Wow! As I have heard said before, “have you seen any time laying around here,…I seem to have lost some! Where did it go?” Can you believe it? Friday marked six months since Katie was born!! Where does time go? Beth and I felt obligated to provide each of you with a Katie update on such a monumental occasion. For those of you who are new to the story see me and I’ll catch you up.
It is hard to imagine that just a short time ago our little girl had far more working against her than for her. There were SO many ways for her to depart this life, and so few to stay. Had she given up, who could or would have blamed her? Fortunately she has gone from seemingly barely holding her own, to being the vibrant and VERY happy little girl that she is. Katie nearly always smiles, quite frequently “sings”, and rolls all over the house. She has been weaned from all of her medications except the breathing treatments and one for reflux, which have been instructed to begin weaning in two weeks.
She still has physical therapy once a week, but her therapists can definitely see progress. I predict that within a short while she will have carpet burn on those tender little knees from crawling, as she is often on “all fours” and rocking! She takes an interesting stance with her right knee up and the sole of her foot on the floor, appearing quite like she is preparing to stand. In this fashion she scoots in more of what we call a “Cralk”.
This is the same little girl who spent nearly two weeks on a high frequency ventilator which made her breathe 420 breaths per minute. The very same little angel who had PICC lines, arterial lines, IV’s, replogle tubes, lines in her umbilical cord, and breathing nitrous oxide, blinders and ear phones. Katie had corrective surgery at six days, and then days upon days of morphine withdrawal. Let’s not forget the three weeks that it took to get her to take just one and a half ounces of milk from a bottle, naso-gastric tubes and all the fun of reflux associated with Congenital Diaphragmatic Hernias (CDH).
Beth and I often wonder where our baby went. We missed those wonderful days of snuggling with a new born. We had lost those quiet, dim lit evenings rocking, and all the little things that people take for granted like caring for a new little belly button. By the time we “got” her, the “new born” had been stolen away from us by CDH. Now we face her accomplishments such as holding her head up, then rolling over, crawling, learning to sit up, and eating stage one baby foods with mixed emotions. On the one hand we are very proud of our little girl and encourage her 100%, however it is tempered somewhat by the knowledge that her beginnings, being atypical, were spent in the Duke Intensive Care Nursery. As parents who really lood forward to the parenting experience, we seem to have skipped that very first part of her life.
We could hardly wait for Michael to do all of these milestones. With Katie, the smiles come moistened with tears.
During our family’s journey over the last six months we have come to know and love some very remarkable people. People who were strangers once are now family. From the home away from home given to us by the Parker Reese Foundation, to Katie’s CDH/Intensive care cousins who lived,….and died, while at Parker’s house and Duke. Our families have a bond tethered not by blood, but by pain, paralyzing fear, uncertainty, loss, victory, setbacks, and fret. It is hard to imagine that such a relatively short period of time can define a person. Experiencing such things can test the mettle of even the strongest of people.
I know that Beth and I have changed because of this. We are better spouses; we are better parents; but most importantly we are better people. Our love for God and family has only gown. We have tested the power of prayer and faith, and God has shown once again that He is in control. We can only give Him honor and praise and glory, undying gratitude,… and our hearts and souls.
We would like to thank all of the fine Medical Personnel at Duke for facilitating God’s healing touch in our little Katie. We would like to thank our family, friends, and coworkers who have stood beside us during the most difficult and trying times in our lives. Always and forever more we will thank the Almighty for giving us our children.
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.