Brinley Noel: Surgery #4 Impending

Mark your calendars, set you cell phone alarm, Tuesday, March 29 around 7:00am Brinley will be heading into her cleft pallet repair. This is the longest procedure that she has undergone. She will be away from us for about 5 hours. We are anticipating a 3-5 day inpatient stay as well. They are planning on putting her on a regular pediatric floor...we shall see. (check out the last post for more info)

Specific prayer requests in regard to surgery:

*The big girls are more aware now and so have been expressing concern about the procedure itself, missing Brinley, missing us, etc. We have some fabulous friends and family lined up to take care of them and even more of you wonderful people bringing meals. Please pray for peace in the girls hearts and minds. Also, Alessa will be starting pre-k that same morning! While I am very sad to miss bringing her on her first day she will be in good hands. Please pray specifically for her to adjust well.

*Peace for Brinley as she is much more aware of her world now than she was during previous hospital stays. We know some people who know some people and were able to get Brin set up for first case that morning. This helps us have more time to gown up and carry Brin into the OR ourselves. There's also a note on her chart that should allow us to see her sooner post-op than usual. Probably because we're used to ventilators and groggy/post-op Brin.

*Great wisdom and excellence for our surgeon, Dr A. She has an excellent reputation, a lot of experience and we feel as well as we can handing our little girl over to her.

*Wisdom for the PACU staff in their post-op care and making the final call about which floor she should recover on.

*Speedy recovery. Since Brinley's tongue is so atypical it is difficult to foresee how the procedure will affect her short term. There could be a lot of swelling which combined with her exhaustion (which causes her tongue to flop back) and pain could make the tongue rub right on the incision. This would be painful to say the least, however with Brin could also mean that she has to rely exclusively on breathing through her trach. At our last ENT appointment he told us that she was breathing through her upper airway quite a bit and if she was truly trach dependent she would need a larger trach size...So, I wonder, will we need a bigger trach? Will oxygen supplementation be enough? Will she need a ventilator? Thankfully, Dr M (her ENT) is aware of the potential complications and has assured us that we shouldn't worry, he'll be around and has a few ideas of how to help. Thank you God! So, we're praying for supernatural healing and quick positive results regarding tongue positioning, swallowing (secretion managment). tolorating food and moving her bowels.

Thank you to each and every one of you for praying for our family! Somehow, even after 3 other surgeries it doesn't get any easier or more "normal." We will make sure to update the blog after we meet with the surgeon and see our little Brinley.

Outside of surgery it has been two months of growth. Brinley is truly blossoming! Despite a respiratory infection and stomach bug (which hit all 6 of us!) her signing vocabulary has grown exponentially, vocalizations when the passy-muir is on are much more varied and frequent and she's making great gains in the walking/crawling department. Nurses C & A are still with us and we're so blessed by both of them! The big 3 girls are growing like weeds too, both Cailyn and Raina have teeth missing and are just too cute!

God bless each and every one of you that have journeyed with our family for almost 2 years! Yes, we will be doing a scaled down "open house" birthday party for little miss again this year. Details are still in the works, but you're all invited! I shall leave you with these...

That time I poured my coffee into Brin's daily feed batch..