Hello, sweet readers!
It’s been way too long since I’ve written. The wifi at our Ronald McDonald lodging has made reaching my site difficult (plus, there are days when all I do is enjoy Uriah and sleep!). 😉
I can’t believe that the last time I shared an update on Uriah was when he was 37 days old! He is now 3 1/2 months old and weighs 12.3 pounds! He has the sweetest personality, is happy and content, learning to play, and very curious about the world around him.
In the last several weeks Uriah has:
- Had 5+ dilation procedures on his esophagus. The dilations are stretching the scar tissue which built up in his throat at his TE Fistula repair site. We’re super thankful for these procedures because the scar tissue was cutting off his swallowing and he was having multiple choking episodes to the point of turning blue and his heart rate lowering. This issue is almost resolved and (!!!) we’re hoping he’ll having his last dilation procedure (at this time) this week.
- Had a tracheostomy. Uriah has Tracheobronchialmalacia. His airway is floppy and when he is sick, upset, or working hard to breathe his airway collapses. Children outgrow malacia but it can take years for the airway to stiffen so, to keep him safe in the mean time, he needed a trach to create a stable airway.
The trach didn’t fix things immediately. In fact, Uriah began to have more respiratory issues (plus, he was fighting a case of pneumonia too). It was a very scary time for us because he was having so much trouble breathing that his Carbon Dioxide levels were in the 130’s (normal is 40-50). The staff were changing his ventilator settings trying to find the “magic numbers” his body needed for support. We were getting to the point of him being given muscle relaxers so that he would not breathe on his own at all and depend on the ventilator just so the machine could help rid his body of the toxins building. Praise the LORD! the staff were able to find the settings he needed and he began to breathe much better and improve his CO2 numbers. The issue at that point was that his trach had a large air leak which needed to be figured in the vent settings.
Uriah did well but his lower airway began to collapse again; it got so bad that his right lung collapsed and the called a “code blue” for him. Thankfully, the Ear, Nose and Throat team decided he needed a longer trach. This proved to be so helpful for him! The original trach had been pushing into his trachea causing irritation, bleeding, and even building up of scar tissue. It was an amazing moment when the longer trach was placed. Immediately, he showed signs of breathing better and feeling better.
That was one week ago and he is still doing well! <3 We are so blessed by him. It’s amazing how he blossoms when he is able to breathe! The physical therapists are so impressed with how well he is holding his head up and the speech therapist is hoping he can try taking a bottle this week (right now he has an NG tube).
As of now, we’re still planning on being in the NICU till May or so.
- Dalton and I celebrated our 3rd wedding anniversary! <3 We had a great day going to the zoo, walking Forest Park, and going to a movie and dinner. I also turned 27!
It’s been a long journey. Uriah is now 113 days old. What a beautiful blessing we have been given!
Love, blessings, and coffee,