JenniferTenney

Dakota will be one year old on Christmas Day! I always wished I did a blog, so I thought I would start by posting her story in detail:
When I found out that my baby girl Dakota had Right-sided CDH (at 29 weeks), the first thing my OB said is that you will not be having Dakota here in Naples, Florida. I live in Marco Island, Florida where there is no hospital; the hospital in Naples, Florida is a 50 minute drive, and even that hospital has only one neonatologist and no level III NICU-no ECMO machines, etc. She told my husband and I that our baby would require surgery and that this is a serious defect, but she said if she had to pick a serious defect, she would pick this one because the baby can go on to lead a normal life after the surgery. (I later found out that this is a much more optimistic presentation than most parents get.) I went home and researched for 48 hours straight(I called in sick to work and didn't sleep). The diagnosis was not confirmed yet, but I just knew in my heart it was true and I needed a plan. Thank God I didn’t wait for confirmation! The first thing I found were the angel pages … I clicked off of them immediately. Then I found the basic Wikipedia explanations with the 50% survival rate. I started crying and crying. Finally, I started to find survivor blogs and one of them (PAR’s story) gave me hope and pointed me to the website realhopeforcdh.com which talks about Dr. Kays and Shands Hospital and his amazing work. I felt my tears dry and I felt a renewed sense of hope … Gainesville is only 5 hours from me! I set it up to go meet with Dr. Kays in Gainesville, Florida at Shands Hospital. This is one of the top programs for CDH in the whole country, with a survival rate of 92% … for babies who are born at Shands (more on that later). We set up to relocate to Gainesville on January 21st (I would be 36 weeks) and have Dakota by 39 weeks. Her due date was Valentines Day. Once up in Gainesville I was supposed to get two doses of steroids in hopes that it would help improve Dakota’s lung growth.
Well, Christmas Eve night I started to have really bad back pain. I had gone out to dinner and sat on uncomfortable bar stools and then drove 2 hours in the car so I thought, oh well, I guess my back is going to hurt for the next couple of months. The back pain did not go away. Christmas morning I started to get worried because it seemed to have small spikes in the back pain and the pain seemed to move lower. I think I talked myself out of believing I was in labor because I COULDN’T BE! Dakota was already going to be so sick, I was in the wrong town … she could not be coming more than 7 weeks early! Around 10:30am I finally asked my husband to drive me to the hospital to get it checked out. We arrived there around 11:20am and they quickly told me I was 8 centimeters dilated! I asked them if they could stop the labor and they said no. I just shut down. The world became very narrow and dark and I tried not to think about anything except for what I had to do. Everyone I saw-every nurse every doctor I would say “My baby has Congenital Diaphragmatic Hernia, she will not be able to breath, she needs to be intubated right away, then she needs to go to Dr. Kays in Gainesville, Florida.” I think I repeated that phrase 20 times. I saw that my OB arrived and I knew she knew about the diagnosis so I felt a tiny bit better. She told me that the neonatologist (the only one on staff!) was here and ready to intubate her. Everyone kept telling me it would be okay … but I just shut it all out. Since I needed to get her out, I was going to do it as quickly as possible. Within a half hour of arriving at the hospital, I was fully dialated (no pain medication of course-there wasn’t time-but I really didn’t feel very much pain because I was not focused on it), and they told me to begin pushing. I think I pushed her out on 3 contractions, in about 10 minutes. She was born 5 lbs 3 ounces (not all that small for more than 7 weeks early)! I did not get to see her, but my husband did and he did a great job of acting nothing but happy and proud. I just closed my eyes and continued to shut out the world. I was told she was intubated in what seemed like seconds after her birth. However, I also heard the OB say that there was meconium which she could have breathed in-I know this is not good! I was told she had a good score and looked pink.
My phrase now became to everyone I saw, doctors, nurses “She needs to go to Dr. Kays, Shands Hospital, Gainesville.” I had already repeated this around 5 times when the neonatologist came up to me and told me she was stabile and they were calling Miami. I screamed “NO!!!!!!! She is going to Gainesville, Shands Hospital.. I already have it all set up!” He said okay and then I was told about 15 minutes later that a team from Shands was coming in a plane and was on their way. I could finally relax. My whole family arrived and they kept coming in to tell me she looked beautiful. They could see her through her isolette.
Around 6pm the Shands Air people arrived and they wheeled Dakota in to me to say goodbye. I don’t remember seeing her face … but I just remember her little hand. I touched it and it curled around mine. I told her to fight and be strong and that I would see her soon. I told her I loved her. I looked up and the whole room was crying.
