Sean and Lani are the parents to Nina, an incredible five-year-old heart warrior with a single ventricle heart, hypoplastic right heart syndrome (HRHS), pulmonary atresia, tricuspid atresia, and MAPCAs. Nina has undergone the Norwood procedure/BT shunt at 8 days old, unifocalization for MAPCAs and shunt upsize at 6 months, Glenn shunt at 21 months, and Fontan at 4.5 years.
Watch for our next post with Nina!
From Leigh Ann’s Mom:
We found out about Leigh Ann’s heart condition at her 20 week ultrasound. The doctor saw something was missing from her heart and told me not to worry, and that doctors could fix her. We were sent to Texas Children’s Hospital three days later for a fetal echo. That is where we found out she had HLHS (Hypoplastic Left Heart Syndrome). It was so foreign to me. I knew nothing about heart conditions, let alone HLHS. We spent the next few months mentally preparing ourselves, researching, attending multiple doctor appointments, and decorating her nursery hoping she would get to actually come home to it one day.
She was born a week early by c section because she was breach and went immediately to the CVICU (Cardiovascular Intensive Care Unit) at birth. On day seven, Dr. Fraser did her Norwood surgery. One week later she coded and we thought we lost her. She remained intubated for the next two weeks while doctors tried to figure out what happened. It is still unknown. She never got to the leave between surgeries because she continued to get NEC, which is basically when the intestines start to die due to lack of oxygen. So she lived on TPN until the Glenn surgery was done four months later on July 11th. Tell a mom you can’t feed her baby? That was the hardest thing for me.
We remained in the ICU for two more months after because of her lung pressures and because she needed to be on Nitric oxide for several days. We also continued to battle reflux issues, so she received her GJ tube, which was a blessing in disguise. Her stomach just was not ready to be fed yet. A week before we discharged she had a cath done to coil collateral vessels that were stealing oxygen from her heart. Her oxygen saturation was immediately better and she was no longer a purple color; she was pink!
They discharged us from the ICU instead of the step down unit because the nurses knew Leigh Ann well and felt it was best they discharged her themselves. September 29th we got to go home! She has been home every day since, besides a 24 hour hospital stay over Christmas for the flu. She is almost 100 % fed by mouth now, but still has her tube for night feeds. She crawls, talks, and is happy as can be. She receives in-home nursing twenty-six hours a week and adores her nurse. She receives speech, physical, and occupational therapy twice a week as well. She came home on thirteen medications and now is down to four meds. It makes such a difference.
In September she will be having an elective cath to balloon open her arch and possibly coil more collateral vessels. They will also check her lung pressures as we near the Fontan procedure in a few years.
How Are Things Now?