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