I wish that I could report some astounding achievement for today, but alas, we have gained no ground. Katie still will not eat more than 4-5 cc’s of milk. Then it’s lights out. She just goes limp and into a perpetual state of hibernation it would seem. I even tried to use a cold baby wipe to lightly brush across her brow in order to help arouse her. That did not even work. For the past several days she has also been treated for Thrush. At one point her tongue was almost solid white. After changing her medications she does seem to be making strides I that regard. We contribute some of her reluctance to eat to the Thrush. It must be uncomfortable to swallow in that condition. We will continue to wait for slight improvements.She has had several tests done today, including an MRI, and a pulmonary function test. The latter of which indicated that she required treatment by nebulizer twice a day. Katie has still not made any gains in weight either. The nutritionists say that she should be gaining about an ounce each day. At three weeks old she is still half a pound lighter than when she was born. Her rapid respiration just uses more calories than she can consume. To combat this issue, the nutritionist had ordered that ½ teaspoon of high calorie formula be added to her milk. This is supposed to help her gain weight. Who would have ever thought that a Cole would be trying to GAIN weight!?Emotionally it has been another hard day around here. It seems that the roller coaster of highs and lows is getting faster and the dips are getting deeper. Michael is a good litmus test of this. He can pick up on our dismay and reflect it as well. Today he has been hard to handle. He has been quite disrespectful and defiant. This is terribly uncharacteristic of him. No amount of time outs or other disciplinary action has seemed to stem the tide of his belligerence. We understand that this is a part of his coping mechanism and age, but it can be hard to endure.Our undying and overwhelming desire to go home is forever on our minds. Rather than continue to temporarily pitty our situation we must focus again on the good. Inspiration comes to us from the strangest places. These little snippets of focus must only come from God. You see, there is one of those little daily devotional calendars in our bedroom here at Parker’s house. Like many of these little calendars it is often neglected and not turned. Truth be told, I am unsure if it was ever on the right day. However this morning as I was passing by it atop the chest of drawers, I paused long enough to pick it up and read what had been staring at me for who knows how long.Here is what I learned:It is an undeniable fact that usually those who have suffered are best able to comfort others who are passing through suffering. They know what it is to suffer, and they understand more than others what a suffering person is experiencing—physically, emotionally, and spiritually. Our attitude toward suffering should not be “Grit your teeth and bear it,” hoping it will pass as quickly as possible. Rather, our goal should be to learn all we can from what we are called to endure, so that we in turn can “comfort each other and edify one another” (1 Thessalonians 5:11).We are ordering our steps per the Lord’s direction. His will does not take us where His grace will not protect us.
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.