It is a day I will never forget. A day when my whole world felt as though the bottom was dropping out and I had no control.
We were excited to welcome our 4th child into our family. The other kids got to see her that night as well as the next day. The pediatrician made his rounds that morning, and noticed a murmur as he listened to her heart. The hospital's cardiologist just happened to be there while our pediatrician was examining her, and the cardiologist suggested that an echocardiogram be done that afternoon "just to be safe.” They brought Darla Jane back into our room telling us she looked great, and although he did hear a little murmur it was probably nothing. They left with the recommendation to check her again later in the afternoon, again, "just to be safe."
I got to keep our baby girl in our room most of the day until they took her down for the echo. No big deal....well, it turned out it was a big deal. My husband had gone down with her, but when he came back without her, and suggested that my mother-in-law should take the kids on a walk, I knew there was something going on. The minute they walked out of the room he broke down, and so did I. The only thing we were told was that the left side of her heart wasn't working and that that she would need to first be stabilized in the NICU, after which she could be transported to the local children's hospital. So less than 24 hours after giving birth, I requested to be released so that I could go with my baby.
After getting to the children's hospital and having a complete echocardiogram Darla Jane was diagnosed with Hypoplastic Left Heart Syndrome. The left side of her heart wasn’t working because it wasn't there.
We were told there were three options, take her home and do compassionate care for a couple of weeks until she passed away, list her for a heart transplant, or head down the road of a three-stage open heart surgery that would essentially "re-plumb" her heart, so the right side of her heart would serve as the left and pump her blood out to her body. The first option, in our minds, was not an option. A transplant would not be a guarantee as the chance of receiving a donation like that for an infant was very unlikely. So we chose surgery—even knowing that at some point a transplant would still likely be a necessity. At a minimum Darla Jane would require three surgeries, none with a guaranteed outcome. But we knew that was what we needed to do.
Darla Jane's first open heart surgery was when she was only 11 days old. It was one of the scariest days of my life. I can’t say that I didn't have thoughts of pulling all of her wires and running out of the hospital with my baby. I was horrified thinking that they would have to stop her tiny little heart for a half hour or more during the surgery so that it could be worked on. And the worst part about it was that we had no guaranteed outcome.
Now, even after her third open heart surgery, I still don't know what the future will hold for our little Darla Jane. But I do know, with all my heart, that she is a daughter of our Heavenly Father who loves her and is aware of her. She is his daughter, just as we all are children of our Heavenly Father. He knows us and loves us and is aware of all of our fears and uncertainties. Throughout the entire time Darla Jane has been in our lives, I have known that I will never be sure the path her life will take, or what she will have to endure, but I know without a doubt that wherever that road will lead, all will be ok.
We may not always know why we have been given certain trials in our lives, but one thing we all know (or we can know through prayer and study) is that we will never be alone through our trials. From my experience we can also be certain that we will never be given trials that will not be for our growth and benefit. Even if we don’t recognize this until the trial is behind us.
This trial has given me more opportunities than I can count to see God’s hand. As I look back at so many situations that our family has been placed in, I see how God has been involved in so much of it, and was blessing us in ways I couldn't see at the time. It’s taught me to never give up. It’s taught me to never turn my back on the Savior, but instead turn toward him and use the power of his atonement to help me weather any storm.
There are still days when I wish this wasn't part of our lives and that we wouldn't have to think about it all the time, but more often than not I wouldn't trade it for anything. Going through this trial has taught me things I wouldn't learn otherwise, stretched me in ways I wouldn't have been stretched, and is helping make me into the person that my Heavenly Father knows I can become. And in the meantime, I get to love my perfect little Darla Jane with all my heart.