Monday, September 28, 2015

September 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

Hello, my name Kimberly Hager and I would like to tell you little about our journey with my son Jayden.  When I first found out I was pregnant with him I was strict with everything I done!! I watches what I ate, what I was around and took my vitamins just the way my midwife told me to.  Around 18 weeks I had an ultrasound and everything was alright and I wouldn't have to go back for an ultrasound.  I was fine up until 20 weeks and I had a strange feeling to change my doctors because I felt like something was wrong!  And that was the first motherly extinct that I started to have. I had another ultrasound because the second doctor couldn't see the the kidneys very well.  After 2 days of having the ultrasound I had a call at work from my doctor Mary.  She suggested I be seen by the University of Kentucky OBGYN because my son had a Diaphragmatic Hernia. At that time I never new what that was or what that meant for my baby's future!   I was scheduled 2 weeks later and had another of a many ultrasounds. This one was performed by one of the OBGYN and she was very blunt and didn't beat around the bush to my husband, mom, mother-in-law and I that day!  She explained that Jayden would be very sick when he would be born because of how his lungs were forming and that he had a 50/50 chance at birth.  Still, at this time I was not understanding why this was happening or how!! She proceeded to tell us that there really is no known cause for this happening and suggest we speak to a geneticist to see her opinion! The geneticist really didn't do much but take our family history down and ask if we wanted to "abort" the pregnancy! NO why should we he's still got a chance he still moves and is doing fine in the womb! Days, weeks and months past and he keep growing and growing! And I knew the days were ending when I went to my 3 to last appointment and I was having contractions. I was placed in the hospital and had him at 36 1/2 weeks!  That was an exciting but also a scary day!  He was delivered via C-Section and weighing in at 8lbs .7ozs!  There were no cries or whimpers from him and no holding him in my arms for the first time. No known skin to skin contact with him. He had a breathing tube places in the OR immediately after he was born.  He was on a convictional vent for a few hours blood gases where not good so he had nitric gas and isolator that put many breathes in at a time!  Later that evening the Peds Surgery Joe Iocono and Sean Skinner came to talk to us and explained he needed ECMO!  He was placed the next day on it and was on it for 17 days!  His surgery occurred while on ECMO 2 days of being on it! He went from 8 lbs to 45lbs total of fluids!  He was giving less than a 10% chance at this time!! He recovered from that and gotten a hematoma on his back from all the blood thinners giving because of the ECMO.  It was about 6 inches across by 7 inches pretty good size!  It busted that morning they were going to go in and fix it. Doctors had told us that morning it's less than a 5% chance to survive!  We prayed and that day our little Jayden came off of ECMO! But had a very long road ahead to fight hard and get where he is today!  He stayed with the nitric gas and isolator for 2 weeks and he pulled his breathing tube out! And was placed on a conventional vent.  The doctors decided we could do all his meds and treatments at home all we had to do is maintain a good air way because he wasn't coming off the vent!  So we choice for him to have a trach and vent placed so we could go home. He never took a bottle so he had a duo tube instead of a gi tube or a NG tube. So we had to learn to take care of all this equipment plus take care of his baby needs to.  It was very hard to understand why he couldn't come off the vent. So 3 weeks prior to him being discharged they did MRI. That confirmed he had more intestines up in his chest plus his white matter of his brain was damaged therefore the doctors claimed he would walk ever or have the same abilities as other kids his age!  We were sent home to do First Steps which is a program to help kids to do therapy.  Jayden begin in October around 9 months coughing and having problems we go back to Dr Skinner and he explains after looking at an X-ray more intestines is up in his chest! We were scheduled to come back the next day and have it repaired! We had a 50/50 chance of having a reherniation or having a Bilateral Diaphragmatic Hernia which is not common to see babies survive with!   We wait like it seems forever and the doctors and nurses come out with him in his bed coming back from the OR and our Dr Iocono came to me and my husband and explained he had. Bilateral Diaphragmatic Hernia!! As for those doctors Jayden was the first baby to survive with a BiLateral meaning he had a Left and Right diaphragmatic hernia. Trach and feeding tubes came off that day through the day and about 7 months later no vent at all. And in July of 2013 he had his trach removed and started walking 2 weeks later!  To this day Jayden walks, talks, has no sensory problems more and eats whole food. We had a journey worth him but he is a fighter but a loving fighter!!! But he is the toughest kid I know because most adults couldn't take what he took. I wanted to share our journey because there needs to be more awareness of this horrible monster.  Please help us spread awareness!! Thanks so much!!!

Kimberly Hager

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