Thursday, June 28, 2007

Joella is a week old today!

Today was a good day!

Joella's wound care specialist reported that her main blisters on her legs were healing pretty well. She is breathing without the aid of a breathing tube, and her digestive system is taking Mom's breastmilk fantastically although still through a feeding tube that is put up through her nostril and right down into her gut (amazing how that works, I know!).

The main attending physician said that he expects to remove her feeding tube in the next day or two, so that Joella can begin receiving breastmilk via a special soft nipple.

Both Katie and I got to hold her and rock her in a chair. It was so much fun! (these pics will be posted shortly).

Some prayer requests:
-For Joella to receive the nipple without causing any blisters in her mouth or esaphogus. The doctors will be monitoring this pretty intently. It is great that she is nourishing well enough to try this out, but there is a risk that her sucking muscles could cause new blisters inside her mouth.
-For positive biopsy results to come back. The doctors have had difficulty reading her results b/c EB is such a rare disease. There are only a few experts in the country who can accurately decipher such a test, and I have personally been in contact with two of them (one in Houston, TX, another in Nashville, TN, and one in Philadelphia, PA). We hope to have a better read on the test results within a week or so.
-There are two new black spots on Joella's right foot and ankle. The doctors think it is dead skin that will slough off, but they are not sure.
-For thanksgiving for her progress in her first week of life (She is a champion!) and, again, for the many, many praying and encouraging family and friends who have been incredibly supportive and kind to Katie and I. It is truly amazing and wonderful.

12 comments:

Rajan said...

Praise God for the wonderful progress Joella is making at the end of her first week. Thanks for the updates. God Bless. We are friends of Curby and Gina in Cville.
-Rajan, Jessy, Roshan and Renae George

PS 23:4 Yea, thou I walk through the valley of the shadow of death, I will fear no evil; for thou art with me; Thy rod and thy staff, they comfort me.

Anonymous said...

I love the family photo! She is even more beautiful than I first thought!
You two are beaming...
Hope each day gets better
You are all in my thoughts and prayers,
Joanne

Anonymous said...

Hi Guys,
Really enjoyed your letter today. We are always checking in to see if there is any news. Loved the picture of Joella today, she truly is a beautiful baby. You are all constantly in our thoughts and prayers. Can't wait to meet this incredible child in person.
Love and hugs,
Kathy and Bill

Anonymous said...

Happy Birthday, Joella!! The Murray family portrait is awesome! You are always in our thoughts and prayers.

Love, Jess and Rob

Rachel said...

I love the new pictures! Joe, little Ella looks just like you in the one with your mom kissing her little head...that is the cutest picture! I, of course, love the family photo too! Katie and Joe, ya'll are amazing...keep it up! I'm constantly praying for you all and your little fighter.

Rachel Evans

Darla said...

How adorable! I'm so glad that you all can now hold her and let her feel the love you have for her!

Another verse from my "Daily Bread" from today. This devotional book is really timely recently!!

"Cast your burden on the LORD, and He shall sustain you." - Psalm 55.22

Anonymous said...

Joe and Katie,
Please know that prayers are being offered up to our all powerful, awesome and loving God from
Texas! May God hold all three of you in the palm of His hand!
Ella is precious!
Sarah Evans (Rachel's mother)

Anonymous said...

I am glad she is doing so well. I think all of Oklahoma is praying for Joella. She is being lifted up by all the Singing Churchwomen of Oklahoma and they are notorious prayer warriors. She is a beautiful little girl!
Love, Julie Ray

Rene said...

Wow--- she is so beautiful, enough to make your heart melt. And Katie, I have tears seeing your photo of the first time holding Ella. It's a feeling and a look that only a mother can recognize. We continue to pray for you daily. Congratulations on a week of parenthood.

Rene Harrell

Anonymous said...

Thinking of you guys every day and praying for the little Murray to pull through.

Rudzo

Anonymous said...
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Linda B. said...

Just wanted you to know that Joella is on the pryer list at Bethnay Lutheran Church in Menlo Park, CA. What a beautiful little girl!

I saw your blog on my Goddaughter's website and Jolla's story touched my heart! Just always trust that God will see you through this trial even when it seems too difficult and when you question the reasons this has happened.

I have a downs syndrom neice and at first the entire family was devastated. She's now 22 yrs. old and is joy and a true BLESSING to our family. We grew so much as we began to learn about Heather's condition. God grew us!!!

May God bless Joella and bring her little body His healing touch.