Posted (Tina) in All Posts on January-4-2009

It was a relaxing weekend. We were able to catch up on some TV shows and remove all the Christmas decor in the house.

Clinically, Ella did fine. She is still not saturating as well as she has in the past weeks. It seems like she is requiring more than a liter of oxygen to stay in a good range, especially when she is awake. This isn’t something critical but it is definitely on our list of topics for the next meetings with the doctors. We need to figure out why her oxygen requirement is higher.

It doesn’t seem like the normal culprit: fluid retention. However, we increased her food 48ccs per day which has to be having some cumulative effect on Ella since she is so sensitive. And based on her weight last Friday, she should be consuming a minimum of 850ccs of formula per day. Even with the recent increase, she is only at 816ccs. So, she needs more formula but we are not sure what impact that will have on her respiratory status.

We will probably wait to see her pulmonologist on Jan 22nd before increasing the volume of food. Instead, we will likely begin to work on the density of the food toward the end of this week (making the food more calorie-rich).

Unfortunately, Ella fought us on oral feeding sessions over the past few days, letting us know that she does NOT want to eat anything orally. We know it is temporary and that she will get past this season someday. But boy, it is a tough thing to see your child resist food. And not just a little bit, but a complete meltdown! It’s hard to accept when she has a feeding tube and you know that she will not want a feeding tube for years and years. And the only way to get rid of the feeding tube is for her to eat enough nourishment orally to where the tube is not necessary. Phew, we have a long way to go!

She spent more time in her exer-saucer today. I think that is her favorite form of exercise these days!

We are clinging tightly to this promise as we start another week of work tomorrow:

1 Peter 5:7 (NLT)
Give all your worries and cares to God, for he cares about you.