Thursday, February 11, 2010

Small letters that change your life: Seven Hearts Series

Welcome to the fifth 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 GoofyJ at My Adventures and Antics

CHD, TGA, ASO – a few small letters that have changed my life

My son has a Congenital Heart Defect (CHD). He was born in March 2005, adorable, snuggly, starving, and seemingly perfect. It was a moment when nothing could possibly go wrong he was ten days old, gaining weight and loved a good cuddle. I gave him one last big snuggle and then left him and two of his sisters with grandma while I took the other sister on a mommy daughter date. I had no way of knowing that it was the last time I would hold him for another 2 weeks, and possibly forever. Life was perfect and wonderful, then I came home. The first thing I heard as I walked through the door was my frantic mother-in-law saying something was wrong with Jacob. I rushed into his room and there he was in his crib, eyes closed gasping for breath, moaning, limp, and non-responsive. I remember thinking at least he isn’t blue yet. I have never been so scared in my life. I called my pediatrician and talked with our incredible nurse and was told to bring him in straight away, but if he turned blue to go straight to the ER. I charged for the car and zipped over to the doctor’s office, only 2 minutes away. I grabbed my boy and charged in with the blanket on his head to keep the wind off, he must have turned blue in the two minutes it took to get there because the nurse snatched him out of my arms and went charging across the street to the hospital ER. We pounded on the ER door and before I knew it he was stripped on a table with doctors swarming around him responding to a code blue, wait it was my sons code blue! What was happening? Bewildered and shocked don’t even come close to the feelings that were charging in on me from every side.

My pediatrician came in on his day off and my husband came rushing out from work. The Bishop from my ward (congregation) met us at the hospital. I’d like to say I was the picture of calmness and confidence and that I held it together so well, but I didn’t. I was a basket case, sobbing, scared and praying my heart out.

They stuck a breathing tube down his throat but nothing changed, and that is when they knew that he had a heart defect. We were grilled, any history of congenital heart defects, and they rattled off a few, to which we shock our heads blankly wondering what the jumble of words even meant. Then they were talking about transport to ICU in Emmanuel Children’s Hospital, and I knew we were in for a ride. They called for ambulance transport but when it arrived it was 5:30 p.m. and they were worried that with the traffic he wouldn’t survive the trip, in fact they weren’t sure if he even had another 20 minutes, so life flight was called in and my husband and I watched as the helicopter landed from our car and then we took off.

When we arrived at the hospital we raced up to the ICU and stopped dead in our tracks. There was a huge sign hanging on the ICU doors: STOP! EMERGENCY SURGERY IN PROGRESS! We knew it was our son and so we let them know that we were here and went to wait for a nurse to come explain what was happening. We were informed that his condition was called Transposition of the Great Arteries (TGA). His Aorta and Pulmonary arteries were switched and so the blood from the lungs with oxygen wasn’t making it out to his body it was just being sent back to his lungs. He was basically suffocating because he couldn’t get any air. They were doing a special procedure that would open a small hole in the wall of his heart that would allow the blood to mix and oxygenize to keep him alive until surgery.

They had to do it in his room because he was close to death when he arrived and they didn’t have time to set up the lab. Well it worked and he stabilized a bit and we had to wait until his body recovered from the immense shock it had underwent. Doctors explained to us that his condition was correctable through a surgery call the Arterial Switch Operation (ASO) in which they do open heart surgery and switch his arteries and all the little connecting vessels that go with them. It’s amazing they can even do all that. Jacob had surgery on Easter Sunday. He had priesthood blessings, countless prayers and fasts from all denominations, and the service we received from members of the church was amazing. We witnessed so many miracles. We finally made it home after 2 weeks in the ICU, 1 week on the regular pediatric floor, and more scary moments of collapsed lungs and low oxygen levels.

Now he is a healthy, thriving almost 5-year old. He has more energy than any other kid in my family (we have five now). Even though the experience was scary and there were times I never thought I would make it through there were so many miracles and blessings. No one ever wishes a severe illness on their child, but joy can be found even in the hardest circumstances. To close this post I would like to list seven reasons I am glad to be a mom of a child with CHD.

1. I take more time to ENJOY the children rather than worry about whether or not the dishes are done.

2. I have a closer relationship with God, my husband, and family.

3. I have a new appreciation for life and the wonder of how glorious it is.

4. I don’t take as many things for granted – I realize every moment is a precious moment that can be lost and never retrieved

5. I have met a whole lot of neat people that I wouldn’t have met otherwise. Lets face it – no one WANTS to be in this situation but great friendships are formed because of it.

6. I remember to snuggle a little longer, and to never let the kids leave without a hug (they will love that as teenagers, won’t they?)

7. I realize that when I lack the strength to carry on, the Lord picks me up and carries me the rest of the way.


  1. Wow! Powerful story, made me heart ache! Got chills! I'm so happy he is doing so well! What a strong little boy as well as strong parents! ♥

  2. Man, these stories sure do tug at the heart strings. It's disheartening to see the before pics, but oh so comforting to see a healthy boy emerge.

  3. "They stuck a breathing tube down his throat but nothing changed, and that is when they knew that he had a heart defect."

    If that's not enough to rattle you I don't know what is. How terribly upsetting to hear that especially for an innocent baby, a gift to the world. You and your family are amazing for falling back on your faith and staying strong.

    Jacob - what a beautiful name and the picture of him playing soccer looking so happy and well is amazing. Thank you for sharing your story.


  4. Reminds me to hug my kids a little longer...


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