Please support our family (The Petrilli’s) in the biggest challenge we are facing. Here’s our story.

On December 8th, 2023 our lives changed forever. We welcomed our precious little boy Alexander Brooks Petrilli, 7lbs 10oz and 20.5 inches long. Immediately after he came out via C-Section we knew something was wrong. They swept him away to the warmer and started working on him to get his lungs cleared out. They called in more of their team and he was rushed away to the NICU with Dad. Once in NICU they ran some test and found he had an undiagnosed heart defect called Transposition of the Great Arteries. He was started on medication and intubated in the NICU. At 5 hours old he was flown to Nemours Children’s Hospital in Orlando. We were left in complete shock as every ultrasound we had was perfect.

Shortly after his arrival he was taken to the cath lab where they performed an atrial septostomy. He also had a brain MRI done and it was found he had a stroke at some point. 6 days later he underwent the atrial switch surgery to fix the heart defect. The day of surgery we kept getting great updates, until we didn’t. Things started to take a turn at the end of surgery. His lungs started to hemorrhage before they were going to close his chest. He immediately was put on ECMO so his heart and lungs could rest. They also left his chest open because of the ecmo, swelling, and how unstable he was. No one could explain why he hemorrhaged. Things were rocky the night after surgery. He had a seizure.

The very next day they took him to the cath lab to make sure everything looked good and to find an answer. Everything with the heart repair looked fine. His heart functions were up and down. The left side looks okay and the pressures on the right side are still on the higher side which indicate pulmonary hypertension. The hemorrhage caused the lungs to become very sick. Hopefully once the lungs heal completely the pulmonary hypertension will resolve and the right side heart pressures will come down.

He was so puffy and swollen that it took 4 days to get his chest closed. A couple days later they had to remove the wound vac and take the sutures out. They found that there were pockets of fluid accumulating under the skin not allowing for healing. So it was left open with the wound vac attached. Every few days he gets it changed to help continue to close the incision.

Just when we thought we could start moving forward, we were faced with another problem. His drainage from his peritoneal cavity started to become cloudy and putting out a lot. It was diagnosed as chylous ascites. His little body wasn’t able to break down the fat in my breastmilk so it was basically spilling out. He was switched from breast milk to a special formula used for these cases. After many months and they know for sure it is healed, we should be able to resume breast milk. Also during this time they have been working to get his lungs better. He had a bronchoscopy to get a better look at them and was given two doses of surfactant to help. At one point they started to turn him on his stomach every night to help the lungs work a little better.

Currently they are working on conditioning his lungs to come off the ventilator. He’s been on it for a little over a month now. In order to come off the ventilator too he needs to be off his sedation too. They’ve been working on slowly titrating the sedation down and giving medication to help bridge the process and minimize the withdrawal. Watching our baby withdrawal is a very painful process. They have been able to slowly increase his feeds through his tube but he’s still having episodes of vomiting. They are trying different medications to help.

What we thought was going to be a 4-6 week stay in the hospital has turned into a few months stay at the very least. We are now faced with obstacles. We aren’t sure how long it will be for mom to be out of work, what to do with our other children (daycare is in question) and basic life finances. Gigi was the primary childcare until thanksgiving weekend last year she suffered a stroke. Lola has been able to take a leave of absence from work to be the primary care for our children while we stay in Orlando. Now that the time has extended to longer than what we expected; we are open to accepting all the help we can get. Through prayer, a hand, a meal, a donation, or anything that will bring help our way to give us one less thing to stress about.

We are overwhelmed with the ongoing support and we thank you!