Sunday, May 17, 2009

Day 8 -- April 17, 2009







What another wonderful day the Lord has made!






Our fatigue was greatly reduced today by a rush of enthusiastic adrenaline! Our scrappy little angel has fought so hard and recovered so well, that she has outworked the ventilator. She had been breathing over the ventilator most of the night. The respiratory therapist spent all evening turning the ventilator down by degrees. At about 9:30 this morning she was fighting the tubing itself, so the decision was made to entirely remove the ventilator.
I don’t know if you completely understand the magnitude of the previous statement……she is NO LONGER ON THE VENTILATOR!!!! Less than 48 hours after a very invasive procedure this tiny little powerhouse has shown the entire medical community just how prevailing the power of prayer and faith is. This little bundle of pure determination has done in 8 days what it takes many infants born with Congenital Diaphragmatic Hernias several weeks to do.

We were hoping for just the removal of one tube, instead we were pleased to discover that in an amazingly short period of time the Ventilator tube, the siphon tube going into the stomach, and the lines going into her umbilical were entirely removed. When we go in now there is a precious, albeit quite sedate baby girl there. Her face is completely unobstructed from view, save a little tape residue on her upper lip. This is easy to overlook, and her innocent beauty radiates through it.

The nurses, each and everyone being aware of my affinity for pink and ribbons, made a little pink bow and “glued” it her head with a little medical jelly. It was absolutely adorable!

About 4:15 this afternoon yet another line was removed. The large femoral line in her right leg was removed. Just before this event happened dad got to change a diaper. Who would have ever thought that diaper changing could be looked forward to so much? Speaking of diapers, little miss Katie also made a messy diaper today as well. Now I know that most parents usually abhor those things, but for us this was an important milestone.

All this has happened so fast that we can hardly believe it.Our current schedule goes something like this.

As this progresses, take into consideration that we are not allowed in the room with Katie during shift changes. They occur from 6:30 until 7:30, morning and night. The doctors make their rounds in the hour or so after that. When they are in the room we have to leave in order to avoid hearing diagnoses or procedures on the other patients. So we tend to stay at Parker’s House until about 9:00 or 9:30. This way we get to get Michael up and fed and spend some good quality time with him. After that we are at Duke. We normally go back to Parker’s House about 6:00 or so each evening for supper, and more Michael time. Once he is in the bed about 8:30 or so, we scamper back to the hospital.

Tonight was an extra special treat. Hold on to your seats! We got to hold her!!! That’s right! Rather than watching her breathe, we were able to hold her to our chests and feel her breathe. This was another emotional ride! How long we have waited for this. Beth was a giddy school girl again! Tears of joy came from every eye in the room, except for Katie who was content to remain in her perpetual state of semi-consciousness thanks to the Morphine drip. Also for the first time since her birth we were able to hear the faint whines and whimpers of a child who has not been able to make a sound due to intrusive medical tubing chafing her vocal cords. This precious little sound was more like the sound of a tiny newborn kitten than that of a full term baby girl. We are elated to hear anything. We both long to hear the full out cry of our newborn baby girl. I am sure that desire will be short lived when we are at home and it is 3:00 in the morning, but I will not complain!

Yet another marvelous bit of news was relayed to us by Katie’s nurse this evening: tomorrow they will insert a nasogastric tube through one nostril into her stomach and begin “trickle” feeding some of the liquid gold that Beth has so graciously, and laboriously provided. This trickle feeding will initially be done with a syringe until they get her digestive system “primed”. If Katie tolerates this well, and her respirations continue to improve, within a day or two we will try to teach her to suckle and swallow normally.

We are very pleased at her progress. However, we have noticed that the staff here, while sharing our delight, is reluctant to provide too many positive predictions. I know that we are sharing all of the wonderful news of her speedy progress, but we all must understand that setbacks and future unknown complications are a very real possibility. We have not let our current successes and forward progress to lull us into a false sense of security. We are praying just as hard, and request the same from you.

Thanks again for all you have done for us, and forwarding along “Katie’s Story.” I am certain that once she learns about her miracle beginning she too, will thank you for all of your “knee time!

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