Counting down the hours...

Dearest Baby Girl,

Well you and I are here in Colorado getting prepped for our very first surgery which is scheduled for Thursday at 7:30 AM. This past week has been a flurry of hustle and bustle. Last Sunday all 3 of us left to drive to Laramie, WY where I got to meet many wonderful people from your Dad's mission. I love seeing how excited your Dad get's when he talks about people from his mission, and to get to meet some of the people I had heard about was such a fun experience. Once you are older we'll have to make another trip so you can meet these wonderful people too.

Come Monday we headed South into Colorado and continued to stop and see cherished friends along the way. Your Dad was on cloud 9 the entire time. By Wednesday we had made our way to Denver for a full day of testing and meetings. First on the agenda was another MRI. I wish I could say you behaved much better for this one but you didn't, and that's okay. They even made me fast before the testing hoping that it would help you hold still, but you have a knack for doing things your own way and not giving anyone too easy of a time. After a quick bite of lunch we headed back upstairs for your fetal echo. In this appointment  the doctor said you were a "shining example of a perfectly developed heart." (We were so proud...and relieved!) You didn't want to hold very still for your echo either but cooperated a little more, probably because you were tired from wiggling so much during your MRI! Last, we went for the ultrasound. We got to see your wiggly little body and legs that were kicking all the more every second. Even though you were kicking a lot we were able to take a look at your feet and the nurse commented that you had very long feet and toes just like me! Then we got to the best part. We got to get a 3D scan of your precious face. It has to be the best 3D ultrasound I have ever seen because we can see your features so clearly! You definitely have your Dad's lips and chin, and we're thinking Grandma Woodard's nose. But during the scan you wanted to keep your hands by your face and there was no way you were going to move them, but that's okay, your hand is just in the scan too (but it's a little distorted because you kept moving your fingers). I sit every night and look at that picture of you. You are the most beautiful little girl I have ever seen and I can hardly wait to see you in person (but I can wait for you to keep cooking, so don't start getting any ideas of coming early).

Look how cute you are!

Finally we sat down with the entire surgical team including Dr Crombholme, the chief surgeon, the neurosurgeon, Dr Handler, one of the maternal fetal specialists, Dr Reeves, the neonatologist, Dr Reynolds, a couple of the level 3 nurses, and the radiologist. The Geneticist and Fetal Cardiologist were supposed to come but since we already met with a geneticist and your amnio came back normal and your heart was in perfect condition they didn't have to come into the meeting. Once being sat down we went over everything. They determined that your lesion is between L1 and L2 (a little higher than we were originally told) and ended at S1. Your ventricles are still enlarged at but hadn't changed really from your last MRI (which is good). You still have wonderful movement in your lower extremities, and no clubbing of your feet. First we went through treatment for you postnatally if we decided not to do the fetal surgery, and possible outcomes. Then we went over the risks to you and I for the fetal surgery and possible outcomes of that. Basically there would be a 50% reduction in your chances for needing a shunt (but there is always that possibility), decreased hind-brain herniation, and increased chance of ambulation (walking) (but that could be short term since this surgery is so new they aren't sure how kids do once they get older and are growing as well as gaining weight.) The risks include (but are not limited to) a 13% chance of you being born before 28 weeks (don't even think about it little one!), 46% of being born before 34 weeks, a 50% of water breaking prematurely, herniation of the uterus, low fluid levels the rest of pregnancy, and a very small risk of you being born during or shortly after surgery (again don't get any ideas...I mean it). Also, to my relief, we found out that your pain receptors aren't quite developed yet so you shouldn't have a painful recovery from this surgery.

Following the consultation your Dad and I had a lot to think about, but after some serious thought and prayer we feel so strongly that this is what we are supposed to do for you, and we want to give you the very best opportunities we can before you are born. We pray that we will be able to prevent shunt surgeries, orthopedic surgeries for clubbed feet, and possibly even help you have normal urinary and bowl functioning. Although we could potentially get none of the benefits we feel strongly that this is what is best for your situation.

The next day we had a couple of morning one-on-ones with another Maternal Fetal Specialist, Dr Zaransky, the social worker, and the neonatologist, Dr Reynolds. The neonatologist told us more specifics on premature birth and what that could mean for you short term and long term. Since you are so healthy and of a good weight, if you were to be born during the s

urgery you would have a 70-80% survival rate, but with that only a 15% chance of normal cognition without any delays....and then the numbers just go up from there for each week you keep cooking.

First pair of maternity clothes!!

