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Our daughter was born Oct. 2017. I had went in for a regular check up with my Obgyn. I was just talking to my ob about how Avalynn didn’t move at the same time everyday. So she wanted to do a stress test. The heart rate was good so we moved on to the ultrasound. The nurse was quiet and left the room. The doctor came in shortly after. I was 35 weeks and my ob was telling me she wanted me to go downtown and see a specialist. She explained that the placenta was giving up and the umbilical cord had restricted blood flow. Avalynn wasn’t getting the nutrients she needed and my body was quoting her. I was distraught o started my 30 min drive and called my husband. Once we were there we had more ultrasounds. Shortly after we were told that Avalynn was going to come into that day! I was induced and gave birth to her 5lbs and 17inches long.
Everything seemed fine until her two-month check up. Our pediatrician heard a heart murmur. He said it sounded “innocent”, meaning not serious, but wanted us to see a cardiologist as a precaution! They also now wanted us to test for Trisomy 21.
When we saw the cardiologist we found out Avalynn had a hole in the center of her heart. They said it would not heal and she would need open heart surgery by four months of age. After this appointment we also found out that Avalynn has Mosiac Down Syndrome. We were crushed, our two-month old daughter had so much going on that we didn’t know anything about. We decided we wouldn’t tell the world about her Down Syndrome diagnosis yet, as we didn’t want the questions. We just want people to love her for her. That and the heart problem was already so much to focus on.
We got to four months of age and things were going great. Her tissue had covered the lower atrium hole so, they said we could wait until she was two or three years old before having open heart surgery.
However, her growing body and heart have shown us that the hole may be bigger than we previously thought. She is starting to show warning symptoms of heart failure. We no longer have the time frame we thought we would to enjoy her. In August 2018 we will have open heart surgery at the University of Iowa Stead Family Children’s Hospital in Iowa City.
We live two hours away from the hospital that the operation will take place, but we wanted her in the best hospital around. Unfortunately my husband and I don’t have the paid time off available to sustain us while we spend the two weeks in Iowa City. If all goes well she will come home but cannot go to daycare for at least another month. I’ll be staying home with her until cardiology gives the green light for her return to the public world.
This will be such a troubling time for us and we are a two income household. Not working during this time is not avoidable for me but we still have bills, food, gas, and new clothing that we will have to buy to accommodate her surgery. So we are reaching out and sharing our story in hopes that we can get the help we need to stay home and take care of her and not worry about the bills because we will be worrying enough about our little girl!
Thanks for reading our story and for all of your help and support! Anything helps! Anything that is not needed will be donated to a nonprofit charity for local families that have children that suffer with different illnesses and disabilities! Also please add our page that we are making for Avalynn so that you can follow us and have updates on our journey! https://www.facebook.com/Mending-a-broken-heart-Avalynns-Journey-182003605841639/