Nap time with Daddy

My Dearest Emma,

You are proving to be very VERY good at putting dad down for naps.I probably have about 100 more photos of you and your daddy asleep but I'll only share a couple.

We're so crazy in love with you sweetheart. Every day is better with you in it. 

                                                                All my love,

                                                                            Mommy

NICU times

Pictures from the NICU

Brand new

Just a couple hours old and you already have a bow in your hair!

Mom looks awful but it's our first family picture. whoot whoot!

Snuggling Dad

Skin to Skin with Daddy

1st Easter

Sun bathing

Chillin' like a villain

Holding tight to the binky

exhausted

Right where you though the nasal cannula belonged 

weighing in

Physical Therapy with Debbie

Your 1st brace!

The start of the double chin

Finally in a big girl crib!

bath time!

Coming home

My Dearest Emma,

You are taking a nap right now so I saw it as my opportunity to try and fill you in on what's been happening lately.

You came home from the NICU on Sunday June 1, 2014. Needless to say your Father and I were excited and terrified. You had such wonderful nurses take care of you especially your two primary nurses Mollie and Mady. It was such a relief to know when we weren't there you were being taken care of by people who love you almost as much as we do.

          

Mady

Molly

You took feedings very seriously once we started you on oral feeds. For the first couple of days I'd be at the hospital early to feed you, then we'd have to tube feed you for 2 feedings because you'd be so exhausted from breastfeeding you'd sleep for 9 hours straight! Then we decided to try giving you a bottle when I wasn't there during the night time. You loved that! In fact after 2 days you pulled out your feeding tube and Mollie decided not to replace it until you decided not to take a feeding. Well you took the rest of your feedings orally so it was never placed again!

No more NG tube!

 You enjoyed eating so much you'd often eat twice the amount you needed! (Your dad and I joke that you eat like your Father and sleep like your Mother because you take naps very seriously as well.) You progressed so quickly with your feedings (which is what usually holds babies back from going home) we thought you'd go home 2 weeks earlier than you did BUT you kept choking on your spit up! (Although I'd rather you choke on it while we were in the hospital than when you are at home with me.) Eventually you were able to go 7 days without choking on your spit up so they had your Dad and I sleep over in the family room of the NICU so we could take care of you for 24 hours and prove that we could do it on our own.

Getting Ready for our First Sleepover (in he NICU)

Needless to say we were able to keep you alive for that first night so they let us take you home!

          

Here We go!

You're ready 

We stayed at Grandma and Grandpa's house for a couple of days while the carpet was replaced in our apartment.
                                                                                                     

Bath time!

Finally in our own home

I still would have chosen you...

Our Dearest Emma,

A lot has been happening lately and I will fill you in on all the details leading up to your birth but for now I'm just going to reminisce of the events that took place exactly one month from today. 

You were born on a quiet Thursday morning at 3:01 AM. On Wednesday morning I had woken up spotting a little bit but wasn't overly concerned because I had spotted on and off since fetal surgery. A week and a half prior my water had broken and we were thinking you'd make and even earlier entrance into the world. Thankfully that did not happen, so you and I hung out on hospital bedrest. Since things had stabilized we were certain we could make it another 4 weeks until May 6th at 7:30 AM, your scheduled arrival date. (Once your water breaks the latest you will be delivered is at 34 weeks due to the risk of infection outweighing prematurity at that point.) So your dad made himself very comfortable at the hospital. He even wheeled in (on a wheelchair) our mattress topper in order to make his couch/bed more comfortable and converted one of our closet into our "snack pantry" filled with all sorts of snacks to munch on in between meals.  We tried to make the most of things. We enjoyed my daily allotted 30 min wheelchair rides out to the patio, and I probably ate my body weight in vanilla pudding. Day after day we hung tight just counting down the days until we could meet our baby girl. 

Well Wednesday night your dad and I were watching a movie and I fell asleep. When I woke up after a wonderful nap (better than any amount of sleep I'd had in a long time) I got up to go to the bathroom. I was bleeding...a lot. I told the nurses and they immediately did a non-stress test (NST) to make sure you were okay. I was used to NSTs because I got to have one every morning. I loved sitting there listening to your heart beating so rhythmically for 30 minutes. It was the best way I could start my day. From the NST you were doing great so we weren't concerned but just as a precaution they transferred me over to Labor and Delivery to be on observation for a couple of hours.  They assured us we would be back in our old room by midnight so we sat and listened to your heartbeat on the monitors not knowing that in a couple of hours our lives were about to change for the better. 

Eventually I started contracting. But they weren't painful and weren't regular at all. However before they were going to send us back to our room they wanted to make sure my cervix wasn't changing. Low and behold, I was already dilated to 3 cm and I wasn't even having painful labor yet. Things happened very quickly from there. The specialist came and explained that she felt it was best to deliver before things progress even further. She assured me that you were far enough along and had already had 2 cycles of steroids for your lungs so you would have minimal complications. The nurse started an IV and started pumping fluids and magnesium (to help prevent cerebral palsy in you). Then the anesthesiologist came in and asked his usual questions. Then they gave scrubs for your dad to change into and he gave me a blessing before we were wheeled off to the OR for the C-Section.The whole time things were happening I felt completely calm, I know it was a blessing because I had stressed about your delivery to the point of tears everyday, but I knew you were going to be okay. 

I sat on the Operating table, the anasthesiologist gave me the spinal block, they hung the drapes, invited your Dad to come sit by me, and then it all begun. Withing a couple of minutes, I heard a couple little cries from you before you were whisked off to the NICU. It was the most beautiful sound. My biggest fear was not hearing you cry, that your lungs wouldn't be strong enough to cry. Your Dad and I started to cry. We were parents and we were so happy that you had made is safely. I didn't get a chance to see you. Finally, they let your dad back to see you and take pictures while I was being put back together. You were the most beautiful baby I had ever seen. I was not expecting all that blonde hair of yours but now I can't imagine you with anything else. 

