A week ago on June 9, 2014, we had our 20 week ultrasound. We thought everything went well and then the doctor came in to tell us that our baby had a heart defect. All he told us was an "underdeveloped left ventricle." In our online research, we found there to be only one heart defect with that, hypoplastic left heart syndrome. We have since found out that it is the most rare form of heart disease, but also the worse form. We had a week to sit on it and write down some questions before going to Primary Children's Hospital yesterday, June 17th, 2014. We were still holding on to the hope that it was not what we had read, but it was verified yesterday that our second child does have hypoplastic left heart syndrome (HLHS). We have a very long journey ahead of us. We have a lot of emotions running through us. At this point, we're just hoping to make it full term so this little guy has a chance.
We have been told we could potentially have three options: 1) The most likely being a series of three surgeries over the course of 5 years and depends if his heart is healthy enough to have them done 2) a full heart transplant and 3) to bring him home and let him die at home because his heart isn't healthy enough or if we choose not to do the other two options (though I really don't think we could do this if we had the choice to do option one or two). The hardest part is not knowing if our child will live for a few weeks or a few years. We are beginning our research and it looks like we may have more options if we can go to a hospital in Boston. We have a lot to look into and to consider and pray about.
What am I feeling? Overwhelmed. Hurt. Exhausted. Terrified. Disappointed. Those are just some of the words I can think of. Thankfully, I don't feel any anger. If there was one thing I learned from our experience with Cooper (which I learned a lot) it is that the Lord has a better plan planned for us than we have for ourselves. The hardest part is having the faith to endure and see how His plan unfolds. Of course, I do have questions: Why us? Didn't we already go through a really hard experience with our last child? Didn't we have "our turn?" How am I supposed to make it through this? How is this going to affect Cooper? What about all the money? How am I supposed to afford this? Did we handle our last experience so well that the Lord thought we could handle this? How strong does He think I am? Wasn't having a family supposed to be an easy and happy experience? Ahh, again, the list goes on and on. Those these are the emotions and things I am feeling right now, I already somewhat know the answer and that is that things happen for a reason and things always work out. You just get sick of hearing it sometimes.
Some things I know: The Lord loves me. He loves us. He knows us. He is aware of our trials and how to comfort us. I know He hears our prayers and answers them. I know that we are meant to be this little one's parents, no matter for how long it be (we're hoping it is for a really long time). I know that families are eternal and that because of that no matter what happens I will see my baby again and get to raise him. I know we have a wonderful support system of family and friends that will help us get through this challenge in our life. I hope that we can look back on it and be reminded of how strong we were and how much stronger we are because of the experience. Life is good. It truly is. How grateful we are for modern medicine, for a loving Savior, and for incredible people in our lives.
Me & Bump, Actually at 20 Weeks - One Day Before Our 20 Week Ultrasound
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