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.


Friday, February 8, 2013

Day 8: Meet Anya and Jonas

Day 8:  Meet Anya and HLHS angel and warrior, still fighting the good fight!  


I am just an ordinary mom with extraordinary circumstances. I am a single mom and used anonymous donor sperm via a fertility center to get pregnant. All I ever wanted to be was a mom. Everything was going great, and I was so looking forward to that day, April 18, 2012. That was the day I would find out if my baby was a boy or girl. I was 19 weeks pregnant, and at the end of the unusually long sonogram the tech told me that I was having a girl. I was so excited about the news I didn't even have a thought on why the tech left my mom and I in the room to go speak with the perinatalogist. When the perinatalogist walked in, my heart hit the floor. I knew at that moment something was wrong. A parent never forgets those words... "Your baby has a congenital heart defect." My baby, who just 5 minutes ago I had decided her name would be Anya, has Hypoplastic Left Heart Syndrome. The perinatalogist went on to show me ultrasound images of her heart and how there was no blood flow on the tiny bit of a left side she had. I was in shock, I was numb. I was just told that my baby, that I already loved so much, would likely die shortly after birth if she didn't have a series of risky, complicated open heart surgeries. And all I ever wanted to be was a mom.
 A week later I had my first appointment at University of Maryland Medical Center. I was there for hours. They did another complete anatomy ultrasound and a fetal echo. From that day, due to my own history of premature delivery (my 4 year old daughter Emoree was a preemie), and what they called a "dynamic cervix" I was on home bed rest for the next 4.5 months with appointments at University of Maryland twice a week most weeks. Bed rest sounds all well and good... until you are on it and unable to do anything.

I was 38 weeks pregnant on August 27, 2012 when Anya was born at 6lbs, 2oz. 18" long. My water broke right at midnight, and she was born at 3:24 AM after only 3 hours of labor. They let me hold her for a minute before taking her away to the NICU.

Anya had her Norwood procedure at two days old, on August 29th, 2012. I think that was the longest day of my life. I was sitting there in the PICU family waiting room thinking, "I should have been taking my baby home today, but instead she is in open heart surgery on a bypass machine." I broke down many times, and tried to sleep but I couldn't. The nurse practitioner would come in frequently and give surgery updates. I was afraid to leave the room, I didn't want to miss an update.

Finally, twelve hours after they wheeled her off the surgery, I got to see her again. Her chest was still open, it was closed 5 days later. She was on a ventilator for 6 days. But still, underneath all of those tubes and wires, I could still see my baby. My beautiful baby girl.
Days and weeks went by, and each day she did a little better. It was such a slow process. She had a few set backs. She had blood clots and needed lovenox injections. She also had chylothorax, which resulted in extra chest tube insertions. She was having issues with taking a bottle, and needed a feeding tube. At 5 weeks old, she was scheduled to have g-tube surgery, but she had a gradual dip in her sats and ended up getting a heart cath instead, she had some narrowing that needed to be ballooned. The following week, at 6 weeks old, she had her g-tube surgery. She did very well with that and was already extubated before coming back to the PICU.
Finally, on October 16, 2012, at 7 weeks and 1 day old, I got to take my baby girl home! It was the best, long awaited day ever. I had all 9 of her prescriptions filled and ready, her pulse ox monitor, her feeding pump, I was more than ever ready for our "new normal". Everyone tells me that I'm so strong, that they couldn't do what I am doing. I say that I'm not so brave, I am just doing what any mom would do for their child. Having her home was the best 15 days of my life <3

