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

Yep, we were clearing out some of Ella’s drawers and ran into her hat collection. So Kelly and I decided to try some on the Bun to see which ones still fit. She does have a face for hats and based on her expressions, I think she was enjoying herself.

This fun moment was after a fussy morning. Really, it started last night. She only saturated 93-95 last night on 1 liter. When Kelly weighed her this morning, she weighed in at 9.36 kilos. Last Friday, she weighed 9.09 kilos. That is an increase of .27 kilos, which is equivalent to an increase of 9.5 ounces in only a few days. That is typically a sign of fluid retention.

After Josh and I discussed, we noted that 2 weeks had passed since our ER visit and the last time she had Bumex. She does seem to be on this bi-monthly schedule of needing Bumex. So, we opted to give her Bumex today at noon. Then, she took a really long nap and woke up acting better clinically. We’re hoping for a restful night and even weight loss in the morning. So far, it isn’t looking too promising: tonight, she is only saturating 94 on 1 liter (about the same as last night). If she hasn’t lost weight in the AM and is not acting better clinically, we may have to give another dose of Bumex.

This just confirms that we really want to move ahead with the SVC procedure. We have not heard back from the doctors with an update, but hope to hear soon.

In the meantime, we try and treasure each day with Ella. Although it is the toughest job, we’re honored to be the parents of a true miracle.

Colossians 4:2 (NLT)
Devote yourselves to prayer with an alert mind and a thankful heart.

Debbie Bennett on February 3rd, 2009 at 6:28 am #

Peace! plus one more…(referring to the last pic) She definitely has a face for hats. Praying for some arrangements.

God Bless,

Williamsburg on February 3rd, 2009 at 8:14 am #

I’m with Debbie – three fingers means the Peace that passes all understanding from the One who gives you strength for each marvelous, challenging day. I’m a hat girl myself, Ella-bun – keep up the fashion-forward good work. We love you with all our hearts. XOXOXO

megan on February 3rd, 2009 at 8:15 am #

Doodle bug thanks for the fashion show you are beautiful! =)

Joan and Steve Odell on February 3rd, 2009 at 9:21 am #

Adorable!!! Prayers for answers and arrangments that fit Ella’s needs. Prayers for all of you that the peace of God will be within you as you move ahead. Hugs – Steve and Joan

Marge (Indiana friend) on February 3rd, 2009 at 10:21 am #

And what a beautiful ‘miracle’ Ella is…love the hats and the fashion show which brought sunshine to a snowy day in Indiana.

Estela Williams on February 3rd, 2009 at 10:43 am #

Love the Hat Fashion show… some might be too small for her now :-). Have a blessed day girls! Love ya

Auntie Shannon on February 3rd, 2009 at 10:44 am #

oh my gosh, i remember that dress on Claire. Ella you look beautiful! Love the hats and of course the peace sign she is giving us.

Joel Snyder on February 3rd, 2009 at 11:48 am #

Ella, You sure look dynamite in all those great hats. I am praying that we will soon get the answers for the retching and fluid problems. I am so blessed to have you in my life and I cherish everyday watching you grow and progress. I will catch you later. Love,Grandpa!!!!!!!!

Jim and Char Jordan on February 3rd, 2009 at 4:45 pm #

She is such a cutie. We just love to see her every day. Hope the wretching
it must be so sooooooo miserable having that feeling. Love, you all Aunt Char and Jim

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