It has been more than awhile since I have been able to sit down, relax, and write as I love to do. I am grateful for this time to reflect, even in this setting. [...]
The plan I mentioned in the last update, has been working so well for our Sweet Ella girl. She is currently taking 78mls by mouth every 3 hours, so other than supplements she needs, her GJTube is not being used. WOW! She is gaining close to an ounce in a half every day and is happy as ever. Her tummy is finally satisfied and oh is she loving it. Yesterday, Ross and I went to Red Wing, MN to purchase a mini-van so travel will be easier… when we came back, the nurse was chuckling and tells us, "Ella is definitely a 4 month old, whenever we leave her bedside she immediately starts fussing and as soon as she sees my face, she gives the biggest grin". That might seem like something small, but being neurological damage was in question being she wasn't receiving proper nutrients to her brain, that was music to our ears. Our girl is truly a fighter, and she continues to amaze us with each step toward home. [...]
Many have reminded me that "God won't give you more than you can handle". It has been a statement that hasn't resonated or made me feel any better about what we are going through as a family. Just when I began wondering "How much more before we can't anymore", we were given relief. I now understand that saying. It stood out to me today. [...]
Just before the holiday began, my computer wouldn't allow me to access this website without a password from administration after being able to be on it for days before… quite odd I must say. So we waited till everyone was back today to get access again. I'll briefly go over these last few days![...]
Whew, today was a day we could all take a deep breath. Ella had a good good day.
Early this afternoon, the respiratory therapist, doctor, and nurses all extubated(Took breathing tube out, shut off sedative medication) Ella. The Doctor kept commenting on how "Fiesty" she is, and as they pulled the tube out she sure let them have it. They placed an NJ Tube to keep her digestive juices going, but she will continue getting most of her needed nutrition through IV. They also placed an NG tube which is sucking air/gas out of her belly, making her less distended. She seems much more comfortable today despite both her nostrils having many tubes in them. She is still on oxygen, post extubation for her safety. Her oxygen levels have been great so hoping to move her to room air tomorrow. [...]
I created this site to have a place to pour my thoughts through this journey, and a place for close family and friends to stay updated on Ella’s progress. It’ll be easier to keep everyone updated here rather than trying to answer everyone individually. Thank you for Remembering Ella and our family in your prayers. This journey has Tested our faith and patiences, but is teaching us to trust God and his plan. We appreciate you all![...]