A Week Of Never-Ending Appointments

I am happy to say that we survived our crazy week last week. It wasn't nearly as brutal as I was expecting it to be. Was I completely and totally exhausted physically and emotionally Friday evening? OH YES! I went back to work last week. I was both looking forward to it and dreading it. I don't know why I was worried; it was so good to be back. I am so blessed to work with the best staff around. They supported me and loved me through the whole week. I have to admit, I loved talking about Mary so much. Kids come tomorrow. Prayers are surely appreciated. I have a big class this year, full of kinders! I am so excited but also worried about getting tired. I don't know why I worry, everything always works out!

Last Monday we had our appointment with the perinatologist. She has been following us very closely and monitoring Mary. We also had another ultrasound (which I always love)! As usual I am in great spirits when we get there, and by the end of three hours I am in tears. This appointment was no exception. I ugly cried. I always go in with such hope of miracles, and while I can accept that she still has so many abnormalities, I can't handle making choices we have to. After our last ultrasound 4 weeks ago, we had pretty much decided on comfort care for Mary when she was born. After this ultrasound, I just don't know if I can make that choice. It is definitely still the decision my heart is leaning towards, but my mind gets in the way. I feel like if I commit to comfort care that I am "giving up" on Mary. I know this isn't the truth, but its a very real struggle right now. The more the pregnancy progresses, the deeper my love for Mary is. I CANNOT imagine my life without her. I know it's the reality of our situation, but it is so painful. Even though she is still comfy in my tummy, she is the focus and center of our lives. Everything we do, she is with us. I just love her to much. No mommy or daddy should ever be in this position. It's so painful. It really is pretty crazy though, how many lives she is touching. One little baby is making an impact on this world. We love her so much. 

Updates from the ultrasound: She is now 1lbs 3oz. She is measuring at 24 weeks gestation even though I was 27 weeks at the time. Her tummy is only measuring at 21 weeks gestation. Apparently this is very significant. She is so little, but she is so perfect in our eyes. She does appear to have some lung "matter". Could they use a more harsh term? She also has confirmed Spina Bifida. She has the most severe form of it too. It's called myelomeningocele. They couldn't get a good echo of her heart (which leads to my heartbreak over the decision of comfort vs. supportive care). I had low fluid still, but I still had some. The doctor couldn't believe it. Her one kidney is working so very hard. The biggest change though was the significant increase of fluid in her brain. The doctor said you don't normally see this with holoprosencephaly or hydranecelphaly. This makes the doctor think there may be a VERY slim chance all of this fluid on her brain stems from the severe Spina Bifida. The Spina Bifida wouldn't account for her heart condition or her lack of a fully functioning kidney. Every ultrasound there are new and significant findings. We really needs answers. Because of this, we have made the very hard decision of proceeding with an amniocentesis. Now that I am in my third trimester there is no chance of miscarriage, but there is a very, very small chance of it inducing labor. We really need answers. IF this is all Spina Bifida, then we would definitely chose supportive care. This is a big decision we need to know. If it is Trisomy 13, then comfort care will be our confirmed route. We need answers so we know how to best proceed with care for Mary and me from here on out. Our amniocentesis is scheduled for July 29. Please pray for peace and comfort for me (and Sam) as we move closer. To say I am scared is a huge understatement. I have been asked many times if I'm scared to get the "real" diagnosis. NO WAY. My heart has been begging for answers. I don't ever want to give up on her, so if we need to make big changes in our birth plan, then so be it! 

On Tuesday and Wednesday we met with the head neonatologists at both of the hospitals where we can deliver her. It was very interesting to hear their perspectives. We have talked to many doctors, but not any that focus on special babies. Both doctors are incredible. They want to be certain as to what she "has" before we make big decisions. I am also assured that if the amnio shows 13 or 18, that they will help us make our comfort care plan. The head doctor honestly told us he has been "losing sleep" over our case. He first heard of us at 19 weeks gestation and just wanted to meet us. He knew what he was talking about and was very honest and frank with us. Even if it is all Spina Bifida and we chose supportive care, Mary has a VERY long and difficult path ahead of her. He showed us the NICU. It's incredible at Chandler Regional. I was surprised that I didn't cry on our tour. All the nurses saw us walking around with the head neonatologist, I can only imagine what they are thinking. Obviously they know, we have a "special" baby. I am thankful to have these doctors on our team now. On Wednesday we went to Mercy Gilbert. I am pretty sure we will only chose this hospital if we are sure it's going to be comfort care. They don't have a NICU. The doctor and charge nurse were just as incredible. Unfortunately while we were there, we saw a baby fighting to survive and being transferred. I cried and cried. The beautiful thing was that the doctor and charge nurse got teary with me. They are human and shared that it is hard for them as well. I was so thankful for their honesty and emotion. 

Friday, I met with my OB where we talked about my health. The OB's we see are also so incredible. We are seen once a week to monitor my health. They are also sort of the "headquarters" as they are the head of our whole, huge team of doctors. Every week, whichever doctor we sees has read the newest reports. They spend time with us. Talking honestly with us. There is a little bit of talk about the size of Mary's head. If it continues to "grow" due to fluid on her brain, there is a possibility that she will have to be delivered by c-section. Please join us in prayer that this is not the path we are led to. There are many reasons having a c-section would be unfortunate. Obviously, whatever Mary needs, she will get. 

If you can believe me, this all is the very short version of our week. There are so many factors to include, so much emotion involved. So many conversations no one wants to have. We are so loved though. God has never left our side.  He continues to safeguard our marriage as we walk this journey as newlyweds. It would be a challenge for any marriage to walk this journey. Life and death, financial hardships, uncontrolled emotions, these are all trying on a marriage. God blesses Sam and I with unconditional love for one another too. We walk and work daily to stay strong and not become a statistic. God blesses us with small joys each day. He is so amazing. We will continue to praise the One who has chosen me (and us) to carry Mary. Please pray as we grow ever closer to our due date, that we continue to have faith and trust in Him.