Monday, May 18, 2009

Day 36--May 15, 2009











Wait a minute…………..What was that? Did you hear something?.......................Listen for it…………Could it have been?...................I think that was a “Click” I just heard! If a “Click” did not sound tonight then it was a VERY BIG “Tick!”After meeting with the Boss at work for my end of the year summative report, and then after that, working with a fine group of my colleagues to grade some Senior graduation projects I burned up the road to get to my loving wife and darling Katie. I was a bit later than normal getting here this afternoon but not too bad.In an effort to better manage our time and streamline our nightly visit we chose to eat in the Hospital Cafeteria. They offer a pretty good meal there. As sad as it sounds we have sometimes even gotten take out from there. Who does that? Hospital takeout!? Don’t knock it.Before I get into the “meat” of tonight’s story, I feel it pertinent to tell you that we have decided to move home “piece-meal” (ok I’ll stop). When I went home last night with Michael I took all of this clothes, toys, etc. Joan moved out today and will be keeping Michael tonight and tomorrow. Then mom and dad will have him for Saturday night and Sunday. It will do him good to be back in Church.Beth and I have chosen to stay through the weekend. On Sunday evening we plan to entirely vacate the Parker Reese house, unless something happens and we need to come back, with the Foundation’s approval of course. This decision was made with much deliberation. We feel so fortunate to have been able to live here for the past 5 weeks, and have nothing but praises to sing, however this is not home. Since Katie has become so stable and is receiving such good care we have decided to go home and commute to Duke. It will mean even more miles on the car, but at least we can sleep in our own bed, and eat supper around our own table. Michael will be put back into daycare full time, and for him at least, life will return to normal. We are also hoping that there is more of “Katie’s Story” at Duke behind us than in front of us.This is going to be a bit of a sacrifice because rather than being able to make two or three visits per day, we are now only really going to be able to make one long one. Beth will be going everyday. Joan, Bennie, or mom and dad can go with her on Mondays, Wednesdays, and Fridays while I am at work. I still intend to take Tuesdays and Thursdays off so that I can go, and naturally Saturdays and Sundays. Presently I get to see her every day, as least for a little while. With this new setup I will not get to see her at all on Mondays and Wednesdays, and possibly Fridays. I am not going to like that, but we feel that this is better for our family as a whole.Now for the Katie update. We could not be more proud of our little girl if she had been accepted to Harvard or scored perfect on the SAT. Katie drank her entire prescribed amount of milk from the bottle tonight!Let me explain. Beth called with her update about 1:00 this afternoon and said that the Doctors had once again changed her feeding orders. Katie is to be fed only 45ccs every three hours. Whatever she can get by mouth is great, the remainder is to be pushed through the naso-gastric tube by syringe. This means that there is currently no more milk pump! For example: earlier today she drank 31ccs from the bottle before she quit. The remaining 14ccs were then put into a syringe and allowed to drain down the n-g tube by gravity.When we arrived in the TCN tonight we came with high hopes. The nurse, who like so many times before was entirely new to us and Katie, prepared Katie’s milk. Beth then took the initiative to set up the bottle and select the nipple to try tonight. For some reason Beth felt like she wanted to retry the fast flow nipple that Katie did not do so well on a week or so ago. Since I had been at work all day, I got to give it a try. Kate latched hold like a champ. If had closed my eyes I would have had a flashback to that little piglet Michael when he was her age. Katie pulled 20ccs out of that bottle in less than 10 minutes. Then she began to falter a bit. We stopped for a break and a good daddy two hand in rhythm burping (one hand on the back and the other on her bottom in a drum roll fashion. Works like a charm!) Once we tried again it was back to the old fight again. 15ccs slowly over about 15 minutes were ever so tenderly coaxed into her. We began to feel that old frustration beginning to creep back in. So we decided to give her another break, and have a diaper changing.With new “seat covers” in place we tried again. Very reluctantly, and with much fuss and fret Katie finally latched and emptied the remaining 10ccs in just a few minutes. We really didn’t know what to do. We both cried! Katie looked on, with a rather proud and pleased expression. She doesn’t really know what she has done, but five weeks and one day after being born she took her first full feeding orally!Beth went to share the wonderful news with the nurses. Each one was a floating nurse apparently here for the weekend shift and had never seen us before. They put on a fake smile and offered congratulations, but since they were not familiar with “Katie’s Story” they did not quite fully understand the significance of our exaltation. Their indifference did not dissuade us from celebrating with some empty bottle photos which are attached to this e-mail.This may have been the “Click” or as I said earlier at least a loud “Tick”. Either way we count it as another small victory in the battle to go home. We are hesitant to become too elated as we have seen so many times before, set backs frequently tread in the same tracks as progression. We hope that Katie has a good enough lead that she can not be overtaken again!This event has once again shown the power of faith, patience, and prayer. I am so thankful that God has chosen to give man the wisdom to facilitate His wonderful power of healing. I give thanks to the Health Care professionals who are helpers in this marvelous gift whether they know it or not. I give credit to God for this ability, this knowledge, and this technology.Most of us pray for things daily, however I think that we should not always pray for just random things, like “heal all the sick” or “save the lost.” Hebrews 4:16 says: “Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.” This is exactly what we have done, and what you all have done. We spoke Katie’s name, we spoke of her condition even though the Lord already knew. We came boldly unto the throne of grace with specific problems and asked for specific solutions. Katie is a powerful testimony to what can be done when fervent, honest, and sincere prayers are presented at the feet of our Lord.Perhaps Katie’s story has been a lesson in prayer?

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