We learned that our baby does not have HLHS, but double inlet left ventricle (DILV) with a large VSD. He was misdiagnosed because his heart has actually grown in a reversed position on the right side of his chest (weird, but not life threatening). So everything the initial ultrasounds detected was correct, but in reverse. Instead of having a small left ventricle, the baby has an underdeveloped right ventricle. The hole or VSD between the two ventricles is also quite large, which in a normal heart would be a problem, but for him because both upper chambers of the heart empty into the left ventricle, it will actually help him move blood. Lastly, he has no blood flow through his pulmonary artery. That's a big problem if we want him to be able to oxegenate his blood. Here's a couple pictures that illustrate some of what's going on. The first is a normal heart. The other is a heart with DILV.
Why is all of this a miracle? It's a miracle because instead of having to live the rest of his life with just his right ventricle, the weaker of the two, he'll make it work with just his left -- the more powerful of the two ventricles. It's a miracle because instead of having to go straight into open heart surgery within days of his birth, he will have a much less serious operation in his first few days here to create a shunt of sorts for blood flow from his heart into his lungs. That will tide him over until his is three months old and big enough to handle the first of two open heart surgeries that will be required to re-route blood flow permantly so he can lead a near-normal life. It's a miracle because instead of having a 75 percent shot at making it through his first surgery, the doctors said today he has a 99 percent chance of coming though the first operation. HOORAY!!
I know it is still bad news, but it's better bad news, right? I feel such relief knowing I will be able to hold him and take him home much sooner than we expected. I know he still has so much ahead of him, but I feel if we can just ask for these small miracles along the way, it will add up to one amazing miracle baby!
I came across this poem on another heart mom's blog and just had to share:
"It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels to go live on earth and be born. One of the sweetest angels says to Jesus "I don't want to leave. I like it here and I will miss you." He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says, "When you are born, your mommy and daddy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family; play and laugh everyday. And when it's time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."
For some reason this special spirit is ours. When the lead cardiologist told us they see only three or four cases of this a year at Primary's we just had to laugh. Some might say, "What are the odds?" But that's just it. It's not the odds we play. There is rhyme and reason in this somewhere, it's just not mine.
So for now I am supremely thankful for the perspective this experience is giving me on life, what's important, and in whom I need to trust. When Ty learned today that the baby's heart was a little better than we first thought he told me that he was glad that his prayers were fixing it. And you know what, I'm glad too! I am also learning after 10 years and two kids what an amazing man my husband is. He is my confidant, my friend, my sanity, my gift. Not a bad reminder of all the reasons I love him after a decade of life together, right?
Here's to one amazing day.