First of all, thank you all so much for the overwhelming support and encouragement we have received after my last post. I get by with a little (A LOT OF) help from my friends. I am so honored and grateful that baby girl and we were benefitting from so many prayers.
Second of all, we decided on a name! We have never decided on a name this quickly and easily before. We usually agonize over it until practically the delivery. But I suggested to Scott one name for her, and Scott suggested the other, and we both loved each other’s suggestions. We will still be following our family tradition of calling her by her middle name, and her middle name is Regina. She is named after the Queen of Heaven, and I have dedicated her to Our Lady. Scott and I decided that her first name will be Matilde, named after my mother and grandmother. Matilde means “brave in battle,” so it seemed appropriate. It is good to have a name so that I can start praying for her by name.
We had our first appointment with the fetal cardiologist today so that he could do a fetal scan of her heart and figure out exactly what is wrong. The atmosphere in the cardiology unit at the children’s hospital here is wonderful. We felt so much more at ease than we did at our high risk OB. They asked if we had named her yet, and referred to her by name for the rest of the appointment. I could have hugged our lovely nurse practitioner there, and sobbed happy tears into her shoulder, but I figured our relationship wasn’t quite at that point yet and she might consider it a liberty.
The cardiologist determined that she has a congenital heart defect called an atrioventricular septal defect, or an “AVSD” for short. It is a defect that is very common in people with Down Syndrome, but people who are otherwise genetically normal can have it too. Basically, there is a hole between the top two chambers of her heart AND the bottom two chambers of her heart. Instead of two separate valves in the center of her heart, she has only one large atrioventricular valve. He said that it will need to be corrected with open heart surgery, probably when she is 3-6 months old. Otherwise, the right side of her heart and her lungs will receive too much blood and her body will not receive the oxygenated blood that it needs.
We still don’t know whether she has Down Syndrome or not, and won’t know for certain until she is born. The blood test I had done will let us know the probability, but it is not 100% accurate. We will get the results of the blood test soon. But again, I am way more concerned about her heart defect than I am about the DS. We’ll just have to deal with the life threatening health conditions first, and then it will be a relief to deal with the rest, quite frankly.
All of this means that the rest of this pregnancy is going to be a marathon of doctor’s appointments. I have to keep going back to the fetal cardiologist to keep an eye on her heart and see how it develops, keep going back to the high risk OB to see if she has any other health complications (particularly since it is probable that she has a genetic condition and other things could pop up), choose a heart surgeon and go meet with him or her, and then somehow manage to squeeze in my regular OB appointments.
Oh, I think I have managed to figure out what I am going to pray for. I was stirred by the image of Jesus in the Garden of Gethsemane. “My Father, if it is possible, may this cup be taken from me. Yet, not as I will, but as you will.” Matthew 26:39. My earnest prayer is that she be completely healed, healthy and whole. However, if that is not God’s holy will, then not my will, but His be done. Resignation to God’s will is what I struggle with a lot, because I tend to think that my will is better.
If it were up to me, I would want off this ride. It is only natural for us to want to avoid all suffering, for us and especially for our children. I’m not sure how I’m going to bear sending my tiny baby off for open heart surgery. I’m emotionally exhausted already just thinking about it. But, here is my cross being offered to me, clear as day. I can’t really pretend not to see it, so I might as well hoist it up on my shoulders.
Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.
With God’s grace, Scott, Regina and I will find his yoke is easy and his burden is light. I will keep you updated! Please don’t stop praying for us and for Regina. I will be eternally beholden to you for it.