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!

This Little Piggy

We have a surgery date for the removal of lil miss Brinley's extra toes (and endoscopy).  Feel free to put it on your calendars so you remember to pray- Friday, January 16, 2015. Woo-hoo? Ever since Brin's birth we have been joking around that there needs to be a new "This Little Piggy" song to account for the 6th toe. Anyone feeling creative?

This little piggy went to the Dr
This little piggy stayed home
This little piggy had therapy
This little piggy had none
This little piggy played the piano
This little piggy went wee-wee-wee all the way to the bathtub.

OK, so someone out there can do better than that...submissions can be made in the comments section below ;)

Brinley is currently obsessed with her hands.

Cailyn turned 6 earlier this month and requested a Frozen party. 

Of course she was too busy to let me take a picture of her. 

Nurse M still loves Brin :) 

Melt my heart 

The girls celebrating my grandfather's 90th birthday

Alessa, 2 going on 20 

One of Brinley's favorite places on the planet 

CORE Physical Therapy (Seriously, if anything hurts, go there.) 

Hands and knees during PT the other day! 

Further proof that we do have the best nurses. 

*permission was given to post these pictures ;) 

Happy early Thanksgiving everyone! Thank you so much for praying for us these past 7?! months. We are grateful for each of you. Stay safe and warm!

A Long Awaited Video Update

Herein I reveal my utter need for a shave and a haircut whilst sharing how our little Brinley Noel is doing. I do this using the most advanced of techniques known as the selfie video which wert then uploadethed to the YouTubes for worldwide distribution. Please enjoy and continue to keep us in your prayers!

So a paci, a passy and a trach walk into a bar...

Just thought I'd share that Brinley's trach came out today for the first time :) Yes, we can smile about it because she was fine and we're much more comfortable now with all her crazy stuff. Lessa and Raina were moving her around and picking her up so that's probably how it popped out. Here's how it was discovered:
Sarah: Hon, Brin is making noise even without her passy valve (spoilers) on!
Me: (thought bubble - that doesn't sound right. I should go look) Umm, hon, her trach is out.
Sarah: (laughing)
Me: Hey, could you help me with this.

Brin also got to facetime her cousin that is just 3 weeks older than her. They chatted for a while. It was cute.

Enjoy these 2 videos. Both are milestones.

Thank you nurse J for my first good night of sleep in 2 weeks!

5 Months of Brinley (now that she's almost 6!)

It's been so long since I last wrote to you all that I don't remember what I need to include to bring you all up to speed so if I repeat anything you already know please forgive me. 

I'll speak mainly in generalities for this post since the days are starting to blend together with some great days sprinkled in with a lot of very draining ones. Most of the time we're just trying to survive the day but we're beginning to get to the point where we can think about conquering them. We are so thankful for God's grace through this insane adventure, without which we would surely by now have regressed to living like feral beasts (just feeling melodramatic). And now, bullet points!

• Brinley is killing it with her PT, getting stronger and more mobile
• Surgery for her feet (ENT will do the endoscopy at the same time to plan the mouth surgery) is down to two possible dates and we will have details soon
• A new favorite word of mine is perspicacity
• We're starting to feel a bit isolated so we'll have to start getting creative
• Speech continues to be challenging due to Brin's tongue. She is finally starting to enjoy the sessions at least. We have smashed our previous record of two good sessions in a row!
• She has now switched from Ranitidine to Omeperozole to manage her reflux
• Brinley is getting huge. Around 18 pounds now.
• We have three nurses now and are getting all of the day time (plus two evenings a week) hours that we want. Please pray for a night nurse to step up! We seriously need sleep.

Picking out her own toys- thanks nurse C!

Sneaking applesauce (don't worry, suction was nearby) 

First time grabbing a toy by herself! 

Brin has the best team of therapists around

Naptime with nurse J 

5 Months old 

Nurse "M" can not get enough of us. 

She used peanut butter to get a whole ton of tiny burrs out of Raina's hair- on her day off! 

My mom has a theory that nurse M comes to get stories to pass along. Not a bad theory. 

First ever ballet class for Alessa 

Our Family 

(Thank you Picture My Heart Photography for another beautiful session!)

Big sisters making sure Brin was dressed to impress before hanging out with her friends 

Little loves 

All the "D" cousins apple picking 

You light up our lives

*From Sarah- Peter will post a double video update soon. There is one thing we left out of this post that Brin wants to show you herself. This update has been almost two weeks in the making already..... and I know you all have been waiting to hear and see more! Thank you again for hanging with us on this journey. Please continue to pray. The big sisters have hit a rough patch. We have been "screen" free for a week to see if that helps settle things down. We know they have been through a lot this past year as well and are trying to have a mixture of firmness and grace.