Our Miracle Girl

        Oh my goodness there are literally no words to express how I’m feeling. We are having a little baby girl. A little genetically perfect little girl. No down syndrome, no noonans, nothing crazy. Todd was so excited that she didn’t have turners that he posted this on his face book “great news!!!! Dos equis!!! (two x's)” I was so mad; first, that he announced her by making a beer reference and second, that he TOTALLY stole my thunder in announcing her. Oh well, I’m over it. After 3 excruciatingly long days of zero sleep, anxiety, worry, tears, and minor freak outs they finally called me with the results. I was at home alone and asked if I should wait for the results until I was with Todd. She said she didn’t think so because the preliminary results were NORMAL. Then she told me we were having a little baby girl. Tears streamed down my face as I tried to write notes about what she was saying. I couldn’t believe it. How did she beat the odds…again? I drove like crazy to Todds school where he met me outside. I sprinted up to him and wrapped my arms and legs around him. He just started laughing. It was so fun to tell him we were having a little girl. He has told me since we were dating he wanted a girl first. I brought this cute little angel Halloween costume with me. He stood out by the dental school and as all of his friends came out for lunch he held the little outfit above his head like a trophy. There were lots of hugs and high fives, it was a great moment. It was a great day.

 

       As for you baby girl, they are still only giving you about a 30% chance of you making it to us. Because your genetics are all normal it must be some structural defect causing the problem. They told us it is most likely your heart. Your dad and I are rolling our eyes at the 30%. We think you have better odds than that. You are stronger than that, we just know it. Plus, did you know you have hundreds of people praying for you? How could it not be okay with all of those prayers. None the less, we will continue to treasure every second with you. You have brought such a special spirit and peace to our home that we hope never leaves. I have seen a more subdued version of your dad for the past few weeks, but today he is back to his old antics of teasing me ruthlessly and dancing around. He tells me that you are a strong willed baby, and that you and I will probably butt heads a lot in the future. I sure hope so little girl, I sure hope so. Love, mom. 

10.27.11

Dear baby,

        I feel like I’ve handled everything alright until tonight. We were supposed to hear the results from your test today but didn’t. I sat by the phone sick to my stomach all day. I can’t wait another minute to know if you are most likely going to make it to me or not. If you are going to have severe challenges, or maybe just moderate ones. Tonight I’m having a hard time being calm and brave and okay. I know that Heavenly Father will not give me more than I can handle. But, the part that scares me is how much does he think I can handle? The odds are all stacked against us baby. Stacked high against us…The worrisome part is, I know your dad can handle pretty much anything. I blame him for our current predicament, if I married some lame duck I’m sure I wouldn’t be in this place. Just kidding. That non lame duck is whats getting us through tonight. Tonight, just like other hard nights I’m hoping that he can say a prayer for us, can wipe my tears and sing us primary songs in his sweet off key voice until we fall asleep. These things I know: Us three are in the Lords hands. His will will be done, and it will be what is best for all of us. The comforter will come to us. There is a plan for us, and because of Jesus Christ we will be a family forever. Forever baby no matter what they say tomorrow, love mom.       

The wait

Dear baby,
What a sweet, but long day we had today. There were dozens of people call,text and email us just to tell us they were thinking about us. I cried when I saw their names on my phone, but knew if I spoke to them I would just lose it. I need to keep it together for now. Just another 24 or 48 hours, I just need to make it 24 more hours until I know your results. Hopefully then I will gain a little more composure, and also hopefully I will stop throwing up every 20 minutes, I think you and I must be a little nervous. Your dad is nervous too, but his friends at school have been especially kind to him. I am so grateful every day that he has gained this new group of brothers. To sum up my day, I am just overwhelmed with the love and kindness of people.I can feel their thoughts and prayers. It all overwhelms me and makes me cry. I have cried way more today from peoples sweet words and calls than I have about your little issue. Thank you all so much,words can't express my gratitude. If any of you 755 sweet readers from today feel like getting crazy and specific with your prayers go right ahead and pray that the next 24 to 48 hours fly by for us. I'm dying to know whats going on with my baby and patience is just NOT my strong suit. And as for you baby, lets you and I slip into a semi comatose state and wake up to a phone call that hopefully has good news, deal? Deal! Love, mom.

