Update 1/24/14

Dearest Baby Girl,

Yesterday we had a full day! Mark had a Biochemistry test in the morning that we were both concerned because he hadn't had much time to study, and missed a lot of class for appointments. But he put forth his best effort and Heavenly Father blessed him. He passed! Woohoo! (He has to get at least a 90% so it's no easy feat.)

Afterwards we headed up to the U of U Hospital to meet with the geneticist/ high risk pregnancy specialist, Dr Byrne. We were supposed to meet with the pediatric neurosurgeon to discuss surgery options. Unfortunately he wasn't able to make it due to 3 emergency surgeries that popped up on his schedule. Talking to Dr Byrne we talked about the severity of your spina bifida. She says according to the ultrasound you have myelomeningocele, which is the most severe degree, also you have a little bit of fluid on your brain (anything less than 1 cm is considered normal and you only have 1.2 cm) but that usually doesn't come until later anyways. As a product of myelomeningocele you also have what they call the chiari II formation. Which just means that your spinal cord has been pulled on from the spina bifida which causes your cerebellum to be elongated and shaped a little differently because of this you might have difficulty breathing, swallowing, eye movement, and weakness in your arms. The Chiari II malformation is very common in your degree of spina bifida. However, she told us we might be candidates for fetal surgery. It's hard to say 100% until the neurosurgeon can take a look at the MRI. (Side story: We went to get the MRI right after meeting Dr Byrne and you were not happy one bit,  and you made sure I knew that. You are definitely your father's daughter, because you kept kicking me well after you were done. The MRI techs told me you were giving them a hard time because you were moving around a lot but we are proud of you. It's good for them to have a challenge every once and a while.)  Because the surgeon will be out of the country all next week teaching at a pediatric neurosurgery conference he won't be able to meet with us until Feb 3rd, the day he get's back. Which they assured us would be plenty of time to get everything taken care of. The surgery has to be done before you reach 25 weeks gestation and the earlier the better. Our case manager Paula let us know that if we elect for the fetal surgery it would be getting it done within a week (putting us around 23 weeks). Also, the surgery is only performed in 5 locations in the U.S. Unfortunately, the U of U is not one of them (yet)  so we'd have it done at UCSF (San Francisco, CA). It require that we are at the hospital for 5 days following the surgery and then I have to stay in San Francisco for 2 weeks  following, and if everything goes well and you are thriving, then they'll give us to go ahead to head back to Utah where I'll be on bedrest until you are delivered via C-Section at the U no later than 37 weeks. The biggest risk of the surgery is only 1/5 pregnancies reach 37 weeks. So there are a lot of complications from being premature that would could have to deal with. There are a couple of additional risks but they are only for the mother and I don't really care as much. With each following pregnancy my uterus will be weakened from all the incisions (since the surgery incision won't be in usual places since they are going to slice wherever you settle down) so all your brothers and sisters will have to be born via C-Section. Then there are always complications when anesthesia is involved, especially since both of us will be asleep for the procedure.  However, you will be more likely to have use of your legs at some degree, also, it decreases the neurologic complications from the Chiari malformation because it won't pull as much, and you could potentially not need a shunt placed although it is still very likely. Another positive is that currently your legs are perfectly formed and not clubbed yet so  we could prevent it as much as possible. However, if we elect to have the surgery after birth you will at least make it full term and they could fix your back, place a shunt, and not have to worry about underdevelopment of other body systems. One thing is for sure you will be born end of May no matter what because they won't allow you to keep "cookin'" past 37 weeks.

We have some big decisions coming up and pray that we will do what's best for you. Heavenly Father has been continually blessing us and is very aware our little family.

All my love,

Mom

P.S. Keep kickin' those legs, I don't take any of them for granted. :)

The Beginning

In efforts to get my thoughts and feelings on paper, which have never been a strong point for me, and update our family, Mark and I decided to start a blog. Because my strength has never been in writing I decided to start this blog by writing a letter. Hoping it will be easier if I can direct my thoughts to one person instead of a mass of people. This first post is long but I wanted to start at the beginning...

