Macey’s Mixed Up Heart

Macey Jessa was born at 7:31am on May 6th, 2015. We thought we had another healthy baby, as she has three older siblings. Around 5pm our nurse said she looked “dusky”. She was taken to the NICU for an x-ray. The nurse came back and told me she was going to stay in the NICU for a while, but didn’t elaborate as to what was going. So I got ready to head down to the NICU to see her. Right as I walked in I heard a nurse on the phone saying “we have a baby here with her heart on the right side of her chest”…I knew she was talking about my baby, and that’s how I found out she had congenital heart disease, specifically dextrocardia. After another test it was determined she needed to be sent to Children’s because there was no echo machine at this hospital and we had no idea how sick she really was. After several hours, we were finally transported to Children’s where they spent two hours doing an echo on her. It was determined she had crisscross heart, Transposition of the great arteries, pulmonary stenosis, VSD, PFO, PDA and of course dextrocardia. She would definitely need two surgeries, and maybe a third if her O2 dropped before the first planned one. Her Doctor, Dr. Joy was amazing and really put our minds at ease. She was stable enough to go home at 6 days old, and she was monitored closely at the heart clinic and by weekly visits from our home monitoring nurse. Well at 3 months old her O2 dropped too low and she needed her first heart surgery, the BT shunt. She went home five days after this surgery. Then at 8 months she got another open heart surgery, the Glenn. She was able to go home just three days after this surgery, and shocked everyone! After her Glenn she was considered stable and we no longer had home monitoring visits, but continues with frequent follow ups at the heart clinic. We were happy, but nervous. We were also sad because we loved our nurse, Mary. Macey will need at least one more open heart surgery called the Fontan. She is doing great right now and only see cardiology every 6 months. She has a new cardiologist, Dr. Fernandez, and he is awesome too. He is helping guide us through this final step. The hope is these surgeries will get her into adulthood, but these are not repairs…they are palliative care. There is no cure for CHD. She doesn’t let it hold her back though, she already lives her little life to the fullest and we have hope that new techniques will be developed to help her and kiddos like her. She is definitely our hero!
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Macey Jessa was born at 7:31am on May 6th, 2015. We thought we had another healthy baby, as she has three older siblings. Around 5pm our nurse said she looked “dusky”. She was taken to the NICU for an x-ray. The nurse came back and told me she was going to stay in the NICU for a while, but didn’t elaborate as to what was going. So I got ready to head down to the NICU to see her. Right as I walked in I heard a nurse on the phone saying “we have a baby here with her heart on the right side of her chest”…I knew she was talking about my baby, and that’s how I found out she had congenital heart disease, specifically dextrocardia. After another test it was determined she needed to be sent to Children’s because there was no echo machine at this hospital and we had no idea how sick she really was. After several hours, we were finally transported to Children’s where they spent two hours doing an echo on her. It was determined she had crisscross heart, Transposition of the great arteries, pulmonary stenosis, VSD, PFO, PDA and of course dextrocardia. She would definitely need two surgeries, and maybe a third if her O2 dropped before the first planned one. Her Doctor, Dr. Joy was amazing and really put our minds at ease. She was stable enough to go home at 6 days old, and she was monitored closely at the heart clinic and by weekly visits from our home monitoring nurse. Well at 3 months old her O2 dropped too low and she needed her first heart surgery, the BT shunt. She went home five days after this surgery. Then at 8 months she got another open heart surgery, the Glenn. She was able to go home just three days after this surgery, and shocked everyone! After her Glenn she was considered stable and we no longer had home monitoring visits, but continues with frequent follow ups at the heart clinic. We were happy, but nervous. We were also sad because we loved our nurse, Mary. Macey will need at least one more open heart surgery called the Fontan. She is doing great right now and only see cardiology every 6 months. She has a new cardiologist, Dr. Fernandez, and he is awesome too. He is helping guide us through this final step. The hope is these surgeries will get her into adulthood, but these are not repairs…they are palliative care. There is no cure for CHD. She doesn’t let it hold her back though, she already lives her little life to the fullest and we have hope that new techniques will be developed to help her and kiddos like her. She is definitely our hero!

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