Test Day

Dear baby,

       Today was such an exciting/scary day. 1st, welcome to the 12th week of pregnancy little babe. We made it! 2nd, we got a CVS (chorionic villus sample) test today. They stuck a huge needle in my belly and took out a little bit of your placenta. It was a little painful, but everything went great and they only had to poke us once. The results of the test will tell us if you have down syndrome, turners syndrome, trisomy 18, or maybe a heart defect or something else. We’re keeping our fingers crossed that it’s trisomy 21,or maybe just something strange, but fixable with your heart. Turners and trisomy 18 don’t give us very good chances of meeting you, so we are hoping it’s not those. However, never the less not our will be done. The best part of the day was your cystic hygroma had shrunk! Almost half the size from 6 days ago! The doctors told us that it didn’t change our chances, but we were just happy to see that awful thing smaller on your back, and were stoked to see your little heart still beating strong. We came out of the test feeling so great. We are ready to accept whatever comes our way and feel honored and humbled that Heavenly Father would send us such a special little person, even if we only get to keep you for a few more weeks. Your dad and I were talking about our first proud parent moment. We were just so proud that you didn’t let that hygroma take you over. You fought, just like we begged you to. You fought, thank you. Love, mom.

Dear Sisters

Dear Mom,Dad,Hilary,Rissa,Lyndi,Lisa and Ashlie

            Thank you for carrying me for the last five days. I feel like you each literally lifted me to my feet and made the hardest days of my life actually happy days. You shared my sadness and my worry, you kept my thoughts positive, you were there when I just wanted to put my head down and cry (which miraculously wasn’t that often), and were there when I wanted to laugh. You all froze to death in the back of the van because I needed air, rolled down the window so I could puke at the toll booth, took a scenic route to a Mcdonalds in the Bronx for food, took me to Grimaldi’s, Rissa saved me during the bathroom incident, and you all put up with my whining. I loved mostly every minute…I think this trip was a huge tender mercy in this experience. I love you all more than I can ever say. Thank you Dad for giving this to us, and for turning my dark days light. I love you.  

Cape Cod

Dear baby,

       Today we had a great day. How perfect that while I am going through the hardest time of my life that I get to visit one of my most favorite places on earth, Cape Cod. We listened to the waves and picked up white rocks off the sore. Your cousins walked around barefoot in the sand and I hoped that someday you might be able to do the same thing. For some reason I feel like you might get that chance. I’m praying its not an empty hunch. Love, mom.

10.21.11

Dear baby,

        Today was the scariest day of my life. Today while walking around New York I started having stomach cramps. I thought I was losing you. I wasn’t ready to let you go, and knew I couldn’t do this without your dad. I cried, your aunts cried. And then, miraculously the cramping stopped. I know that we have a 90 something percent chance of losing you, but right now am not ready for that. I have 100% faith that whatever happens will be what is best for you, and what is best for your dad and I and I also know that we will be okay. But, I am not ready for you to not be with me anymore. I am grateful for every hour with you, and for every day with you. I love the nausea now, because it means I still have you. I couldn’t be more happy to still have you. Love, mom.     

NYC

Dear baby,

      Today we explored New York. This was my fourth time going there, but it was a whole new experience having you with me. I kept hoping that you could feel the rumble of the subway, and feel the peace of central park. There were two musicians playing Pachalebel’s Canon in D in a tunnel in the park. It was the most beautiful sound I’d ever heard.I cried and prayed that one day you would experience something so beautiful. Grandma Jill held me and we cried listening to the music. I want you to hear Canon in D baby, I want you to see central park, go to a broadway and have sore feet from walking so much. I want a full life for you. I want the whole world for you, I mostly just want to keep you. Please let me keep you. I love you. Love, mom.

10.19.11

Dear baby,

        Later that night after finding out about your little issue Grandma and Grandpa Sutton and a few of your Aunts came to our house because we were supposed to go on a girls trip to NYC and Boston that Grandpa Sutton had given us. I didn’t know if I should go or not. Your dad gave me a sweet blessing that blessed me with peace and comfort. He blessed me that my body would be a safe place for you. Grandpa Randall gave your dad a blessing that promised peace and understanding. I decided to go on the trip. I wanted to experience as much of the world with you as I could. Lets see the world baby. Love, mom. 

