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.

Birthday boys

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.

With that, some pictures from the boys’ party!

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.

Super Emmett

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.






Why? 

Theo has entered the why phase and it may be the death of me.

Why did you go that way?

Why did you say that?

Why is that man sitting there?

Why does that duck have feet???

The questions never end and are often so obscure I have no idea how to even answer them. If I give him an ambiguous answer like “because” he’ll respond with “why because?” If I say “I don’t know,” he wants to know why I don’t know.

I’m told all these questions are a good thing developmentally and that an inquisitive mind is a sign of intelligence.

If you need me I’ll be hiding in the pantry with a bottle of wine.

NICU day 47

Today was a good day. D spent the night at the hospital last night and said Emmett had one of the best nights to date. This morning we took Theo to a 4th of July parade, and then I went back to the hospital so I could hold E this afternoon. When I got there, not only was E swaddled in his isolette, but he was wearing clothes! His temperature on his isolette was turned down to 26C, and the nurse gave me the great news that he would be moving to a crib tomorrow! They will also be turning his oxygen down to 1 liter, which is officially low-flow. Lots of great progress.

I didn’t get a lot of time with E today. Just the three hours I held him, and then I left the hospital to meet D and T at our friends’ house for more Fourth festivities. As hard as it was to have so little time with E today, I know he doesn’t consciously miss me while I’m gone, where T definitely does, so it was important to spend this holiday with him. It was good to see friends and we lit off a few fireworks after dark and kept T up WAY past his bedtime. So worth it to see the sheer elation on his face over the fireworks. D went back to the hospital for the night again and I came home with T to tuck him into bed. And then I started a load of laundry, including preemie clothes (!!) since we can start dressing him once he’s in the crib. The hospital will provide us with clothes if we want, but I figure we might as well use some of the preemie clothes we got as gifts since he probably won’t fit in them for long. He gained another 36 grams tonight, bringing him to 3 lbs 15 oz. There’s a very good chance we’ll crack 4 lbs tomorrow!

Baby clothes!

Baby clothes!

 

Cute kids

Cute kids

 

Sparkler fun.

Sparkler fun.

T-man update.

Poor Theo. Usually it’s the second child that gets the shaft, but then E came along and stole all his big brother’s thunder. I hadn’t even gotten thank you cards out for T’s birthday party (and still haven’t!) when E came barrelling into this world three months ahead of schedule. So I thought I’d show my firstborn some love and dedicate this post to him. Because he is kind of amazing.

First, his birthday was a wild success! Since he was originally due on Cinco de Mayo (but was four days late), we’ve made it a tradition to throw a Cinco de Mayo bash for his birthday each year. Though I think this was probably our last year before he forms some serious opinions on the matter and insists on a Transformers-themed party or something. Despite our best intentions of culling the guest list to only friends with kids and making it a smaller affair, we ended up with nearly 60 people, including about 25 kids! Thank goodness we had great weather and could spend most of the time in our large backyard instead of our modest-sized house. We had a bouncy house and a pinata for the kids, and plenty of beer and margaritas for the adults. It was a lot of fun. Like the previous two years, we had a separate, more intimate party for family. Theo had a blast at both parties, though after two parties at home plus one at his school, he actually told me “no more parties.” Kid was partied out.

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Party animals.

On the potty training front, Theo has been out of diapers since January, but still isn’t super reliable about getting to the bathroom on his own. He has to be reminded a lot because he gets too busy and doesn’t want to stop what he’s doing. Mister has a serious case of FOMO (fear of missing out). We also still have him in pull-ups at night because he sleeps so hard. Funny how this is the same kid who didn’t sleep through the night until he was about nine months old, and when I say “didn’t sleep through the night” I’m talking waking up every hour and a half to two hours. How did we function? At the time it felt like it would never end, and now it feels like a lifetime ago. (I try to remind myself of this when it feels like we’ll be in the NICU forever.)

We’re in the process of putting together his big boy room and he’s now spent two nights in his new room. So far things are going well, and he’s so excited about his big boy bed that he actually goes to bed easier than he did when he was in the crib! It’s fun to snuggle in bed together and read before bedtime and wake him up by crawling in bed with him. I still need to move his clothes and toys over, and I have a bookshelf I need to paint and put in there, but the walls and ceiling are painted, curtains are hung, and he’s got a bed and a few wall decorations so far (I’m doing a travel/transportation theme). The plan is to put Emmett in the nursery once he comes home since it’s already set up for a baby, and then once E is sleeping more reliably we’ll move him in with T and make what’s currently the nursery into the new guest room. For now guests will have to sleep in the loft/office/playroom.

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He looks so little in his big bed!

We’ve had a little bit of a rough spell as far as attitude and tantrums go — I’m not sure how much of that is typical threenager behavior versus him having a hard time adjusting to the changes. As much as D and I try to maintain a sense of normalcy (still sending T to daycare during the week and making sure we’re all home together each night for dinner), I’m sure he’s aware of just how different things are and he can probably sense some of our stress. He actually bit a kid at daycare a couple weeks ago, and he’s never been the least bit aggressive to other kids. Usually we’re getting incident reports because he’s been bitten, not because he’s the biter!

But, when he’s not throwing an epic tantrum, he’s really a great kid. I can’t believe how much he’s blossomed over the last year and especially in the last few months. His language has absolutely exploded and he never stops talking now. I can’t believe I was actually worried about him not talking enough at one point. Just goes to show that kids usually catch up and do things on their own timeline. He is (usually) polite and says please and thank you. In fact, he usually says “please” twice in a sentence (e.g., “please can I have some milk please?”). It’s adorable. He’s really into dinosaurs, Transformers, super heroes and still has to sleep with “Blue” every night (his blue dog blanket lovey). We temporarily lost Blue for two days in the room transition and T was pretty sad about that.

Eating has been a battle of wills. I’m told he eats well at school and at other people’s houses, but at home it’s become a game for him. He stalls, plays with his food, claims he doesn’t like something he usually likes, picks at his food, and then usually eventually eats it, but it takes FOR-E-VER.

Other things: he loves to be chased and tickled and will scream for us to stop and once we do, begs us to chase or tickle him again. He has an infectious laugh and a great smile, but when you ask him to smile on command, this is what he gives you:

"Smile!"

“Smile!”

 

Here's a more natural smile - riding the Great Wheel with his cousin Molly.

Here’s a more natural smile – riding the Great Wheel with his cousin Molly.

Overall, I’m really enjoying this stage. Despite the occasional meltdown, he is just such a joy to be around. He talks often about baby Emmett and I am looking forward to having a house full of boys in just a couple more months. I think Theo and his little brother will become best buds, and Emmett certainly has a pretty great brother to look up to.

Boosh!

Theo has never been much of a cuddler — usually only when he’s sick. Kid likes to have his space. Of course, that doesn’t stop me from trying to snuggle him. He’ll usually tolerate it for a few minutes; sometimes more if he’s sleepy. But it isn’t long before he starts pushing me away and telling me to “boosh.” I think it’s a hybrid of “move” and “push” (he’s usually physically pushing us as he does it).

Cracks us up. Sometimes we’ll oversnuggle him just to hear him to tell us to boosh.