I wish I could tell you that there had been some marked improvement in Katie’s mouth today, but that is just not so. Her thrush is identical to yesterday. Granted that means it is better than three days ago. She has continued to hold her own with the bottle feedings however. This morning Katie took 30ccs from a bottle, and 21ccs at the midday feeding. She suckled her largest amount at 5:00 with 40ccs and then 30ccs at 9:00. All of these were eaten under great protest by Katie. She has also begun to “shut down” and simply go to sleep when she becomes frustrated with our efforts. The therapist says it is a coping mechanism. Even though she is obviously not enjoying these suckling sessions, it is almost like she has a “Love-Hate” relationship with the bottle. For very briefly it seems to be comforting her, at least until it begins to hurt. Then she forces it out of her mouth with her little white tongue. In a very short time she will want it back, and eagerly latch for a couple of seconds. After several of these cyclical actions the pain is more than she can tolerate.Even though this routine is very frustrating, I am still in absolute awe at the tenacity of these children. As I visit the Intensive Care Nursery and the Transitional Care Nursery, I see children in all variations of conditions. I have seen several children who weigh less than one and a half pounds. There are scores here that weigh less than two pounds. There are children with tracheostomies, colostomy bags, gastrointestinal tubes, and urinary catheters, physical and mental disabilities. Even with all of these factors obviously against them, none of these children gives less than 150% of themselves to survive. I have seen firsthand in my daughter that pain is not a deterrent for these children from fulfilling their intrinsic desire to simply live. To live in any capacity for these children is instinctual. I may hesitate in the future to call any infant “helpless” ever again. These babes are equipped with something that many adults do not own; MOTIVATION. It goes without saying that these little ones do not posses any sort vocabulary that would enable them to comprehend the words “quit” or “give up”. This in and of itself makes them far less “helpless” than many adults. I don’t understand how I can ever again tolerate people who stop all forward progression, or who complain and quit because “things” are difficult. One only needs to take a quick, heart stirring, and tearful trip through these nurseries, to put our seemingly insurmountable problems back into perspective. Getting though the next cycle of bills, going to a undesirable job, or tolerating traffic jams are incredibly insignificant when compared to seeing infants ,whose age is measured in days, fighting like world champions to overcome obstacles that they can’t even comprehend. This fight is all they know. To them this IS life, and no matter how bad it is, LIFE is more precious than gold. No amount of treasure can persuade these children to surrender as they have no sense of value except for that next breath, that next heartbeat.We could all learn a valuable lesson from these little friends. We should learn to put things in perspective, our God, our families, our friends our nation. We can choose the order that we rank things, but we should not let ourselves be distracted from what is most important just because it glistens or provides esteem. We not only should take stock in the value of this life, but also in the life to come.John chapter 12 verses 25 and 26 redirect us in this regard. “He that loveth his life shall lose it; and he that hateth his life in this world shall keep it unto life eternal. If any man serve me, let him follow me; and where I am, there shall also my servant be: if any man serve me, him will my Father honor.”Our lives here may seem endless, but as we know all too well, this life is only fleeting. Some of these babies’ lives are truly measured in hours. 60, 70, or even 100 years is merely a stitch in the immense fabric of eternity. Lord please help me learn the valuable lessons being demonstrated by far better teachers than I. These tiny professors of endurance possess remarkable talents for helping me rank the priorities of this life in order to save my life eternal.
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.