Lilypie Second Birthday tickers

Sunday, May 17, 2009

Day 7 -- April 16, 2009




Today’s update is quite a bit less spectacular. We are pleased to report that nothing negative has taken place and we are holding our own. We are very satisfied with happy and stable. Beth and I have been given much heads up about the post surgery time for darling Katie. There were no gray areas to assume that she would not be very ill when she came back. We are exceptionally delighted to share that she has not required any blood medication as was expected. She has managed to do well without it. Also about 10:30 this morning she was switched from the High Frequency “jet” ventilator to the conventional ventilator. Hourly “blood gas” levels are taken to ensure that there is enough oxygen and not too much carbon dioxide.




Over the coming days the respiratory therapists intend to gently wean her off of the ventilator by gradually reducing the air pressure per breath until her diaphragm is strong enough to do the job on its own.Her petite little body has been invaded by surgical stainless steel. What was normal for her has been rearranged and shaken up like a maraca. She has new lung tissue that has to learn to work, and a knitted diaphragm that we are all expecting to begin working all at once. Patience grasshoppers….patience.




I am painfully aware that this is easier said than done. While I do adamantly believe in miracles wrought by the Almighty, I understand that His natural gift of healing may be lengthy. We are only looking forward to when the first invading tube can be removed for good. Then we will wait with baited breath for the next. We have forbidden ourselves from trying to look too far ahead, as the perpetual suspense may be more than we can bear.Speaking of “bearing”; now that the surgery is complete and we are waiting for time to heal all wounds, we have noticed finally how utterly exhausted we both are. There has been little sleep between us, and that which we have gotten has not been terribly recuperative. Our nights at home over the weekend, while great, were even hindered by the incessant thoughts associated with the uncertainty of our situation.




Granted we have been spiritually strong and at peace with this, however we are becoming emotionally and physically spent. Beth especially is becoming weaker by the day it seems. She strongly and deeply believes in the benefits of breastfeeding our baby. As little Katie is a bit indisposed, momma must pump. Child or no, this requires an every three hour vigil to collect the valuable liquid, appropriately label it and the freeze it for such time as when Katie can be fed for the first time. This somewhat monotonous chore can at least be easier to tolerate for a mother when the child is next to breast, and some wonderful bonding time can be realized. With our current situation, that benefit is not enjoyed. The work has to be done with little emotional reward.I have a wonderful wife, to whom I am deeply and passionately devoted to. I can think of no other that I would want to have to share this experience. She is a loving and caring mother, who gives entirely of herself for our two little ones. She has become the focus of concern among the Nursing staff here at Duke. Quite frequently pale, less frequently weak and dizzy, the Charge nurse had her escorted over to labor and delivery last night to be checked out a bit. Her pulse rate and blood pressure were incredibly high. I am glad they didn’t check mine. She has been trying to take it easier today since hopefully the worst of the crisis is over. Otherwise she will be pummeled by the nursing staff here.




We have become quite attached to all of the Doctors and Nurses here, as they have been extremely kind and caring. They all seem genuinely concerned and emotionally attached to our baby girl. One of Katie’s primary nurses, Shannon, even presented us with the gift of a 0-3 months sized set of clothes. The likelihood that Katie will be wearing the newborn sized clothing that we brought to take her home in is relatively slim.




The Parker Reese House that we have been so fortunate to have been allowed use, has been a huge help. Michael has been able to somewhat settle into a new routine in new surroundings. It has also provided us a private and secluded place to gather our thoughts and emotions. With the help of Beth’s mom and grandparents we have enjoyed home prepared meals. We have also had the much needed “decompression” time by relating our experiences with family and friends that have come to visit.We are not allowed to be in the room with Katie during morning and afternoon shift changes or when medical updates are being made on children in the same room with her. This violates HIPPA laws.




With all these things in mind, we are kind of settling into a routine of staying with Michael at the Parker Reese House until after the morning shift change. This way we can get him up and fed and at least be there to start his day. Then it is off to Katie’s place. We try to come back to the house in time to share supper and some time with Michael in the evening. Once he is in the bed we normally go back to the ICN till around midnight or so. I have attached a picture that shows that you can find beauty in the strangest places. This little duck sticker holds down her temperature probe. The other picture is just another photo of little feet.




Thanks for all of the prayers, care packages, letters, cards and gifts that we have been inundated with. Each item came wrapped in love that is tangible.




God bless you all!

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