Today was a day of almost stimulus overload. Information and events happened so fast that is was hard to process them all. So I’ll try to remember them as we go.This morning was another early rising for Beth and I. We actually snuck out of the house before Michael even got up. We made our way by Bojangles for a "hearty and nutritious" breakfast, which is always more work than it is worth. It would seem that this is the only establishment in Hillsborough that anyone wants to eat breakfast. The drive through line is normally out onto the side street and they have someone taking orders with a remote headset. For the past couple of mornings we have settled for somewhere else or no breakfast at all. This morning however, Beth had her dander up, and we pulled into the parking lot that was loaded to capacity. I just stopped in the middle of the full parking lot, and out she went into the eatery. In short order (pardon the pun) she was back bearing a hot breakfast. This seemed to make her day, as she had been longing for that Bojangles biscuit for days, but not willing to endure the hassle. Once this had been accomplished we hit I-85 running. We had completely devoured our morning sustenance, but had barely finished brushing the crumbs from our chins and shirts when we pulled into the parking deck. For some reason today Beth has been in what can only be described as a slow jog, power walk. I guess that 6th sense of motherly instinct had her in high gear and I was in hot pursuit. Little did we know what events and information that the morning would bring.When we entered the Transitional Care Nursery we were just in time to meet the speech therapist and to give Katie her morning bottle. After our nurse for the day completed her assessment and we changed Katie’s diaper it was bottle time. We tickled around Katie’s mouth a bit and got her to stick her tongue out. It looks much better than yesterday. Her thrush is not gone, and would still rate medical treatment for any other baby, but for us this is good! As soon as that bottle entered her mouth she went to work. In only a couple of minutes she had drained 20ccs from the bottle. Then the fight began. Over the next 15-20 minutes it was back to the old routine. We did manage to get her to eat 32ccs total before being persuaded to stop by the therapist. Beth and I were pleased with this amount. We were also happy that she did not cry at all and grunted very little. We are hoping that this is the beginnings of NO thrush!Before we had even finished feeding Katie, the Doctors made their rounds and saw her trying so hard. It must have made an impact because her orders were changed to now be fed every three hours and to try bottle feeding each time rather than every other time. We were also elated to hear that if she can consistently eat 40ccs by mouth for a day or two that they will remove the pump and see what she does. This will make her realize that all of her feeding must be done by bottle and that there will be none had otherwise. Her total volume per feeding should be 77ccs.This has really made our day, because now it gives us another goal to work toward. This does not give us a projected time for coming home, but it does feel like progress. This feeling is one that we have not genuinely felt in quite some time now.We also asked a day or two about her hearing screening as suggested by one of our friends, Donna. We found today, by Katie’s crib, the results of said test. It was simply a tri-fold with information about the screening and “Pass, Fail” boxes. Apparently Katie passed as the appropriate box was checked, however there was a hand written note that stated she was at risk for hearing loss and should be rechecked in 3 to 6 months. Thanks Donna for that reminder!The speech therapist has also tried several types of nipples as well, thanks to the suggestion of Mrs. Houston at the county office.So many parents have gone through similar situations that we are getting much valuable advice.On a sadder note, today in the nursery two cribs down from Katie, buzzers indicated that an infant had “crashed.” Several of these highly trained pediatric nurses quickly and professionally went to work about their business of saving this tiny little life. While Beth and I looked on, that dreaded “Code Blue” button was pulled, and alarms sounded. Doctors rushed in and “crash carts” were pulled from their convenient locations. The battle to fend off the strangle-hold of death’s cruel grip raged for several minutes. While these valiant heroes in lab coats and scrubs worked feverously, Beth and I prayed. Before curtains were pulled to obscure the efforts being made it was obvious that this child’s heart and lungs had simultaneously stopped. According to the monitors, for all practical purposes this babe had suddenly died without warning. Tiny and accurate little chest compressions and a miniature hand held bag ventilator were used to pull this infant from the brink of eternity. This time the fight was won, and the little one’s vital signs stabilized. However these breathless moments when our adrenaline was rushing, and we were overcome with the pains of empathy for the parents of this precious little one, served as a reminder once again about how precarious of a position many of these children are in. Once more we were reminded that we do not have to look far to find someone in far worse shape than we are. In this case it was about 15 feet.1 Thessalonians 5:18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.Thank you Lord for allowing Katie’s small progression today. Thank you Lord for sparing the innocent babe in the TCN today. Thank you Lord for your blessings both large and small. Thank you Lord for the blessings we do not see. Thank you Lord for the privilege of serving you!
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.