Well, it is once again the night before another surgery for our girl.
SO much life happens between surgeries, yet it often feels like we were just doing this yesterday.
We just got the kiddos asleep in their beds and now my eyes are filled with tears... both of thankfulness and because this is just hard.
Going through this really makes you contemplate a lot about life. While it is so difficult, there is also
so much more we are thankful for. So thankful for our warrior girl. So thankful for the MIRACLES God has done in her life and ours. So thankful for this amazing medical team. So thankful she is able to have this surgery tomorrow... that her airway was cleared for another surgery. So thankful she is breathing on her own. So thankful she is driven, determined, and has a spunkiness about her that keeps her going strong.
Our girl was quite nervous today...
The "day before surgery" feels so long. Anticipation of what is to come, and she knows all the details without a full understanding of why it is all happening.
We started out our day at our hotel about an hour outside of Philadelphia. We got to have a slower morning. We were able to listen to part of our church's service online before we had to pack the car and head back into Philadelphia - closer to Children's Hospital here. Loved getting to celebrate J today - HAPPY FATHER'S DAY to our fav guy!!!!!
We got to our hotel and got right into playing, singing, games, reading books, dressing up dolls - all the things that help our girl feel at peace :)
Isla knew the first real "step" in surgery happening is the CHG wipes we have to do the night before surgery. While she has had to do this countless times, her anxiety is quite triggered by this - it is the sign that surgery is actually happening. We decided it was a good idea to make sure that Stella, Isla's dolly, had her CHG wipes, too. It is amazing how playing through a scenario really helps Isla when having to face that scenario herself. It was precious to watch Isla - carefully taking one of her reading books and pretending it was the instructions on how to do the CHG wipes on Stella. She gently talked through each step with Stella, and she was so sweet with her dolly. When she was all done, she told Stella, "you are so brave! You did it!" By playing through the steps, it gives her a different perspective and understanding. It is just so sweet to see Isla's growth in her processing. Doesn't make the situation easy at all, but every little detail helps her feel support as she goes through all this again. Anxiety is very real and difficult, but support through it makes all the difference.
Stella dolly is "just like Isla". She has a beautiful heart, a g-tube, and "surgery lines" (scars) just like Isla. This dolly has helped Isla feel less alone in the journey.
Isla and Zeke had some of their fav foods for dinner and a special slice of cake for dessert!
We had some really good quality family time tonight. So thankful.
We are praying Isla can have a FULL and peaceful night of sleep.
Tomorrow, June 16, Isla's check-in time for surgery is 11:30am EST.
This surgery is a VEPTR expansion surgery - expanding her current VEPTR rods. We are trying to get as much length as we possibly can with these VEPTR rods before having to replace them with bigger rods. We are hoping Isla will just have to stay one night in the hospital.
Will you please pray for Isla - for peace in her mind and heart. For her to feel brave and strong.
Please pray for us and all the medical staff to be a support for Isla as this is not just a physical journey, but an emotional one as well.
Pray for Dr. Anari and the medical team, the anesthesia team with intubation, and all the nurses we will work with. Please pray for great communication with all the teams.
Above all, we praise God for this precious girl and trust in his sovereignty for each day.
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