Dearest baby girl,

It all started October 4, 2013. I had made an appointment with my OBGYN because "Aunt Flow" was 6 days late. After spending  about $40 on pregnancy test of all brands and sensitivities  they all came back negative. Your  dad and I had been trying since that April, and if I couldn't keep track of things how in the world were we going to try the next month? At that appointment we talked over infertility issues and what to do, blah blah blah. Before we left they asked me to leave a urine sample for a pregnancy test, I had just taken a test that morning so I wasn't very hopeful. However to my everlasting delight, 5 minutes from leaving the building the MA  called and asked Mark and I to come back in because the test had a very VERY slight positive and Dr Dassel wanted to draw a serum HCG. I have never been more excited to get my blood drawn. (Although, I work with needles constantly I hate being on the other end.) I went back to get my blood drawn 48 hours later to see if the numbers had doubled. The Dr's office called and asked for me to come back in a couple of days for a follow up appointment. Mark wasn't able to come with me to that appointment due to school so all alone I soldiered up the stairs and to the office. My heart rate was well into the 100s that appointment, but I heard the best news I have ever had in my entire life. We were expecting a baby in June! HCG had gone from 19 to 108 (you're an overachiever.) A couple weeks later we got to see you (although you looked like a kidney bean, you were the most precious kidney bean I had ever seen) and see the little flicker on the screen telling us you had a heart rate of 124 bmp.  We couldn't be more excited! That appointment they changed my due date to 9 days later, from June 8th to June 17th, because you were measuring a little on the small side, which we attributed to the "late implant." The next few weeks were exciting and nauseating. Although I didn't really throw up with you until I was exactly 15 weeks  (on a wall at the mall in Prescott ...which  Mark was so proud at he took us both out to lunch for Mexican food), the morning nausea and fatigue were nothing to sneeze at.  However it could have been a million times worse so I was grateful you took it easy on your "old woman." We had another appointment around 13 weeks, and hopefully at this appointment we'd get to hear your heartbeat. AAHHH! I was so excited yet nervous. Well when the time came the doctor started listening with the doppler and there was nothing but static. After about 30-45 seconds of searching (which feels like an hour!) he finally picked up your little heartbeat at 145 bmp! It was, and still to this day is, the best sound I have ever heard. That is what I look forward to the most at appointments now is the little whoosh whoosh of your heartbeat. At 14 weeks, a week before Christmas Eve, we decided to go to Fetal Studios and find out if you were a boy or a girl and tell the family for Christmas. It was so fun to see you wiggling around and kicking your legs. You even sucked your  thumb (to your fathers dismay, so you might consider kicking the habit.) You are definitely a mover! Even with all of the moving we found out you were a little girl and we couldn't have been more thrilled!  But at that moment I realized I was going to have to be the discipliner because you already had your dad wrapped around your little finger and he was mush.  All self control I admire in him vanished and on our way to the parking lot we were calling everyone to let them know the news because he couldn't wait the week until Christmas. The next few weeks were again uneventful, except for a bought of bronchitis which had me convinced I was either coughing you to a pulp or was going to cause my water to break. Thankfully neither of those were the case but I am sure you had a very bumpy week in there. When we got back from Christmas vacation in Arizona  we had another appointment with Dr Dassel, we heard your little heartbeat and then he ordered another ultrasound. The long awaited anatomy ultrasound!! We were so excited to see our little peanut again. It's like a drug. I often contemplated bribing the ultrasound techs at work to see if I could get a peak of you from time to time. Well finally that day came, January 21st, and it felt like Christmas. I could hardly sleep the night before. Which is amazing because someday you'll be pregnant and you'll find you can sleep anytime, anywhere. Growing a baby is a lot of work! And I digress... during the ultrasound we got to look at your face, fingers(10), toes(10), legs(long like your moms), and verify yet again you were indeed a girl. (Although after we checked that part you crossed your legs and didn't uncross them the rest of the appointment...Dad was proud of your modesty. haha!) Finally we were looking along your spine and there on the screen was a bump 2 cm long which looks huge since you are only about 10 inches long total. The ultrasound tech got very quiet and started taking pictures of your back from every angle. Finally she started taking a look at it from transverse angles. Down in your lumbar region our suspicions were verified. There was no closing of the spinal column in that region. You definitely had spina bifida. Although the ultrasound tech didn't say anything Mark and I had taken enough classes covering spina bifida to know exactly what we were looking at. It was quiet for a long time. I was scared to say anything out loud. My mind was searching for answers, how? I took my prenatals almost obsessively, especially before and during your first trimester. I even made Mark go to walgreens very late one night and get me folic acid supplements when we were out of town for the day and I forgot to pack them... It had to be a funny smudge on the screen because there was no way. What? What did this mean for you, our baby girl? Were you going to be alright? What are the complications of spina bifida? I know I learned them in school but for some reason my mind was blank. Please, Father in Heaven, don't let this be true.  And then it hit me, and I mourned. I prayed and I mourned. Not mourning that we had been blessed with you. Never that. I mourned because I realized what this was going to mean for you. You are going to have trials, trials that I've never had to deal with. Instead of spending the first days of your life in my arms, you were going to be surrounded by surgeons.  Then for the rest of your life we will have regular doctor's appointments and most likely more surgeries throughout the years. Then following that, you were going to have to learn how to do things differently than most. You might have braces, a walker, or a wheelchair, or all three at some point in your lifetime. You might have to have brain surgery to have a shunt put in at some point, hopefully never. You might not have bladder control requiring catheters your whole life. Because there are so many different degrees of outcomes to spina bifida it's hard to say what will be your trials. My greatest fear is that you will let this limit you, there is so much more to you than that and anything you put your mind to we will make sure you accomplish. One thing I am absolutely certain off, you are very special spirit of our Heavenly Father's and your father and I are humbled that you picked us as your parents.  

We love you more than you'll ever know.

All my love,

Mom