Triploidy

Well, we got the call from our doctor with the results of the first part of the amniocentesis on Friday evening. I didn't think the news could bring more disappointment, but I was wrong. We were told that our baby has triploidy. This means that there are 69 chromosomes instead of the 46 that there should be. It's not just one chromosome that's affected as in the case of a trisomy like we originally thought; it's all of them. One of the main issues with triploidy is the fact that it's so rare. This only happens in about 1% of pregnancies and the majority of those miscarry in the first trimester. So we have a fighter on our hands, who is beating the odds. That said, my OB was concerned about the possible health risks to me. The doctor who did the amnio had seen one case of triploidy when she was a resident probably 15 years ago. The woman came in and was seizing because she had developed preeclampsia which moved quickly into eclampsia due to the fact that the baby was triploid. I think that this caused a lot of worry to my OB and the other doctor because it's a risk to me. As I was talking to her, it seemed like the choice was how to deliver: vaginally or surgically. Obviously, this news was devastating to me as I thought about the fact that I want to continue the pregnancy but also have other people to take care of.  As we ended the conversation she told me that she would call me as soon as she got the rest of the amnio results and asked if we would like to know the gender. I told her yes. Our sweet little angel is a girl: Rose Marie Stringham.

Initially, it seemed like my decision had to be between delivery methods and I was heartbroken. Rose has fought so hard to make it this far that deciding to end that fight didn't sit right with me. We started researching and getting information from other health professionals to help widen our base of knowledge. A lot of our research informed us of the rarity of our situation and made me realize that we weren't going to be able to get any definitive answers about the odds or likelihood of the pregnancy becoming a risk to me. There just isn't enough data. Two of Matt's sisters, Ashby and Stacey, got in touch with their OBs and explained my situation and asked their opinion on the pregnancy and what they would do if I were their patient. Both of them said that they would start treating me as a high risk patient and have me come in weekly to check my blood pressure, urine, and Rose's heartbeat. Then, if the situation warranted, and I developed preeclampsia, we could make a decision then based on an actuality rather than a possibility. Ashby then talked to her bishop (or ecclesiastical leader) today who has been an OB for 30 years. This coincided with Matt and many family members fasting and praying that we would find some direction and answers to our plight. Matt and I also received very comforting priesthood blessings that helped us feel hopeful.

As our home teacher who had helped with the blessings was leaving, I got a call from Ashby telling me about her conversation with her bishop. He told her much the same as far as how he would treat me as a patient. He explained that they would want me to get to 28 weeks when she would be viable and have a chance of not dying during labor. But he also told her that he has had three patients who were pregnant with triploid babies. None of whom developed preeclampsia. And one of whom carried until 37 weeks. Heavenly Father is so aware of us. It was no coincidence that Ashby called when she did. We as well as many of our friends and family had been earnestly supplicating the Lord for guidance. And He has not forsaken us. It is an absolute miracle that this doctor has seen three cases similar to mine all of which were healthy pregnancies. When we look, we can see the tender mercies of the Lord. He is watchful and mindful.

I don't know how long Rose will be able to keep fighting, but I do know that I will help her to do so for as long as I can. She has already defied the odds many times over. We know that we may not get to meet her while her perfect and valiant spirit is still in her body and it is absolutely heart wrenching. But I know and have faith that we will get to raise Rose in the eternities. This is not the end for her-- it's truly only the beginning. We will be blessed to have someone on the other side who will watch over her younger siblings until it's their time to come to our family. In my mind's eye I can almost see it: she's telling them one by one how much we have yearned and prayed for them, how she knows we will protect them when the odds are with us since we watched over and protected her when there was no hope of bringing her home. How I love our little Rose. I can tell she has a will to rival her older brother's. She is literally the embodiment of what it means to fight.

God's Surrogate

After writing last I received an incredible outpouring of love, support, and prayers. I can't express how grateful I am for such amazing family and friends who are standing by us at this difficult time. So to all of you who are thinking of us and praying for us I say, "Thank you!" I also decided that I want to be better at keeping up with the blog. It's cathartic for me and I think as our situation progresses it will help to be able to look back on this time and see the many miracles that occur. It also seems that there are many out there who want to be kept up to date on what happens.

