In the past few days we've received answers for most of Aves' testing, both good and bad. Thankful for LOTS OF GOOD!
Hearing: Her hearing has not officially been tested but the CT scan showed normal ear canals. That may change as she grows and she may still require surgery at some point, but they see no reason why she wouldn't be able to hear at this time. #majorthumbsup
Eyesight: The pediatric ophtamologist examined Avery yesterday and found her to be exhibiting all normal newborn eye activity but will need to be monitered every few months. She may require eye surgery after her skull surgery if her eyes are not "tracking" but the doctor assured me that SHE WILL HAVE SIGHT, thank you, Jesus!
Nasal passages: The pediatric ENT's do not believe Avery is a candidate for surgery to correct her choanal atresia right now. We need to wait for at least several years of growth. Right now, her entire nasal system is just too small to manipulate and they believe the surgery could cause more scarring than improvement. This leaves us with a problem... How, then, do we get her enough oxygen and have her in a situation that's stable enough to take her home?! Right now she still breathes on her own, but is continually attached to moniters in case she begins to have an "episode" (oxygen desaturation) during the night. Also, she is still being fed through a feeding tube which is not a long-term nutrition solution. Obviously she doesn't need to live in the NICU until she's grown more so we've begun exploring options and doing trials to simulate an "at home" situation, i.e. open crib, sleeping flat on her back, etc.
With some babies who have Crouzon syndrome, it's immediately necessary to do a tracheotomy (surgical procedure to insert a breathing tube through the trachea) because they clearly cannot breathe with assistance but in Avery's case, since she CAN breathe through her mouth and hasn't had an "episode" in 4 days the ENT's decided to try a less invasive idea...
Several times I noticed that Avery would close her mouth and occasionally appear to be breathing through her nose. The doctors assured me that the ENT had found NO EVIDENCE of this during his exam but I maintained that I knew what I saw and she was rechecked. Sure enough, I mentioned it again to one of the passing attendings and when he checked could hear airflow through at least one of her nasal passages as though there were a possible pin-hole through the bone.
On Wednesday, ENT decided to try steroid drops in her nose to see if some of her blockage was due to mucous or inflammation but warned us not to get our hopes up. He "didn't think it would work" but that we should watch for air bubbles or mucous discharge when she sneezed. Every day since, we have seen both bubbles AND mucous. Thank. You. Lord. The same ENT physician (who was a little annoyed with me that I said I thought she was breathing through her nose when he was so convinced that she WASN'T) came to examine her again yesterday and was able to see for himself how she would close her mouth and breathe solely through her nose. *insert happy dance emoticon* Boom! The doctor said, "Sometimes mama knows best." He plans to rescope her nose on Monday but I THINK we may have avoided the tracheotomy option!
Feeding: While it seems like we've solved the temporary breathing plan with the steroids, we still have to tackle how she will feed. First, she'll have a paci test to see if the airflow through her nose is sufficient for her to be able to eat and breathe simultaneously. If not, then they will insert a G-tube.
Side note: for all the mamas praying for my milk supply, YOUR PRAYERS ARE WORKINGGGGGGG! I'm on that "feed the entire NICU" status with my milk production. The lactation consultant even recommending reducing my pumping time because I'm such a major producer, unless I'm interested in donating. Though, if I HAVE the supply, I'd much rather pump way more than Avery will ever need to be able to donate! All the milk donated to Laura last summer was such a gift to us. I would love to do that for others.
Heart lesion: The cardiologist believes Avery's heart defect could be something that may have already resolved... Womack will follow-up with another ECG in the next few weeks.
Duplicate kidney: Avery had an imaging procedure done to check the status of her duplicate kidney and everything came back wonderfully, no reflux and everything is "emptying" the way it should. Womack will follow up with a kidney ultrasound to monitor.
1. Please pray that the steroids continue to work and that Avery can avoid the tracheotomy (very dangerous, very invasive, serious recovery time).
2. Please pray that the airflow through her mouth/nose with the steroids is sufficient for Avery to be able to nurse! I am ACHING to be able to feed my baby! SO grateful that I'm being able to provide all of her nutrition through her feeding tube but it's just not the same.
Thank you guys for praying, sending messages, packages and meals. You all make Jesus look GOOD!