She was stabile all through the flight and the night of her birth. The next day she started crashing. Apparently she had an infection, which probably made her come early, which probably caused her to crash on her second day. She was put on ECMO … she was supposed to have a mild to moderate defect (2.4 LHR at 31 weeks!), she wasn’t supposed to need ECMO, but when she came 7 weeks early, all bets were off. I was driving up to Gainesville (5 hours away from my home) when Dr. Kays called me to tell me she needed to be put on ECMO and I gave my consent. Oh that was another thing-a lot of hospitals will not put a baby younger than 34 weeks on ECMO. Dakota was 32 weeks and 5 days. For some reason, however, the sign on her bed said 34 weeks. I don’t know if it was her relatively large birth weight, the mistake on her sign/paperwork, or that Dr. Kays would have given her a chance anyways… but he put her on ECMO and I finally got to see her that night. She was stabile and beautiful. I was in shock, and unnaturally calm. I was very positive she was going to be fine (honestly, I wasn't faking it ... I was very, very sure that she was going to be fine .. it was everyone else around me that wasn't so sure). She was supposed to be on ECMO a minimum of 10 days. Unfortunately, Dr. Kays was going on vacation for 10 days …. He had already delayed it for 2 days to get Dakota stabile, but we were left in the good hands of 2 other surgeons at UF Shands.
On her second full day of ECMO, the cannula in her neck got kinked and they could not get the flow through the machine that Dr. Kays had ordered (probably because of her premie size) ….yet Dakota’s numbers and blood gasses remained great … So rather than go back in and surgically replace or adjust the cannula, they began trials of Dakota off of ECMO-her numbers did not move down at all when they clamped the flow off. On her third day on ECMO, they took her off. From there forward, she steadily improved. Dr. Kays came back and performed Dakota's surgery on her 13th day. She had her intestines and about 40% of her liver in her chest. The hole was big enough that it required a patch. Amazingly, even though we were told she would get worse before she got better, her numbers never dipped after the surgery (she is my little overacheiver) so less than a week after the surgery she was put on CPAP. She did have some fluid accumulation which was putting pressure on her lungs, which is probably why she could not go strait to low flow oxygen, but she narrowly avoided a chest tube so that was good. Dakota was miserable on CPAP! She had a couple of rough morings in a row on it when we came in the morning and her oxygen was turned up to 100%. She had caught a staph infection in her PICC line. She was treated with antibiotics. I got to hold her for the first time when she was 3 weeks old! It was amazing .... I don't think I can even describe the joy and relief!!! Finally, after a long 10 days on CPAP (Dakota's heart rate had been a little high the whole time and finally Dr. Kays decided that was just her (I and my mom also have a naturally high heart rate) and to move to the next step anyways), Dakota was put on the low flow cannula oxygen and moved to NICU II. From there, we started trying to feed Dakota. Dakota was taking just enough to not be classified as having a oral aversion but her progress was at a snail’s pace and she had just enough reflux to scrape by without the Nissen/G-Tube surgery (the upper GI study showed reflux, but not enough for the surgery). I swear, in some ways that second month was harder than the first. We just wanted to take our baby home! Finally, with the push of a neonatologist, we got to do a trial for 48 hours without the NG tube and see if Dakota would eat enough. I stayed over in the hospital and did all the feedings. She did not eat exactly what she should have, but she gained weight (barely!). We got to take our baby home on her 2nd month birthday!
Since then she has been very hard to feed, but she gains weight (very slowly!) and follows her own growth curve, so we have struggled through it. It got a little easier when we began to give her solids at 6 months. She is still tiny (15 and ½ lbs and going to be one years old in less than a week!). But she is doing fantastic! She is crawling, pulling up on things. She loves animals and loves to zoom around in her walker. She is very funny and will make noises and then raise her eyebrows at us to get a reaction … if we laugh, she loves it! She is my utter joy and I thank God every single day for her. Now I read all those angel pages and I follow all the CDHers I can find. I feel it is my responsibility to give hope, as the hope I got from survivor stories was what carried me through that first month. I cry for and honor the angels by thinking of them and praying for them. I pray that the survival rate for CDH will improve and I pray that every family will get to experience the miracle I did. A CDH survivor is a true gift because we as parents treasure every single day and step.
So everything that could go wrong, went wrong -wrong day, wrong hospital, wrong doctor, no steroids, infection, meconium …. yet I got to bring my strong, beautiful girl home with me! She is my Christmas miracle and my Christmas gift-and I am never giving her back!