“Ari looks good but she has a big head.” Matt’s quote after he went and saw her after his leave of absence. Matt is doing much better, a slight cough, but definitely much better than the previous 2 weeks. We’re getting back on track. Ella didn’t have the best day today, though. She woke up at 4am and pretty much threw fits throughout the day. She is definitely exercising her independence.
Ari apparently has a thing for Dr. Jennings, the surgeon. I was at her bedside when the doc showed up to do the daily tensioning (read: stretching the esophagus). The nurse had just turned her on the side so he’d have access to the sutures but he got paged and left for a few minutes. The nurse, noticing Ari was bubbling at the nose, decided to take this time to suction her (not very intrusive). Ari’s heart rate went way up. I guess that’s to be expected, an unpleasant experience. Not good. Still waiting for the doc to return, I decided to rub her back and give a little massage. Her heart rate went down slightly over the suctioning but still not at normal levels. Dr Jennings walks in and starts tensioning the sutures and her heart rate goes back to a normal level. Crazy but good that she tolerates it so well. We’re so thankful for that.
BREAKING NEWS!! After the stretching procedure today, they took an x-ray to see how much progress has been made. 1 cm!! Her esophagus has stretched a total of 1 cm since her last surgery on Thursday. Expected growth is 1-2 mm per day. The doc himself was surprised. Very thankful we’re starting to go in the right direction. We’re on route to cover a total of 6 cm. Only 5 more to go!
They will also be putting her J tube back in tomorrow and will start her on breast milk. They’ll centrifuge the milk to skim it of it’s fat. She’ll be losing 5 calories per ounce with that process. If she tolerates it well, they’ll add some mid-chain fatty acid formula.
It’s been a slow and fast process. Slow in the where we are in the procedure but fast in the sense we’ve been here a month already.
Thank you for the Care Packages from Mom/Grandma Steadman, cookies and other snacks and a much needed coffee travel mug for Nina. We also received a great card from Great Grandparents Steadman and a surprise package from Cousin Becky with some carefully chosen gifts that are just perfect.
Stay Warm Everybody,
Nina & Matt
3 comments:
Thanks for the new update. What wonderful news that the tensioning is doing what it is intended to do. So sorry though that Ella is excercising her rights to the "terrible two's". Hang in there, she will be 3 before you know it and all the drama will stop! (Hopefully) Love you all!
Hmmm... I've heard the the threes referred to as the torturous threes. As long as she eventually grows out of it, we can handle it. Thank you for keeping us in your thoughts and prayers. I'm convinced it's the reason it's working. Love you!
Hoping the best for your little girl.
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