Love the Unexpected

If you’ve followed along with our cleft lip and palate journey, you’ll know that last year we had been preparing ourselves for a major milestone – the palate repair. I’m delighted to report that in December of 2023, we crossed it!

Getting ready

This was the big one. I won’t downplay the significance of the lip repair, but the palate is known to be the more difficult surgery. It’s more invasive, more painful, and it usually happens when your child is that little bit older, meaning that they are more aware that something is happening but are still unable to really understand what it is. Our son was 14 months when he went in for his repair.

December 11th was the day, just a couple of weeks before Christmas. We had been given the option to wait until the new year, but decided that since the timing worked well for my husband to take time off work, we’d set our expectations for what this Christmas would be – a season of recovery.

I went into this surgery with a lot less anxiety than the lip repair. Having that first one under my belt, I had a much better idea of what to expect and with that came many points of reassurance: he hadn’t had an adverse reaction to the anesthetic; we had a good idea of how to handle the first 24 hours; and, we had more realistic expectations for sleep and feeding during the recovery period.

Still, surgery is never easy, fun, or the same twice, especially with a baby.

Surgery day came and we were once again up bright and early to arrive on time for our 6:30 a.m. check-in; as the youngest patient, he would be first surgery of the day. After he was weighed, we got him into his hospital gown; the nurse gave him a vital check and we went through the routine questionnaire (e.g., “when was the last time he ate and had liquid”, “any known allergies”, etc.); he was given his first dose of Tylenol and some numbing cream to help mitigate the pain when it came time to put in his IV. A short wait and then we were off to the OR waiting area.

In the Operating Room

This is the hardest part – the hand off. I had kept things emotionally together up until this point but as we waited and watched the hustle and bustle of the doctors and nurses starting their day, we saw a little boy not much older than Silas being carried away from his parents and into his surgery. Seeing the fear in his eyes and hearing him cry got to me and resulted in a few sobs and tears. “That’s going to be my son in a few minutes,” was my thought. A mother’s instinct is to protect her child from pain – it’s a heart-breaking thing when you can’t, even when you know that the short-term suffering is in their long-term best interest.

I managed to get myself together before we had the short visit from the operating team. The surgeons and anesthetist explained their processes and kindly answered any questions we had. Before I knew it (or was ready), he was being carried off to the OR. Our son was a trooper once more and if he did cry, it wasn’t until we were out of earshot. We took a big breath and made our way to the waiting area.

The waiting room was a little easier this time around. We found a seat, pulled out our myriad distractions and settled in for the long haul. As it happened, the wait wasn’t as long as we had anticipated. After about three hours, the surgeon was walking out to give us an update. It had gone great, and he was currently in recovery; we’d be able to see him soon.

“Soon” is a somewhat relative term, and I was starting to think he and I might have different definitions, when a nurse finally came back and asked for just me. They took me back to the recovery unit to see him, where I learned the reason for the delay – he had experienced some bleeding after the surgeon had come out to see us and it had taken some time to get it under control. This would be important later, but for now he was doing well and after about half an hour, he was moved to surgical short stay, where my husband met us.

Recovery Room

The following afternoon, evening, and night went a lot more smoothly than the lip repair, and I think that was for a few reasons:

1. We had a better idea of what waking up looked like

It takes a while for the anesthesia to wear off, so we knew the afternoon would be spent mainly just snuggling him and waiting for him to wake up more fully. I was also a lot less shy about picking him up. There are a lot of wires that make it intimidating – the IV, the heart monitor, the blood pressure cuff, etc. But as soon as I saw his eyes open and the initial panic set in, I picked him up, gave him a big hug and settled in.

2. My husband stayed for longer into the evening

My son had become a bit of a daddy’s boy in the weeks leading up to the palate repair – my husband was the one he wanted going in and he was also the favourite coming out. While we had been in a bit of a rush for him to get home to our daughter the first time around, we knew this time that it would be the difference between seeing her for an hour before bed or not.

Rather than rushing home, we opted for him to stay further into the evening. Having him there for that little bit longer was a big help. We even debated whether both of us should just stay overnight, or I should go home, but made a game-time decision that at least one of us needed a good night sleep and he since he would be taking more of the sleepless nights at home, and it was my bag that was packed, we figured it would be best for it to be him. Still, I was able to get changed, ready for “bed” and get myself setup for the night, without my son crying for me while I was gone.

3. I embraced the co-sleep.

On a normal day, we are not a a co-sleeping family. But post-op is anything but normal and the first time around, it took a while before I realized that he was just not going to sleep on his own. This time, once my bed was setup, I settled in for the night with him beside me and we were both able to get a bit of sleep.

4. Bye-bye to bottles

If you read my article on our transition to an open cup, you’ll know how important it was for us to be fully off the bottle and able to drink from an open cup for this surgery. Clear fluids were the only thing that was allowed for the first twenty-four hours and that ended up being a blessing in disguise. After the lip repair, I was wrestling with making bottles and playing catch-up on the feeds he had missed. Not having that aspect to contend with (and being able to temporarily set aside my anxiety over how eating would go, while I dealt with the more immediate concerns) was another factor in why the night didn’t feel quite as long.

Going Home

The next morning the surgeon came in to take a look at his mouth and things were looking good. We got the go ahead to try a bit of liquid food; this was the part I was most worried about.

Historically, it had taken a while to get our son on solids and after his lip repair, he was … shall we say, reluctant, to be spoon fed by us. However, because we needed to be so careful with anything entering his mouth, spoon-fed he must be. There was some added pressure because we knew we couldn’t be discharged until we could see that he was taking food okay.

We tried a few different things – milk in an open cup, apple juice, and yogurt. These were a no-go. We tried not to be too pushy, since we really didn’t want to create a negative association with eating, anymore than the pain from surgery already was. We would give something a try, leave it and come back a bit later.

Eventually, we found success with butterscotch pudding. Super nutritious? No – but, let me tell you, my standards on nutrition dropped significantly during the recovery period for this surgery. It was less about how healthy a food was, as much as wanting to see just about anything on the approved food list make it into his tummy. A big part of managing this recovery was making peace with that reality, knowing it was only for a short period of time and the important thing was to keep him eating.

I should note that throughout the night we had been offering Pedialyte and water to keep him hydrated. Admittedly, he didn’t drink a lot but we did manage to get some fluids into him, enough for his IV to be removed in the night.

We breathed a huge sigh of relief once that pudding went down; we managed to sneak in some milk as well and shortly after we were given the all-clear to head home.

The first couple of days were naturally the toughest. We had a lot of trial and error finding foods that our son would eat. Our daughter, who had spent a couple of days with Grandma and Grandpa (and thoroughly enjoyed her time), was nevertheless feeling the sting of having been left behind and found ways of making it known to us. Neither of us were sleeping very much, although my husband took the brunt of night shifts since he could sleep better in our nursery recliner and I was battling the combination of exhaustion from our hospital stay and early pregnancy.

Still, we managed to get through that first week, and there were many things that we found ourselves grateful for. We had a lot of confidence in our surgical team, and were thankful to have their support. It’s hard to imagine what we would do without our incredibly supportive family – being able to have peace of mind that our daughter was well taken care of while we were away was a huge relief. Even just the fact that our son had access to this surgery, and to have it done at such an early age was something to be thankful for.

But, we still had some challenges to face, and they started with one very disappointing check-up with our pediatrician. To be continued.