Cystic Hygroma

Cystic hygromas are fluid-filled  sacs that result from a blockage in the lymphatic system. The lymphatic system is a network of vessels that maintains fluids in the blood, as well as transports fats and immune system cells. Cystic hygromas are single or multiple cysts found mostly in the neck region. A cystic hygroma can be present as a birth defect (congenital) or develop at any time during a person’s life. A cystic hygroma in a developing baby can progress to hydrops (an excess amount of fluid in the body) and eventually fetal death. Some cases of congenital cystic hygromas resolve leading to webbed neck, edema (swelling), and a lymphangioma (a benign yellowish-tan tumor on the skin composed of swollen lymph vessels). In other instances the hygroma can progress in size
to become larger than the fetus. 

Cystic hygromas occur in approximately 1% of fetuses between weeks 9 and 16 of pregnancy. 
Genetic syndromes with cystic hygroma as a clinical feature:
• The majority of prenatally diagnosed cystic hygromas are associated with Turner syndrome, a chromosome abnormality in which a female has only one X chromosome instead of two. 
• Chromosome abnormalities such as trisomies 13, 18, and 21 
• Noonan syndrome
Because the risk for a chromosome abnormality approaches 50% when a cystic hygroma is found prenatally, amniocentesis or CVS (chorionic villus sampling) can be performed to diagnose these conditions. :

Prognosis:
In some situations, a cystic hygroma can be present in a healthy baby. If a chromosome abnormality is not found in the fetus, the outcome is generally better than for those who do have a chromosome abnormality. If a cystic hygroma is an isolated finding that resolves around 18-20 weeks gestation and the fetus has normal chromosomes, the outcome is good for 54-80% of these cases. In cases in which an isolated cystic hygroma does not resolve by 20 weeks gestation, 2-9% have a good outcome. Overall, there is generally a poor prognosis associated with the prenatal finding of cystic hygroma. Studies have indicated  that smaller cystic hygromas are more likely to resolve. Oligohydramnios (not enough amniotic fluid) or polyhydramnios (too much amniotic fluid) predicts a poor outcome. Hydrops occurs 22-76% of the time  with a cystic hygroma and is almost always
associated with miscarriage or fetal death. 

10.19.11

Dear  baby,

       Today we found out that we might not get to keep you very long. Today your dad and I’s lives changed forever. You have changed something in us, you have let us feel a deeper love than we ever knew existed. You have let us experience the love of a parent. The kind of love that makes us wish we could move mountains, the kind of love that would make us do anything to protect you. An indescribable, deep, profound love.

The first ultrasound you had you were 10 weeks along. Your dad and I laughed and waved at you, you were so cute and real. Your tiny arms and legs were just flippin in the wind and your little heart was flickering like crazy. I cried when I heard the woosh of your heart beat and your dad kissed me on the forehead. It was such a perfect moment. After the ultrasound a doctor came in and explained that there was something concerning going on. She said that the measurement on your nuchal line was looking big. She explained that this was concerning for down syndrome or something else. They wanted to see us all back in 9 days to retest. We cried with worry. Your dad was so strong for us. He held us, and loved us and knew just what to say. It didn’t take us long to accept the fact that you might be different. We could feel it in our hearts that something was wrong. We told grandma Jill and she told your Sutton Aunts and Uncles. I thought it was very sweet that your tough uncles cried and cried for you. We then had an outpouring of texts and calls expressing their love for us and for you. Their messages said things like “You two are perfect for this, we can’t think of anyone better to send this baby to.” Even your little cousins were praying for you. Their messages and their prayers got us through the next nine days, when we would get more tests. The family all fasted for us. To have my family fast for us was such a humbling and sweet experience that gave me so much peace. I have never felt so loved and cared about. I hope that you are feeling that love too, you are the most loved 11 weeks year old baby there ever was. I pray you can meet all of these amazing people.

