Even though we are typically a technology sharing community based IT blog, I couldn’t help reflecting a little deeper on the things I am thankful for with the upcoming holiday season. I decided that I wanted to step back, refocus, and share what I am most thankful for today. I could say all the usual things like family, faith, health and happiness. Of course I am grateful and thankful for all of these things, but this year I am stepping back in time over 10 years ago. My husband and I have two children, and over 10 years ago we were not embarking on our first experience. We were veterans to preparing for a new baby with the routine doctors appointments, ultrasounds, what to do, and what not to do. This time around it was going to be easy, we were pro’s at this parenting thing.
Little did we know that things were missed along the way during all of these doctor appointments and hospital visits. Little did we know that my employer at the time was located in a “hot spot” for birth defects in babies, little did we know that our lives were about to change forever with the arrival of this little one.
In fact I think back to a bad storm we had shortly before we learned that there was something terribly wrong. I feel like this storm was the foreshadowing for what was to come.
A Baby is Born
The day had finally come when our new baby was born. We were excited! The doctor had mentioned that it took her a little bit longer to “get pink”, but all looked great. No worries here, you will be back home in no time with this new addition to your family. Before we were discharged my husband mentioned that we were seeing occasional irregular breathing. They checked her out, and said that can be normal and all sounded ok. So homeward bound we were.
Once we were home, we settled in. She was great at independent sleeping, was eating, and doing all the things a baby should do.
One early morning just a few days after being home, that wicked storm rolled through. High winds roaring, thunder, lightening and rain. We woke everyone up and went in the basement for safety.
When the storm was over we came upstairs we found our patio table turned upside down, the chairs mangled around the yard, and a tiny little tree bent over and broken. With glass all over the yard, we were in for some careful cleanup.
We cleaned up the mess, wrapped tape around the tree to see if we could get it to heal (which it is did), ordered a new table, and moved forward. Several more days went by, she had seen the pediatrician, and we would still witness the occasional rapid breath. We mentioned this to the pediatrician, they listened to her heart, and said all was ok. A few more days went by and something new; our sweet baby was extremely distressed after eating. The extreme opposite of what should happen. Baby’s sleep comfortably after eating typically. So I called the pediatrician late in the evening, and learned she was too young for colic. We discussed all the symptoms, and I promised to keep a close eye on things. If things had gotten worse the plan was to take her to the pediatrician in the morning.
The evening didn’t go very well. Eating for the baby was causing so much pain and crying I knew I had to have her seen right away. My husband even asked, why are you taking her in instead of waiting until morning, because we did manage to get her to sleep. I said, call it “gut” feeling, and we were out the door.
So, 11 days at home with the baby, and I drove for the first time after she was born. I took her to the ER where I was told my baby had a heart murmur. Keeping it rational I stayed calm, as I have friends that live healthy lives with murmurs I wasn’t going to panic yet.
The hospital ER reached out to have the local Children’s hospital transport team come to get her to the correct hospital for treatment. One that could treat a baby with a heart murmur. In the mean time the local hospital desperately attempted to get an IV in my baby. I didn’t understand it until the transport team arrived, but the realization was setting in that my new bundle of joy might not survive.
At the Children’s hospital
It was at the new hospital where this was confirmed. She was within the last few hours of her life, and if I hadn’t trusted my “gut” she wouldn’t have made it to morning. The unfortunate thing is that this story isn’t over yet. There’s more.
The diagnosis was Hypoplastic Left Heart, she would not survive without 3 surgeries to repair this defect. So we agreed to surgery. The day of surgery came, and little did we know we would almost lose her again. They completed the surgery, and they couldn’t move her off the surgical table to move to recovery without her vitals dropping to the lowest of levels. She came out of surgery on what they call ECMO, or life support.
She spent 7 days on life support before she was stable enough to be off. Despite the fact that she was able to be off life support they told us that she would not sustain on her own at home without a new heart. She was listed for a heart transplant.
The next two months were full of waiting for a new heart. This process is challenging from many perspectives. We were helpless since there wasn’t much of anything we could do besides take care of our entire family, read her books, and keep faith. To be challenged by the fact that someone else’s life has to be lost in order for another to survive is one of the hardest things to overcome. To find that the only way to be at peace with that is to believe that what is meant to be will, and that mine may not survive. To be challenged by the fact that there was another baby listed for a new heart after ours at the same hospital, but because it was a better match for that baby he received the available heart. Then to later watch that family mourn when things didn’t work out. While waiting, to us this was beginning to feel that this was the 3rd time we had almost lost her. All we had left was our support system and faith to keep us strong.
A New Heart
After just about losing hope, we received the call that they may have found a donor match for our little one. This also becomes a time of mixed emotions, but in the end all thankfully worked out for our little one. Leaving me with the opportunity to share this story of thanks 10 years later.
We are thankful to the family that made the toughest decision of their life when they made the decision to donate organs. We are thankful to be blessed with the opportunity to know our child who fought hard to survive, and to know and love her family in return. I am also thankful to be able to share this story with you.
As you walk away from this story, I ask that you look at all of your blessings. As you move into this holiday season cherish ALL that you are thankful for big or small.
Stay strong and keep faith.