Love the Unexpected

One of the first things we learned from our cleft lip and palate clinic after our cleft diagnosis was to expect two major surgeries within the first year/year-and-a-half of our baby’s life.

If you haven’t had a chance to read my article on our cleft lip and palate diagnosis, I outline some of the variations that can occur within the realm of cleft lip and palate. The type of cleft determines which surgeries are needed. In our case, due to the complete unilateral cleft, we were looking at both a lip repair and palate repair.

The first surgery to be completed is the lip repair surgery. This surgery is usually planned for when baby is between three and six months old. According to the American Society of Plastic Surgeons, this repair reconstructs the lip, forms the cupid’s bow and establishes distance between the upper lip and nose.

The second is the palate repair, which occurs when baby is between twelve and eighteen months old. The purpose of the palate repair is to close the gap in the palate, which is critical for speech development.

Repairing the gap ensures that the mouth and the nose become separate, re-establishes soft palate muscle function and helps connect the soft palate to the auditory canal to help it start working properly. Cleft babies often have issues with fluid gathering behind their ears, which can affect their hearing.

The lip repair is an interesting surgery. It happens so early in baby’s life that it would seem like there’s hardly any wait time before it’s upon you – and yet, for us, there was a significant amount of work that went into getting ready for it.

Four months before surgery

Preparation for lip repair surgery looks different for every baby but largely depends on the severity of the cleft. In our case, baby had a 10 cm gap, which is considered quite severe. To get the best results from the lip repair, it was important to do what we could to bring the lip together beforehand.

Generally, there are two options that are recommended to bring together a severe cleft lip: lip taping or a NasoAlveolar Molding (NAM) device. In either case we would be working with a pediatric dentist who also worked closely with our cleft lip and palate clinic.

A NAM is a custom device, similar to a retainer, that is created from a mold of baby’s mouth. Once ready, it’s inserted and works to slowly close the gap. This technique provides the best results for improving the shape and symmetry of the nose; however, it’s a very intensive method that requires significant monitoring and adjustment. It’s also not always an option.

For us, while our baby would have benefited from a NAM, it’s not a recommended option for a baby with feeding issues. At the time that we would need to be starting intervention, baby was still taking some of his feeds through an NG feeding tube. Subsequently, our surgeon recommended that we consider lip taping.

Lip taping is exactly what it sounds like. Rather that working to close the gap from inside the mouth like the NAM, tape is applied across the upper lip to bring it together from the outside. The force created by the tape slowly brings the two sides of the lip and gumline together, ideally straightening the columella in the process (that’s that section between your cupid’s bow and nose).

We started lip taping when baby was about six weeks old. Our first trip to the dentist involved an initial evaluation to take a look at the gap, explain the process and train me on how to do the taping.

We started putting tape on after that visit, but didn’t apply too much tension, to help baby get used to the feeling. While the tape itself is only about a centimeter wide Steri-Strip, it’s adhered to two kidney-shaped pieces of Duoderm, placed on each of baby’s cheeks. The tape needs to be switched out fairly frequently (e.g., if it gets wet after a feed, if it won’t hold tension anymore, etc.), so the Duoderm helps protect the skin from the constant sticking and unsticking.

We went in to the dentist every two weeks, so that the dentist could check our progress and see if we needed to tighten the tape. The goal was to gradually increase tension without causing baby too much discomfort in order to bring the lip together as much as possible.

Though not too keen on having the dentist look in his mouth, baby was a real trooper with the lip taping. It didn’t seem to bother him or cause him too much pain and he was able to adapt his feeding pretty easily.

When he was around two-and-a-half months old, the dentist introduced a nasal stint. The stint is more or less a little plastic hook that hooks onto the nostril affected by the cleft and is then pulled up or suspended and taped to baby’s forehead. This helps to shape the nostril in lieu of the shaping that would be done by a NAM.

I have to say, I felt pretty bad for him once the stint went on. He didn’t seem too bothered by any of it but it seemed like every time we brought him in for an appointment, we brought him home with another apparatus that was pulling his face in one direction or another.

If there was one part of this process that created more of a headache than any other, it was probably the nasal stint. He didn’t notice it too much at first but eventually he developed some pretty impressive finger dexterity. By around three months, he could easily flick it out of his nose thus starting a tug-of-war with mom. Baby flicked it out, Mom hooked it back in. And repeat.

It was also the most tedious to maintain – the lip taping overall was pretty low maintenance and even the stint wasn’t anywhere near as difficult as the NG tube, but getting it ready was about a five-minute delve into arts and crafts. Thankfully, baby didn’t learn to fully take it off until after his surgery, which meant I could usually get a day or two out of one setup.

In spite of baby’s efforts otherwise, his mouth and nose were really starting to look good. By three-and-half months, his gumline had completely come together, which was an unusually good result for the lip-taping measure. The dentist cleared him for his lip repair surgery and this began our real waiting game.