As I have been thinking about this almost constantly, I've had many thoughts that have brought me comfort and a measure of understanding. Many of which are the little things that I won't get to experience this time around. When we got pregnant with Will and then found out we were having a boy I was able to plan and prepare. I got to buy the little clothes. I got to plan and execute a nursery. And one of the biggest little things that I'm sad I'll miss out on is getting to celebrate with family and friends at a baby shower. I got to share in the excitement with my wonderful family and dearest friends. And I know I will be attending many showers between now and my due date to celebrate others' miracles. And I don't at all begrudge them the joy and excitement. On the contrary, I'm far more aware now than ever before of how worth celebrating every miracle (baby) is. I look forward to being there for others and sharing in their joy. But I know as this baby grows within me and I continue to go through this pregnancy I won't get to have a celebration. There will be no tiny baby clothes being carefully folded and put away. And designing a nursery won't be necessary.

There are other times when I'm not feeling sorry for myself like that though. As a woman, I have the unique and sacred ability to partner with God in creating a life. He provides one of his precious spirits and I provide an environment in which that spirit can get a little body. Normally we get to then partner with our spouses in creating an environment where that perfect little baby can grow, learn, be taken care of, and be cherished. We get the incredible blessing and responsibility of taking stewardship over one that's not truly ours. Ultimately, God is the Father of us all, He just lets us share with Him in the joy of being parents.That led me to thinking of the fact that right now I'm acting as a surrogate for God. Usually when we act as a surrogate for him we get to keep the baby for a while. But for me, I know that's not the case. At some point God is going to call His baby back home to Him. This knowledge doesn't make the loss any easier. My heart still aches for the baby I won't get to cuddle and show the world to. But it does help me know that I'm doing the right thing for the baby. I want as much time with this precious spirit as possible, though I know it won't be much. But I want to feel confident in the fact that once I see my baby again, they will know how much I wanted them to live and to be mine even though I wouldn't get to keep them in this life. They will know how much I truly love them.

An Update

It has been forever since I have written, I do realize that. But this post isn't to try and catch everyone up on the past year. It's more recent than that. I will be 20 weeks pregnant tomorrow. Yesterday (Monday, August 25), I posted on Facebook saying we had been having a tough day so I felt it prudent to explain. Matt and I went to the doctor to get an ultrasound to find out the gender of the baby we are expecting. We were beyond thrilled and filled with anticipation. The ultrasound tech started the exam and did her thing getting picture of different parts of the anatomy. She told us that the baby was curled so at that exact moment she couldn't see well enough to determine the gender. She had me lay on my side while she went and showed the doctor over ultrasound the images and to confer with her. I wasn't concerned in the least. The tech came back with the doctor and then the doctor dropped the bomb.

Our sweet baby has severe and fatal abnormalities most likely due to a chromosomal issue that occurred practically at conception. (We will know more for sure after we get the results of the amniocentesis) The frontal lobe of the brain didn't develop correctly and there is fluid in the back of the brain. The heart is enlarged and is surrounded by fluid. The bottom of the spinal column didn't develop correctly. The size of the baby is measuring small by a month. And the baby doesn't have kidneys or a bladder.

We don't know if the baby will make it to full term, but even if it does, it won't live more than a few days. For us, the last thing that mattered as we were being told this horrifying news was the reason we had been so excited to have the ultrasound in the first place.

I'm in shock and mourning. I never thought I would be in this position. I plan to continue with the pregnancy and allow this perfect spirit to grow inside me for as long as Heavenly Father allows it. It's heartbreaking knowing that I won't get to bring my baby home from the hospital and may never even get to hold them while they are still breathing. But I do feel strongly that one day I will see this baby again.

As we left our appointment yesterday I told Matt that the day before I had been reading the lesson for Sunday School next week in preparation. The lesson is about Job. The verse that keeps coming to my mind is found in the first chapter, verse 21: "And said, Naked came I out of my mother's womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord."

We are so grateful for the outpouring of love and support we have received. Thank you for all of your thoughts and prayers. I know that many out there have experienced this kind of loss an mourning and I hope you know that we love you and know that the Lord loves you.

So as of now I have moments when I'm okay and others when I am not. So if I'm not particularly perky when I see you, please understand that it's not you, I'm just dealing with this situation the best I know how, but please know that I love and care for all of you and am grateful for you.