Little Baby Maycie...

This post was a hard one for me to write. Avoidance is much easier than confrontation. Our little girl is always on my mind. Our little Maycie. But sometimes it is much easier just to pretend she has a healthy little body than deal with the truth of her complications.

Our appointment on Friday did not bring the good news we were hoping for. Unfortunately, our amniocentesis results were not in so we did not get to learn the chromosomal issues Maycie may have. They think the results will be in by Tuesday but we may have to wait until our next appointment [Sept. 11th] to learn the results. But even without the results, we were anxious to meet our new doctor and have our million questions [really... I had two full typed pages] finally answered.

Dr. Draper is amazing. We are so grateful to have him as our doctor. He answered almost every question on my list before I even had a chance to ask them. It is very comforting to have someone who believes the same things we do and who holds the priesthood assist us in bringing our little girl here safely. And we were relieved to learn he travels to Pocatello twice a month to see his patients in this area. This means Jake and I will have less traveling time during the pregnancy which is a huge blessing to us. We will meet with him when he is in town for regular ultrasounds to check Maycie's growth. We will also meet with our original doctor, Dr. Cox, for regular pregnancy issues every month. We will only travel to Salt Lake to meet with Maycie's cardiologist [heart issues are very likely], her plastic surgeon, and her pediatric surgeon. Goodness, she isn't even born yet and already has a huge team on her side!

Dr. Draper is definitely a straight shooter [which is a blessing and a curse]. He began by explaining the possible outcomes that may occur throughout our pregnancy, especially if Maycie has any chromosomal issues. This was hard for Jake and I to hear. After a few minutes of daunting news, I finally asked him to discuss what we knew for sure rather than the possibilities. He was so sweet and agreed to only discuss these possibilities if I asked him specifically. I know these topics have a high chance of being in our future, but sometimes you can only handle so much at a time.

Even without the amnio results, there are a few facts we know for sure.  Maycie has a cleft lip as well as a cleft palate. This is a very common birth defect and can be fixed with great results. But it means even more surgeries for our little girl. Her cleft lip is very severe and occurs on both sides of her upper lip. Dr. Draper did mention the middle part of her top lip is full [a gift straight from her daddy] and he thinks this will help in producing minimal scarring. Usually cleft palates are not diagnosed so early in pregnancy, but Maycie finally gave us a front shot of her face and Dr. Draper said he was able to see clearly that it was present. The surgeries to fix these problems will not occur until Maycie is several months old [meaning even more hospital time for our little girl].

He also informed us her omphalocele is much bigger than we were originally lead to believe. They actually call it a "giant omphalocole". Not only are her intestines outside of her abdomen, her stomach, liver, and other internal organs are in the omphalocele as well. This was hard to hear. It is much more serious than if it were just her intestines as we originally thought. Basically this means more surgery, more hospital time, and a higher risk of complications during delivery. There are several other factors that contribute to her omphalocele's "scariness" but we are trying to stay positive and not dwell on them.

Right now we are working on staying optimistic. It is frustrating not to have every piece of the puzzle filled in. But we are trying to count our blessings. For one, we get to see our sweet little girl almost every two weeks. Not many pregnant mothers get to say that. And goodness, she shows off a little more each time. We love it. We also have a huge support team behind us. Sometimes I wonder how people make it through trials without family. Jake and I both are pretty dang blessed with good ones! Another blessing is our new doctor. He concluded our first meeting by reminding us that families are forever [which is a huge blessing itself]. I can already tell he cares for us and will do whatever he can to make sure we get to hold our little Maycie.

Again, we appreciate your thoughtful comments and prayers on our behalf. You have no idea how much your prayers have touched our lives. Please know your phone calls and texts also mean the world to me. I apologize if I do not get back to each of you. Sometimes it is just easier to write down [thanks to the blog] rather than speak about Maycie's issues out loud. But please know your words are not lost on us.