Hi.

Welcome to my blog!

Diagnosis

image.jpg

Forgive me if this post is a jumbled mess... There's so much information running through my head that I'm struggling to put together cohesive sentences, forget correct grammar and punctuation! Or maybe it's that I'm waking up every few hours to pump for thirty minutes throughout the night?? Either way, I'm tired and there's so much information to communicate! 

First, Avery is a fighter. She keeps amazing us AND the doctors with her ability to adapt and overcome each obstacle and test thrown at her. Over and over, the doctors tell me, "We did not expect this from her. We only hope for things like this but she keeps surprising us." 

Two days ago, they started her on a paci test... And she rocked it. Somehow she's passing enough air through her nose to allow her to suck on a paci with stable vitals for ten minutes at a time. This is so confounding to the doctors because medically there is no reason she should be able to breathe through her nose. The CT scan says it should be impossible. The ENT physician who unsuccessfully attempted to re-scope her nose says it's impossible. Yet, somehow in the last two days, Avery has sucked on a paci AND taken milk from a bottle. She's worn out afterwards from concentrating so hard to breathe/suck/swallow but we're working up her tolerance slowly. 

Because eating from a bottle is such a strain on her, she's probably burning more calories than she's consuming so sometime next week the surgeons will put a g-tube in Avery's stomach. It's still important for her to learn to suck on a paci or nurse for neurological development (speech) and swallow food to avoid any food aversions later in life, but the g-tube will ensure that we always have a way to provide Aves with the nutritional support she needs.

The issue, however, is that intubating a baby with a critical, already compromised airway (she will be intubated during her g-tube surgery) will essentially destabilize her and potentially negate all the work she's done learning to breathe on her own... We may be at ground zero after the surgery. If that happens, she could surprise everyone as she always does, and stabilize herself or we may find that her airway is too compromised and she will require a tracheostomy.

She may require a tracheotomy procedure anyway... Avery is passing sufficient air through her mouth and nose NOW as a baby who lies in a crib all day, but as her weight and activities increase, so will her oxygen needs and her body may not be able to keep up. This could be a month from now... This could be six months from now. All we know is, a tracheotomy (which, upon returning home with Avery, will require 24 hr. nursing care for years... She would have a tracheostomy in place for years) is still in the picture and very much a possibility at this point. The other issue is that if Avery were to get sick and have any sort of chest congestion with her current breathing situation, it could kill her. We would REALLY like to avoid a trach, but may find that it's essential for Avery's longterm safety. 

Yesterday, the doctors repeated the ECG on Avery's heart and found that her lesion has not resolved as we had all hoped but isn't emergent and will require follow up in three months. 

Another concern that we're immediately facing is that a previous ultrasound of Avery's head revealed mild hydrocephalus (fluid around the brain) but today a repeat ultrasound showed that the fluid has increased. The neurosurgery team will have an answer for us in the morning as to whether or not they will implant a shunt in her skull to allow the fluid to drain. Totally bummed out by this...  Praying for a miracle. 

On a positive note, Cody and my babies have joined me in Chapel Hill! #PRAISE. After almost two weeks apart, we were able to move in to the beautifully finished, amazingly spacious basement attached to my dear friends' house a mere fifteen minutes from the hospital. It is WONDERFUL to be reunited again! When they pick me up from the hospital each day, being in their presence is like medicine to my soul. My family, parents and siblings included, and Jesus are really carrying me through this and doing an incredible job at it. One day I'm going to write a book about this experience and the all of the miraculous provision. God is really, really good. He never fails. He's never caught off-guard. He's never suprised. He provides, He heals, He loves, He comforts... As much as it hurts, I'm grateful for the fact that this experience has led me deeper into the arms of my Savior. 

Love to you all!  

Meg  

 Dear Crouzon syndrome, Avery would like to offer you a knuckle sandwich... Hehe. ย 

Dear Crouzon syndrome, Avery would like to offer you a knuckle sandwich... Hehe. ย 

Surgery #1

Choanal Atresia