What a crazy day we have had!The Lord works in mysterious ways. When Katie’s Story first began here at Duke, we were in the Care by Parent room anxiously awaiting any news at all. Then about four days later when we were asked to leave the Lord blessed us with use of the wonderful Parker Reese Foundation house.As mentioned in previous updates, Parker’s house is a true haven for those bereaved and weary as a result of children with CDH. I would be terribly amiss if I did not give this home away from home and its foundation members all of the accolades possible. With that said however, Beth and I felt compelled to move back home today in order to try to return to our old lives as much as possible. In order to facilitate this decision Beth and I spent much of last evening packing the last of our belongings and cleaning the house. We got to bed about 1:30 this morning. We had planned to get up early and come to see Katie and speak with the Doctor about our plan to expedite her departure, and then after her morning feeding we had intended to go back to Parker’s house and finish getting our things and meet with Ashley and Jessica Singletary who were planning a visit. As the old adage says: “the best laid plans of mice and men…..” Well you know the rest.We were a bit surprised that when the doctor came to do rounds this morning, it was he who approached the subject of us leaving and not us! We were a bit shocked! He said that all she was here for was for feedings, and that we were proving that we were willing to work with Katie. He suggested that Katie’s naso-gastric tube be removed and we stay in the Care by Parent room and have total control over Katie’s feeding and care just like we were at home. If Katie can prove that she will take in enough fluids then we can begin the transition home.Do I need to repeat that last word? HOME!!!!We have got to make sure that she gets in at least an average of 45ccs per feeding. This has proven to be quite difficult tonight though. This is because her thrush has come back with a vengeance. Katie was finally prescribed a drug called Genetian Violet. It was painted on the inside of her mouth. She looks like she has bitten the end off of a navy blue/purple ink pen and sucked the ink out. It stains quite deeply, but is supposed to be the cure-all for Thrush. We are again attributing Katie’s lack of intake today to the recurrence of the thrush. It could not have happened at a worse time. We really need to prove we can do this tonight.If Katie cannot consume all of her feeds and meds orally, then her naso-gastric tube will have to be reinserted. While this is not optimal we will be able to have a couple of in-services on the uses and precautions of the tube, yet still be able to take her home later in the week.We hope that she can prove her mettle tonight though. We did manage to get one 53cc bottle into her! Then we dropped back off to 35ccs, we’ll try again in about two hours. It is still a quite vigorous fight, but we are gaining ground!Needless to say we did not get back to Parker’s house this afternoon, Sorry Jess and Ashley! We also had to send Nanna Joan and Papa Bennie by the house to pick up our things, but it has all worked out.I think it appropriate that Katie’s Story here started in the very same Care by Parent room that it may end in!Either way we can now see the light at the end of the tunnel, at present it is partially obscured by the fog of uncertainty, but we do see light. And we are Praising God!Psalms 47:1 “O clap your hands, all ye people; shout unto God with the voice of triumph.” Friends let me tell you; if we go home this week we can rejoice unto the Lord with a voice of triumph! We must be cautious to not forget to thank the Lord for His work. We must give credit where credit is due. So often people will pray and ask God for something and then be ashamed to mention his name after the prayer is answered. Jesus tells us in Luke chapter 9 verse 26: “ For whosoever shall be ashamed of me and of my words, of him shall the Son of man be ashamed, when he shall come in his own glory, and in his Father's, and of the holy angels.” Lord we will never be ashamed to mention your works or give you thanks!
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.