Not My Plan

We are home from our latest adventure in surgery and rounds of appointments. Maggie had her second syndactyly release on her left hand. She now is the proud owner of five little pudgy fingers. Still wrapped in gauze for the next month, they are there healing and preparing for use. The surgery went well. My greatest fear, the transition from our arms to the arms of the nurses went seamlessly, but not as I had anticipated.

We arrived to the hospital with Maggie and wiped her down with their special cleansing cloths, and put her into hospital pajamas. They tried to take her blood pressure but her crying made it difficult to get a good reading. She didn’t want anyone approaching her. We finally got her to sleep at 9:50am and awaited surgery at 11am. We kept her all warm and secure and she stayed asleep through the ENT’s assessment, and the plastic surgeon’s assessment but our last visitors woke her up at 10:50am. They were young, they were interested in Maggie’s case and wanted to “see”. I am not angry at them, but I was peeved. Maggie cried as they grabbed her hands to inspect them and she sat straight up eyes wide open and completely aware of everyone in the room. They apologized for waking her and quickly exited as she started to cry.

I wanted to tell them, “You guys ruined the plan!” As they left, one of our favorite doctors entered and I was put more at ease as she interacted with us. Four more nurses entered and it was time to hand Maggie over. I tried to get Maggie focused on something else by handing her the magnet of her own little face. Maggie took it and eyed the nurses. Carlos stood up and one of the nurses assured us that she had brought a toy to distract Maggie. I looked down to see the same toy that they tried to distract her with when getting fitted for her various helmets. She hated the thing 6 months ago and I anticipated the same reaction now.

Nothing went as I planned. We handed her to the nurse and she didn’t cry. We kissed and hugged her while she was in this stranger’s arms and she received them as if it was normal. She grabbed curiously at the nurse’s face shield and moved with her away from us into the hall. The last sight I had of her was of her staring back at us with complete peace and confidence. Not my plan at all. What happened was miraculous, I can not explain it to you other than to say that where there was once fear, we all had peace.

After surgery Maggie woke up easily. Her oxygen levels and all vitals checked out fine. I felt unprepared when they told us we could leave. We had our bags for an overnight stay, we had anticipated the usual low oxygen levels and abnormal blood pressure. Nope, she was good to go. “Here are her pain meds and antibiotics and call us if anything is weird.” Not my plan.

Maggie’s team all gave us great news: Maggie’s syndactyly release went really well, her head looks good and there appears to be plenty of room for growth in her skull. After her suture release at 3 months we had been told that she might need another surgery around the age of 2. Our plastic surgeon said that we at least have another year without surgery and she wouldn’t be surprised if we could go longer without it.

Our last appointment was with the ophthalmologist. This appointment took everything out of me. We had to hold Maggie down as they inspected her eyes and it was unbearable. I can handle pain, I can deal with it, but this was just so difficult. All said and done we got the good news that she has no signs of abrasions on her eyes (common thing for Apert kids because their eyes tend to be more exposed), she also had no signs of cranial pressure (another common thing), but they did discover that little Maggie will need glasses (another common thing).

Our goals and prayer requests:

In thanksgiving for God’s many blessings. For Maggie’s soft cast to stay on till Wednesday, Maggie’s continual healing of her fingers, Maggie’s arm strength and her ability to get into a seated position on her own, an easy process of getting Maggie’s corrective lenses/ specialty frames.

P.S. Lastly, thank you all. I tried to update on Facebook as much as possible but went silent for awhile in the midst of post-surgery craziness. Thank you all for being patient with me and giving us room to breathe and take care of Maggie. I know that everyone who prays for Maggie is eager to know her progress, and so I am even more humbled that you all gave us space to process and care for her and the family and get things back to normal.