We got to the hospital at 6 am for check in. By 7:30 they were taking Maggie away for surgery, which was scheduled to begin at 7:45.
The first order of business was to replace her ear tubes as one was blocked and the other looked to be coming out. The ENT said cleft affected children on average will go through four sets of ear tubes.
Once that was done Dr. Peter Ray began her palate repair. He finished faster than we expected, in about four hours.
Dr. Ray felt good about how the repair went. She is at greater risk for developing a fistula since her palate cleft was so wide–13 cm. This is still a matter for prayer.
There was good news as well. The depth of the cleft was only 8 cm from front to back, which is less than what Dr. Ray expected, and it is good news for her speech development going forward. Also, she has larger muscles in the roof of her mouth than they thought she would have, which gave them more to work with…that was a direct answer to prayer! A fellow cleft mama had told me they were praying the doctor would find more to work with than expected during surgery, so we began praying for the same thing–what a blessing and an encouragement to see this specific prayer answered!
Maggie did well her first night. She drank a bottle of juice and even ate a good dinner, which was surprising. The surgeon said it is rare for kids to eat the first night after surgery, but Maggie is a tough cookie and she never misses a meal if she can help it!
She was pretty weepy and fussy, though, which was to be expected. The doctor said it would likely be a hard night for her, but it wasn’t too bad. She slept through the night, waking only when it was time for more medicine (every 3 hours) or whenever the night nurse came in to fiddle with her IV line, take vitals, etc. (which happened far too many times, in my opinion!).
We took her arm splints off for one minute to change her clothes and her hands went right to her mouth. The doctor would like her to wear then 24/7 for 3 weeks if she can tolerate it.
She did not want to drink her bottle the next morning but she was hungry. Breakfast was late in arriving so I gave her some chocolate pudding. It was a revelation to her! I do not usually give her chocolate as it makes her drool and it’s messy, but that was all I had at the moment so she loved her “breakfast of champions”. Later, when breakfast did arrive, she ate that, too. She was starving!
Day two was pretty challenging. Maggie was totally bored and ready to bust out of the hospital, but she still wasn’t doing well enough to come home. She got off the morphine but was still in pain, and still refusing to drink.
She was allowed off her IV a couple times for play breaks and that really helped. Ultimately she was released on Thursday, two days post-op. She is managing her pain but still not drinking. The doctor said some kids can go weeks without drinking–as long as she is eating a good pureed diet she will get enough fluid.
That makes this mama a little nervous, but so far so good. She still has tears, still pinks up when squeezed, and still has wet diapers. They say her drinking will come back like flipping a switch whenever she is ready, and that with this surgery it is much easier to eat than it is to drink. I can get her to “drink” a little bit from a spoon, but not much. She will also let me squirt a few swallows of juice into her mouth from a juice box occasionally, but not often. We have tried syringes, straws, bottle, cup, etc. She just isn’t interested–it hurts! But she is chowing down on smoothie, yogurt, pudding, ice cream, jello, and baby food. And she is happy to be home! This girl likes to go, go, go and she has the roam of the place here.
Thanks for your prayers. Please continue praying that she does not develop a fistula, that she will start drinking soon, that she can manage her pain, that she continues to sleep well at night (this was a HUGE issue after the last surgery and so far it is going great!), and that she can tolerate her arm no-no’s.