Have you ever had a secret that you were keeping to yourself and close family and friends knowing that eventually the time would come where you should share it with others as well? Jason and I have--we found out about six weeks ago some very difficult information about the baby I am carrying. Since we both are very private (me more so than Jason) we have waited to tell others. We needed time to digest the information and mourn the hope of having a healthy, perfect baby. Even now I am somewhat hesitant to share the information, I feel that now is the time to do so...
Our little girl has been diagnosed with what is called Hyper plastic left Heart Syndrome (HLHS) what this means in layman's terms is that her heart didn't develop correctly causing the left side of the heart to be non-functional. Luckily while she is still in utero she is fine and doing wonderfully (she moves even more than Morgan did!). However, when she is born she will immediately need to be placed on drugs that keep the valve open in her heart that normally closes within days of birth. The doctors will stabilize her and as long as she is doing well she will have her first of three surgeries within the first week of life. This surgery is the riskiest--they basically go into the heart and reconstruct it so that the right side of the heart is doing all the work--which it is not normally designed to do.
If the baby does well, she will then have the second surgery between 4-6 months of age. We were told that this is the least risky surgery because it doesn't consist of going directly into the heart (its working with the artery). The third and final surgery would be performed between 2-4 years of age. These surgeries are fairly new (about 20 years) so no one really knows how long the right side of the heart can sustain doing all the work, since it was designed to work only half of what the left side of the heart normally does. But the goal is to at least get the baby into childhood, so that if she needs a heart transplant--there is a greater chance of getting one the older you are.
I know it is quite a bit to digest and right now we are just waiting until July--till when she is born, since there really isn't much we can do now. It is extremely hard, I can't even bring myself to buy anything for her with fear that she will not make it. But, Jason, bless his heart has insisted that we buy something for her so he picked out this beautiful little dress for her.
We have already decided on a name for her. We were driving home from Jason's parents' house the night we found out about the baby's heart condition and I felt very strongly that we should name her Grace. Neither Jason or myself are big fans of names like Joy or Faith, so Grace was never a name we ever considered. As my mind thought of Grace I was reminded of the definition of Grace in the bible dictionary--"divine means of help and strength, given through the bounteous mercy and love of Jesus Christ. It is through the grace of the Lord that individuals receive strength and assistance [that they wouldn't] obtain left to their own means. Grace is an enabling power..." I suggested the name to Jason and he wasn't sure of it, but after praying and thinking about it both of us received confirmation that her name NEEDED to be Grace. We needed to have her name be powerful and meaningful--how much more power can there be than that that comes from the grace of God and the Atonement of Jesus Christ?
So that is our secret and now we have shared it with all...we don't want pity or anything else, just prayers that our little baby Grace will be strong, that she will be a fighter and that whatever the road she must travel will bring she will be able to endure it and enjoy life here with us and her big sister Morgan.