Once I was in my L&D room I sat and kept asking the nurse when I could go to the NICU. I just wanted to see my baby. After about an hour in wheeled the Life Flight team. They had decided to transfer you to Primary Children's. There you were in the incubator, tinier and more beautiful in person. I

sat looking at you, you just slept contently squeezing on my finger with your tiny little hand, while your dad had his arms around me. I will forever remember this tender moment. It was the first time we got to be together as a family. The words of a poem my dear friend Cami shared came to my mind...

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "This one will one day need extra care and needs," I still would have chosen you.

If He had told me, "This soul will make your heart bleed," I still would have chosen you.

If He had told me, "This soul will make you question the depth of your faith," I still would have chosen you.

If He had told me, "This soul will make tears flow from your eyes that could fill a river," I still would have chosen you.

If He had told me, "This soul may one day make you witness overbearing suffering," I still would have chosen you.

If He had told me, "All that you know to be normal will drastically change," I still would have chosen you.

Of course, even though I would have chosen you, I know it was God who chose me for you.

(By Terri Banish)

Emma your Dad and I love you. Everyday our love for you grows and we can't imagine we could possibly love you more but we do! You have the sweetest spirit and funnest little personality. We can't wait to see what wonderful things you do with your life. We are grateful we can be your parents and that one month ago today you changed our lives for the better. 

                                                               All my love and more,                                                                                         

                                                                                           Mom

Dear Emma, let me tell you about Colorado...

Dear Emma,

First off you may notice that you are no longer just baby girl, but we have decided that you are an Emma. I hope you like it, because if not it will be too late. So much has happened this past month and I have not been good about keeping track of all of it. At this very moment you are sitting in the hospital with your mom, but that is a story for a later time. I will just say for now, that you and mom and healthy and your not gonna be born for some time still.  Let me go back to the day of surgery and tell you about your first experience in Colorado.

2/27/14

Your mom went into surgery this morning. Last night we were nervous as could be, but when we woke up this morning we were calm and at peace. We knew that everything was going to be alright. When we got to the hospital they had to do a ton of preliminary stuff. One of the things they did was an ultrasound to make sure they knew where they would make the incision on the uterus. When they first hooked up the ultrasound we were amazed that you had wiggled your way around to a head down position. Crazy enough you had moved into such a position that was actually perfect for the procedure. The doctor commented that it was a great spot, but unlikely that you would stay there for the surgery. You must be stubborn like your dad, because you stayed just like that until the surgery and it helped the doctors out tremendously.


I was able to sit with your mom while they started her epidural and got all of the preliminary medications dished out. After that she was off to surgery. Having to let you and your mom roll away was extremely hard. My whole life was in the hands of those doctors.

The whole surgery took about 3 hours. The nurse Tiffany came in every so often to give me updates. The surgery consisted of making an incision from hip to hip on your mom. They also cut her abdominal fascia to loosen things up. Then they tilted out Mom's uterus and made an incision on the fundus, which is at the top. They use a special knife, stapler and contraption so that the incisions are bloodless and the amniotic fluid doesn't leak out. The whole myelomeningocele repair on you only took 20 minutes! These doctors are incredible. They said they were able to use your own skin to seal the legion so it should leave a smaller scar. I hope the girl in you can appreciate that. They were able to give us a few pictures of your legion and the suture. The rest of the time was just stitching things back up and waking up Mom. Dr. Crombleholme was the head neurosurgeon in charge and Dr. Handler was the pediatric neurosurgeon that worked magic on your back. We found out later that Dr. Berrent was the doctor in charge of holding your butt so that you wouldn't float away during the procedure. These are the best doctors I have ever worked with, and as I continue you will hopefully see how much they cared about you and your mom.

Open Myelomeningocele legion

After Repair

After the surgery Mom was given an epidural drip and placed on a magnesium drip. Let me tell you about magnesium. It was spawned in the darkest deepest pit of Mordor...not its not that bad, but it makes you feel like you've been hit by a train. Your mom was so brave and did so well. When they called me back to see her in the recovery room the first thing out of her lips was, "Is Emma okay?". As soon as I told her you were great she had a huge smile across her face. She didn't care about the pain or herself one bit. She was only worried about her little girl. You have superwoman for a mom.

It was a long night of nurses coming in and out. They were constantly checking on your and changing the IV drip. Mom was exhausted but couldn't get much sleep, but we made it through surgery and we were happy about that.

2/28/14

Another day of magnesium for Mom. It is nasty stuff. She is a little more coherent today, but still very out of it. She was able to sleep most of the day luckily. One of the specialists, Dr. Galan was so sweet this morning. Apparently he woke up in the middle of the night and couldn't sleep. He was worried about us and wanted to make sure we were doing ok. He called the nurses desk and asked them to check on us and see how we were doing. He also came into the hospital later that day to check on us. That is a great doctor right there.

We got to see an ultrasound of you today and you look great! your legion was sutured up nicely and your mom looks great too. No complications thus far. We are just waiting for them to take Mom off magnesium. We are so happy that everything is going good so far. There are so many complications that can come from this surgery, but we are so blessed.

Unfortunately I have to end this post, because I am still trying to get caught up in school, but I want you to know what a miracle you are and how many people have fallen in love with you. Even these doctors and nurses at Colorado just love you to death. Please stay put in your mom for just a little bit longer. I love you Emma.

Dad

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

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