As we look back on our time here during our “adventure” it is hard to believe that tomorrow will be two weeks. In some ways it seems like years and in others, mere minutes.I had hoped to be able just to tell you all that were still at the status quo or better, however such is not the case. Upon arrival at Katie’s bedside this morning, we were once again greeted by our old friend the nasal canula. She is still having some trouble keeping her oxygen saturation levels up. We can handle this as it is only mildly intrusive, much, much better than intubation. Katie is not very pleased with it in conjunction with the naso gastric tube, and she quite frequently tugs at them, so much so in fact that both have had to be securely taped in place. All these things are nominal to us, as we are so proud of the strides she has been making.This evening was a different story. She was completely removed from the morphine at 5:00. By 9:00 pm Katie was showing signs of withdrawal. She is presently in a state of excited frenzy. Her little hands are contracted into white-knuckled fists. Those same little hands are in a continuous quiver. In nearly spasmic fits she will draw her knees from full extension into the fetal position and back again. On occasion her head will twitch uncontrollably from left to right in a reciprocating fashion. She is ravenously attempting to devour her pacifier or anything that gets near her mouth. If she, in her rapid shuddering, knocks the pacifier out of her mouth, she tries to eat her fist. The pacifier is one with a hollow nipple into which a finger can be inserted (not mine, a normal sized finger), and Beth says that she nearly chewed a bruise on her finger tip. Beth held her close for quite a while as she attempted to calm her tremors, but to no avail. We understand that this is a natural process and also an inevitable one, but it is difficult to see our daughter in such a state of confusion and unrest. The nurse practitioner finally approved a nominal amount of Versed to be administered in order to help calm her enough to rest. Hopefully it will also help slow her respirations which have been and extremely high rate today. At some points she was taking 90-110 breaths per minute. This may also be attributed to withdrawal symptoms. We were informed that this process normally takes two to three days, and that we should see steady improvements.Just as with everything else, it seems that Katie is above the curve. Our nurses told us that typically infants that have been taken off of morphine frequently enter a panicked state and not only tremble and jerk, but scream and cry. Katie is such a trooper that she has only whimpered and given soft little grunts. When we said our farewells for the day, she seemed to be resting tolerably, but not sleeping.Once again, as we often do, Beth and I searched for God’s message to us today. What was the silver lining? We are thankful that Katie will never remember this. We will never forget, but she will only have the memories that we give her as “Katie’s Story.” What a blessing that must be, to have all this suffering totally erased from memory. It reminds us about the memory of our Lord, once we have accepted him as our savior He totally forgets all of our previous pains, faults, shortcomings, and sins and casts them as far away from us as the East is from the West. Oh to be as innocent as this little child in the eyes of the great Judge!To many, these little snippets may seem to cry out “oh what pitiful stuff,” but to Beth and I, these daily thoughts are a source of strength and encouragement. We are assured by the Heavenly Father that we will never have more put on us than we can bear. Again for this we say “thank you Lord and we love 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.