We officially have what is known as a "trach baby".... And she couldn't be cuter. *insert heart eyes*
I wanted to write a post and give some information to anyone who is wondering why we decided to go ahead with a tracheotomy for Avery and what it means for her long-term.
Placing a tracheostomy has always been on the backburner, as I've mentioned before. Avery was initially very stable, breathing on her own, as a newborn. She mostly slept and when she did so, would easily move air both through her nose and mouth. We discovered that, as she grew older, she was becoming increasingly agitated by her struggle to breathe. Extra saliva (probably from teething) was thrown into the mix and Avery would choke and gag repeatedly. She began refusing her paci and was mostly inconsolable 24/7. I noticed that she was missing developmental milestones. Two days ago, we called the doctors at UNC to try moving up our previously scheduled ENT appointment, saying that we were interested in pursuing the trach, and she was scheduled for surgery right then and there. When we reached the hospital, we were greeted over and over with the sentiments, "We're glad you decided this." "This will be the best thing for her." "She'll be like a new baby." etc. Having a tracheostomy in place will also make Avery more stable for future surgeries, like her fronto-orbital advancement that she'll have during the fall. With her airway in its previous state, there would always be a risk that Avery could simply stop breathing on the operating table or after any attempt to extubate her. Overall, having a trach is a somewhat safer option. We believe it will ease some of her sleep apnea, if not cure it completely.
I'm sad that the trach was necessary... Heck, I'm sad the g-tube was mecessary. I'm sad that spending most of Avery's life in the hospital has been necessary. I'm sad, but this isn't about me. Ultimately, Cody and I weighed the risks and benefits and decided that no matter what the cost to us and our lives for the next few years, Avery's comfort reigns supreme. Her quality of life is our priority. In talking with other families of trach babies, we've heard repeatedly that, while the decision was scary at first, their babies have thrived because of the trach. We are praying this will be the case for Aves.
So what does this mean?
1. Avery's trach is temporary. Our ENT doctor believes it will be in place for 18 months - 2 years. She won't be able to vocalize at all initially (even crying audibly), but, as she grows older, may be able to switch to a trach that allows for some speech. Friends that know how to sign, give me some tips! That will be our main avenue for communication with Avery for the next couple of years.
*Side note: The doctors noted how powerful Avery's lung are... Within hours of her surgery, she was making noises and crying sounds. She is able to breathe through the trach and also push air up and around it to voice her displeasure. That takes strength.*
2. Until Avery is decannulated, she has many limitations, since any blocking or compromising of her trach would be devastating. She can't play in a tub or pool, be near a sandbox or the beach (though, there's been mentioned that a trach filter that may allow her to, while not PLAY in the sand, be in the presence of sand), etc.
3. Avery will require lots of in-home nursing care. This is a little daunting to me, personally, as not all nurses are created equal. We're praying for a good long-term nursing fit that will be able to blend well with our family.
4. Avery's situation is still tenuous. She still needs to avoid being exposed to illnesses and bacteria. Traveling will be limited. She will spend most of her time at home. Play dates for the other kids will be restricted and overnight guests will be out of the question, as we don't have the space in our house for Avery's equipment, nurse and the rest of our family. It's a sad reality that will change one day!
5. Avery's trach may allow her to discontinue using the g-tube. We will be doing a feeding trial after her first trach change in a week or so. The ability to nurse and comfort Avery would be an incredible blessing to both me AND her. I am PLEADING with the Lord that He will allow her to adapt to oral feedings (nursing or bottle feeding).
Again, thank you for caring about and praying for our family!
P.S. Please do not take and post pictures of my children. Thank you!