Our Cleft Lip and Palate Journey - The Lip Adhesion Surgery

-
If you've been following along with our journey through the last year, you know that our youngest son was born with a cleft lip and palate. I've been trying to document much of what we have gone through and our experience through it all. My hope is that our journey will help others, maybe you, with a similar journey someday.

You can catch up with our journey here, here, and here. Today I'm sharing an update on our first surgery with a cleft lip and palate. 
Since birth we have had weekly appointments with our cleft team and Rush has been fitting with a NAM and lots of tape. It's been quite the adventure. We knew that after 10-12 weeks of the NAM we would be reassessing Rush's progress and start making plans for surgeries. In mid-April we came to that point. 

After about ten weeks of religious taping and using the NAM, we had an appointment with both our orthodontist and our plastic surgeon. The surgeon came to check in on the progress we had made with the NAM and to make future plans. After examining him, our doctor decided to schedule Rush's first surgery for the next week. We knew a lip adhesion surgery was a possibility and at about 3.5 months they determined that it was the best next step.

A lip adhesion surgery is basically an in-between step to the full surgery. In Rush's case they were planning to stitch part of his lip together inside his nose and a little farther down. The idea being that tacking the lips together will help the face and cleft continue to move in a closed-down direction and slowly progress towards a symmetrical and uniform look. 

We found out we would be having the surgery just a week before they scheduled it, which was a blessing and curse. It was nice to only have a week to stress about it, but we also only had a week to mentally prepare. 

The hospital scheduled us for the first surgery of the morning since Rush was the youngest patient of the day and they were trying to keep his fasting time brief. The hospital called us the day before we were due in to tell us our pre-op instructions. Rush was allowed to drink formula and milk until 2 am and then only clear fluids like Pedialyte until 5 am. I was a little nervous to give Rush Pedialyte, but he loved it. I mixed the clear, non-flavored variety with the mixed fruit flavor and he drank a good 4 ounces before his cut-off.

I knew I would be staying one night with Rush so I packed an overnight bag for us, including our own bottles and formula. I wasn’t sure if they would have his typical formula and I ended up being glad we brought our own.

We arrived at the hospital at around 7:30 and got him all checked in. Despite not being able to eat much during the night he was in a good mood. We distracted him by playing and he really didn’t fuss. I had been very worried about him having to fast, but it ended up being no big deal.
We met with the anesthesiologist and our doctor beforehand to sign paperwork and get an overview of how the surgery should go. Basically, they would be putting Rush to sleep and then surgery was supposed to take about 45 minutes. Because this wasn’t the full surgery, the main goal was to put a big mass of stitches in to hold the lip sections together for the next two months. Thankfully, one of our friends from church was the anesthesiologist on duty. We were able to send Rush back in his arms which felt a tiny bit better than just sending him with a stranger.



They took Rush back and sent us to the waiting room. It really didn’t take long. We waited there for under an hour before the doctor came back to let us know how things had gone. I felt calm during the entire surgery and I’m thankful for that. The report came back great and they took us back to the recovery room.


It was strange to see our little guy laying flat on the bed asleep, in a hospital gown and hooked up to a bunch of monitors. I guess it's because he is always swaddled when he sleeps, but he definitely looked bigger and different laying flat on his back with his arms all sprawled out. We stayed with him in the recovery room for probably 45 minutes while he kind of woke up and they monitored him. We found out from the nurse that he had stopped breathing for a few seconds between the OR and recovery. Thankfully, it wasn’t long and he was fine, but apparently it was a bit of a panic while it happened. I’m glad I wasn’t there for that part!



They rolled Rush’s bed to his room in the hospital for the remainder of his stay. I should say Soren was with Rush and I all morning and I’m so glad for that. We had friends help us with the other kids and Soren stayed at the hospital for most of the surgery day. He was able to get me lunch and I stayed by Rush’s side for almost the entire day.

Waking up from anesthesia is hard for everyone, but everyone responds differently to it. I was most worried about how Rush would do and he didn’t do great. For the first 12 hours post-surgery he cried and cried and cried when he wasn’t sleeping.  The nurses we had were wonderful and helped so much. We ended up giving Rush more of the prescription pain meds rather than sticking to just Tylenol post-surgery. He was able to sleep better and by the evening he was waking up feeling a little more like himself.

We were able to go home the next morning as long as he was eating and the doctor gave the okay. We used a syringe to feed him Pedialyte again post-surgery and we tried to give him the pre-mixed formula, but he wouldn’t take it. It was the same brand as our everyday powder, but he didn’t like the liquid version. Once we switched to our powder he started eating at some point in the night.
As far as recovery went, we were instructed to keep him eating but to keep the bottle nipple away from the stitches. We had to move it to the corner of his mouth. He also had to wear arm restraints called “no-no”s for a few weeks. We kept them on much of the time, but when we were holding him or watching him closely we took them off.



We had a post-op appointment about a week after surgery and things looked good. Rush’s lip did bleed twice after surgery and both times I texted our doctor freaking out. One thing that he reminded me of is that “recovery isn’t linear.” There will be ups and downs throughout the whole process and we will handle them as they come.

Overall the surgery went well, but unfortunately, we fell in the 10% of lip adhesions that actually come undone. Rush’s stitches came apart about six weeks after the surgery. I was cleaning it out and changing his tape and it had popped apart. The fishing line stitches were still visible on the one side of his lip, but the other had come clean apart. No blood, no trauma, and no crying. It just popped apart. So we called our doctor again and he decided to move our final lip/nose surgery up. It had been scheduled for mid-August and we moved it up to the beginning of August.


Until then we have just been taping his lip and enjoying having a break from so many doctor appointments! The NAM wouldn’t fit in his mouth or nose after the lip adhesion surgery and so the team decided to leave it out. They also didn’t fit us for a nasal clip because of how tight his lip and nose were pulled by the stitches. Luckily, we had already made a lot of progress with his nose and the NAM in his first few months of life so we should still get good results in the end.



Our full lip/nose surgery is scheduled for August 3 and while I’m not looking forward to it, I am. The cleft journey certainly won’t be over, but we’ll be a huge step closer. Thanks for all of your love and prayers and support. We feel them and we’re so thankful to have so many people cheering us on. We're excited and anxious for the coming week. Thanks for caring and coming along for the ride!

2 comments

  1. Thanks for sharing your story. I have grown to love this little guy, and the rest of your family. You're in my prayers. XOXOXO!

    ReplyDelete
  2. Best wishes to you Kilee! Thank you for sharing your story and inspiring spirit with us.

    ReplyDelete

Thank you so much for taking the time to comment!

Powered by Blogger.