Wednesday, February 10, 2010

When a heart needs fixing: Seven Hearts Series

Welcome to the fourth day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out Saturday's post.
Today's post comes from Amanda at Mommy 2 3 Miracles

Imagine this: It was one of those nights. I was pregnant – about 6 months along – and the twins (15 months) were having what seemed as nightmare after nightmare. My husband was working midnights so I got to rush up each time they cried out. This last time, I got up and attempted to rush out of my room however the dog had taken his place at the foot of our bed and was stubborn enough to refuse to move for my pregnant self. “Move….” (Nothing) “MOVE!” (Looks at me) “Come on, MOVE!” (Nothing). So I attempt to step over him…and he moves. This sent me into the door knob and down a long road that we never would have expected.

The following day, I discussed the issue with my doctor and was admitted to the hospital for close monitoring. Hours later, an ultrasound was ordered. We had already had our 15 week scan and it was "normal" so I had no reason to worry - but our life was about to change. The Ultrasound tech (I partially owe my sons life to this woman) performed a routine scan, checking everything and making sure it was all the right size etc. She stopped for a moment and asked her assistant to call in my doctor – from home. (What? Are you kidding me?! Why?!) She said it was because the baby wasn’t moving as much as she would like him too and he wasn’t “passing the test”. Now, I’ve had twins and along with pregnancies with multiples comes NST’s and MANY ultrasounds. They give them a certain amount of time for the baby to move before they call the doctor in! Something was wrong.

Now, imagine during that “routine” ultrasound, your doctor who has been called from home, looks at you and says “It’s textbook, your baby will be born with a congenital heart defect called Transposition of the Great Arteries. I can’t believe it’s so clear. This means that he will require immediate surgery and within days, open heart surgery.” The words a mother dreads hearing: Congenital Heart defect….Open Heart Surgery.

I quickly learned that Transposition of the Great Arteries accounts for 5% of the Congenital Heart Defects and that it meant that the two main arteries coming out of my sons’ heart were backwards. Just like the doctor said, my sons’ heart was textbook. The arteries should come out and cross each other, while my sons came out and ran parallel to each other. Normally, the oxygen from the lungs mixes with the blood in the heart. Not in this case. We learned that when he was born, his blood would run from his lungs to his heart and back to his lungs. The other side of his heart would pump blood from his heart around the body and back to the heart. Without the arteries in the correct place, his body would not get the oxygen he would need to live. We also learned that TGA babies are commonly called “blue babies” when they’re born because of the lack of oxygen to their bodies.

Fast forward to the day of my scheduled c-section and the beginning of the whirlwind that is my current life. I’d made it through the stages of denial and anger but my life had to go on. I had spent my time questioning why this had to happen to me. I already had identical twins with Cancer and a marriage that I was unsure of where it was going. It was time to go, D-Day as I referred to it. We were prepared for the worst but hoped and prayed for the best. We decided to name our son Peyton (no not after Peyton Manning) and we just had a feeling he’d be a little fighter.

He was born c-section and rushed straight to the NICU with only a brief second to stop and give mommy and daddy a strong cry. Minutes later we learned that Peyton’s’ oxygen level was only 20% (yeah this should normally be 100%). By the time I was in recovery, the NICU staff rushed into my room to tell us “we need the father to come sign papers, we need to do an immediate balloon septostomy to make the hole in between the chambers of Peytons heart bigger and allow for the blood to mix.” By the time that my husband had got there, they had already gone ahead and started the procedure – normally done in an OR but there was no time. They did it bedside in the NICU.

We waited six hours before we could see Peyton in the NICU. He had tubes, wires and hoses all over him. The NICU nurses told us that he was the sickest healthiest baby in the NICU. He spent 6 days in the NICU. I spent 6 days at his side and wasn’t about to leave him. On the 6th day, Peyton was scheduled for an Arterial Switch, the surgery that would save my baby. For the procedure, they would open his chest up and switch the tiny arteries which were as small as angel hair pasta, on a heart that was no larger than a small strawberry.

The hardest part of all of this was when they took him to surgery at 7:40 in the morning. They updated us every hour – until they told us that they were finished and that they were going to leave his chest open to allow the swelling to go down. They would let us know when he was in the PICU – which would be soon. I waited for 3 hours to hear from them. After 2 hours had went by, in my head I had began to plan his funeral. I knew that I would be leaving the hospital without my baby.

