When we first learned of Maggie's diagnosis, I knew that God wanted me to pray for peace and I asked our friends and family to join with us in praying for that peace. God did and continues to hear those prayers. There are moments of sadness, anger, and frustration but the moments of peace, laughter, and just plain normalcy far outweigh them and for that I am very thankful.
However, today was one of those tough days. I had an OB appointment today and I am so thankful that Charles was able to accompany me to the appointment. Charles and I have been researching and talking about different aspects of Maggie's birth and we were eager to talk to the doctor about them. One of the main items that we were hoping to discuss with the doctor was the possibility of donating Maggie's organs after she passes away. As we have researched anencephalic babies as organ donors, we have found that the possibilities of doing so are slim --- very slim ---- needle in a haystack slim. There are numerous factors that are taken into account before organ donation can be considered. First, an organ donor baby must be born alive, her lungs should be developed enough to survive outside the womb, she must be a certain birth weight, and numerous other factors. There are also certain ethical implications to consider, namely, the "dead donor rule." An anencephalic baby is not considered brain dead because the level of consciousness that they experience cannot be determined and no baby less than 7 days old can be labeled as brain dead. We understand these ethical implications and agree with what that research says. That being said, the organs of anencephalic babies often begin shutting down before brain or cardiac death can be determined, making the organs unfit for transplant. Although there is much we still have to learn, we do understand that allowing Maggie to be an organ donor will be highly unlikely, almost impossible, but we still do believe there is a chance and right now we are praying for that chance.
The doctor that I saw today did not offer much hope for organ donation and was not able to provide us with any more insight about it. It was very deflating. The doctor also suspects that I have polyhydramnios, a condition whereas my uterus is holding an excessive amount of amnio fluid. This condition occurs occasionally with anencephaly because the baby is not able to swallow amnio fluid like healthy babies do. I had been researching polyhydramnios and had suspicions of it myself. I have felt "larger" at 30 weeks with Maggie then I did when I was pregnant with Carson. I have also had intense back pain -- at 5'2" an oversized tummy is tough on the spine. I also have had a couple bouts of nausea over the last several weeks (another sign of polyhydramnios). So while I do not disagree with the doctor's diagnosis, I was frustrated when he implied that I should consider going ahead and inducing labor. I get frustrated when scare tactics are used or when my wishes are ignored. While I have felt supported in my decision to continue carrying Maggie by a select few in the medical field, I have also experienced the proverbial eye roll by others. I realize that I am not a medical expert and I do trust medical professionals, but I also have to be Maggie’s advocate. From what I understand, polyhydramnios can be managed if it is not too severe. My doctor asked me to see a specialist for a full diagnosis.
Even though it was a tough day, I know that God will restore peace and give comfort. I ask for your continued prayers in the following areas:
First, that God will give us wisdom on how to proceed with the diagnosis of polyhdramnios. We are praying that the diagnosis is minimal and that I can continue with the pregnancy without any additional risks.
Second, that I will feel supported by my doctors in our decision to continue carrying Maggie.
Third, that organ donation is a possibility, as rare and unlikely as it may seem.
Finally, please continue to pray for our sweet Carson. This evening Carson told us that he learned the sign language sign for “family” at daycare today. After he showed us the sign, I told him we were a family – Carson, mommy, and daddy. He then walked over to me and patted my tummy and said “Maggie too.”
I said “that’s right; Maggie is part of our family too.”
Maggie is lucky to have such a wonderful big brother!
On Friday we had the opportunity to take Maggie’s first pictures at Stork Vision, a prenatal imaging center in Atlanta. Shannan, the owner of Stork Vision, did a wonderful job capturing 3D ultrasound images of our little girl. We had been praying that the images would be clear and that Maggie would be awake during the appointment so that we could see her moving around. I gave Maggie a little pep talk and asked her to show us her best moves – and it worked (the chocolate chip cookie I ate right before the appointment might have had something to do with it too!). Maggie kicked her feet and moved her hands the whole time – she definitely likes to be in front of the camera.
