The veil of my despair was parted today, if only ever so slightly. After a somewhat restful night, full of dreams of adventure hunting wild turkeys, I rose early showered and prepared to meet another day. Once we had spent our morning hours with Michael, Beth and I sped off to Duke. By the way, in the coming days I plan to attempt to calculate all the miles we have driven to and from the Parker Reese house to Duke and back, plus each of my trips home to work and let Michael nave some time at daycare. In retrospect, I am not sure if that would be a good idea. I’ll have to ponder that.Anyway, Katie was doing well this morning. As I neared her crib I was met by big bright eyes which seemed to be purposefully examining anything within eyesight. It was all I could to not just scoop her up and squeeze her! Beth may have fought me for the first smooch though. She looks so perfect. We were quick to inquire about her bottle feedings to only discover that she had slipped back into her dislike of the nipple. Even after much coaxing she had only eaten 3 or 4ccs from anyone. Even when I tried again at the 1:00 feeding she fought the bottle and readily latched to the pacifier. Such frustration! We again had a brief meeting with the Nurse Practitioner and nurse who were caring for her today. They reassured us as all of these kind folks do, that this is normal for CDH babies, and that one day it will just “Click”, and she will drain the bottles. This has been our desire and prayer of late, “Lord just let it click.”This was all forgotten soon after Beth picked up Katie for her morning snuggle. Katie’s face began to contort into all types of interesting expressions, and then with the unmistakable sound of diaper vibration it happened…….Mount Saint Katie erupted! It was quite humorous to see the look on Beth’s face as we realized that the diaper Katie was wearing was not sufficient to hold all that had been deposited, and it had filled the hospital blanket that she was swaddled in. Not only that, but as that wonderful swaddling cloth is not water proof, the proof was also left on Beth’s Knee. The instantly recognizable pungent aroma sent me into a giggle that only a parent who has had it happen to them can understand. My guffaw was met with an understanding smile from Beth, and we set about the business at hand. This was a tag team effort!After much washing, and who knows how many baby wipes, we were nearly done. Once the new diaper had almost been fastened, those faces began to appear again. “Uh Oh” Beth muttered, and no sooner than she had said that, Katie erupted again, this time from the other end. With out hesitation Beth rolled her onto her side. Then the unexpected; yet a third eruption into that brand new diaper. It may sound strange to those of you reading this, but to us this was almost as good as being at home. For briefly we were consumed with the somewhat normal care of our baby. Anyone who has had the privilege of being a parent can relate to that. These are normal parenting issues that, while messy, brought a comforting familiarity to Beth and I. Much to Katie’s displeasure, as well as many onlookers in the room, Beth and I had a good chuckle while changing the babies clothes and bed linens. These are the same untidy functions that we will face frequently at home. It was a welcome distraction, and strangely enough, the highlight of my day. Nanna Joan had earlier given Katie the nickname “Katie Poo,” she didn’t know how accurate that name might be.Another ray of hope was the mention of us receiving a discharge packet. Beth and I were a bit shocked to even hear the “D” word. The Nurse told us that it was just a packet that we were to read at our “leisure” (do they still make that?), so that when IT clicked we would be ready to go. Alas that was the last we heard of any “D” word packet. Of course we never saw one either.Today was also a day that the grandparents and great grandparents got in cahoots and carpooled ever soooooooooooo slowly to the hospital to see Katie. Each one in turn was able to come back and visit and spend a little time holding her. I took lots of pictures which I will have to share at a later time, as I have forgotten the USB cable for the camera and left it at Parker’s house. I will see if I can remember to add them at a later date.I was late getting back to Coats tonight with Michael due to the storms raging across the state. I was about an hour and a half late getting my boy to bed this evening. As we have come to understand, summer storms can be sudden, frequent and violent. The same holds true with our lives. All too suddenly a storm can overtake us without warning, dropping immeasurable amounts of rain onto our otherwise sunny days. The Lord and creator of all things is still in control. Psalms 107:29 reads “He maketh the storm a calm, so that the waves thereof are still.” Again in Mark chapter 4 we read where He calmed another storm at the behest of his disciples, verse 39 and 40 read, “And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm. And he said unto them, Why are ye so fearful? how is it that ye have no faith?” Upon the realization that this was God’s lesson for me today I also prayed “Refresh my faith anew oh Lord. I know that you control the storms in my life.”I am now ready to peacefully put my head to pillow, and continue my dreams afield. 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.