My family was thrown into the CHD world five years ago. Although our journey to be a family has been much longer than that.
After battling infertility for 10+ years my husband Jeff and I were finally able to conceive twins via IVF. At my 18 week anatomy ultrasound I heard those terrible words..."there's something wrong with your baby's heart". They weren't sure of the specifics but they warned us that it was bad. Immediately all prenatal care was transferred to Mott children's hospital (world renowned pediatric heart center).
My boys were delivered at 36 weeks and we were given Ronnie's diagnosis- criss cross heart, double outlet right ventricle (DORV), pulmonary atresia, ventricular septal defect (VSD).
His first heart surgery was at 4 days old. He had a BT shunt placed as a temporary measure, to buy time for him to grow so a larger repair could be done.
After nearly a month we were finally able to take our boys home!
Ronnie did well at home for the next several months. At 6 months old he was getting worse (inconsolable, low sats, bluer appearance) we brought him to a local ER and they were unable to provide care for him so they life-flighted Ronnie to Ann Arbor. He spent a week in the hospital and we were told that his next surgery would be 3 weeks later.
At nearly 7 months old, Ronnie had a senning rastelli operation done. It is one of the most difficult surgeries and the recovery was brutal. Ronnie was inpatient for almost 3 months and most of that time he was in the icu. He had a 3rd open heart surgery during that time, to repair a vsd patch lift. These months were by far the most difficult months of our lives.
During a cardiology appointment 10 months after his discharge, it was discovered that his right ventricle outflow conduit was severely narrowed and needed immediate intervention. We were told to prepare for OHS #4... but by the grace of GOD and brilliant team at Mott, they were able to place two stents via catheterization.
Ronnie is currently doing well and keeping up with his twin brother Roman.
But.... he WILL need more surgeries and this fight WILL continue.
CHD RESEARCH IS VITAL!!
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