*We've had a couple nicer days. What a blessing! Friday I got to run out to the outlet mall to pick up a birthday present and walk around OUTSIDE IN THE SUNSHINE. For this Colorado turned So Cal girl, that was a huge bonus.
*These pics are of the kids in the backyard on one of those days.
*Jeremy had to put in a few extra hours at work Saturday so we went to the indoor play place at Bellevue Square Mall. Connor said (at least 6 times, possibly more) "Mommy, it's fun to play here!" They had a great time climbing and running and playing.
*I am realizing that we are still under a high level of stress. I realize it when I have a lower "tolerance level" for quirks and oddities of every day life. Or when I break down crying at Children's hospital...
Thursday I packed up Kara and Connor for my dentist appointment followed directly by a trip to Children's (after swinging by home to get Kara's enteral pump I had forgotten for her milk through feeding tube - oops!!). Upon arrival at Children's, I was informed that our video fluoroscopy (swallowing study) had been rescheduled. It was changed to May 25 (2 weeks later). After being on the phone for 10 min. I was given a "consolation prize" of a feeding therapist watching me feed Kara and a reschedule for May 18. I was also given a certificate for the cafeteria (at least they have chocolate milk and pretzels... =) The hardest thing about this was how wound tight we had been about Kara's possible aspiration. We think she does aspirate at least occasionally, but God is giving grace for the additional waiting we are needing to do.
Earlier that day, our North Bend feeding therapist observed that Kara has reflux (not projectile vomiting or anything, but her body language communicates quite a bit of pain). This might be contributing to her eating lower volumes, so she suggested a few ways to help. Kara's reflux was confirmed at Children's that afternoon and we called in to get a prescription. The prescription she was given is the same one that she was one when we had her dangerously high potassium levels while inpatient at Children's. So now I am requesting a blood test to make sure it does not recur (if it gets to the level it was, it could do electrical damage to her heart).
Add this to the ultrasound results (some abnormalities) and Drs. asking me "who's coordinating care?" and "what's the feeding plan?" - questions to which I have to answer "me." and "I don't know.", 6 phone calls with providers, a few bills with insurance discrepancies, and you can see why the title of this post is ups and downs. It's been a difficult week (er, 6 months). God's grace continues to be sufficient, but please keep praying! We are feeling the weight of all these decisions and concern for doing what's best for our baby.
We would also request prayer that the Drs. will allow Kara to change from NG (naso grastral) to a G (gastral) tube. This tube goes through the skin directly to the stomach. She has not been progressing (and has done some regressing) on her oral feeds, so a feeding tube of some type is looking like a long-term reality. G tube is better for long term, but the Doctors need reason to believe it will be long term. There are several reasons we would like a G tube, but one of them is that our baby girl likes to suck her hands. We would like to let her (without danger of pulling a tube out).
Connor and Katie are learning to take good care of their babies too:
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