The next 9 days past slowly. I was of course really sick and getting IV fluids 3 times a week and your dad was busy trying to focus on school. Your sweet dad spent hours researching babies like you. I mostly just prayed and cried alot. People called everyday, word had spread fast in Rexburg, with many sweet words from people we knew very little. The power of everyone's prayers was almost tangible in our home.  

Wednesday finally came. I was so nervous I must have thrown up a dozen times before your ultrasound. The machine came on and there you were. Our sweet, perfect baby still kicking, still with a strong heart beat. We were so relieved, but knew that something was wrong. We just felt it. That bubble on the back of your neck was much bigger, probably 6 times bigger than last time and it went all the way to your cute little bum. It was about a quarter of the size that you were. The doctors read the results and we were led to a genetic counselor. They told us what you had was called a Cystic Hygroma. We had researched that and knew that it was bad. Only 1% of all babies get it. They explained that yours was pretty severe. They gave us about a 6-10% chance that you would make it to birth, and if you did you would most likely have some serious issues. Your dad wrote down almost every word the counselor said while I just cried on his shoulder. They gave us some time alone, and once again your Dad was our rock. He cried to as he held me, he kissed my forehead and stroked my hair and promised we would make it through this.

We came home and prayed to Heavenly Father, then laid in our bed and talked to you. We told you that we wanted to meet you. We asked you to fight. We asked you to fight that thing on your back because we need you. You are our family now, and you have already become our whole world. Please fight baby. Love, mom.                           

9.28.11

Dear baby,

     I had my favorite moment of pregnancy today. As you will learn when you get here, your dad does not do really great with gagging noises. I started throwing up in the bathroom (usually he just leaves the room), but I needed a hair thing so he had to come into the bathroom and give it to me. I was throwing up, and then all the sudden I look over and he was throwing up!!! He was trying to catch it in his hands while running to our other bathroom, but didn’t quite make it. I laughed until I was sick… literally, I laughed until it made me throw up again. Silly daddy. Love you! Love, mom.      

9.20.11

Dear baby,

      You LOVE to remind me you are there. You are always making me nauseous and make me throw up. I’m not real good at eating at this point so I’m just crossing my fingers I don’t give you spina bifida, sorry if I do. Love, mom.  

9.9.2011

Dear baby,

       Today we told the fam that you were coming to us. Everyone was stoked. We met your Grandma Jill and Grandpa Randall at the blackfoot fair. We had debated how to tell them because we wanted it to be EPIC because you are our first. We decided that we would get one to those cartoon people drawn of us and they would draw me pregnant. Grandma and Grandpa came over and watched the lady drawing it. They were very very confused until the lady wrote the date May 7, 2012 on the top of the drawing. Then Grandma Jillian said “Does this mean I’m going to have a grandbaby May 7,2012?” We started laughing and said yes and hugged them both. Grandpa Randall just laughed and laughed. Apparently they just thought the lady was drawing me really fat… so not quite as epic as we wanted the reveal to be, but still fun. You will be their grandbaby #16. Feel free to stop making me nauseated anytime soon. Love mom.   

9.8.2011

Dear baby,

      Today we found out you were coming to us. I went to bed nauseated and woke up feeling a little sick. I didn’t really think I could be pregnant, but decided to take a test I had laying around anyways. I was shocked when 2 little lines showed up! I ran around the house hyperventilating and laughing like a crazy person! Your dad was at school, so I jumped in my car, pajamas and all and headed to his school. I was so full of adrenaline and shock and excitement that on the way out of the house I ran over the neighbors flowers with the car… whoops. I’m sure I made it to dads school in 10 minutes just laughing and crying with happiness the whole way. It was right in time for his lunch. He came out and I handed him his lunch, which was really a Tupperware container with the test in it. He looked at it and got this huge smile and said, “Are you serious?” Then he jumped out of the car and ran to my side and pulled me out of the car to give me a huge hug and a kiss. It was one of the funnest days of our life. We feel sooo lucky and blessed and excited and scared and happy to be your parents. Your dad kept saying “What the freak, we are going to parents!” And I kept responding “bless this poor little things heart… we are going to be parents.” haha, we hope and pray we don’t screw you up to bad. We can’t wait to be your parents. Love mom.