Dear Sydney,

A little update for you. You went to the pediatrician on Tuesday and here are your stats:

Weight: 16 lbs. 7 oz. (45 percentile)

Height: 26 inches (40 percentile)

Head: 44 1/2 cm. (80 percentile)

You are getting bigger and so is your head! The dr.'s always plot the progress you've made (as far as weight and growth is concerned) on a chart. Most baby's curve looks like a steady and gradual upward-slanted line. Yours, however, is a straight line going from top to bottom. I would sure hope so considering where you used to be and where you are now!

I followed my friend's lead (Alisha Balukoff) and made you a dress. Thanks Alisha for the inspiration! It's not all the way finished yet because I still have to hem the bottom but here you are looking so cute!

The other night your Aunt Heather was holding you. She took your tights off your legs and put them on your head. I had to snap a picture. As Sam would say, "Heather is so embarrassing!"

Your cousins came in town for Thanksgiving. Sara, Luke, and Ashley. Now that they live much closer to Idaho they were able to make the drive for the holiday. Sara loves you and can't seem to get enough of you. You two could play all day if we had the time for it. She loves to get you to laugh and pant like a dog. Panting is everyone's favorite trick that you have. I will admit, it's pretty funny.

You are so fun to have around. You keep us laughing. We love you.

Love, Mom

Dear Sydney,
After much deliberation...I am not going to make your blog private. For various reasons I want to leave it open for any reader. So, there you have it. Any reader is still welcome to read!



Your first halloween was a hit! Though you didn't do any trick-or-treating we still had fun. You were a witch! And a cute witch at that! As you can see from your 6 month picture at the right you couldn't possibly be any cuter. You are beginning to learn all sorts of new tricks these days.
Standing on your own (as long as there is a wall behind you to hold you up.)
Sitting up all by yourself.

Eating oatmeal, sweet potatoes, applesauce, pear sauce.
I have learned that you HATE pureed bananas. You must be my daughter because I don't like them either. :)

You hate to be on your tummy.
I think you have only rolled about 3 times in your life. So basically, you aren't in too big of a hurry to become mobile which is fine with me!

You now weigh 15 lbs! Yes, there was a time when I thought we'd never see the day (or at least I thought it was going to be a very LONG ways away.) I also made you a shirt. I have been wanting to do it for a while and now that I have all this spare time I thought, why not? Here you are modeling your new little t-shirt:




Yep. No one can mess with your heart. Especially boys. :) Because if they do, I think there would be a lot of people who would be willing to do some serious damage. Ha ha. I had a lady tell me at the store the other day that I needed to teach you how to use a bat so you could keep all the boys away when you get older. I don't think it's a bad idea.



I love you, little girl.
Love, Mom

Going Private!

Now that most people know about this blog I feel like it's ok for me to go private with it. So get me your email addresses by wednesday! Thanks!

Dear Sydney,
I am having a moment today and I decided that I just needed to sit down and write about it. Every now and then, I think back on how hard life was for me, you, and Dad before your surgery. And when I think about it- I get a little teary eyed.

There is something that I have been wanting to share with you but I have been debating whether or not to write it on the blog. It is something that is very personal to me and I hold it very near to my heart. But today I decided I would write about it.

I would consider the night before your surgery to be my darkest hour of my life. I cannot think of another time when I have been so afraid. It was almost as if I was afraid to breathe because I knew that every breath brought us closer to your surgery. There was a constant prayer in my heart. I knew that God would not give us any trial that we cannot handle. That was something that I had to remind myself of repeatedly. I can remember looking at you as I was putting your pajamas on that night and wondering if you would be around for me to do the same the next night. (Gosh just thinking about this again is making me sob.)I prayed and prayed that I would be able to hold you again. In the past I had received small confirmations and feelings here and there that told me you would live. I clung to those confirmations with all I had. But being the non-perfect person that I am...one feeling or whisper of the spirit was not enough for me. It wasn't long before I would ask God to tell me again that you would be ok. The night before your surgery was no exception to my imperfections. I needed to know, again, that you were going to make it through this daunting surgery because I felt like I was suffocating in fear.

I have an older brother who passed away at the tender age of 7 months. His diagnosis was SIDS (sudden infant death syndrome). It is because of him that I believe in angels. I know that God's angels are sent to watch over and care for the ones who still reside here on earth. I have felt him close to me many of times and I know that he watches over his family.

