We have had a wonderfully boring day! I know that seems a bit counter productive. However anything not going backwards is good for us. Katie is still doing remarkably well, Beth is not. She had to go back to the Doctors office yesterday. Her blood pressure is still high. She is fighting severe fatigue from worry, lack of sleep, traveling up and down the highway and bouts with her stomach. She was up about every 20 minutes and in the bathroom last night. At this point it was remarked by a family friend that Katie looked better than Beth.With that said I left Beth at Parker’s house and went for my morning visit alone. This was a wonderful experience as I got to hold my darling Katie for almost two hours.She has been showing signs of much labored breathing most of the day. Her little diaphragm has been working overtime to make up for eight days of artificial respiration. So the decision was made to keep her morphine drip and IV fluids at the same rate, for one more day to allow her body to adjust to life on its own. Perhaps tomorrow if she is strong enough, we will be able to introduce a bit of momma’s milk. We did have a third messy diaper, and she is becoming quite gaseous. This is of great delight to mom and I, as this is evidence that her bowels must be working properly. At least we pray to that end. After the obligatory trip back to Parker’s House for some Michael time and supper, Beth and I headed back for our evening Katie “fix”. What started out as a fairly hum-drum day, turned quite exciting!As luck er…..uh misfortune would have it as we exited the doors of the parking deck elevator on the Rapid Transit level, the doors to the rapid transit shuttle were opening. For those of you who are fortunate enough to not be familiar with Duke University Medical center, there is a rapid transit tunnel that runs under Erwin street to the bottom floor of the hospital. One can either walk the tunnel, or catch the little tram like shuttle. This shuttle more resembles a horizontal elevator. We entered the shuttle with another couple and their eleven year old son. After the short ride through the tunnel, we were surprised that upon arriving at our destination that the outer doors opened but not the shuttle doors. Hmmm? We all said in unison. What is this? Then the outer doors shut and the lights went out. Then is when the mild panic set in. There were emergency lights, but we were stuck. After pressing the emergency button several times, we noticed a service technician through the window. He promptly climbed into the shuttle through a window and quietly and professionally began to dismantle several control panels. After several minutes of frustration at the lack of response to his calls over his radio, he then manually disabled the door locks and we pried open the doors. Not once did he speak or smile at any of the occupants. His work went uninterrupted even by the extremely inquisitive pre-teen. We thank this unsung hero of the underground transit system for freeing us from what could have been a long and boring night.This may have been our last trip on the rapid transit shuttle.Once to Katie’s room I was delighted to just silently watch my loving wife cradle our delicate little one in her arms. Beth also managed to introduce a pacifier to her. No one else has been able to get her to suckle. Many of these babies lose the instinct to suckle and swallow after intubation. Many lose the coordination to suck, swallow, and breathe. After a little coaxing Beth managed to get her to perform these tasks quite well. We were very proud of her. Not only is she a physically strong fighter, she is also a quick study.I am sure that this update has been far less riveting, but rest assured that it was much easier to type without having to squint through tears. I hope that in the coming days, I too will be able to say definitively that this may be the last update. Until such time as we are blessed enough to return to our own home, and bring our entire family, I guess I will continue the daily updates for the hundreds of people who continue to request them.Please continue to pray that our Heavenly Father will persist with his blessings for our Katie. We know that without him, the successes that we have recently enjoyed would not have been so expedient.May God shower his blessings on each of you as well, for the continued support you have shown for my family. Mere words cannot express the gratitude that Beth and I have for each of your efforts.
We are Andy, Beth, Michael, and Katie Cole. We started blogging in the spring of 2009 as we dealt with the life-threatening birth defect of our daughter, who had a Congenital Diaphragmatic Hernia. But now she is now a happy and healthy one year old and we want to share more of our life than just "Katie's Story." We emerged from this most difficult time with a stronger marriage, a stronger family, and a stronger faith. Please join us as we live our thankful life!
A congenital diaphragmatic hernia, or CDH, is a birth defect that occurs in approximately 1 in 2500 live births. Half of those babies will NOT survive. Babies with CDH have a diaphram that was not formed correctly and this hole allows the abdominal structures such as the liver, spleen, and intestines to migrate up into the chest cavity. Because this usually happens so early in gestation (usually at 8-12 weeks), it interferes with the normal growth of the heart and lungs. Most of the time the lung on the affected side ends up being only a fraction of a normal sized lung at birth. This doesn't usually cause problems until the baby is born when they need those lungs to breath air for the first time! At birth, this is a life-threatening emergency that will require surgery to repair as soon as the baby is stable enough. Following surgery, there is most often a long, slooooowww recovery process.