Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Tuesday, February 5, 2013

DAY 5: Meet CAEL and MYLAH

CUTENESS OVERLOAD!!!  Today, meet Cael and Mylah.  Different heart defects, but both filled with fight!  


Our little warrior Cael was diagnosed with a broken heart at 20 weeks gestation during a routine ultrasound. We found out that Cael had congenital heart defects. He had various problems with his heart, but ultimately a rare disease called Hypoplastic Left Heart Syndrome. This rare heart defect occurs in 1 out of every 10,000 births. During that same ultrasound the doctors also found something called Hydrops Fetalis or signs of heart failure in utero. That day we were given four choices: 1st - terminate the pregnancy, 2nd - "let nature take its course" (If not corrected, Hypoplastic Left Heart is 100% fatal and the child will die within the first few hours to days after birth), 3rd - give birth to the baby and he will be required to undergo a series of three staged corrective surgeries (The first surgery has only about a 75% success rate.), 4th - attempt an experimental intrauterine surgery performed by pediatric cardiologists in Boston. (We later found out we were not candidates for this procedure because his condition had progressed past the point of correction in utero). For us there was no other choice than to fight along side our mighty warrior! Despite the severity of the many defects, Cael outlived the doctors’ expectations and continued to fight in his mommy’s belly! He was born March 31, 2012 in Pittsburgh, PA. Immediately after birth he was rushed to Children’s Hospital of Pittsburgh to the Cardiac Catherization Lab. Here they created a passage between the top two chambers of his heart to allow the limited blood flow to circulate.  It was only a short time after he was born that he underwent his first of many heart procedures. His first few hours of life were difficult ones where he fought hard to keep his little heart strong. At five days of age, he had his first of at least three open heart surgeries. Cael’s surgery went very well, but his heart was having a difficult time adapting to its new anatomy shortly after surgery. He went into cardiac arrest and required life support to aid his troubled heart. In addition to all of the cardiac defects, Cael was also diagnosed with Congenital Hypothyroidism. His thyroid function and levels are controlled and monitored closely. After weeks of riding the roller coaster of ups and downs, Cael was able to recover from the procedures and go home before his next surgery. At 3 ½ months of age, Cael underwent his second cardiac catheterization and a few days later, his next open heart surgery. During this hospital stay, Cael went through a great deal of pain while his body adjusted to the new circulation of his little heart. After overcoming the many obstacles after the surgery, Cael was once again discharged to go home. While we were home Cael was monitored closely as he had several appointments each week at Children's Hospital. During two of his procedures, Cael had blood clots that formed which resulted in him needing to be on Lovenox therapy. This required him having Lovenox injections twice a day for 7 months. 
Because of Cael’s condition after birth he was not able to eat for the first three weeks of life. This was a setback in his development and oral skills. Due to the delay in eating, Cael had difficulties and challenges eating. He was fed through an NG (Nasal Gastric) tube that was inserted in his nose and into his stomach for five months of his life. When he was five months old, he once again underwent surgery to get a feeding tube (G tube) surgically placed into his little belly and to have the bottom of his stomach wrapped around his esophagus to prevent aspiration (Fundoplication). Even now at nine months of age, Cael still struggles with eating and is fed primarily through the feeding tube in his stomach. We work with many therapists to help him learn how to eat and drink.
Cael goes for routine cardiologist visits and echocardiograms. He will undergo his next open heart surgery between 18-36 months. He could also ultimately need to have a heart transplant in the future.
    Now at nine months old, he has been admitted in the hospital nine times. Cael may have spent a little less than half of short life in the hospital, but that hasn’t stopped him! He is home now and doing very well! Our heart hero certainly steals a piece of our hearts as we fight to keep his beating!

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Meet Mylah!!

Mylah's Story: 

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. 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).

He explained to us the different signs of this heart defect. He also told us of the possibility of her having open heart surgery right after birth. My heart broke, my mind was spinning and I just started crying. Never could we have imagined this news. We had no idea what a CHD was. 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.

On September 30th I went into labor with Mylah. My water broke at home and we rushed to get to the hospital as fast as we could. After going through triage and finally getting into our room, I was an 7 and about ready to have her. I had to wait because the doctor on call wasn't around. Soon after he showed up, it was time to push.

Mylah Leilani was born on October 1st, 2011. She weighed 7lbs. 12oz. and was 19.5 inches long. She was a "pink" Tet, showing no signs of cyanosis at birth. Her apgar score was 8/9 and she was breathing well and her oxygen saturation was around 90%. She looked beautiful! 

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.She nursed really well, slept really well and didn't show signs of any respiratory or cardiac distress. Paperwork was prepped to take our sweet baby home! 

On Wednesday October 5th, as paperwork was readied, we had one last routine ECHO done on Mylah's heart. Dr. Ackerman wasn't satisfied with the it. He said her pulmonary artery showed signs of continued stenosis and that he wanted to give Mylah prostaglandins to open up the ductus they had decided to let close after birth. Mylah reacted horribly to the prostaglandins and had her first Tet Spell. Her O2 Saturation was in the low 40's, she turned grey and blue and had to be closely monitored and put on oxygen. The doctors decided that immediate emergency surgery was required. That night our precious baby went in for her first open heart surgery. The surgery lasted four hours and a BT shunt was placed between her pulmonary artery and her aorta. This provided adequate flow of blood to keep her oxygen saturation at 90 and slightly above.

She went home 4 days later. 

After 6 months of growing and laughing and loving on our precious Heart Baby, 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 three hours 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.

Mylah's heart cath went well. Everything was mapped out and a plan for surgery was decided. Mylah's oxygen saturation wasn't coming up after four hours in the PICU. They decided to just admit Mylah for the week and prep her for surgery the next day. 

Mylah stayed pretty happy and did well the next couple of days. On surgery day we hugged and kissed Mylah. We took pictures, we cried, we smiled, we laughed. Then we were ready, ready to give our baby to Dr. Ciccolo and pray for a miracle to guide his hands, to heal her heart, and to save her life. 

That miracle took place during a 7 hour surgery. Mylah's Tetralogy was a little more complicated than Dr. Ciccolo saw during her Heart Cath. He was able to fix two holes, an ASD and a VSD, discontinue her shunt and then split her pulmonary vein to give her better blood flow. This artery will now have to be replaced in the future. 

She remained in the hospital for another week and then we took her home!

Mylah is now 16 months old, growing quickly, learning so much, and is a bright light in our home. We are proud to say that her heart defect changed our lives for the better. It brought us closer as a family and helped us to realize how short life is. We can never take a single moment for granted. 

To keep up with Mylah and her progress, you are welcome to read her blog:

Lara H.
Heart Mom to the Heart Warrior Mylah

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