Monday, April 13, 2015

April 13 - Dear Nicholas Sparks (Guest Blogger Elaine Moats)

Dear Mr. Sparks,

I cannot believe 14 years have past by since our family 1st learned about CDH. Like they say "How time flies when you are having FUN!!" I am thankful for each day we have had with our Kristin after the rocky start she had. I won’t go into a lot of detail about our CDH journey because it is like so many of yours but I will share alittle. We live in a rural community in SE Montana with the population of 8500 people. My pregnancy was pretty uneventful. I had 3 ultrasounds in the first trimester because the doctor had trouble finding a heart beat. After that things went smoothly until my 8th month when my blood pressure would not stay under control. So at 37 weeks gestation the doctor induced labor. Like everyone we were anxious to hold our new baby, count toes, fingers and give kisses. Baby Kristin started having distress in the birth canal, they had no time for a C-Section so it was "Hang on Elaine" and life has not been the same since! The nurses were cleaning Kristin up and the doctor was sewing me up when he said "Do you need any help?" and the nurses said (as they ran out the door) "We’re going to the nursery, what is her name?" Next thing I knew I was alone wondering what was wrong. Kristin was born at 4:10 pm, the transport team from Denver, Colorado was here by 7 pm and by 10 pm we were on the jet to Denver. We would have been gone sooner but the team had trouble stabilizing Kristin. Kristin had no diaphragm at all on her left side and was fully paralyzed with drugs and incubated at 6 minutes of age. She was born with CDH, pulmonary hypoplasia, severe pulmonary hypertension and atrial septal defect. Our hometown doctor and nurses had never seen a baby like this so needless to say no one thought Kristin would live for very long. The nurses told my parents to say goodbye to her for the last time and my doctor released me to go with the team to Denver. Kristin had her surgery to fix her diaphragm at 9am the next morning. They performed it in the NICU because she was too ill to be moved to surgery. At that time Children’s Hospital of Denver was in the process of doing research on the effects of nitric oxide on different breathing problems. They had used it on 9 other children; Kristin was the first CDH child to have this treatment. It took the place of ECMO and worked great for Kristin so in this she was a pioneer. Nitric Oxide has been FDA approved since then. For 2 weeks the doctors kept telling us to be prepared for Kristin not to make it. But she proved them wrong and I got to finally hold my precious daughter at 2 ½ weeks old. What a wonderful day!! After a month at Children’s Hospital we were flown home to our local hospital. In the next 3 months we were in the hospital more than home. We could not keep Kristin’s right lung clear and her oxygen needs were increasing. Back on the plane to Denver we went. What a relief for me that was, to be going back to a hospital where they have dealt with other children that have CDH. Don’t get me wrong we had good care from the doctors at home but they knew when they had reached their limit, as far a Kristin was concerned. Children’s Hospital found out Kristin had been refluxing and that had caused all the infections in her lung. Back to surgery she went. She had a Thal Fundoplication and a G-tube was placed in her stomach. It didn’t take long for her lung to clear and for Kristin to stop nippling her bottle and become G-tube dependent. At 1 year of age Kristin had her ASD of her heart closed in hopes that she would come off oxygen. No such luck! That took another 13 months. See Kristin has never gone by the book on anything and still doesn’t! HA! For the first 3 years we pretty much kept Kristin secluded from people to try and give her lung a chance to develop without catching a cold or some other "bug". Our family called her the "bubble baby." Then once we were brave enough to take her out she was quite the "Velcro baby" pretty attached to mom and dad. To this day she is still afraid of most men (must be from all the doctors) but I know that won’t last till she is 30 years old like I would like! HA! It took until she was 4 ½ years old to get rid of the G-tube feeds. This battle is common with a lot of the Cherubs and since I love my food that was one of the most puzzling battles we faced with Kristin. One doctor wanted me to starve her into making her eat but I just could not do that. She is still not the greatest eater and is under weight for her age but she had been holding her own. Kristin’s reign as head of our household ended in 1996 when her sister Brittany was born. Brittany was a surprise from start to finish. Let’s just say both my girls like to make a GRAND entrance into this world. Brittany did not have CDH but was 2 months premature and had a leftsided lower ingernal hernia, which was repaired at 2 months of age. Kristin’s left lung never did grow much to be a lot of help in her breathing but that doesn’t stop her much. She would love to play sports but found out this summer at a girls basketball camp that she just can't keep up with them (and that was playing half court). So this fall she tried girls volleyball and LOVED it. She is also cheerleading for girls and boys basketball this winter so that will keep her happy. As far as colds and such go she sure handles them well. Her colds seem to stay in her sinuses, which is okay with us. Like I said at the beginning of this can’t believe we have come this far but we finally feel like a ‘normal’ family (whatever normal may mean!). My heart smiles when people learn about Kristin's medical history and they say, "Boy to look at her you would never guess she has been through so much." It has been a long journey but a rewarding one in the people we have met. Having a child with a disability sure puts your life into the proper perspective and we thank God each day for our little miracle Kristin Marie. Sometimes we felt we were the only ones going through this journey but since Cherubs has been started that has been a thought of the past. Before Kristin was born we had never heard of CDH. We have learned a lot since then. Before the Internet the only place to gather CDH information was the library. We spent many hours in the Children’s Hospital library reading about CDH. We came away thinking Kristin would only live to the age of 10 or 12. But as we found out in 1992 the medical technology to save CDH children was only that old. Research needs to continue and there needs to be more information about CDH out there. With Cherubs help we will get it out there so no parent has to wonder what is CDH or be alone in their CDH journey.

Written by Kristin's mom, Elaine Moats (Montana)

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