Surgery and Beyond

Grace's cleft palate repair surgery took place just over one week ago. I thought I would share a little about the experience and some photos throughout for those who are interested. First, the recovery room photos are a little rough. But, I want to post them for the benefit of other families facing this surgery. Multiple hospital staff told me that this is a really rough surgery for the little ones to go through. Of course, in the US, most children born with cl/cp have their surgeries before their first birthday. So, as children get older it is more difficult. By the way, did you know that cl/cp is the most common birth defect in the United States? Neither did I.

Of course, Grace couldn't eat anything after midnight the night prior to surgery. I got two packets of oatmeal into her just before bed. We had a 6 o'clock check-in time at the hospital so we stayed in a "hotel" connected to the hospital for families like us. (Our drive time from home during rush hour is an hour and forty-five minutes.) We went to the surgery waiting area and went through admissions. They called us back to surgery prep around 7:30. Thankfully, food and drink is prohibited in the waiting area because it is full of hungry children.

In the prep area they took her vitals, gave me a gown and footies to dress her in, and asked medical history questions. The surgical team and anesthesiologist came out to brief us on the procedure. And then, contrary to what we expected, they took Grace away from us fully awake. I later learned that it is safer to put a child her age to sleep in the O.R. Handing her over to the anesthesiologist while she cried and reached for me was one of the hardest things I've ever done.

Surgery took about 2 hours and 15 minutes and that included the ear tube insertion. About 15 minutes after the surgeon came out to tell us that all was well, they called us back to recovery. She was in and out at that point, very swollen, and her mouth was crusted with blood. She had a gauze pack sewn into the roof of her mouth, and a tongue "holding stitch". The holding stitch had a long tail, and was hanging out of her mouth. It was, essentially, something for them to pull her tongue forward with should they need to intubate her quickly. She was also wearing the dreaded "no-nos" (arm restraints).

We stayed in recovery for a couple of hours, receiving multiple doses of two different narcotics to help her come out of anesthesia with minimal pain. Before moving us to a room, they removed the tongue stitch.

The first night was long, I held her all night long. She was uncomfortable and groggy, sleeping for 20 minutes at a time. During the night she started itching from the morphine so we transitioned to plain Tylenol for pain, which she did well with. The next morning two PA's from the plastic surgery team came in and clipped the stitches on the gauze pack and removed it. This made her a bit more comfortable. It took me a good part of the first day to gently remove the blood that was caked on her mouth. The corners of her mouth were cracked and sore from being propped open for surgery.

Grace was very resistant to receiving any food or fluids orally. Initially, I was told not to push it because she would decide that she wanted it eventually. But, when the end of day 1 rolled around without any improvement, we were place back on an IV so that she would not dehydrate. They finally told me that I was going to have to force the fluids or we wouldn't be able to go home the next day either. So, the wrestling matches began.

As she got some food on her stomach, she started to perk up and be ready to play. Once they disconnected the IV for the second time, we went for long rides in a wagon around the hospital. She loved this, and took me out to the wagon for a ride every time she felt up to it. Because of the increased fluid intake, we were released from the hospital around 4:00 on the 2nd day after surgery.

It took a full 6 days post-surgery for me to find a way to feed Grace that didn't involve wrestling and tears. A liquid diet is just no fun for a toddler. A dear friend brought us dinner one night and for dessert she had pudding. Simple, Jello Vanilla Cook & Serve pudding. It is now what we call, the "magic pudding". I can add a little of it to anything and Grace will take it from the Brecht Feeder (A large syringe with a small rubber tube on the end.) So, sitting in her high chair, with a selection of small toys, she will now eat from the feeder. And, she is taking more than double the amount that she was before.

On Tuesday we returned to the hospital for a post-surgery exam and were given a thumbs-up for a successful repair that seems to be holding completely. We learned this week that our surgical team has the lowest occurrence of fistula formation (post-repair holes in the palate) in the world...how cool is that? We were also give permission to return to a regular diet and remove the arm restraints on February 2, which will be 14 days post-surgery.

Grace is doing really well now. She has moments of crankiness...but so do I! Her sleep is better now that she is getting more to eat, although the arm restraints are a bit annoying for her. She has spent the day today playing with her brothers, and even taking a walk in her first real Maryland snow. We are so thankful for all of the prayers, encouragement, and food that our loving friends and family have provided. We are truly blessed!