Posted (Tina) in All Posts on March-2-2009

Ella had a pretty good day. She was in a great mood unless she was working on feeding. At those moments, she had meltdowns.

When she has a meltdown, we have to increase the oxygen rapidly these days. The great news is that she has been requiring less oxygen since her procedure last week. During the day when she is awake, she is requiring 750ccs and at night, she has been on 500ccs. We’re hopeful that this is a good sign for Ella and that we will slowly be able to wean her oxygen requirements even sooner than anticipated over the coming weeks and months.

She was sporting one of her dresses because it was 70 degrees in Denver today. Yesterday was 65 degrees, today was 70, tomorrow should be 70 and Wednesday’s forecast is for 65 degrees. Even just these brief breaks in the winter weather help and make us anxious for the warmer weather. We’re excited to get back outside with the Bun!

Ella has shown weight loss the past few days. This is a bit surprising. We expected a bit of a dip right after the procedure since she didn’t have food for several hours. However, we also increased her food volume to 920ccs, an incremental increase of 100ccs, from where she was a week ago. We did the increase in fluid because she had started to lose weight even last week prior to the procedure. But normally adjusting the fluid by that much would start to show some gain after 5 full days. She is now at 9.2 kilos (20.2 pounds). We’ve emailed her pulmonologist to get his thoughts. Our initial instinct is that maybe the diuretics are contributing to the weight loss. Normally, she requires a good amount to keep her pulmonary status in-check, but it could be that the amount of diuretics is too much now. We’re hopeful that is the reason, as we would love to wean the diuretics. Since the procedure, Ella’s body is responding to things in a different way so we’re trying to pay attention to see what adjustments might need to be made as the days and weeks pass.

We’re just so thankful for our beautiful baby girl. We thank Him for allowing us to be her parents.

Psalm 25:10 (NIV)
All the ways of the LORD are loving and faithful
for those who keep the demands of his covenant.

Terri Trainer on March 2nd, 2009 at 11:03 pm #

That headband-bow makes this Texas girl proud!! And those teeth…what a cutie!
Love you guys – T

Joel Snyder on March 3rd, 2009 at 2:58 am #

Ella, You are so cute in your dress and headband. I am glad that the weather is getting warmer. Your pals Maggie and Mannie are loving the backyard and no snow. I am hoping that you can keep up the steady progress with the new changes from your latest adventure. I will check on you later. Have a great week. Love,Grandpa!!!!!!!!!

The Dirirm Family on March 3rd, 2009 at 6:01 am #

So glad she is responding well to the surgery and that you all made it home in a timely manner. Praying for some weight gain. She is so beautiful! Yeah God for His mercy and grace.

Marge (Indiana friend) on March 3rd, 2009 at 6:28 am #

Love that headband……how adorable!
Thanking God everyday Ella, for letting us know you; many blessings to you all.

Jennifer Harris on March 3rd, 2009 at 10:34 am #

We just love to view her photos and continue to ask our Father to bless her with the gift of healing.

Kara on March 3rd, 2009 at 1:08 pm #

Love you guys.

Jim and Char Jordan on March 3rd, 2009 at 1:31 pm #

So far the changes look to be on the very positive side. We will continue to pray for you always. We are excited to see improvement. All our love…

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