Off the Ventilator!

GOD IS GOOD! As you may have heard, Ellie Kate is now off the ventilator. This morning, I was there as the Neonatal doctors did their rounds. They gave me a summary and told me they would try to take her off the vent tonight or tomorrow. I was excited. As they were standing there conversing, I changed Ellie's diaper and she started to move. Then I heard a noise coming from her mouth (which isn't supposed to happen when a child is on the vent). I told the doctors to come over, and guess what? Ellie Kate had worked that tube right out! She was ready to be off of the ventilator. The doctors were excited and decided to go ahead and see if she could remain off. As of tonight, Ellie was still breathing way above the vent with saturation levels in the high 90's to 100 (which is really great). I am thrilled but nervous too! I was able to hear her cry and hold her without the big tubes - it was wonderful.

Today was very busy, not only because of Ellie Kate extibating herself:). I met with the neuroligists, the cardiologists, the geneticists, physical therapy, occupational therapy, respitory therapists, the genetics team, and the neonatal doctors (which are fabulous). My head is swimming with information, and there are still very many things up in the air. Those who know me know I like to list things out for clarity, so here is some info on where we are now, in my style:) . . .

1. No diagnosis yet, but we are moving forward

2. Doctors still think this is some sort of metabolic disorder

3. The MRI taken yesterday showed some small brain damage. This is caused by the possible metabolic disorder. More evaluations of the MRI and MRS will be done tomorrow. We don't yet know what all has been affected, and if this disorder will cause progressive damage (will continue to damage her brain), or if it is static (which means all the damage has been done and there is

no chance of reoccurrence).

4. Even since arriving Ellie Kate has improved in her movements, her breathing, her eye movement, etc. She is fully awake! The doctors think this is very encouraging and is a positive sign that the damage in the brain may very well be done and over with.

5. They are putting Ellie on regular formula - just lactose free! This too is a big step. If she does well on that then it is off to try mom's milk!

If you feel led to do so, please pray for those specific things!!

Every doctor that I met with today will be evaluating her MRI and MRS. Once that is done, they will all consult with one another about what to do next. This could very well include a skin biopsy, which would take about six weeks for results to come in. The geneticists won't do a muscle biopsy unless they think it is absolutely essential. And if they do decide to do one, it will be in another six months or so, which means they would send us home at some point to come back in six months.

As for me, I am hanging in there here by myself - really and truly! I think those few years I spent "on the road" with work were good training. I appreciate every phone call and email - I am blessed with amazing friends! Please don't be offended if I don't call you back. My phone doesn't get good reception in the hospital, which is where I stay during the day. And, like today, each day is full and busy! But, keep the messages coming - they are such an encouragement. Also, God has provided me a much safer and more convenient place to stay as well - the Holiday Inn across the street from the hospital. He truly is Jehovah Jireh, My Provider!

God is faithful and true. His promises in Isaiah 43 are so endearing to me at this time. Thank you all for lifting up our family before the Lord! Your stories about how the Holy Spirit is prompting you are amazing. Thank you for standing in the gap for our daughter and for interceding on her behalf!

Ryan