Down with Down Syndrome: The Unknown

Ok earlier when I talked about the fear of the unknown well this post will explain just one of many trials we have had to go through in such a short amount of time.

Kloe was born at a healthy seven pounds one ounce and was relatively healthy other than the heart problems we knew about. She was also a great nurser even though everyone told me she wouldn't be. The only problem we had was she would eat and about five to ten minutes later she would get sick. This wasn't just your average baby spit up, this was everything she ate all at once all over everything kind of sick. It was awful. We had to take her into the doctor for her check up and she had lost weight just like most babies do but because she was gaining any back we had to go in every two days for a weight check. Every time it would be the same story she eats, she throws up, and she kept loosing weight.

Watching your child starve to the point of hospitalization was the hardest thing, and something no parent should have to watch their child go through. After two weeks of a constant weight loss Kloe was admitted to the local hospital for failure to thrive. This was devastating and I felt so helpless as a mom and I would admit at times I felt like a failure. They ran test on her and as soon as we got there they started an IV and put a feeding tube down her nose. After two days with no improvement the decision was made to transfer her by fixed wing to Primary Children's Medical Center.

The nurse at the hospital told me that only one of us was able to go with her and I knew that was their way of saying that I needed to go home and pack a bag and that Kody would have to drive our car up and would be at least four hours behind me. I went home and in a panic packed the things I thought I might need and headed back to the hospital. The fixed winged nurses arrived not long after I had returned and prepared Kloe for the flight. My mom and dad were on their way to come pick up Briley and the rest of our support team was there including Kody's parents and my best friend. We were ready to leave and I remember walking down this hallway and every time we passed someone they would give us a look of pity and it was terrible. I was a wreck and scared not realizing what poor shape Kloe was in. When we reached the end of the hall and walked outside they loaded Kloe into the back of the ambulance, I gave everyone a hug and followed. The moment they shut the door behind me a sudden realization came over me that I was alone. I knew that I wasn't going to be alone for long but for at least the next few hours I would have to be alone. We arrived at the airport and we both got loaded into the plane and started to take off. I had a pit in the bottom of my stomach and was so afraid of what the next few hours would bring. When we finally arrived at the hospital I saw an angel waiting for me at the door. It was my cousin and through her own challenges she was very familiar with Primary Children's. She was there to wait with me until Kody could arrive. I don't know what I would have done without her there and there is nothing I can do to repay her for her support that day. 


Kody arrived just in time to meet Kloe's doctor and within the first few hours of us being at the best hospital we knew what was wrong with Kloe. She had a full blockage of her intestine which was not allowing any food to pass through. Her stomach would just fill up until it couldn't hold anymore and then she would get sick. We were in the hospital one week so that Kloe could be stable for surgery and exactly one month after Kloe was born(and on my dad's birthday) Kloe had surgery to cut her intestine and reroute it so that it would function properly. 

Her road to recovery was long and the days all blended together. Other than watching Kloe sleep and us not sleeping ourselves we didn't do much. We would try to get out of the hospital for short periods of time after one nurse told us we had the most expensive babysitter and we needed to leave before we went crazy. We even got to have Briley with us for the weekend and took her to the zoo for a few hours. During her last week Kody had to go home and get back to reality. We had so much support while we were up there from our family and friends that it didn't seem like the end of the world this time when Kody had to leave. The week passed and after almost four weeks in the hospital and missing my older daughters second birthday we were able to go home. Although this was the hardest thing up to this point in my life I learned that we can get through anything. I learned a very valuable lesson while at the hospital. God knew that Kody and I would be able to handle all the challenges that come along with Kloe, but more importantly the way we would handle them wouldn't just be through our own strength. We have been given the people around us for support and love who have helped us every step of the way and without them and the doctors at Primary's I know our outcome would be a lot different. I never felt so loved and support as I did in the four weeks we were in the hospital and my gratitude for all those who helped us is un-measureable. 

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