Out of surgery

Brinley is currently sleeping in the PICU and slowly returning to her normal self. She even gave me some great smiles.
The toe surgery went excellently, probably as good an outcome as could have been hoped for. On both feet the surgeon wound up removing the inner big toe and no extra skin grafting was necessary.
For the laryngoscopy everything looked great in her airway. No scarring and a lot of good growth. There was always the question of the epiglottis and the short answer is she has one but it is small. We're still not sure of the long term functionality of it but it's good that it is at least there.
As for her tongue, the news is not as good. It is still very underdeveloped in the musculature making up the base of the tongue so the surgeon would not like to do any reconstruction for at least a couple more years to give her a chance to grow and have it strengthen and develop more. This was a little disheartening to hear but based on what she saw and where the tongue is now it certainly is the right way to go about it. We also have a clearer prayer target for God to heal her. Pray for the tongue musculature to grow and strengthen!
It was great to hear the ENT say that he was very confident that she could breathe without the trach when she is awake; it's still the question of the tongue blocking the airway when she's asleep if it flops back.
We really could feel God's presence all day and He started us off right as we were walking into the hospital and saw Brinley's NICU primary, nurse M walking about 30 feet in front of us. She was able to come down and get some Brinley cuddles and stares as we waited in the pre-op area. Then, after we got through paperwork and handed Brinley over to go into the OR, we went down to the cafeteria and ran into one of our favorite people in the world, M (I'm gonna go ahead and nickname him "Tire Iron" here. He should know why). Later, we got to spend some time talking and praying with another awesome man of God, G (nickname "Chaplain"). Then my Aunt and Uncle (also our pastor!) visited for a while and got to be there with us when the surgeon came out from operating on Brinley. We also got to visit with some other NICU nurses of Brin's and another awesome woman, the esteemed L (nickname "Reading Rainbow").
So I guess the good news about tongue reconstruction being a couple years away is that she shouldn't need any kind of surgeries or procedures for quite a while. Looks like we'll be learning sign language and teaching Brin until she is able to learn how to talk so that will be fun.
Sarah and I are tired but doing really great otherwise. I credit all the prayers and we so appreciate everyone's encouraging texts and comments and those awesome prayers! Please don't be offended if I don't respond to your texts but I read them all and love hearing from you all!
Brinley will likely be staying the night in the PICU but we'll in all probability be going home tomorrow! She's still on the lethargic side but is finally getting a good nap now and is starting to get back to her normal self. She's on pain meds of course and those will continue for a few days.
Love you all and we'll keep your posted on her progress. If you weren't comfortable around a trach baby before we'll get you used to it :)

Surgery Day Tomorrow!

This will be a short post to remind everyone that tomorrow, Friday, January 16th is Brinley's surgery to remove 20% of her toes (50% of her big toes). I just wanted people to be praying particularly during the hours she is actually in surgery: 7:30AM is the start time and she should be out by around 11:30AM. The endoscopy will be first, followed by the toes.
We were actually told that this surgery is sometimes done out-patient, meaning she would be going home the same day but we're hoping they'll keep her at least one night for observation and to make sure all is well. Our other 3 girls will be well taken care of as Sarah and I spend all our time with Brin at the hospital. Many thanks to family and friends!

So don't forget the "Toe-Chop Prayer Watch" tomorrow 7:30-11:30AM! I probably shouldn't call it that and my wife will probably say something like "I can't believe you put that on the blog" but what can I say? I'm impetuous.

January 16- mark it and pray!

Merry Christmas, Happy New Year!
It has been a while. Honestly, I have been in a bit of a funk. It's pretty understandable and I am starting to feel better now. I don't really want to get into that, so moving on to better and cuter things!

Brinley. She's 8 months old now. Had her first Christmas and New Year. Pictures will come shortly. Medically speaking we have a few tidbits. The biggest thing is that she has her third surgery coming up on Friday, January 16. It will be sometime in the morning. Please pray for continued health for Brin so surgery is not derailed. Also, for the Doctors and Nurses who are working with her to be on top of their game and blessed just by being on Brin's case. She is expected to be recovering in the PICU for 2-3 days. All visits from NICU friends are welcome! The big girls will be well cared for and loved on by both sets of grandparents. Please pray for peace that passes understanding as we hand over our little baby for her longest surgery yet. Pray for a very quick recovery. This is an intense orthopedic procedure (they are removing one toe from each foot, a skin graft will most likely be involved too) and we need full function and circulation! Also, our ENT will be doing an endoscopy at the same time since that also requires general anesthesia. We will finally find out what is wrong in her mouth and airway...a little nerve-wracking!

Brinley has been off of her robinol (the medicine that was helping manage her secretions) for about two months now. The first weekend she needed constant suctioning but was not aspirating, so we let her try to figure it out. At this point the amount of suctioning that she needs is about the same as it was before we stopped the meds. Her eye movements have slowed down considerably but
are not completely gone- please pray that they stop completely! Because her eye function is so much better she's starting to catch up with physical and mental milestones. The physical and mental are so closely linked that it is still to hard to tell if she has any developmental delays. A special education therapist has just started working with Brinley and she's great! We are very hopeful that Brinley will continue to develop as she has a LOT of feist and personality! Our latest nickname for her is Squidge. When she's particularly rambunctious we'll say she's very "Squidgey." Lil girl is so strong and squidgy tonight that I just saw Peter giving her a ride in the air with just one hand under her bum! Her strength is fairly dependent on how healthy and rested she is (a low tone thing).

Merry Christmas- she's sitting! 

Staring at hands is still one of her favorite games

Jamming out to "Jingle Bells, Cailyn smells, Lessa laid an egg, Brinley lost her chimney top (Alessa's term for her HME) and Raina took ballet!"

Sleepy girl

She found her toes! 

I promise we will do an update after Brin is awake again and we have talked to Dr M about the endoscopy findings. We will do more post-op updates as well. We are very excited that our isolation is coming to a close. That has been really hard. On all of us. We are planning to give Brinley a week or two of post op recovery and then we will be back at church and a little more social. We can not wait! 

One last thing. A little video clip of Brinley with her passy muire valve on. Worth a minute or two, I promise!

Thank you all for your prayers! We serve a mighty God and I can tell you that we would not be anywhere near as functional and sane as we are without Him!