My whole life changed having Anya. I no longer work during the week because I had to be home with Anya, and that is exactly where I wanted to be. Since I am a single parent, I did still have to work. I worked on weekends when my mom was home taking care of both of my girls. I had Anya's schedule written out, her meds drawn up, her formula pre-mixed, and her feeding pump ready before I went to work on the weekends. I consider myself blessed to be a heart mom.
On November 3, 2012, it was a Saturday and I went through my normal morning routine getting everything ready for my mom to be able to care for Anya before heading off to work. Anya was a little fussy that morning but not inconsolable by any means, so I left. I was at work for barely a half an hour when my cell phone rang at 8:30 am, and it was my brother. This was out of the ordinary, ecspecially since I was at work. The words he spoke will forever haunt me. "Anya is unresponsive, and an ambulance is on the way."
I ran out the door and got into my car. I called my house and could barely understand my mom as she was hysterical. I finally got out of her that they were taking her to the local hospital, so that is where I headed. I got to the ER before the ambulance did. I sat nervously in the waiting room watching out the window waiting to see the ambulance go by. Finally I saw it, and I knew it was her. I waited a minute before going back up to the desk, demanding to see my baby. They took me back. As I walked down the hallway, I knew exactly what room she was in. There were paramedics and police officers standing outside of the room, and doctors and nurses rushing around inside. A social worker met me right outside of her room. The first thing I asked was if she had a pulse. The social worker sadly shook her head no. She took me inside of the room where Anya was, and sat down next to me. I sat quietly watching what was going on around me, tears running down my face. There were two people taking turns doing chest compressions. Another was manually ventilating her. One person was recording how many doses of epi they were administering, while another was administering meds. Someone else was checking for pulses. Finally, my mom showed up, our close family friend who we call my children's 'Mom-mom' drove her because she was too hysterical to drive herself.
Nearly an hour went by since Anya was brought into the ER, and a doctor came over and told me that after the next round of epi they would have to call time of death. I didn't say anything. I just prayed that she make it through this. The room got quiet when someone said, "I found a pulse." They kept manually ventilating her, but stopped chest compressions. No one said anything as they kept working on her. An hour or so later, they transferred her by ambulance to University of Maryland, so that she would have her surgeon and cardiac nurses that knew her working on her and understood her heart. Somehow during that day, I had hope that Anya would make it through this. That evening, my mom went home to take care of my 4 year old, but Mom-mom refused to leave, she said she was staying at the hospital with me. I fell asleep around 10:30pm, but Mom-mom woke me up just after 11PM when our nurse Elizabeth asked her to wake me. They knew what was happening... just minutes after they woke me up Anya's blood pressure dropped, and they started administering epi and doing chest compressions again. In my heart, I knew she was already gone. At this point, she was starting to bleed out and she was swollen beyond belief. Time of death was called at 11:32PM.
I asked to hold her, and they wrapped her up and brought her to me. I held her for about two hours. I layed down on the bench and layed her next to me and cried. I took ink prints of her hands and feet, and I cut a lock of her hair. Her hair was so soft.
Planning your own child's funeral is not something any parent should ever have to do.

You can read Anya's whole story here:


Jonas was born on Saturday, August 8th, 2009. By all accounts, we had a normal labor and delivery.
It was not until more than 24 hours after he was born that we would learn he has a congenital heart defect: Hypoplastic Left Heart Syndrome. He was life flighted by helicopter from Broward General Hospital to Miami Children’s Hospital at 5:25p.m. on August 9th. Nothing is more surreal than watching a helicopter from your hospital recovery room, knowing they’re carrying your most precious cargo: Your only child that you’d been carrying with you…inside you… every day for months.

On August 12th, Jonas was the first case of the day at Miami Children’s. The Norwood procedure was  performed successfully, and by 12:30p.m., I was next to him in ICU, stroking his tiny foot and telling him everything would be ok, even if I wasn’t so sure myself.

On August 22nd, we came home for the first time. The next four months weren’t easy. Jonas had a difficult time keeping formula down: He’d often projectile vomit 3-4 times in one sitting.
He was in and out of the hospital for most of the month of October, with a cold or a stomach bug.

On December 4th, he was again admitted to Miami Children’s Hospital. He wasn’t acting like his usual perky self. They scheduled the second procedure, the Glenn, for the next day.
We remained in the hospital until December 19th. I am thankful we’ve never spent a holiday in the hospital.

Recovery from the Glenn was rather quick. By about 6 months of age, it was determined Jonas needed some intervention in the form of physical therapy. By 8 months of age, he was on track with other children his age: Cruising, pulling to stand, etc.

The last couple years have been rather easy, all things considered. Last summer, we spent an overnight at Miami Children’s Hospital for an exploratory catheterization. Jonas had wires placed in his heart, coils that open up his arteries and allow for better blow flow. But overall, doctors were amazed at his progress. They couldn’t believe he administers his own medicine to himself, without protest. They were impressed that he gives himself breaks when his heart is overworked without ever having been taught to do so. He is 3 years old and already instinctively knows to listen to the cues his body gives him. He will still need the third and final stage of his heart repair, the Fontan, within the next year or so.
We visit the cardiologist bi-annually, and at our most recent visit last month, the following exchange happened:

New Tech preparing to give Jonas an Echocardiogram, to our Cardiologist: (Jonas literally RUNS into the room, quickly climbs up the exam table) “So, is this a heart murmur?”

Cardiologist: “No, a hypoplast.”

Tech, astounded: “What? You’re kidding? With that much energy?”

You see, a kiddo with half a heart shouldn’t have the energy to ride his tricycle for a mile…which is the text I just received while typing this very story.

Jonas may be small for his age, as most heart kids are, but he is developmentally ahead of the pack when it comes to learning and communication. He breezes through Kindergarten level workbooks, and speaks conversationally to his peers and adults.

He is a joy to be around, always cracking jokes and filling the room with laughter.
Like any other 3 year old boy, he loves Cars, Curious George, and riding his tricycle at the playground.
Our family is blessed to have this incredible warrior walking among us, and his story has only begun.

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