I finally finished with school for the semester so I had one less distraction for a while. The week finished with more good news…
It’s been two months since Julie was born. This was the day she was originally projected to be born. So, it’s happy birthday, sort of.
This has been a week of firsts. Julie is now off the CPAP machine and on a High Flow Nasal
Cannula. She has her first toys. She laughed for the first time. She is over 7 lbs. She no longer has any tubes in her mouth.
I’ve attached a couple of pictures to show the difference between the CPAP and the cannula. Also, one picture shows how they had the CPAP way down on her face. It was really uncomfortable. Another picture shows the CPAP where it should have been all along. The last picture is of mother and daughter.
She started the cannula at 6 liters of air per minute and is now down to 4 liters per minute. She is getting a little bit of additional oxygen.
As I mentioned last time, she has been pulling out breathing and feeding tubes. On Thursday, she pulled out her feeding tube again. This time, though, the nurse put it up her nose and down her throat. Oh boy! Was she mad! She closed her eyes and wouldn’t look at the nurse any more. Later she had the cutest little frown…wish I had my camera for that, but I forgot it that night.
We talked to the doctor today and we got an overview of her progress and the next few steps. First, Julie has made tremendous progress, but she has a long to go, yet. Before she can go home, she needs to be down to about 0.3 liters of air per minute. Otherwise, she will need another operation to install a tube in her stomach for feeding and a tube in her chest for breathing. Like the previous 3 surgeries, this is a major operation, so she will go back on the ventilator, then CPAP, then Cannula, etc. Naturally, surgery will require 2-3 additional weeks of recovery, plus she (and us) will need to go to a half-way house so that we can learn how to care for her and her little “friends.”
They will give her another 2-3 weeks to evaluate her progress before making the decision, but they are leaning towards the surgery right now. Please continue to pray that Julie will completely recover and not need another surgery. Pray for our sanity, too. We were hoping that she was getting close to coming home, but now we realize that we still have a long way to go.
Thanks for all your prayers and support,
Andy & Sarah Horn
Julie received a 2 week reprieve from another surgery, but getting down to .3 liters of air per minute seemed like an impossible hurdle. Still, I remained convinced of my decision and to resist the tracheostomy. I felt Julie could do it. Now we needed patience while she grew stronger.