Sunday, May 17, 2009

Day 4-- April 13, 2009

Wow is all I can say. It seems that what started out as a way for me to put frustration and emotion in print, has turned into the daily SOAP which is tuned into by scores of caring and concerned people. I would never have imagined that the ramblings of a set of dazed and confused parents would have ever made it to so many people. Beth and I both have been getting literally dozens of e-mails each per day. Many are from people we don't even know, as well as from all over the country.It seems that as we send out the updates to our friends and co-workers that they forward it to their prospective Churches or other interested parties. We have taken a quick tally and as best as we can figure, we have made it onto somewhere a little over 100 different church prayer lists.We have begun a file in order to keep the hundreds of e-mails that people have sent. It has become a favorite treat of ours during the “down time” around here to read the e-mails that are being sent. We may not be able to respond to most of the e-mails we get personally but rest assured that we read each and every one. Please keep them coming. We love reading them all.As a matter of fact we intend on making a collection of these e-mails and the daily updates into a “Katie’s Story” that we can share with her once she is old enough to hear about her miracle birth.

Well now for what you really want, an update. We returned this morning from our Easter Sunday recuperative and regrouping trip. By the way, this short foray was more needed than we had anticipated. We were able to spend time with our 2 year old Michael, as a family again. We were able to attend the Easter Service at Church where we were met with countless hugs and tears as we entered the doors of the sanctuary. It seemed to us that the sermon and each and every hymn were chosen to strengthen our resolve. Most of the service was spent dabbing damp eyes and cheeks by Beth and me. We were surrounded by our church family and cloaked in the warm blanket of prayer and God’s love in a special prayer for baby Katie.

Upon returning home we made a good home cooked Sunday lunch, which we sat at our dining room table and ate as a family. The feeling was that his would be our last home cooked meal for a while. This time of rest and regrouping at home did wonders for Beth’s condition. She has made a huge rebound and doing quite well, for having had a baby so short ago.When we retuned to the ICN here at Duke, we were eager to see our daughter. We promptly received permission and scrubbed up. Once in we were pleased to see that Katie looked really good! She had become a bit jaundiced and had been under a bili light. She was a pink as could be today! Also we were pleased to learn that she had been removed from all of her medications and was doing well! She has also been removed from the nitrous oxide and returned to oxygen. She is still on the high frequency ventilator, but the doctors plan on transitioning her back to the traditional ventilator by tomorrow. By all accounts she is as good as she can get without the surgery. We were informed today that it takes most children with CDH two to three weeks to become stable enough to be operated on.

Upon doing some research on this little known condition we have learned that we do have a huge head start over most other CDH babies. Once again praise the Lord! Many have asked about our housing/ rooming condition. Currently we are fortunate enough to have been assigned a “care by parent” room. This small room is located near the ICN, and has some chairs that fold out into “rock garden” cots/beds. It does have a private restroom with shower, which has been a God send in and of itself. This situation is tenuous at best as this room is normally reserved for families that have children that are being discharged, but mom and dad need a day or two of hands-on training for the care of their sick child.

Just as God’s blessings flow without end, we were approached about some housing near by. Before I explain this let me share that we have had no less than 4 offers from friends and acquaintances to use their homes nearby. We are supremely appreciative of this, and had planned to endure as long as possible without imposing on friends. However this may not be necessary at all. There is a group which supports parents and families of babies with CDH called the Parker Reese Foundation. This non-profit institution is devoted to finding a cure for this condition and helping those families affected by it. They have a house located about 20 minutes away in Hillsborough, on a dairy farm. It has been offered to us free of charge until Katie is discharged. How good is our God?!!We will know tomorrow more about this prospect.

Other activities scheduled for tomorrow is that the Red Cross is supposed to send someone to collect blood from myself as well as Anthony and Dawn Marie Dagenhart, and my nephew Bobby. This blood is to be used as a direct donation for Katie’s surgery and recovery. Since we all give blood, the Red Cross assures us that these pints of blood will be able to be processed and used relatively quickly. Katie’s Surgery is tentatively scheduled for Wednesday.

Stay tuned for day 5, hopefully before midnight.

Again, thank you all for you for your e-mails. Please feel free to send any you wish.

God bless you all!

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