I am pleased to inform you all today that Katie is doing much better.We called over this morning to see how she was doing as we had gotten a little behind and were later than normal in leaving our home away from home. Perhaps this was again the Lord’s hand in our journey here. It seems that the doctors were performing some sort of surgical procedure on another child in the room with our Katie, and the room was quarantined. I have discovered that some of these children can be so unstable they may not be able to survive the transition to an operating room. In those cases the operating room comes to them and the room is turned into a sterile place. That’s what happened today. We were not allowed to go in the room until about 3:30 this afternoon.We were assured by the nurse that she was doing magnificent.Once we were finally allowed to see our little one, I was very pleased to see that the IV in her scalp had been removed. All of her blood cultures had come back as negative for infection and the x-rays had shown that the gas/air pockets had nearly been reabsorbed by her body. We are so thankful!While I was there, the nurse inserted the naso-gastric tube, much to Katie’s dismay. This caused much gagging and coughing on her behalf in an effort to dislodge the tubing, but to no avail. It was securely taped to her cheek in order to keep her from removing it. After only a couple of minutes she began to settle down, and resume her normal demeanor. As a parent it is difficult to watch your child fight at such an early age against what has got to be very uncomfortable; however I understand that it is for her own good.Once this placement of the tube was confirmed as being in her stomach and not a lung, she was finally fed for the first time. Beth and I were elated to know that at least some nutrients were at last being given to her other than intravenously. The amounts of morphine that she has been given was again dropped to 10 micrograms (see I am a quick study, I found out what to call those thingies!). We were also pleased to learn that hopefully tomorrow she may be removed from morphine entirely except when she shows signs of discomfort.The feedings will continue at 5cc’s every 3-4 hours until she has proven that she is tolerating them well. Then the volume will steadily be increased. We will not be able to feed her from a bottle or breast until she is breathing less than 65 breaths per minute. At present she is averaging around 80 per minute. She is working on one and one-third lungs and seems perpetually out of breath. If we were to try to let her suckle for food she could very well aspirate some of the milk, which could cause pneumonia. This could also be life threatening with her lung capacity. We are content presently to use the syringe and naso-gastric tube.We are again very thankful of the strides our Katie has made toward recovery. As I have mentioned today in a conversation with one of my friends, we feel very blessed while being ever mindful of the sufferings of other families all around us. Sometimes it is hard to see the workings of the Lord, and many times we do not understand those blessings. It seems that when we pray for miracles they may only come in the strength to deal with a situation, not necessarily as the remedy to the situation. In that capacity Beth and I say “thank you Lord!”
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.