Heart of a Warrior- Arabella's CHD Journey
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Some starts in life are more challenging than others.
At our 23 week ultrasound we were informed that our baby girl had a complex Congenital Heart Defect. They diagnosed her with Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries, Ventricular Septal Defect and a pulmonary stenosis. We were told that after birth, she would need multiple surgeries to repair the issues.
Arabella Rylee Blados was born Tuesday, July, 16, 2019.
On July 20, she was medically transported from CHKD NICU in Norfolk, VA to UVA Hospital in Charlottesville, VA for an anticipated surgery. She spent 5 days in their neonatal intensive care unit. On July 25 instead of surgery she was sent home-to grow. Once home we had to monitor her condition by taking and recording her weight, oxygen levels, and heart rate daily. We also made weekly visits to the pediatrician and cardiologist.
On August 26, during her routine cardiology appointment, Arabella’s oxygen levels began to drop to a concerning level. She was admitted to CHKD that afternoon for overnight monitoring. Her cardiology team decided that surgical intervention was needed. Arabella was medically transported to UVA hospital on Thursday, August 29 with the plan to operate on Tuesday, September 3. Once she arrived at UVA hospital her oxygen levels continued to drop and she was unstable. Her cardiology team decided surgery would have to happen sooner.
On Friday, August 30 at 6 weeks old, Arabella had open heart surgery. Dr. Gangemi and his surgical team at UVA hospital put in a modified BT shunt which is used to increase pulmonary blood flow and performed an Atrial Septectomy in which they created a small hole between the upper chambers of the heart to improve blood mixing and circulation.
The open heart surgery took 4 hours and briefly during that time Arabella’s heart was stopped and she was placed on a heart lung machine. Overall the surgery was a success and Arabella was placed in the pediatric intensive care unit to recover with an open chest, breathing machine, feeding tube, and numerous IV medications. On Monday, September 2 her chest was closed using a wound vac and on Thursday September 5 her chest drainage tube was taken out. On September 6, she came off the breathing tube and used a high flow nasal cannula to assist her with her breathing.
Two weeks after her open heart surgery, the doctors were pleased with the functioning of the shunt. However they discovered blood in her stool and began treating her for necrotizing enterocolitis (NEC) which is a devastating disease that affects the intestine and is common in heart babies. They quickly stopped her feeds and put her antibiotics for 5 days. Eventually they were able to begin feeds again and slowly increase the amount through her feeding tube.
Also during this time, an Xray of her chest showed diaphragmatic weakness on her right side due to nerve damage during her surgery. The good news was that it was not paralyzed and would heal without medical intervention. She remained on the nasal cannula to support her breathing.
On September 17, she was taken off the nasal cannula and began to breathe on her own. They also removed her feeding tube and she began full feeds. On this day she graduated from the PICU to the step down unit at UVA hospital.
Since our stay in the PICU was longer than expected a PICC line was placed in Arabella’s leg for long-term IV medication and blood draws. When she was transferred to the step down unit we noticed the leg with the PICC line became discolored. We had an ultrasound of the leg and 2 blood clots were found. The good news was that they were non-occlusive and would eventually dissolve on their own over time. Until then we have to administer a blood thinner injection into Arabella’s thighs twice a day at home for 3 months.
The 3 hour trip from our home to UVA hospital, living in hotels and the Ronald Macdonald house, spending long hours in the hospital, all the ups and downs have been both physically and emotionally exhausting. The hardest part of being a parent is watching your baby go through something tough and not being able to fix it for them.
The expected recovery time was 7-10 days but because of some setbacks she spent 28 days at UVA hospital.
On September 22 Arabella was discharged and we brought her home! In 5-7 months an additional surgery will be needed and possibly a third. They want her to grow before deciding on what to do next. Until then we must continue to monitor her condition. We must take and record her weight, oxygen levels and heart rate daily. We administer oral medications and give her injections twice a day. We also must have Arabella evaluated for speech, physical therapy and occupational therapy as well as attend cardiology appointments every 2 weeks which will consist of EKGs and ultrasounds.
Our out of pocket expenses are approaching $20,000 and will continue to increase. Our goal is to raise $60,000 to help cover the out of pocket medical expenses both current and future.
We are incredibly grateful for any contribution whether you send prayers, positive thoughts, or make a financial contribution to support our baby girl, Arabella.