Shortly after the last meeting, I had to take your Dad to the airport to catch a flight back to Salt Lake since he had to teach that night, pulled an all night-er and took a test for school Friday morning, teach Saturday morning, then stake conference meetings the rest of the day Saturday, labs on Monday, and teaches again Tuesday. Wednesday morning he will fly back to Denver where we will be waiting for him and we will have our final meeting with the surgical team. Then be back to the hospital for our surgery at 5:30, so we can be in the OR ready to go by 7:30 am. In the mean time we were blessed enough to get into the Ronald McDonald House here in Aurora and have been able to make friends with some truly kindred spirits as well as get to know some people in the ward (which is an amazing ward!), go to the temple, go to get our steroid shots so your lungs can be a little more developed in case anything happens, and I got to buy some maternity clothes because you are now growing like a weed! AND we've finally started gaining weight! I was worried it'd never happen.

I ache to see your Dad and hate being away from him but this experience of being here has been good. I have had to really rely on the Lord for peace and comfort. I feel like I should be much more nervous about this (and I worry for you always) but I have felt totally at peace, especially since Monday. I know we are making the right decision otherwise I know I would not have this peace and calm washing over me. The Lord knows us and has encircled us with his love. Your Dad and I love you more than we could even comprehend and that love grows day by day. You are our amazing little miracle and we cannot wait to see how many wonderful things you're are going to do with your life.

Keep on kicking those legs!

All my love,

Mom

Valentines Day Update

Dearest Baby Girl,

Well a lot has been happening since that last time I wrote. My love for you grows everyday, and you're getting more wiggly everyday...especially around 2-3 AM. I just love filling your little jabs and kicks, it is the best part of my day. Your Dad and I have had so many blessings already come from having you in our lives, and have received so much comfort from our Heavenly Father. Like your Dad said, we have had many wonderful people in our lives praying for our little family, and it has been such a humbling experience to feel the comfort that has come from those prayers. We are forever grateful for our friends and family.

Since we've been told that the severity of your lesion qualifies you for fetal surgery, and we feel like that is the avenue we need to pursue. Since then we have been getting all the testing together to be referred to the surgical specialists. By far the worst part was getting the amniocentesis. The best part of getting the amnio is that they started the appointment with another ultrasound of you. Ah! I think you get cuter every time! Also, I'm noticing a trend of you liking to keep your hand by your face as often as you can. It just goes to prove you are my daughter because I was born with my hand on my face, and sleep that way to this day. (I guess it's a comfort thing.) You weren't big on cooperating during this ultrasound, and since we were at the University of Utah hospital there were 4 students that wanted to take a peek at your backside but you were not going to budge so they could get a better view. Once they were done with the preliminary ultrasound, the geneticists came in and explained the risks and benefits. Then finally we were ready to go. Again, you didn't really want to cooperate too much but as soon as the doctor started palpating my belly  to make sure the spot he was going to go felt good, you started wiggling around like crazy! (Now I know how to get you kicking!) Then in went the needle and you just kept kicking away. They warned me that if you started moving your face near the needle, (which actually was just the catheter that they left in) then they'd have to take it out and reinsert somewhere else. To my everlasting joy you didn't move your head near it. I was told by the ultrasound tech that they've had babies grab for the catheter, or try to suck on it, etc. So thank you for keeping it exciting, but keeping a safe distance away as well. Also, where they did end up going was high on my abdomen because of where you were positioned so it was pretty darn tender afterwards. Luckily, I never started cramping, it was just my abs that would hurt so not as bad as it could be, but I worried. Honestly though, I worry for you every single second of every single day. That's just what mom's do.

Most recently though, we've felt impressed that we need to look into the Fetal Care Center of Colorado, and we've felt that way since the beginning but didn't even know if it could be an option because the U told us that they've only worked with UCSF, and a couple other hospitals, but never Colorado. However, after having a couple great recommendations for Colorado and researching more about the medical team there, we've decided that we need to take a look at it. So after making some phone calls and making sure our insurance is accepted at that hospital too, we are set for a consultation this coming week. We will be seeing if everything else checks out for fetal surgery and meet the surgical team there. Then if we still feel that the fetal surgery is the best thing for you, and they feel it will be safe to perform on the both of us, the surgery should take place the week of Feb 24th.