Finally they came out and told us. They had put a scope down his throat to check and make sure that everything was working correctly and they had decided that his heart was not pushing the blood through like it should be. My baby, who had already gone through so much in his short life, was being placed on ECMO. ECMO is life support. It’s a heart bypass machine but I didn’t realize that until only a few months ago. I knew what it did at the time, but it didn’t click that my baby was on life support. To be honest with you, everything became a haze to me. I switched into survival mode, telling them that anything they had to do to my baby to keep him with us they could do.

We were allowed to see Petyon finally. This was the only time I cried. I had stayed strong through the whole time…but when I walked into that hospital room and saw my baby laying in a bed, sides down because it was apparent he wasn’t going anywhere, I lost control. It wasn’t the tubes, wires and machines and IV’s that he was hooked up to that got to me, nor was it the ECMO machine that worked for his heart or the ventilator that was breathing for him. It wasn’t the fact that he was so close to being gone at all. Peyton didn’t even look like himself. The part that hit me like a brick was that he was so puffy from the fluids that he didn’t even look like his cute self that he was before he went into surgery. I cried. I cried because his face was so scrunched up under his hat and tubes that you couldn’t even see his eyes. I cried to the nurses to place the tape for the vent tubes (which were in his nose and mouth) differently that way he would look more like himself. I just cried! I think it was shock.

After the surgery was a rush of emotions. There was so much going through my mind at the time. ECMO comes along with stories of children that have been on ECHMO too long and children that never make it off of ECMO, ultimately never making it home. It was hard to take in. With all the stress I was under, it would have been smart to say nothing to me, to let me sit and watch my son breath – with the help of the vent – because he was alive. Someone (my mother in law) felt the need to tell me “I know it’s hard but it will be okay.” I remember thinking – outloud – “Really? Do you know that for sure? Have you been through this? Has your son been on life support? Has your son had open heart surgery at 6 days old? NO! HE HASN’T!” I felt bad for saying this stuff but I don’t think I could control myself at this time.

The priest came in and asked if we would like to have Peyton baptized. I lost control again. Looking back, sure we could have done it, but at that time, I had just taken all this in. I told him “no”. At this time, in my head I wasn’t going to have my son baptized under the pretense that he wasn’t going to make it out of the hospital. I was taking my son home.

It was a long few weeks that we spend in the hospital but eventually, Peyton was moved to a different room, taken off ECMO, closed up and even passed a car seat challenge to get out of the hospital. He was a nurse favorite. They even told me to not worry about picking him up because of all the wires but I found out that they carried him around all night long loving on him.

Aside from the ups and downs at the hospital, Peyton was able to leave the hospital about 3 weeks after he was born, after a complete revamp on his heart. I was nervous in the beginning, wasn’t sure how I was going to be able to handle a heart baby and twins with medical issues as well. Life has worked itself out. Peyton goes every six months to check and make sure that everything is going okay. His doctor is keeping an eye on his heart for another issue called Pulmonary Stenosis, which is a result of the scar tissue from the surgery causing his arteries to narrow. He’s two years old now and you’d think he was going on 4 with his brothers. To see him, you’d never know that he was born with a life threatening CHD.

“There is not enough darkness in all the world to put out the light of even one small candle"

TGA- Peytons Story from Amanda Eyler on Vimeo.


  1. This was a heart wrenching post to read. I cannot even imagine what it must have been like to go through all of this!

  2. wow! amazing story! cant believe tripping over a dog was "meant to be". those three little boys are fighters and will make a difference someday.

  3. Amazing story! Our son was born with TGA too - only we didn't find out about it until he was 10 days old. It is wonderful that your little guy is doing so well, I hope you have many wonderful years ahead.

  4. Wow, what a story! I can't even begin to imagine all the emotions in a situation like that. It's no wonder her children are all fighters...she sounds like an amazing woman with a whole lotta strength!!!

  5. Wow, cancer and then this - what a battle. Thanks for sharing your story!

  6. It breaks my heart to read this - the cancer and then a baby undergoing surgery and having to endure all this. You and your family are so strong - I don't know how you hold everything together.


  7. My heart hurts and is lifted up at the same time.

  8. Oh my've had it all. I hope you have all the support you can get. We will be praying for you and your family. Thank you for sharing your stories w/us.

  9. Amazing story! Thanks for sharing it!
    My son was born with D-TGA along with a number of other defects. We didn't learn about his CHDs until two weeks after his birth. I can totally relate to the roller coaster of emotions you experienced.

    Stef, Ryan, Wyatt and Logan


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