Saturday, April 23, 2011

Important Delaney Update

The worst fear of a parent is something terrible happening to your child. Something terrible happened to Delaney last Sunday night when we rushed her to the hospital. While we thought the worst was over we have new information that is very concerning and requires your vigilant prayers and positive thoughts. Now more than ever.

After many tests, treatments, and procedures we have had many ups and downs. We have been strong and weak. Our friends and family have lifted us up in our time of need. We need you all more than ever after some devastating news yesterday.

The MRI that was done yesterday shows severe brain trauma throughout. Research has been done following babies with this profile. Most of the babies who live to 15-18 months have severe cerebral palsy, limited motor capabilities, difficulty feeding (some require feeding tubes), and many do not survive.

This is not the kind of news we expected, nor did the Neonatologist. As of yesterday she was just saying that with all of the procedures she has approved, she has done so with the outlook that Delaney would improve and likely experience a full recovery. However the MRI at that point in time was not completed. This new information (her MRI profile) has been researched multiple times in many countries all with similar if not the same results.

We are telling you all of this not to diminish hope, yours or ours. Miracles do happen, she IS our miracle. We just need another one, with your prayers and positive intentions we will see improvement.

We were able to hold her yesterday. During that time her blood pressure was taken, blood was drawn, several older IVs were removed. Each time something was done, Delaney responded as usual, she was pissed off! "Don't touch me!" "I was comfortable there, don't move me!"

Our daughter can get as pissed off as she wants. Get angry. Prove them all wrong.

We named her Delaney ROSE for a reason. My grandmother Rosalind McDonald was THE spitfire of the whole clan. I know that she is with us during this time. She is probably whispering in Delaney's ear, "You give 'em hell!"

During the time that I was holding her there were several moments where her blood pressure was elevated and she arched her back and moved her arms in response to me. I know she feels us near and wants to communicate with us. She's trying so hard! We aren't going anywhere and we will hold her as much as possible to share our healing spirits with her.

We talk to her all day long and tell her that she has a lot of people out there who want to meet her. She's our little rock star and we have people all over the world who are waiting to see her. People believe in her.

We are protecting her as best we can. I tell her all the time, "I got you, I got you"

What is really hard for us to stomach right now is that everything else that has been going on with her body is fixable and she's responding positively to treatment. Her heart looks really good after the catheterization, so good that they've decided to postpone the surgery as long as 6-8 weeks. Her NEC is recovering and with continued antibiotic she should be fine. Her kidney and liver function seem to also be fine. It's so frustrating to us, that had she not required CPR that fateful night we would'nt be worried about her brain function.

Understand that our faith is strong, there is much the medical and scientific community doesn't know about the brain. Moreover they don't "know" where consciousness lies. The brain is simply the mechanism for which consciousness is delivered through our senses, our communication functions. We know that she's in there, she responds to us.

Beyond all of this we do not want her to be suffering or in pain. We want her to be able to engage with us, to communicate, to remain a part of our family.

Please share with us in these intentions to put her in the best possible place to heal. You have her in your hearts as we have her in ours. God gave her to us for a reason, he could have taken her many times and didn't. We know there is a reason for that.

B & L & d

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.