- C
- N
Please consider donating to help our family with monthly bills, food, and gas costs as we tackle Matteo’s CHD & CICU journey. Read below for a little recap of his past 6 weeks. I will continue to update weekly. Thank you so much for your generosity.
Lots of love,
The Funk Family
Marco and Matteo were born on August 4th, 2023, both at 8:47 pm. They entered the world together, but have since been separated living two opposite newborn lives.
At my 20 week anatomy scan, we learned of Matteo’s heart abnormalities. We followed with a cardiologist that did fetal echos throughout the reminder of my pregnancy. Matteo was always a stubborn one and hid parts of his heart during the echos. Because of this, we didn’t know his exact condition until after birth.
After birth, Matteo was taken straight to the NICU, had an echo, then was started on medication right away. At 12:45 am, he was transferred to UPMC Children’s Hospital. Matt spent the coming days with him at the hospital, while I recovered from my C-section.
Over the weekend, the doctors were able to get more echos and scans to confirm his diagnosis. Matteo presented with Shone’s complex (left side heart structures are smaller), a VSD, an ASD, coarctation of the aorta, and hypoplastic arch. On Monday, August 7th, Marco and I were released from the hospital. That night, I was able to go to Children’s to see Matteo. Unfortunately, Matteo’s heart problems started causing breathing trouble. He was intubated that night.
August 11th was Matteo’s big day. His heart surgery began around 8:30 am and lasted until around 5:00 pm. He did wonderful, but little did we know that was just the start of his journey.
The morning after surgery, our tiny 5 pound baby was almost unrecognizable. He was so swollen and full of fluid. His chest was still open because of the swelling. He had more tubes, lines, and wires on/in him than we could keep track.
On August 14th, Matteo developed a clot in his superior vena cava. He spent 8 hours in cath lab. They placed a stent and he was started on blood thinners. On August 15th, they closed his chest. Things seemed to be looking up.
Day by day, Matteo got fluid off and started looking like himself. Our next big hurdle was getting the breathing tube out. He was doing good and making process, until he wasn’t. The doctors did lots of tests and found that his diaphragm was injured during surgery. On August 28th, he went back to the OR for a diaphragm plication. We were so hopeful that would fix his breathing leading to extubation. Unfortunately, this was not the case.
These last three weeks have felt like a year, yet also like a blink of an eye. Matteo has really been through a storm… well, more like a hurricane, tornado, and a tsunami. He developed upper lobe atelectasis, a pneumothorax (and needed an emergency chest tube), a respiratory infection, and most recently chylous. Chylous is another complication of heart surgery. His lymphatic system was damaged causing fat from food to build up around his lungs. He currently has two chest tubes on either side to drain those chylous effusions.
I never thought I’d say that Matteo’s heart surgery was the “simple” part. His heart has looked wonderful since surgery. It is still in the healing phase, but the repair went beautifully.
Our obstacle continues to be his respiratory failure. He has been extubated and reintubate four times. We will continue to move ahead with the plan to check boxes, making sure nothing anatomy wise is preventing extubation. He gets stronger everyday and has finally started gaining weight.
Please say an extra prayer for our family, especially Matteo and Marco. I know they are really missing each other.
Lots of love,
The Funk Family
Marco and Matteo were born on August 4th, 2023, both at 8:47 pm. They entered the world together, but have since been separated living two opposite newborn lives.
At my 20 week anatomy scan, we learned of Matteo’s heart abnormalities. We followed with a cardiologist that did fetal echos throughout the reminder of my pregnancy. Matteo was always a stubborn one and hid parts of his heart during the echos. Because of this, we didn’t know his exact condition until after birth.
After birth, Matteo was taken straight to the NICU, had an echo, then was started on medication right away. At 12:45 am, he was transferred to UPMC Children’s Hospital. Matt spent the coming days with him at the hospital, while I recovered from my C-section.
Over the weekend, the doctors were able to get more echos and scans to confirm his diagnosis. Matteo presented with Shone’s complex (left side heart structures are smaller), a VSD, an ASD, coarctation of the aorta, and hypoplastic arch. On Monday, August 7th, Marco and I were released from the hospital. That night, I was able to go to Children’s to see Matteo. Unfortunately, Matteo’s heart problems started causing breathing trouble. He was intubated that night.
August 11th was Matteo’s big day. His heart surgery began around 8:30 am and lasted until around 5:00 pm. He did wonderful, but little did we know that was just the start of his journey.
The morning after surgery, our tiny 5 pound baby was almost unrecognizable. He was so swollen and full of fluid. His chest was still open because of the swelling. He had more tubes, lines, and wires on/in him than we could keep track.
On August 14th, Matteo developed a clot in his superior vena cava. He spent 8 hours in cath lab. They placed a stent and he was started on blood thinners. On August 15th, they closed his chest. Things seemed to be looking up.
Day by day, Matteo got fluid off and started looking like himself. Our next big hurdle was getting the breathing tube out. He was doing good and making process, until he wasn’t. The doctors did lots of tests and found that his diaphragm was injured during surgery. On August 28th, he went back to the OR for a diaphragm plication. We were so hopeful that would fix his breathing leading to extubation. Unfortunately, this was not the case.
These last three weeks have felt like a year, yet also like a blink of an eye. Matteo has really been through a storm… well, more like a hurricane, tornado, and a tsunami. He developed upper lobe atelectasis, a pneumothorax (and needed an emergency chest tube), a respiratory infection, and most recently chylous. Chylous is another complication of heart surgery. His lymphatic system was damaged causing fat from food to build up around his lungs. He currently has two chest tubes on either side to drain those chylous effusions.
I never thought I’d say that Matteo’s heart surgery was the “simple” part. His heart has looked wonderful since surgery. It is still in the healing phase, but the repair went beautifully.
Our obstacle continues to be his respiratory failure. He has been extubated and reintubate four times. We will continue to move ahead with the plan to check boxes, making sure nothing anatomy wise is preventing extubation. He gets stronger everyday and has finally started gaining weight.
Please say an extra prayer for our family, especially Matteo and Marco. I know they are really missing each other.