A Wide and Cleft-Less Smile: Post Surgery Edition

Thank you all who have been following along this journey and sending your love and encouragement along the way. Your emails and texts and virtual hugs were all felt when Finch was in surgery. Cory and I feel so grateful to have such an incredible community of friends and family that not only love us, but love our little guy. 

I know many of you have been anxiously awaiting an update. Some of you have gotten one, but it's taken me this whole week not only to process, but to even take the time to write down what has been going on. 

First things first, our baby did great. Finch is such an incredible trooper and I am amazed at the resiliency of babies. He is quickly returning to normal. Before I get into his recovery, I'll give you some play-by-play on the last week.

Surgery Day

Pre-Surgery Prep

Our surgery check-in was scheduled for 7:30am and Mr. Finch was not allowed to drink breastmilk later than 4 hours ahead of that. So I woke him up at 3am to feed him keeping my fingers crossed that he'd stay asleep until we had to wake him up to try to give him some pedialite at 5:30 to keep him hydrated. Because the dude is in the middle of a sleep regression (fun times), that didn't happen. So we were up from 4:30 on and he didn't want anything to do with the pedialite (I wouldn't either, dude. The infant one is just a salty serum!). So we spent the next couple hours working to distract him, which, aside from a half hour or so of whining, was fairly easy to do. He's become quite good at delayed gratification since he's decided not to take the bottle. 

In order to distract him further, we plopped him in the car and headed to the hospital early to stroll him around and get us some coffee and breakfast. Finch fell asleep the moment we put him in the car. Woot! Little did we know that we still had several hours to go before they actually took him back.

While we were brought back on schedule, the case before Finch's ran over (likely a younger baby given that we were initially the first case) and we spent a good ~2 hours distracting him. He was amazing. Cory spent most of the time with him so he wouldn't be tempted by the smell of my milk. He charmed the entire pre-op area in his cute little kitty and doggy hospital gown.

Finally right before they took him away, I snuggled my baby so tight and, of course, cried. There may have also been tears on both parents' part :). I knew he'd be great, but it was hard knowing my baby would be under anesthesia and also wondering what he would even look like when we eventually did see him.

During Surgery

After spending hours distracting Finch, it was time to distract ourselves. We wandered around the hospital with Finch's empty stroller getting coffee, his prescriptions, locating the best lactation room, and listening to podcasts and reading the newspaper. I spent a lot of time texting people back (thanks friends for checking in!). 

They give us a pager alerting us of each step of the way and updating every hour. Total it took about 4 hours from the time they took Finch to the OR to when we received the update that they were finishing up the case. Soon enough, Finch's surgeon, Dr. Leo Urbinelli came to chat with us saying that everything went great, no complications with anesthesia or otherwise.

What he had essentially done was sewed 3 layers of absorbable sutures into the lip and topped off with permanent black sutures that would have to be removed a week later (which will actually be tomorrow). He also implanted a nasal stent to shape his nose which was flattened because of the cleft. The stent is essentially a small tube in each nostril. This will be there for three months and in the meantime will have to keep it open - meaning we have to suction out the mucus that accumulates. Dr. Urbinelli says that using the stent has created even better outcomes. He says it should be easier than dealing with the NAM, but that he'd love my feedback on that. (So far I would say it definitely is easier than the NAM...thank god no more NAM!).

Post Surgery

It took awhile for the nurse to get us to bring us back to see Finch. They usually let them sleep and will get the parents when they wake up. Cory warned me that kids coming out of anesthesia will wake up like bears, so be prepared.

Turns out we were hours away from a little bear because Finch was sleeping away. They came and got us anyway because he was stable, but still kind of sedated. 

My eyes well up just thinking about the anticipation of seeing Finch post surgery. I know the nurse was talking to me when we went back to see him, but it's a blur. All I saw was my little baby. It was surreal, and I admit a little heart-wrenching, to see Finch hooked up to all the machines. He was asleep, but not in the restful way babies usually look, more of a sedated way. He was making these little birdie sighs in his sleep. It was also surreal to see the big, black sutures and no cleft. All I wanted to do was hold him. And they let me pretty much right away.