Your Dad is pretty ecstatic (to put it lightly) to go back to his old mission and see people that he hasn't seen since his mission. So, it's going to kind of be a mini babymoon! Also, this is probably going to be the very easiest you'll be to travel with. ;)

Okay, I do have to tell you a couple of funny stories from this week, otherwise I'll forget by the time you grow up. Pregnancy brain has been in full swing lately, and luckily you are still tucked safely inside of me, otherwise I probably would have left you a thousand places by now. Since your dad teaches MCAT classes up at Weber on Tuesday and Thursday nights, I'll usually go up with him and just hang out at your Grandma and Grandpa Cannon's. Well since it's Grandma's birthday today, I thought we should try and make it special for her. First, your cousin Livvy and I decided to make sugar cookies last night so we could decorate them when Grandma got home from work. Well, I guess I have a hard time following a recipe because I completely forgot the eggs. And didn't realize it until we were about to put the dough in the oven and I was telling Grandma how much I love sugar cookie dough, and since this recipe didn't call for any eggs I could eat as much as I want. Then when she showed me the recipe and it did in fact call for two eggs I knew I had lost my mind. BUT we are gluttons for punishment, so we decided to bake them anyways. To my everlasting surprise, the cookies actually baked up just fine, and were moist and delicious! Well, after that I decided that I'd stick with something safe, so I would just mix in the pink food coloring to the icing so we could decorate the cookies. I poured in the food coloring then started stirring, but the icing wasn't turning pink. It was orange! So then I spent the next 10 minutes trying to turn the icing into a salmon, but instead it just turned into a dark orange. So not only did we have egg-less cookies, but now all we had was orange icing to decorate with.

I wish I could say that was the worst of it, but it's not. Like I said, it was Grandma Cannon's birthday, and every valentines day since I was little we'd get up and have pink pancakes for breakfast. Since Grandma had to work this Valentines day, your Dad, I, and Grandpa Cannon, got up very early to make sure there was a breakfast ready for Grandma's birthday. We made pink buttermilk pancakes, bacon, hash browns, and pink buttermilk syrup. (Don't worry, I had your dad check the food coloring bottle before I started adding any more food coloring to anything.) Well everything seemed to be going well and everyone "seemed" to enjoy the food, but I didn't eat any because my stomach was feeling a little upset and I blame it on the early morning. So after Grandma left, I went back to bed. Then when I got back up from my morning nap, I heated up my breakfast. It smelt and looked awesome....and then I bit into the pancakes. To put it nicely they were disguising. I later found out that I accidentally put in 1/2 tbsp instead of 1/2 tsp of the salt, baking soda, and baking powder. (I blame it a little on the fact that all the measurements have been rubbed off of Grandma's measuring spoons, but I should have noticed and I still don't know how I didn't.) When I mentioned it to Grandma this evening, everyone just sheepishly smiled and said they didn't have the heart to tell me so they continued to eat the pancakes! If that's not love then I don't know what is.

Well, Happy Valentines Day baby girl. We love you more than you'll ever be able to comprehend and pray for you constantly. Keep on growing and kicking!

All my love and more,

Mom

Dad's Turn 2/2/14

Dearest Baby Girl,

This is your dad here and its my turn to write. I cannot describe the love and already have for you. We have been praying for you every single day. So have countless others.

Tomorrow is the day we get some answers. We will be meeting with Dr. Bollo and your case worker Paula. Mom and I have researched everything there is to research about Spina Bifida. We are pretty sure we know everything about the risks and benefits of an in-utero surgery. Tomorrow is going to have to be the day we decide. Dr. Dassel was nice enough to release the results of the fetal MRI (the one where you kept kicking everywhere!) and we got more details. You have a 19 mm Myelomeningocele starting at the L2 vertebrae down. You also have a Chiari 2 malformation with some minor hydrocephaly and ventriculomegaly. Mom and I love you so much and we already cannot imagine a world without you.

You, little girl, have brought something wonderful and amazing into my life already. Sometimes I can be a bit pessimistic and impatient when dealing with others. I assume the worst in people at times, but you have helped me see the world differently. Hundreds of friends and family members have all huddled around us and given us tremendous support and love. Friends of all faiths and those with no faith have all become unified to pray for you. All differences have been set aside, and only love exists. The thing I want you to always remember is the overwhelming power of good in this world. It is an overwhelming power in this world despite what is shown in the news or elsewhere. My faith in humanity will forever be restored as I have seen the impact of this incredible gift. I am amazed to see notes of encouragement and love from friends and acquaintances from all aspects and times of my life, all for you. You are so loved.

Now, let me tell you the truth about your mom... She has never stopped worrying about you from the moment she knew you existed. That is just what she does. Better you understand that now and come to grips with it before you become a teenager. But she is also the most amazing woman. She has quit her job so she can be ready to do this surgery at the drop of a hat if needs be. She is willing to go through some pretty intense surgery and months of bed rest just so you might have a better life. Your mother is incredible and I love her so much. Every morning she sings to you and waits for you to give a nice kick.

So many miracles have come from all of this and we are so grateful for every one of them. God knows you as He knows us and He loves you as He loves us. I am starting to understand how much He loves us more and more. Have faith in Him and everything will always turn out. I love you baby girl.

Dad