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Isovaleric Acidemia

2008 was a crazy year to say the least! I found out I was pregnant 8 weeks in…wow, was I surprised!  For four years prior I was told I would never have kids because of my own medical problems, and here I was, on my way to being a mommy! Over the next 6 months, I was laid off twice and moved once. I had little hope of surviving without the help of our local DHS and was made well aware of the challenges that were ahead of us. My pregnancy was fairly normal, although Sage measured a little big for her “age”. First the due date was November 1st, and then it was pushed forward to October 15th. Finally they landed back on November 1st. I had a total of 8 ultrasounds done and nothing caught the abnormalities to come.

October 31st started like the previous four weeks had. I got up, threw on the cleanest clothes I could find, grabbed breakfast and headed over to my best friend’s house. We went to lunch at Subway when I started feeling really bad contractions. Within an hour while walking around Sam’s Club I announced to Jill it was time, I could no longer handle the pain. We arrived at the hospital and I spend the next several hours rocking back and forth and leaning over a ball to get Sage to change her position. My water wouldn’t break until I was 9 cm and already exhausted. The epidural they had put in me came out…I was in pain all over. When my water broke, Sage came down just slightly, but her cord was wrapped around her and pulled her back up. 20 minutes later I was out cold in the OR having a C-section.

Sage was born at 8:36 pm. She was 7 lbs. 6 oz. with a head full of hair. The first 5 days in the hospital were scary! Sage was very quiet, cold and uninterested in eating. They started to supplement with Enfamil and within 24 hours the smell was very apparent.  My mom says it was metallic like and when this was brought up to the nurse, they said they hadn’t washed her ears out right. She still wouldn’t eat and was still very cold. The nurses threatened to take her from me because I couldn’t keep her warm!

At day 5 of life, we finally got to go home! We spent the night at my mom’s house. It was SOOO cold! I held Sage close to me and tried with all my might to feed my very weak baby.  The next day we had an appointment with her new doctor. After being in the room for about 20 minutes, the doctor left to look at the Newborn Screening results. He came in, and asked if Sage had eaten yet. I said no. The sadness in his face is something I will never forget. He paused, looked at me and said “You need to head straight to the PEDS floor in the hospital. Go to the main entrance take the elevator up to the 3rd floor. They are waiting for you” It took us about 15 minutes to get there and get up stairs. They hooked Sage up to an IV and did another heal poke. A doctor came in to tell me they suspected Sage of having a metabolic disorder. Things flew by for the next few hours. Jill came to take me to dinner, her convincing words of “it will be a long night, you need something to eat”. As we came back from dinner we got a call…They were taking Sage to Denver, I was losing my baby girl! I ran up to the third floor and dropped everything as they picked her up and put her in the incubator. My heart pounded with pain, sadness, anger, frustration and lack of information. I cried. I cried so hard I wanted to believe it was a dream, just a bad dream.

At Denver Children’s I was rushed up to see Sage. There on a little table, almost as lifeless as could be, was Sage. She had 3 doctors around her, working on her. Oxygen tube, feeding tube, IV, pulse ox, and a few other wires ran down the sides of the table. I wanted to pick her up and just leave. I had no understanding of what was going on.

Sage was officially diagnosed with Isovaleric Acidemia (IVA) at 5 days old. She stayed in Children’s hospital for 11 more days. She is now 3 years old. We have fought our share of battles. Sage has been admitted to the ER for dehydration, salmonella, and once for high fever. She has been through a feeding clinic and underwent a speech screening this past December. She is now eligible for an IEP involving speech. Sage takes Xleu Maximaid mixed with whole milk. She was recently taken off Enfamil. Her medication is only Levo-Carnitine.  She loves her berries, pizza, pasta, coconut milk and sugar! There is never a dull moment in our house. Today Sage is the healthiest she has ever been!

Sage’s mom, Ann

Colorado Springs, CO
Taken from the Spring 2012 OAA Newsletter

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