One month before surgery

It seemed to take forever to get our surgery date, though in reality we only waited about a month from when the dentist told us we were ready. We continued to keep his lip taped and nasal stint in during that time, to make sure we didn’t work back on any of the progress we had made. We continued to go in for our bi-weekly dental appointments. Everything was pretty much status quo.

I remember the day we got the surgery date because it was a textbook definition of a bittersweet moment. We had put a lot of work into getting here, and I knew in the long run, this was going to be hugely helpful to my son.

On the other hand, actually having a date made it very real. I was going to have to hand my five month old over to a surgeon. It would be his first time under anesthesia and we had no idea how he would respond.

There wasn’t too much for us to do in the weeks leading up to the surgery date, but it was very important for us to make sure that he didn’t get sick within fourteen days of the surgery. If he had a fever or any kind of sickness in that timeframe, we would have to delay the surgery. So, we bunkered down for a couple of weeks and avoided too many outings that would put any of us at risk.

One week before surgery

A few days before surgery day, we got a call from the surgical unit to confirm that everyone had been healthy and to run through how everything would work on the day of. She helped us with identifying what to pack and walked us through what to expect.

We would likely be the first surgery of the day, as he would be the youngest to be operated on. It would last about three hours and he would be kept for observation overnight. If all went well, we would come home the following morning.

I started packing our bags around this time – this was partly to keep me distracted and partly to satisfy an anxiety to be prepared. There were a lot of things that would be out of my control in the days to come, but making sure we were well equipped wasn’t one of them. For baby, we brought:

1. His bottle warmer, bottles and formula. We brought two types: powder and his usual liquid concentrate (he was still on a fortified formula). He would be able to go back to eating from his bottle once he woke up and could keep food down
2. A soft toy and blanket for him to bring in with him to the operating room for comfort
3. Diapers and wipes
4. A couple of books to read to him during our stay
5. A new toy, both to give him something new to distract him and as a memory

I would be staying overnight with him, so for myself I packed:

1. A change of clothes and toiletry kit
2. Slippers and a pair of warm socks with grippies
3. Lots of snacks
4. My phone, earbuds and charger

The last two days seemed to drag on forever, in spite of how busy I tried to keep. My house was cleaned up and down, laundry all done, bags packed, and I was all caught up on the Spring Baking Championship. But at last the day arrived.

Reflections

Thinking back to that time, here are a few things that stand out about the experience of preparing for this first surgery:

1. I was surprised at how much work was done before the surgery

It’s one thing for someone to tell you what needs to be done and look at it on paper. It’s another to actually walk through it. In my mind, when we learned about the cleft I figured we’d be passively waiting those first few months until the surgery was booked. In reality, it was a very busy lead-up. I also assumed that it there would be a super drastic change in his appearance that would occur once the surgery was completed. Instead, thanks to the lip taping, we saw very gradual changes so that by the time the surgery was completed, it felt more like the last piece of the puzzle being fit than a sudden transformation.

2. I was surprised at how little I noticed the cleft lip

After spending my first week with my son, I honestly went pretty blind to the cleft lip. Yes, it was there but he was so much more than that birth defect. He was a little snuggler, he loved to eat, he was bright and alert and he loved being around his sister. I was incredible grateful that the lip repair surgery was available because I knew it would have a positive impact on him but there was never a moment where I thought “I can’t wait until the cleft isn’t there anymore”. If anything, I was more curious as to what he would look like when it was done; but, I knew it wouldn’t change anything, at least not anything of real importance. He would still be the same little guy I had brought home from the hospital.

3. I was NOT surprised by how emotional and nerve-wracking the lead-up was

Most of the time during that last month, I tried my best to put the surgery from my mind and not think too much about it. I knew worrying wouldn’t help anything, so I really worked to pray when I felt my anxiety about it cropping up, then leave it in God’s hands. Thankfully, with two babies to take care of, keeping busy wasn’t a problem.

Still, about three or four days before surgery day, I remember lying in bed, listening to my babies’ breathing and saying to my husband, “I don’t want to let him go,” and finally breaking down in tears. It was a natural response to a situation that looked scary because of the unknowns.

No, it wasn’t a high-risk surgery. But what if something went wrong? What if he had a reaction to the anesthesia? I hugged him a little bit tighter in those last few days, and prayed a lot. The song I sang to him before bedtime was the chorus of “Turn your eyes upon Jesus”

Turn your eyes upon Jesus

Look full in his wonderful face

And the things of Earth will grow strangely dim

in the light of his glory and grace

Rocking in his room, with the curtains drawn and him snuggled up in my arms, I did turn my eyes to Jesus. I was putting my trust in Him. No matter the outcome of the surgery, even in the worst possible case, I had the absolute assurance that I would have eternity with my baby thanks to Him. Yes, I was trusting him with an earthly problem but in the light of that hope, it paled in comparison and brought me comfort.