Sunday, May 17, 2009

Day 17--April 26, 2009

Exodus 20:8 tells us “Remember the Sabbath day, to keep it Holy.” For many ,this consists of the obligatory trip to Sunday School and/or Church. Beth and I really enjoy attending the services at our home Church, Lee’s Grove PFWB, in Dunn. We love the church family there and feel right at home.I relate missing church to kind of like skipping class when I was in College. That first time was the hardest. The guilt set in and you kind of “skulk” around hoping no one see you. Each consecutive time after that gets easier and easier. It is easy to wake up on a cold and rainy Sunday morning and look out the window, clutch your arms across your chest, and give a little shiver and lightly utter “buurrrrrrrr”. Then crawl back into the comfort of that warm bed. Is it just me, or does the bed feel extra especially good on Sunday morning?Now it seems that when we wake up and look out and the sun is shining, it is warm, and dry that all kinds of chores or extracurricular activities provide encouragement to not go to church. I like to fish. For some it may be Golf. It seems that there is always something to keep us away from the Lord’s house if we will let it. For Beth and I, we choose to attend services and be active at church. For two weeks now Beth and I have been unable to attend our little country church to hear God’s words, but I believe that we have been hearing them more clearly at out daughter’s bedside than anywhere else. As a vocational teacher (CTE for those of you who know what the acronym stands for) I believe in theoretical instruction followed by plenty of practical hands on experiences. Put what you know to work! Build something. Repair something.I feel that all of my life, the lessons that I have learned while “warming a pew” have mostly been theoretical. Beth and I truly believe that this experience has allowed us to put some of these life lessons into practical “hands-on” experiences. While we sit and watch little Katie, and her marvelous transformation from barely holding on, to achieving was beyond the curve of normal CDH babies, we have truly felt the presence of the Lord.We have daily prayer with her, and it does us more good than her I think. We also pray with other families here who are suffering. We now feel an extraordinary desire to provide some sort of service in the future to those in our situation. We have been in contact with the wonderful people at the Parker Reese Foundation and have offered our services as “sounding boards”, “listeners”, “dry shoulders”, or service in any other capacity to future Duke or Chapel Hill CDH families.Enough rambling! You want to hear about Katie. She has had a very good day. She did have some reflux problems during the night last night, but they were minor. She has been put on a regimen of reflux medication, and has had no more incidents thus far. The Nurses are not ruling out that these few and mild episodes of reflux are not associated with withdrawal symptoms. Hopefully as she steadily improves each day with those withdrawal symptoms, she will have no more issues like this. We have been warned that nearly 100% of CDH babies have reflux because of a weakened diaphragm, and the fact that so many tubes have been down their throats. Currently she is taking about 1/3 of the reflux medication that normal CDH babies get. Yet another answered prayer, before it was asked!Katie was never awake any of the time we spent with her today. I think that she is just so exhausted from fighting the withdrawal symptoms that she just needs the rest. Once again we were just content to watch her sleep, and gently caress her head.Katie’s milk volume has been increased to 50 mL’s which for those of us who live in America and love the really easy to understand english measurement system, is about 1 and 2/3 ounces. This is the normal amount that a typical new born is supposed to eat. She is digesting it well and has had no more issues in that regard. All of her medications have been switched to “oral” type medications which are being administered through the naso-gastric tube. Since she is tolerating this exceptionally well also, the medical staff at Duke is considering removing her PICC line tomorrow! This will be the last of her internal tethers to some sort of machine! After that it will just be stick on type electrodes, sensors, and the oxygen nasal canula. We are so happy for her. Beth commented today that now she just looks like a sleeping baby and normal in every capacity. Until now we have realized her need to stay in the Intensive Care Nursery, but as she is gradually loosed from her medical bonds, our desire to scoop her up and take her home gets worse with each passing day. However, as we have already mentioned…..patience, Andy, patience.

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