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.

Julie on January 4th, 2009 at 11:35 pm #

Reading your blog always gives me a new perspective. I shouldn’t really complain that my daughter (who has a cold) has been nursing a lot more frequently the past couple days, not when you’d be thrilled to have your girl take in that much by mouth.

The things I take for granted…what a reminder!

Jean on January 5th, 2009 at 4:06 am #

Your situation is way more extreme than what I’m about to say but I hope it gives you a glimpse of the future for you and Ella. I promised that my kids would learn to swim because I missed out on so much when I was growing up. So my son did fine but my daughter – major meltdown when it came time for swimming lessons. She was 5 and cried and cried. Screamed they are trying to drown me. She literally would be throwing up that day. Major meltdowns. I would just be sick in the locker room as she was dragged to the pool. I couldn’t watch because it made it harder for her. And now she is 30 years old and during our visit at Christmas she was telling us a story that included her swimming across the pool to help someone and not even a thought of how horrible learning to swim was and her fear of the water. So I pray for you to be strong with Ella. God bless your family and your faith is a bright light for me each day.

Joel Snyder on January 5th, 2009 at 6:06 am #

Ella, Keep up the good work with the excer-saucer you look great and it looks like fun. I will be praying that we can find out what is going on with your O2 and get it fixed. Grandpa had a good weekend with getting the house cleaned and Maggie and Manny had their second traning session with Jackie. It is amazing how quick they are learning and I am so pleased with both of them. I hope that I can learn as fast as they do. Have a great week and say hello to Kelly and good luck with your PT and OT. I will check on you later. Love,Grandpa!!!!!!!!

sherry martinez on January 5th, 2009 at 10:10 am #

Just a thought with the food. maybe green beans or veggies. cayden loves green beans and veggies way more than fruit. I was surprised by this but maybe ella will respond better if you can find her favorite. thank you for your blog it gives great hope to others

sherry martinez on January 5th, 2009 at 10:14 am #

one more thought on food I know this is a lot more work but have you thought about making your own baby food? who knows what will work for ella. hugs sherry and baby cayden

megan on January 5th, 2009 at 10:51 am #

Happy New Year doodlebug!! You looked so cute in the videos. I hope this year is your year! Hope to see you soon…=)hugs

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