Monday, May 18, 2009

Day 24--May 3, 2009

As I have come to almost expect, just like clockwork we had a pretty good day. It seems that this roller coaster analogy may be more accurate than I had originally thought. Yesterday was pretty rough, especially for Beth. Today however was entirely opposite. When we arrived at Katie’s bedside this morning we were very pleased to discover that she had eaten 20cc’s of milk from a bottle for the therapist! This almost single handedly quadrupled what she had done for us previously. Only once or twice has she taken more than 5 and the most had been 10. We have now become cautiously optimistic and managed to quell the desire to once again run around the room. It seems that with every forward step there is inevitably that pause or stumble to come. So we very matter of factly said “Oh…..good job little girl,” gave her a couple of smooches for a reward and sat back waiting for the next time.Shortly after we arrived, the Doctor for the day came in, it is a rarity to see the same doctor more than two or three days in a row. It is even more rare to see the same nurse…..ever. This is a source of consternation for me, as I would like to be able to learn these people’s names, and feel comfortable around them.Anyway, when the Nurse Practitioner completed updating the good Doctor on Katie, her condition, subsequent treatments and drugs, Beth and I were asked if we had any questions. Being one to not hide my light under a “bushel,” I spoke right up, a teacher ain’t worth their salt if they don’ t believe in class participation.I questioned the practice of feeding her every three hours, when the pump is set to take an hour to deposit the milk into her stomach. That leaves only a two hour window for the milk to be digested before, with or without a desire from Katie, another quantity is added. Beth and I were concerned that she was just not getting hungry, and therefore not interested in suckling. At home you feed a baby when it cries and shows signs of hunger not by a clock. We asked if the feeding could be moved to four hour increments at least to see if she woulf show any more interest in the bottle.Shock, astound, and amaze!!! The doctor looked at us for a minute, and with a thoughtful expression said…. “Well, we’ve done other things like this before. It might work. Let’s try it.” Beth and I kind of stared at each other for a minute. Why did we wait so long to ask that question? Would it have worked with another anonymous doctor? Who knows?The decision was also made to only attempt to nipple feed every other feeding time, in order to not make her absolutely hate a bottle, which we have learned is entirely possible. So when the appropriate time came around this afternoon I made my way back over to the hospital. Beth stayed behind to watch Michael so I could get in one more visit in before coming home for the night. Once there I was able to hold her for a while and sing to her in order to help calm her down and slow her respiration. Once the nurse had prepared her evening milk and formula slurry, I tried my hand for the first time with Katie and a bottle.Over a 20 minute or so period I was able to coax her into drinking 16cc’s. Once I was done, I felt like I had worked all day long digging ditches. The amount emotional and spiritual energy expended in this effort is immense. You almost have to “will” her to eat. She will pull for a couple of little swallows and then force it out of her mouth with her tongue. After 30 seconds or so we try again with about the same results. Each time she latches you pray “dear Lord this one be the one that clicks!” The nurses tell us that sometimes these CDH babies just wake up one morning and eat like there’s no tomorrow.We are also aware that some CDH babies never eat from a bottle and come home with the naso-gastric tube. We are hoping to avoid that.We are pleased at the small amount of progress that was made today, and exceptionally thankful that there were no setbacks. The medicine they were giving Katie for the Trush was not working, so they switched after four days. Hopefully this will do the trick and swallowing will not be so painful for her. We do not know what tomorrow holds, but I know one who does.Matthew 6:34 tells us “Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.”As I left her again this evening, I was peaceful in the knowledge that she was in good hands….His hands.h

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