We found out we were expecting our third child on February 7th, 2011.
Over-joyed, we planned and prepared, and shared our good news.
At our twenty week anatomy ultrasound we discovered we were having another GIRL!
We felt blessed and relieved to know that she was healthy and growing well.
We decided to name her Mylah.
The ultrasound technician did mention that she was unable to get good enough pictures of her heart, and we would need to return for a follow-up ultrasound in a few weeks.
At the next ultrasound the technician mentioned again that she wasn't getting clear enough pictures of Mylah's heart. This started to concern us.
At that point the doctor decided that we needed to see a specialist at the CMFM (Center for Maternal and Fetal Medicine) to get better pictures of Mylah's heart and kidneys.
At thirty-four weeks we went to the CMFM to have the ultrasound done. The technician made sure Mylah was still a girl, and measured her head, abdomen, leg bone, and arm bone. She informed us that our beautiful girl was about 5lbs 13oz. She looked healthy and her fluid was good.
Then she started taking pictures of her heart from as many angles as she could. She also took pictures of her kidneys.
After a while the doctor came in to talk to us. She said from what she could see, she thought that Mylah had a hole in her heart. She wanted to confirm this with a pediatric cardiologist.
The cardiologist, Dr. William J Castillo, took more ultrasound pictures and also recorded a video of the scan for future reference.
After looking at her heart extensively, he diagnosed our precious Mylah with Tetralogy of Fallot (Fuh-loe).
Shocked and concerned, we asked many questions and have resolved to do everything in our power to help her in her difficult journey of being born with a Congenital Heart Defect.
We dedicate this blog for her story, her journey, and our family's updates for you to follow if you'd like.
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Mylah Leilani was born on October 1st, 2011. She weighed 7lbs. 12oz. and was 19.5 inches long.
She was in the NICU for 5 days after birth and was called the "Superstar" Tet Baby because she had remained so pink from birth.
On Wednesday October 5th, Mylah had her first Tet Spell. Her O2 Saturation was in the low 40's and immediate emergency surgery was required. She went into surgery to have a BT Shunt placed in her heart.
To read her story beginning at her first surgery, follow these links:
Mylah's Timeline
Post Surgery - Day 1
Post Surgery - Day 2
Post Surgery - Day 3
Post Surgery - Day 4
Mylah Comes Home
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On April 19, 2012 we took Mylah in for a routine Cardiologist check up. We had started to notice that she was getting tired more often throughout the day and would only stay up for two hours at a time before needing another nap. We realized her heart was probably slowing down and she was outgrowing the BT Shunt that was placed six months before.
Upon arriving at the cardiologist's office, she went through the routine procedures of and EKG and a Pulse Ox. Her O2 saturations were only at 75% and at her last check up they were in the high 80's. We knew Dr. Thomas was going to say something and we knew scheduling surgery was a necessity.
After a routine ECHO Dr. Thomas said we would be scheduling surgery, he wasn't sure for when, but that he would have his office call us. We recieved a call that evening, from Dr. Thomas himself. He stated that because we now live so far away from the Heart Center and the hospital and because the Heart Surgeon - Dr. Ciccolo - was leaving on a mission trip, we would need to schedule Mylah for a Heart Cath and surgery the next week.
We were in shock! We thought we would have more time, but knew this would be the best thing for her. We scheduled the surgery for April 25th, and her Heart Cath for that Monday before.
To Read all the posts from her Heart Cath to Post Op past her second Open Heart Surgery, here they are in chronological order:
Heart Cath
24 hours
Mylah's Full Heart Repair
Post Op Day 1 Picture
Post Op Day 2 Picture
Post Op Day 3 Picture
Extubated
Post Op Day 4 Picture
Smiles and Playtime
Post Op Day 5
Setbacks
Post Op Day 6
The Latest About Mylah
Day 8 Post Op/Post Withdraw
Day 10 Post Op, Day 12 Hospital Stay
Day 11 Post Op, Day 13 Hospital Stay
Goodbye PICU!!
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Mylah Leilani was born on October 1st, 2011. She weighed 7lbs. 12oz. and was 19.5 inches long.
She was in the NICU for 5 days after birth and was called the "Superstar" Tet Baby because she had remained so pink from birth.
On Wednesday October 5th, Mylah had her first Tet Spell. Her O2 Saturation was in the low 40's and immediate emergency surgery was required. She went into surgery to have a BT Shunt placed in her heart.
(An example of a TOF heart with a shunt placed in it)
In some infants, a shunt operation may be done first to provide adequate blood flow to the lungs. This is not open-heart surgery and doesn't fix the inside of the heart. The shunt is usually a small tube of synthetic material sewn between a body artery (or the aorta) and the pulmonary artery. The shunt is closed when a complete repair is done later.
Mylah's Timeline
Post Surgery - Day 1
Post Surgery - Day 2
Post Surgery - Day 3
Post Surgery - Day 4
Mylah Comes Home
------------------------------------------------------------------------------------------------------------------------
On April 19, 2012 we took Mylah in for a routine Cardiologist check up. We had started to notice that she was getting tired more often throughout the day and would only stay up for two hours at a time before needing another nap. We realized her heart was probably slowing down and she was outgrowing the BT Shunt that was placed six months before.
Upon arriving at the cardiologist's office, she went through the routine procedures of and EKG and a Pulse Ox. Her O2 saturations were only at 75% and at her last check up they were in the high 80's. We knew Dr. Thomas was going to say something and we knew scheduling surgery was a necessity.
After a routine ECHO Dr. Thomas said we would be scheduling surgery, he wasn't sure for when, but that he would have his office call us. We recieved a call that evening, from Dr. Thomas himself. He stated that because we now live so far away from the Heart Center and the hospital and because the Heart Surgeon - Dr. Ciccolo - was leaving on a mission trip, we would need to schedule Mylah for a Heart Cath and surgery the next week.
We were in shock! We thought we would have more time, but knew this would be the best thing for her. We scheduled the surgery for April 25th, and her Heart Cath for that Monday before.
To Read all the posts from her Heart Cath to Post Op past her second Open Heart Surgery, here they are in chronological order:
Heart Cath
24 hours
Mylah's Full Heart Repair
Post Op Day 1 Picture
Post Op Day 2 Picture
Post Op Day 3 Picture
Extubated
Post Op Day 4 Picture
Smiles and Playtime
Post Op Day 5
Setbacks
Post Op Day 6
The Latest About Mylah
Day 8 Post Op/Post Withdraw
Day 10 Post Op, Day 12 Hospital Stay
Day 11 Post Op, Day 13 Hospital Stay
Goodbye PICU!!