Even though Finch never really woke up completely, we tested out whether he could swallow (a requirement before unhooking him from everything) and he passed. Then we spent the next few hours in another post-op room waiting for him to wake up. We did everything to get the dude to wake up, but the anesthesia provider did her job well (as Cory told me) and he was most definitely not in pain for awhile. Eventually, he did wake up crying, enough so that we were discharged and got home around 7:30am making it a 12+ hour day.

our sedated kiddo: 

At Home

Still kind of out of it, but also feeling a bit of pain, we tried to feed Finch when we got home to no avail. So we gave him some pain killers and put him to bed wondering what would await us. 

We got a few hours of sleep, then at 2am, our little dude woke up like a bear as I expected him to in the hospital. So begins the next heart-wrenching part of the surgery day: trying to get him to eat. 

The nurses in the hospital warned me that Finch would be likely be frustrated when trying to eat for the first time. Frustrated was an understatement. I had a true breakdown watching my little guy go in and try to nurse and then obviously feeling pain and frustration. Poor Cory didn't know what to do other than to be a support as he watched me sob as I tried to feed Finch. They do say nothing ever good happens after midnight. This goes for trying to feed your baby for the first time in 24 hours after surgery. But all was not lost, after giving Finch some meds and walking around trying to calm him down, he eventually latched. I've never been so relieved in my life.

The Day After

Admittedly, the day after surgery was low key. Cory was off work and Finch had his moments of fussiness, but also slept a lot. I did a lot of nursing him to sleep and we had some help from my parents. 

I was emotionally exhausted by this time and I had one moment when I was changing Finch and he smiled (yay, a smile!) and I started sobbing because I missed his cleft lip so much. I missed his incredibly wide smile. It was such a part of him and I wasn't used to seeing my baby with a completely in tact lip. He looked different but the same. But nothing changed the fact that he was my baby and that would never change. 

The Last Week

Tomorrow will be a week since his surgery. It has gone by incredibly fast (and sometimes a little slow). I am already used to my kiddo's new, beautiful face. I am eager to see it even more without the dark stitches. 

He is most of the time (when he's not constipated from the Oxy) the same smiley, happy baby. He's still adjusting after the surgery. He's not as hungry, his naps are kind of off, and he tends to get quite a bit fussier in the evenings. Also his sleeping sucks! That's something I expected as the cleft nurse warned me his sleep will be off for a couple weeks after, but then should go back to normal. When she told me this a few weeks ago, Finch was sleeping some solid 9-hour stretches regularly. But since then, his sleep has regressed (the dreaded 4-hour regression). But this post-surgery regression is even worse. It's like having a newborn again. He's up every two hours and sometimes impossible to put back to sleep. And he's not taking a bottle, so Cory can't really help out with evening duties. It's a bit rough.

But even that is getting better. Finch is officially off pain killers and we've done our best to relieve his constipation. And tomorrow the big sutures are removed. He still has the absorbable ones and it'll be sore there for a bit, but I do think it will help.

Feeling Grateful

Last, I just want to note that while it's always hard to see your kiddo go into surgery and having to deal with the aftermath, we are incredibly grateful to have a healthy little guy. I have seen far harder things parents have had to go through. I have friends whose 2-year-old is currently undergoing (and hopefully completing soon!) a long and super-aggressive treatment for leukemia. Their resilience and love and positivity are an inspiration. (Speaking of, you can see more about their journey on Be The Match Facebook page and join the Be the Matchmarrow registry in honor of #fiercepierce here).

Also, I was doing some online reading to learn more about why babies are thrown off so much after surgery and came across mostly forums of families whose kiddos underwent open heart surgery. Such amazing resiliency from kiddos and their parents out there. 

I feel inclined to note that as there have been some rough moments, but we are lucky. 

But also we are lucky to have a lot of wonderful people following this journey. The journey absolutely doesn't end here and I will still be writing and updating on what is to come. But for now, I am happy that the surgery is behind us and we move onward. 

Some Photos to end on...

Elizabeth Doerr