Well, that night we went to bed. You slept with us because I couldn't stand to have you away from me. When I woke up my thoughts and heart immediately went straight to a prayer. I sat up to get out of bed but something stopped me. I then felt as though heavenly, angelic arms were being wrapped around my body. Nothing has felt so real to me and nothing spoke to my heart the way it did at that moment. I felt warm and comforted. I felt my brother. From that time on, I knew, I absolutely knew, that you would be ok. You were going to make it. And I would hold you again. I would put your pajamas on you again. I would see your smile, hear your laugh, and watch you grow. That was all I needed. I could now go through the rest of the day and know you were going to come out fighting.

Now some of you may call me crazy and say that these types of experiences are not possible but I am here to tell you that they are. God hears us. He loves his little children and he loves his bigger children too! :) God only gives us trials to make us stronger and to bring us closer to Him.

I look back on that experience with gratitude because it has taught me a great amount. Prayers are heard and answered.

All my love,
Mom

Dear Sydney,
It has been so long since I last wrote on your blog. But now that your surgery is over, my thoughts and emotions aren't running around like crazy so writing has been put on the back burner...which I am sad about. I will do better.

It has now been 7 weeks since your surgery. Every day I am grateful that your surgery is in the past and no longer in the future. In our family prayers every night we always express our gratitude for your good health and your new heart. How lucky we are.

You went to the Dr. today for your 4 month check-up. Yes, yes, I know...you are 5 1/2months old. But there was a method to the madness. The cardiologist said that you weren't allowed to have any immunizations for 6 weeks before and after your surgery so we had to delay your 4 month check-up because you were supposed to get a few immunizations. Anyways...you are now in the 25th percentile for weight (which is incredible because before your surgery you were only in the 3rd percentile), the 25 percentile for height, and 75th percentile for your head! Ha ha...I thought your head was growing. It just goes to prove that it actually was! But it's ok Syd. Everyone on my side of the family has a big head too including me. So don't worry. People with big heads turn out all right. :) Oh and I failed to mention that you now weigh 13 lbs. 9 oz. Woo hoo!

I wish I had pictures to show of you. But the battery to the camera is dead and the battery charger is still in a box somewhere that I am yet to locate. But don't worry...you're still cute. In fact I think you have gotten cuter since your last photo-op.

Last weekend you spent time in Seattle with the Moon side of the family. We had so much fun. You met your cousin Chyanne for the first time and we discovered that you two have the same feet. Hopefully those feet treat both of you well. You can thank your Dad for those tootsies of yours!

Your sleeping is slowly improving. You probably wake up about every 2 hours now. It's better than every half-hour so we are not complaining. The other morning I woke up to you in our bed. I assumed your Dad put you there. Well- he assumed that I put you there. So really, we're not sure how you got in our bed. We were both so tired neither of us remember what happened that night.We don't even know who fed you in the middle of the night. At least we are all alive and well. Hopefully we won't have anymore of those kinds of nights. Oops.

We love you. You are our joy and bring so much laughter into our lives. I've missed writing to you. I'll do better.

Love always, Mom

Dear Sydney,
Today marks your 4-weeks-ago-you-had-heart-surgery day. 4 weeks! Can you believe it?! Yesterday was your first day off of all your medicines. You have been on medicine for almost your whole life so this is a big moment for us! For a while there, I was feeling like I was running a mini pharmacy right out of my mom's kitchen. It's just good to know that your body is now healthy enough to do things on its own.

Over the weekend we went up to Donnelly, ID and spent some time with the Hessing side of the family. We had so much fun. You had your first 4-wheeler ride which you obviously loved because it was always only a matter of seconds before you fell fast asleep. Maybe your Dad and I need to invest in a 4-wheeler in order to keep you asleep at nights. Ha. Right.







I do have to say, however, that your sleeping habits are getting better. Two nights ago you only woke up twice! We couldn't believe it! Last night wasn't as good but I am thinking that every week will get better and better. This may sound a little odd but I am grateful that I am complaining about how you don't sleep. You used to sleep too much and it was so hard to watch but now you have no interest in sleeping. Your little body just has so much energy now. So, this is a good thing. I just hope you get back into a regular schedule soon.

