However, a cleft is not minor, nor is it completely correctable. She'll always have a scar above her lip. The inside of her mouth will never be "normal". Over the years, we can make it better, but never will it be "normal." A huge misconception is that people think that she's "done" and completely fixed after one surgery. But in reality, cleft repair spans the entire course of childhood and often into adulthood. Maggie has had 3 surgeries and has an undetermined amount in her future. Speech is a huge ongoing issue. We haven't even begun to address the multitude of dental repairs that are in her future. But that's okay, she's our girl and we'll do anything and everything we can to help her.
In the spring, we found out she has "Velopharyngeal Insufficiency" which meant that air was escaping out her nose when she talked, making her very nasally. They also said the back of her palate was wavy and uneven and short. These are common issues that kiddos with clefts have. They said she needed a surgery that would fine-tune her palate, lengthen it and hopefully improve that hyper-nasality and speech to an extent. We knew it wouldn't be a magic cure-all, but hopefully a step in the right direction. So we decided to proceed with the surgery.
Timing became an issue, because they were scheduling for September at that time, and we knew we'd be in China then. The surgical department was understanding of our dilemma and offered us a July date as an "add-on". That meant we'd be guaranteed a day but not a surgery time on that day. We agreed, thinking that enduring a possibly long day of waiting would be worth it to get the surgery done and her healed before we left for China. So Friday, July 22nd we arrived at 11am at the hospital. We waited. And waited. And waited. She had had no food, and they continued to tell us she would be squeezed in "soon". But late afternoon, we were told that it wasn't looking good, that they had an unusual amount of add-ons, and they weren't going to get to her that day after all. So after going nearly 24 hours without food, we dragged our poor girl back home.
They offered to make time for her first thing Monday morning. We appreciated them clearing the surgeon's schedule, but we were frustrated. Not only did we waste a day with her starving and stressed, we had also cut our vacation short to be back for surgery on Friday. Jeremy had to go back to work and we had to figure out childcare for everyone else. I also felt like we were losing valuable summer days with the kids. But it couldn't be helped and so Monday, July 25th, Maggie and I were back at the hospital at 6am to repeat the same pre-op check-in that we had done on Friday. I felt like we started off exhausted from being there all day Friday, but we were hopeful. Thankfully, they got her right in and the surgery took just under 2 hours. The surgeon said it went well and he was hopeful that it would help her speech. He did say she had a lot of scar tissue from her previous palate repair, but he still thought overall it went well. We were told she'd need to be on a "soft foods" diet for about a month. No hard, sharp or crunch food, but she could still have lots of favorite foods like macaroni, grilled cheese, spaghetti, etc.
They called me back to see her upon waking and as I got back to her, she was having respiratory distress. It was scary and not easy to watch at all, but with some extra meds and oxygen, she got back on track. But boy was she unhappy. She was very agitated for the rest of the day on Monday, and spent a large amount of time crying. All completely understandably, but selfishly, it was a lot to take on my own. Sitting in the hospital all day Friday, all day Monday, watching her have breathing issues and then dealing with her agitation on my own and facing at least one night at the hospital with her, well it was a lot for both of us.
Jeremy brought the other kids to see her Monday night, just in time to watch her vomit blood over and over that had drained into her stomach during surgery. That was fun. Poor Sam & Allie were so traumatized by it that they had to leave the room. Sweet Ben wanted to stay all night and help take care of his sister. After some meds for nausea and a stronger IV pain med, she finally settled in a bit. We didn't sleep much but she was happier overnight. In order to go home, she had to drink, drink, drink, which was very painful. But she's old enough to understand that if she wanted to go home, she had to drink, and so she did. She drank and drank and drank and by noon on Tuesday, we were on our way home.
We continued to manage her pain with Oxycodone and Tylenol at home and kept her diet limited. She is very oral and loves to put things in her mouth, so she needs extra supervision. She isn't allowed to suck or use straws or utensils, so she needs a lot of help eating. It's tiring, but we felt we were over the hump and well on our way to healing and hopefully better speech.
Friday night, though, she became very irritable again. She couldn't sleep through the weekend, and was so very agitated. Finally we took a good look in her mouth and discovered a giant hole in her palate. It's called a fistula, and is a common complication after palate surgery. Her surgery was repairing her soft palate in the back of her mouth, which is extremely fragile. I remember last time they told me it was like paper mache. So for a hole or fistula to develop, well it's not that rare. But it's devastating. It's like a crater back there. We were hoping for one step forward and this is truly like 5 steps back. I don't know what this will mean for her long-term, particularly for speech. Right now there's nothing we can do other than help her heal completely and not make the damage even worse than it already is. Of course we speculate about how it could have happened, did she eat something she shouldn't have, did she put something in her mouth? I've read that even crying can cause the tissue to split apart, so it's possible that her excessive crying caused it. We'll never know, but it is so devastating. I'm feeling some guilt, wondering if this surgery was just not meant to be at this time. I feel terrible that she's gone through all this pain and stress and now we're in a worse position than we were when we began. Any surgery is a huge life stress and she is dealing with some emotional after-effects as well. She's clingy and fussy, struggling to sleep and has regressed with her potty-training. And of course she's in pain and is adjusting to a huge structural change in her mouth-and not the one we were hoping for! Her speech is very thick and muffled sounding. It's just heart-breaking. I also feel terrible that we have dragged the other kids through all this stress, juggling child-care, and missing out on summer fun for nothing.
But we have no choice but to move forward. It is what it is, and she's certainly not the first kid to have this complication. I've been reminded a lot lately of Ben's favorite verse:
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
So we will focus on that and keep our eyes forward for our sweet girl.We see the surgeon next week, likely we'll just have to give her time to heal and then have another surgery to repair the fistula.
Friday- feeling optimistic
Hungry, tired and stressed...
Surgery is not happening, but now she can EAT!
Crashed on the way home, she slept
6pm Friday-8am Saturday!
Back at it, Monday morning.
Finally gave in to a short nap.
The night is long, but thank goodness for Frozen.
A much happier girl on Tuesday.
Recovering at home.
Not feeling well again...