textbook for an early preemie and that he’ll grow out of it. He just needs time. I just wish I knew how much time we were looking at. Another week, two weeks? Let’s wait it out and bring him home wireless. Another month, two months? Let’s just get him home already and stop wasting time in the hospital. So after talking it over with D and the rest of the medical team, I think we have a plan: give him until 42 weeks gestation (he’ll be 40 weeks on Monday) to lose the tube. His team thinks he’ll probably figure it out before then anyway, but if not, we’ll bring him home with a feeding tube at 42 weeks. If nothing else, it’s nice to have a hard stop.
Feeds went okay today. He’s taken more feeds by gavage than usual (three today, compared to his usual one a day), but the feeds he has done have been nearly full volume. It seems whether he takes a half feed every time or a full feed every other time, he’s still stuck at around 50-60 percent of his volume orally right now.
Anyway, with that daily update done, here’s what’s going on at three months…
Adjusted age: 39 weeks 3 days
Stats: 7 lbs 10 oz and 18.9 inches.
Milestones: As of August 1st we are off oxygen! Starting to do tummy time a few times per day.
Sleeping: Still sleeps pretty well, but I think that has more to do with him spending all his energy trying to eat. Though I still have hope we got a good sleeper this time since Theo was horrible!
Eating: The bane of my existence and obsession of every waking moment? In other words, we’re working on it. 65 ml of breastmilk plus 24 kcal of Neosure to fortify my milk, every three hours. Combination of breastfeeding and bottle feeding pumped milk (about 50/50 currently).
Personality: Is it too soon to say he is an affectionate baby? Theo was always so busy and not much of a snuggler. Even when he was an infant he was constantly moving and trying to see everything. E seems much more content to snuggle up against me. Part of that could be his prematurity. We’ll see…
Likes: Snuggling, being held. When he cries he calms down instantly when you pick him up.
Dislikes: Gas, reflux, having his temperature taken and his NG tube. Tries to pull it out often and hates having it put back in.
Mama: Still hating pumping. Still going into the office twice a week. It’s been hard to plan for things, knowing I’ll be out soon, but not knowing exactly when that will be. Starting to drop a bit below my pre-pregnancy weight, which is nice. I lost quite a bit of weight while breastfeeding T, but then gained it back, and then some, after I weaned. I’ll have to be more aware of that this time around. I’ve started losing my hair lately — I had completely forgotten about that fun postpartum side effect. When you’re pregnant you often stop losing hair (which is why pregnant women usually have great hair), but then a couple months postpartum you lose all that hair you should have been gradually losing during pregnancy. The human body is weird. Yesterday during barre I kept having that sensation that a hair was tickling my arms and I must have pulled about 10 strands of hairs off myself throughout an hour long class. At this rate I’m expecting to be completely bald in a few weeks.