You rolled over for the very first time on Friday! We were so proud of you. You went from your back to your tummy. The only problem you had was trying to figure out how to get your arm out from underneath you. You haven't rolled since then but I'm sure it will become more and more frequent.

Yesterday afternoon I gave you a bath. After I got you all wrapped up in your towel I set you in your swing while I went upstairs to get your clothes. I turned on the TV to give you something to look at. Star Wars was on. You were captivated. Your Dad and Grandpa Moon would be so proud. :) It didn't take much longer though and you were asleep. You looked too funny to not take a few pictures...





Last night was the Boise State game. We had you all dressed up and you looked so cute! Your Aunt Mollie made you a really cute Boise State hair bow that matched Claire's. So you two were lookin' good with your bald heads and huge bows.





So, there's your update. You are doing so good. We're getting to the point where we can hold you underneath your armpits now. We couldn't do it for a long time because your chest bone was still trying to heal. I am loving that I can treat you like a normal baby more and more everyday.



We love you so much!
Love, Mom

Dear Sydney,
Everyday is a little better. You look a little chunkier. You laugh a little harder. You smile a little bigger. Your scar heals faster. And your muscles get stronger. The Doctors told us we would be amazed with the difference we saw in you after the surgery. I truly believed what they said but I just didn't think I would see THIS MUCH of a difference. So I guess they were right.... I really am amazed.

I've had a few random thoughts going through my mind tonight as I have been thinking about you. I was thinking about what the surgeon told me right before you went into surgery. He said that the type of surgery you were about to have was the same risk-rate of a hernia operation. Whoa! I started thinking- why didn't anyone tell me that before?! Then again, someone very well could have told me that but I probably didn't listen. I was so focused on the fact that my little 3 1/2 month old daughter was going to have open-heart surgery. A lot of people told me not to worry about it but I couldn't help it. You are my daughter. My child. How could I not worry? Now, in hindsight, I can see that everything really was going to be ok but you know...I can't help but worry sometimes.

I wanted to thank my cousin Emily Huber. She and her family have been so sweet to you. Her girls drew you pictures and made you get-well cards. Thank you, Emily, for being so thoughtful. I still have the cards. I will keep them with the rest of her "surgery stuff" as a way to remember the thing that happened. I also wanted to thank my in-laws, mine and Jordan's aunts and uncles, our cousins, our friends, our brothers and sisters, the readers of this blog whom I haven't met, our grandparents, our parents. Please accept this as a personal thank you. To you. There has been an incredible amount of support that has been poured into our family. You were apart of that. So, thank you.

These pictures were taken tonight. The rest of your bandage came off tonight so of course, we had to take pictures. Your scar looks great. I don't ever want you to be self-conscious of your scar. I want you to wear that thing proudly. Not that I am saying you are allowed to wear low-cut shirts... I am just saying that I hope you don't feel like you have to wear a turtle neck every day of your life. :)











You laughed harder than ever today. You used to just giggle or give little chuckles but today it was a full on laugh. Of course, you laughing made us laugh too. I love that you are becoming more interactive with us. It is so much fun. We love you so much it's not even funny even if you do wake us up evey half hour. The cardiologist says that we can't really let you cry right now. We have to let your heart heal. He says in a few weeks we can start re-training you to be on a regular schedule. So until then we all get to hang out together at all times of the night.

Maybe tonight you'll decide to get on a schedule all by yourself? I doubt it. But that is just my positive thinking hoping that it becomes a reality. I love you sweet girl.

Love, Mom

Dear Sydney,
Today is just going to be a post dedicated to pictures. I'll explain them along the way but sometimes pictures do the best explanations. I love you!

The night before surgery:



The morning of surgery:



30 minutes after surgery:





The day after surgery (notice there is no more breathing tube!):





Three days after surgery. These pictures are a little difficult for me to look at:







Five days after surgery...we are going home!:



One week after surgery:





Two weeks after surgery (I think she looks A LOT bigger in these pictures!)Oh and by the way, the scab or band aid that you see below her right lung was where her chest tube was. It helped to drain the fluids away from her lungs after surgery was over.








And there you have it! You are growing by the second! I LOVE IT! But I love you even more.



