Tuesday, March 4, 2014

Sending my Three Month Old in for Cleft Repair Surgery

Last month we took Elly to Medical City Dallas to have her soft palate repaired. Though we'd been reassured that it was a fairly simple surgery, I was still nervous. It meant putting a baby under anesthesia. I'd also heard comments about "bad repairs", and so I knew that repairs could be done well or not so well, and that how well it was done would affect her speech later on. In that last week I took her everywhere with me, even if others were available to watch her. I just didn't want my peaceful sweetheart far from my side.

The morning of surgery Elly was mad as h*** to be awakened early and not fed. I figured she'd be a screaming baby for three hours until they put her under. I was completely amazed that after falling asleep in the car on the way to the hospital she woke up when we arrived at the hospital and was calm and smiley and wiggly and delightful all through the waiting period. In the pre-op area I was walking with her and she fell fast asleep in my arms five minutes before they came to take her. I got to pass a sleeping baby off to the nurse with no trauma. I really feel like people were praying in those moments, and God answered.

Across from us an 8 year old boy was going in for a repair on his palate, and he and his mom both showed cleft lip repairs. Next to us was a toddler with multiple symptoms who was going in to sew up a repair that had reopened. She had a seizure while waiting in pre-op. I was reminded that Elly's cleft is relatively simple.

Elly was in surgery for a few hours. Coming to her in post-op was the most traumatic part of surgery. She was completely limp and white as a sheet, her hair and scalp orange from a disinfectant that they put all over her head. Her mouth was bloody, tubes and wires all over her, and her tongue had a stitch in it that was taped to her chin to keep her from swallowing it. That's where I almost cried, but instead held my limp baby for hours as the nurses tried to wake her and she stayed firmly under the anesthesia for longer than they expected. That was okay with me because everyone comes out of anesthesia miserable and fighting. When she eventually did start to come out of it, she was manageable but oh so sad. Over the course of that day and the next two, the hardest thing was when she would wake up and her eyes would go wide with pain and shock. At first all she would do was give terrible soft moans, clearly afraid to use her mouth, swallow, etc. I don't blame her. They'd sewed up everything in the back!

I stayed that night in the hospital with Elly, spending most of the time swaying with her, because the only thing she wanted was to be held by momma. My back and shoulder were so sore by the time we went home, but oh, that's all I wanted to do. Just take care of her. It was a relief to have the IV and monitors taken off so that she was at least cord free.  It was a surreal night, mostly awake but sometimes dozing in the dark with her carefully cradled, avoiding pulling on all the cords, with my phone and kindle and water and pump in arms reach. There are a lot of nights watches as a mother, and it is a constant conversation of prayer for her.

But you, Lord, are a shield around me, my glory, the One who lifts my head high. I call out to the Lord, and he answers me from his holy mountain. I lie down and sleep; I wake again, because the Lord sustains me. Ps 3:3-5
After the tough day at the hospital, the first few days of recovery were relatively easy because my mom was around helping us and Elly slept most of the time. A week in was harder. For ten days Elly could only eat from a syringe with a soft tube on the end, and she hated it and was not eating enough. That and the transition from prescription pain meds to Tylenol made her a very miserable girl for a couple of days. She was inconsolable all the time and we just took turns walking here as she cried and cried. Once she was back on bottles, she perked back up into happy Elly. She is healing well, but the surgeon is still watching to make sure it fully heals and doesn't reopen.

And.... the most amazing thing is that when the surgeon came to tell us about the surgery, he said they were able to fully close her palate. They had expected to close the soft palate and fix the hard palate at about two years old.  Instead they were able to fully close the cleft with just soft palate tissue, and the only reason she'd need a second surgery is if it reopens or if her speech development later on requires it. I didn't even know that was possible (though Isaac seems to have understood, so maybe I just missed something??), and I am SO thankful.


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