With every contribution you will help be a part of Arabella’s success story and making her heart stand strong. #heartwarrior
Thank you for your love and support,
Dan, Ashley, & Arabella Blados
At our 23 week ultrasound we were informed that our baby girl had a complex Congenital Heart Defect. They diagnosed her with Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries, Ventricular Septal Defect and a pulmonary stenosis. We were told that after birth, she would need multiple surgeries to repair the issues.
Arabella Rylee Blados was born Tuesday, July, 16, 2019.
On July 20, she was medically transported from CHKD NICU in Norfolk, VA to UVA Hospital in Charlottesville, VA for an anticipated surgery. She spent 5 days in their neonatal intensive care unit. On July 25 instead of surgery she was sent home-to grow. Once home we had to monitor her condition by taking and recording her weight, oxygen levels, and heart rate daily. We also made weekly visits to the pediatrician and cardiologist.
On August 26, during her routine cardiology appointment, Arabella’s oxygen levels began to drop to a concerning level. She was admitted to CHKD that afternoon for overnight monitoring. Her cardiology team decided that surgical intervention was needed. Arabella was medically transported to UVA hospital on Thursday, August 29 with the plan to operate on Tuesday, September 3. Once she arrived at UVA hospital her oxygen levels continued to drop and she was unstable. Her cardiology team decided surgery would have to happen sooner.
On Friday, August 30 at 6 weeks old, Arabella had open heart surgery. Dr. Gangemi and his surgical team at UVA hospital put in a modified BT shunt which is used to increase pulmonary blood flow and performed an Atrial Septectomy in which they created a small hole between the upper chambers of the heart to improve blood mixing and circulation.
The open heart surgery took 4 hours and briefly during that time Arabella’s heart was stopped and she was placed on a heart lung machine. Overall the surgery was a success and Arabella was placed in the pediatric intensive care unit to recover with an open chest, breathing machine, feeding tube, and numerous IV medications. On Monday, September 2 her chest was closed using a wound vac and on Thursday September 5 her chest drainage tube was taken out. On September 6, she came off the breathing tube and used a high flow nasal cannula to assist her with her breathing.
Two weeks after her open heart surgery, the doctors were pleased with the functioning of the shunt. However they discovered blood in her stool and began treating her for necrotizing enterocolitis (NEC) which is a devastating disease that affects the intestine and is common in heart babies. They quickly stopped her feeds and put her antibiotics for 5 days. Eventually they were able to begin feeds again and slowly increase the amount through her feeding tube.
Also during this time, an Xray of her chest showed diaphragmatic weakness on her right side due to nerve damage during her surgery. The good news was that it was not paralyzed and would heal without medical intervention. She remained on the nasal cannula to support her breathing.
On September 17, she was taken off the nasal cannula and began to breathe on her own. They also removed her feeding tube and she began full feeds. On this day she graduated from the PICU to the step down unit at UVA hospital.
Since our stay in the PICU was longer than expected a PICC line was placed in Arabella’s leg for long-term IV medication and blood draws. When she was transferred to the step down unit we noticed the leg with the PICC line became discolored. We had an ultrasound of the leg and 2 blood clots were found. The good news was that they were non-occlusive and would eventually dissolve on their own over time. Until then we have to administer a blood thinner injection into Arabella’s thighs twice a day at home for 3 months.
The 3 hour trip from our home to UVA hospital, living in hotels and the Ronald Macdonald house, spending long hours in the hospital, all the ups and downs have been both physically and emotionally exhausting. The hardest part of being a parent is watching your baby go through something tough and not being able to fix it for them.
The expected recovery time was 7-10 days but because of some setbacks she spent 28 days at UVA hospital.
On September 22 Arabella was discharged and we brought her home! In 5-7 months an additional surgery will be needed and possibly a third. They want her to grow before deciding on what to do next. Until then we must continue to monitor her condition. We must take and record her weight, oxygen levels and heart rate daily. We administer oral medications and give her injections twice a day. We also must have Arabella evaluated for speech, physical therapy and occupational therapy as well as attend cardiology appointments every 2 weeks which will consist of EKGs and ultrasounds.
Our out of pocket expenses are approaching $20,000 and will continue to increase. Our goal is to raise $60,000 to help cover the out of pocket medical expenses both current and future.
We are incredibly grateful for any contribution whether you send prayers, positive thoughts, or make a financial contribution to support our baby girl, Arabella.
With every contribution you will help be a part of Arabella’s success story and making her heart stand strong. #heartwarrior
Thank you for your love and support,
Dan, Ashley, & Arabella Blados
Organizer
Ashley Blados
Organizer
Chesapeake, VA
