We finally had our sweet little baby after a loooong  process of infertility and pregnancy and truly thought we had our happily ever after.  Four days after Scarlett was born the hospital called us and said she had tested positive for some things they automatically tested for at birth. They wouldn’t tell me over the phone what they were and asked us to come in immediately to speak with them. Of course when you get a call like that, stress and worry instantly take over and tears begin to flow. Tyler and I were trying to be positive but couldn’t help but think the worst inside. As we drove to the hospital in silence I told myself, “ok, it can’t be too bad, she looks normal and they said she was perfectly healthy just that morning at the Pediatrician’s office,” hoping it was something like thyroid  issues that I had passed  down to her. After what seemed like hours  but was only about fifteen minutes, we got to the hospital and they took us in and told us about her disease. At first we were just in shock because we had never heard of a disease called  Phenylketonuria  or PKU for short, they didn’t really know how to explain it to us because they had never seen a case of it and didn’t have specialists at that location. Then we just burst into tears hugging each other. I will never forget standing in the hallway right after hugging Tyler and crying while people just stared and walked by, but we didn’t care.

We had no idea how PKU would affect her or our family, it was just so scary and so unreal. We were both so healthy, how could our baby get something so rare and random. Something that could possibly take her life or her mind when she had just come to our family.

The next few days consisted of constant sobbing and worry since we couldn’t get into Primary Children’s Hospital for days and her diet was what could cause brain damage, but we did have the amazing support of both our families and the prayers of many friends. Despite our pleas with God to get a call saying that it was a mistake diagnosis, we got the call that confirmed her disease. We then decided that we just needed to accept it and try to be as normal as we possibly could, “this is my new life and I have to be strong for her,” I said to myself over and over. That was 14 days ago. I am doing much better but I still cry about it. I know things could be so much worse so I am grateful it is what it is, and they found it just in time to let her live a normal life in most ways. I realize we did get our happily ever after, it is just a little different than we thought it would be and that’s ok.

What is PKU and how did my baby get it?

PKU is a genetic disease passed down through Tyler and I to our baby. In simple terms, or what I understand it to be at this point is that she can’t break down protein, therefore it builds up in the brain which then causes brain damage leading to severe retardation. This can all happen without the person even knowing what they are doing to themselves which is why she must always stick to her very strict diet for the rest of her life. Every baby in Utah is tested right at birth because in order to prevent brain damage it must be found in the first few weeks of life.

Her diet consists of a special formula and some fruits and vegetables when she is older. She will never be able to eat meat, dairy, beans, nuts, most grains, and certain fruits and vegetables which is why the formula is so important for her survival. It sounds terrible to most people but since I have talked to other moms with PKU children, I have realized that there are creative ways to let them enjoy food when they can eat it and not make it such a trial to them. Everything eaten is weighed out on a scale in grams so they can stay inside healthy levels of protein for them to grow and develop. We also do weekly blood tests to check her levels, and at about age five she can do them monthly for the rest of her life.

Against all odds, and I mean ALL ODDS, this disease came to our little family. One of Tyler’s parents and one of my parents carried the recessive gene of PKU (recessive means not dominant) and it passed down to Tyler and I also recessively. There is a 1 in 100 chance that Tyler and I would end up together and well, we were meant to be so that’s that. Because we both carry the gene all of our children have a 25% chance of having PKU and Scarlett was that 25%. One baby in every 15,000 is born with PKU. We also were told we had a 2% chance of getting pregnant with the procedure we did so Scarlett is just a miracle baby no matter how you look at it. Tyler decided that our odds were so good he should probably take a shot at the lottery;)

As I learn more about PKU and talk to other people who have it or children with it, I realize it is a huge lifestyle change, one that I know I can do and because I love my baby girl it’s so worth it. Although vacations, family dinner’s and even our everyday life will be different (much more organized and planned out) from what I imagined, they will still be amazing memories as a family. My little Scarlett is our greatest blessing and I just love being her mommy.

The post My PKU Baby appeared first on Kirsten Kizerian - West End Girl.

Miss Scarlett came very unexpectedly but dang was I happy to get rid of the back pain I had been suffering through. It all started with an instagram post I did that night, I think I cursed myself when I wrote that the thought of waiting two more weeks made me want to die. My husband had gone out of town for business and my doctor said I would probably go full term so we didn’t worry at all about his leaving. He had just landed and was driving to the hotel at 11:00 that night when we said our good nights. I watched one last episode of (who knows, I watched everything on Netflix, Amazon Prime and Vidangel that could possibly be watched) since I couldn’t sleep the last few months of pregnancy and tried to go to bed.

Suddenly after about thirty minutes I woke up in a panic because I thought I peed the bed! I jumped up really confused at what had just happened so I googled it of course After reading several women’s  similar experiences I decided to call the doctor and get their opinion on the matter. They told me to come in just in case so I did just that. I grabbed my purse and drove myself to the hospital. I tried to call my husband and my mom and five other people but by this time it was 1:30 in the morning and no one was answering so I just said, “Scarlett this better not be the real thing.” Needless to say, she didn’t listen and when I got to the hospital they told me it was go time.

I finally got ahold of my mom and she came for support. I am not going to lie, I was really scared, I was exhausted and kind of in shock and most of all really mad that Tyler wasn’t there. I called him again and he answered (thank goodness) and I told him to get the next flight back. Once he booked his flight, they told me they were going to try and stall until about 7:00 that morning so he would hopefully make it in time. They started the contraction medicine and since I was already dilated to a 3.5 and 80% effaced, I was at a ten in no time at all. I got an epidural but it only worked on one side so I was definitely feeling the pain. Just in the nick of time Tyler arrived which was at 9:45am, the same time they started to get the epidural to work completely. Then they told me to push and little Scarlett came out at 11:47 that morning.

I remember being so tired I was trying to sleep between pushes but I also remember how supportive Tyler, my mom and my little sister (who conveniently is a nurse) were with all of their encouraging words. It was everything and nothing I expected but it was so amazing. The minute she was born Tyler burst into tears…sobbing tears, I had never seen him cry more than a handful of times throughout our marriage and there he was just sobbing. I was so shocked I couldn’t cry, I just kept looking at him.

Her tiny little 6lb 2oz body was so special to hold in my arms and have my family and my sweet husband by my side. It was such an amazing experience and I will never forget it. I just can’t believe her little body was inside me this whole time.

We chose the name Scarlett Elaine Kizerian for a few reasons. One, I love feminine names that have a classic quality to them. I also love Gone with the Wind and how strong and beautiful Scarlett O’Hara is in the movie and when it came down to it, we both liked the way it sounded with our last name. Her middle name was a given even though it didn’t totally flow and it makes for a very long name. Elaine is a fourth generation name from my grandmother to my mother to me and then to Scarlett. My grandma was really excited about it and what could be better than that.

The post Scarlett’s Birth Story appeared first on Kirsten Kizerian - West End Girl.