Tuesday, May 23, 2006

We got to hold her...

I thought I would send some pictures of us holding her last night. God has been so good to us!!






















Updates:

  • Ella got her IV line to her belly taken out at 3pm yesterday and Dabney (the nurse) called to let me know it came out with no bleeding and her new IV line into her hand went in with only one prick. She has a splint back on her right hand where the IV is, but only so she doesn't pull it out since she's gotten more active.
  • She starting to make more noises, but still no real crying or even loud grunting...but we are getting there. Funny how you WANT them to cry until they do!!
  • We got blood culture results back and it's been 5 days with no growth so her blood seems to be clear...we have another spinal tap (lumbar puncture) probably on Thursday to check her CSF (Cerebrospinal fluid (CSF) is a clear bodily fluid that occupies the subarachnoid space in the brain (the space between the skull and the cerebral cortex—more specifically, between the arachnoid and pia layers of the meninges). It acts as a "cushion" or buffer for the cortex. en.wikipedia.org/wiki/Cerebral_Spinal_Fluid) which is where the disease has been hanging out.
  • When they did Ella's MRI last week they found an enlarged blood vessel right smack dab in the middle of her brain. This has nothing to do with the infection, and we wouldn't have found it unless she ever had an MRI. However, the neurosurgeon would like to do an angiogram (AN-jee-o-gram): An x-ray of blood vessels; the person receives an injection of dye to outline the vessels on the x-ray.http://www.google.com/url?sa=X&start=0&oi=define&q=http://www.spineuniverse.com/community/cancerdictionary.html). We won't know more about this or need to make decisions till a few months after her current infection has cleared and we'll keep you up to date on findings.

Current Prayer Requests:

  • That Ella starts regulating her own temperature.
  • She start to grow and put on "good" weight, not water weight.
  • Learn to suck/swollow/breathe...HUGE before she can go home...got a call from the nurse this morning and she is starting to hold a pacifier in her mouth correctly, but we are still a long way from being discharged.
  • Patience and Understanding...I, personally, am getting so frustrated and ready to bring her home and just get on with our lives on a normal basis (although "normal" will even be different)...just pray that I am still and listen to God...He's been so faithful to us, prayer that I can be as faithful to Him.

10 comments:

Anonymous said...

Sean and I are praying for you,Joe and little Ella on a daily basis. We pray that she continues to get well and that soon the 3 of you will be at home and finally enjoy getting to be a family!

Heather
Hab 3:19

Anonymous said...

my favorite pic? andrea kissing ella! just because we don't leave comments as often doesn't mean we don't check the site twice a day and pray 10 x 10 that much more! i know you have a HUGE support group in your church but if you need anything or if your parents need anything, please let us know! you are all in our prayers. i know the heart of a grandparent well!

Debbie said...

Woo Hoo! You Go Ella!

We Love You!

Deb

Jodie Keeter said...

What a beautiful family! We are so happy for you guys and will continue to pray... we love you! ~Keeter's

Anonymous said...

Do you keep hearing Reed's voice in your head?..."God says to us every day, 'Do you trust me?'" My prayer for you today is Psalm 91:1-2, "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust." My heart has ached for you as I have prayed each day and as I play with my own miracle baby who is now 2. We love you guys.
Ali, Mike, Alexa and Weston

Anonymous said...

We are praying for your precious family daily! What a sweet picture of Andrea kissing baby Ella! We'll continue to pray for God's perfect peace as you wait to take your baby home in His timing.

Anonymous said...

I saw these two verses and thought of your family! We pray daily for your sweet baby!

Ps. 66:12
We went through fire and through water; Yet Thou didst bring us out into a place of abundance.

Ps. 27:13
I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.

Keep kissing that sweet baby.

Anonymous said...

She is looking great!! It is so wonderful to know you guys are getting to hold her and see the pictures. We are continuing to pray for you all and praise God for everything He has accomplished in her little life!
The Johnson’s :)

Anonymous said...

Oh, Sweet lil' Ella is absolutely beautiful! Thank you for sharing these precious pictures and for also sharing your hearts. Craig and I are fervently praying for miss Ella's continued heatlh and for you two - that He uses you to strengthen one another when the other needs it most. We ask that the Lord continue to keep His mighty, mighty hand on her: for healing, peace and comfort so she can soon become strong enough to go home!

Our heart goes out to you guys a million times over. And I, also, check this amazing blog site at least two times a day!

She is absolutely beautiful! "Now to Him who is able to do immeasurably more than all that we can ask or imagine, according to His power that is at work within us." Eph 3:20

Please, please let us know if we can help in any way....

In His mighty power, abounding love, and sustaining strength,
Anna & Craig Woods

Katy said...

I am so glad you and Joe got to hold Ella! What a beautiful family picture. I am continuing to pray for all three of you. You have quite a following of readers who don't even know you!

love-katyo