Love always, Mom

Dear Sydney,
I found the camera! After a long search I finally found it underneath our bed. Let's just say that I don't keep our room as clean as I should! ;) Now that I have pictures to show you I thought I would show you all the ones I had of the people who came to visit you while you were in the hospital. There was quite a handful of people that came that I sadly didn't get pictures of but just know Michael and Laura Graham were there, Cori and Colin Bowler, Jared and Wendy and Brady Christensen, Great Grandma and Grandpa Edwards, Great Grandpa Moon, and Great Uncle Steve were there. Most of these people I didn't get picturse of them with you because I wasn't in the room while they were there. Your Dad had escorted them back to your room and taking a picture wasn't the first thing on his mind! And if I was in the room with some of these peoeple while they were there... I'm sorry. I can honestly say that I just forgot.











So many people love and support you, Sydney. Even if they couldn't make it to come and visit you. I have been overwhelmed as I continue to learn of more and more people that have been praying in our behalf.

You are recovering faster than I expected. You haven't taken any tylenol for the past 36 hours and you are as happy as you were when you were taking tylenol! Although you are a happy girl in the days...nights are a different story. You go to bed around 9 pm and then you stay asleep until around 1 am. After that you are up about every half hour after that. Before your surgery, you only woke up once a night but now that's a different story. I think you got used to having the nurses waking you up all through the night to check your vitals. I'll just say that this isn't our most favorite habit you have developed. But all it takes is one look at that sweet face of yours and somehow it makes it all better that we are up with you at all times of the night. I also think about when I couldn't keep you awake and how hard that was. I was so worried about you. Now it seems as though you have more energy than you know what to do with!

These next two pictures were taken on the day that we left the hospital. One is with our most favorite nurse that you had while you were there. Her name was Brita. I mentioned in an earlier post how great it felt to be leaving. Honestly, I felt spoiled that we got to leave so early. There were families there that had been in the ICU with their children for months. After being in the ICU for 3 days I thought I was going to go crazy. Jordan and I were invited to a lunch during one of the days we were in the ICU with you. The lunch was provided by the hospital for the parents of children who were in intensive care. Through talking with other parents and hearing their stories I realized that our little family was one of the luckier ones. There are literally children at that hospital who are breathing their last breaths and saying goodbye to their families. It is the most heart breaking scene. You don't realize those types of things are happening until you are there to witness it for yourself. I am amazed at the capabilities of the nurses and doctors who work with kids like you every day. They deal with a lot. Emotionally and physically.





We are so blessed. All of us are blessed. We have healthy bodies and have almost no restrictions to what we can or cannot do.

I love you.
Love, Mom

Dear Sydney,
My goal today is to find our camera. I am determined! But until then a post without pictures will have to do.

First on the list, your cousin was born yesterday! Yes- baby Chyanne (I have no idea how Aunt Laura is spelling her name so I could have totally butchered it...sorry!) was born a month early and was nice and healthy! We are so excited for you to have another buddy to cause trouble with.

Next on the list- I wanted to tell you about your surgery and how it all happened. It's a neat story, I think. After the anesthesiologist walked away with you in his arms we went to the waiting room where they told us that our first update would come in about a half-hour when the surgeon actually began to make the incision on your chest. And they were right- about 30 minutes later we received a phone call from the nurse practitioner telling us that the surgeon has started his work. She told us that our second update wouldn't be for about an hour and a half.

So we waited and waited. Soon the time came and in walked the nurse. I could tell by the look on her face that something wasn't quite right and even by the way she started her sentence when talking to us let me know that there was a problem. She told us that Dr. Kaza had gone in and closed your big hole down in the ventricals of your heart by using a patch and he also closed another hole up in the atrium of your heart by using tissue that came from another place in your heart. After he thought he was done, they started your heart up again, took you off the heart-lung machine, and your heart began to beat on its own. They then stuck a camera down your throat that took direct pictures of your heart. There they discovered that there was a leak. The nurse thought that they had found another hole but we later found out that the leak was coming from the patch that was placed down in between the two ventricals. The patch was not stitched up completely and the surgeon was not about to let his job go unfinished. So- all we knew was that the Surgeon was going back in. Which means that they hooked you back up to the heart-lung machine and stopped your heart again. The nurse said we would hear from her again in about an hour.

Twenty minutes passed and I could see the nurse turning into the waiting room. She was coming to talk to us. My heart dropped. Why was she coming so much sooner than what she originally told us? She wasn't supposed to be here for another 40 minutes. Did something go wrong? Our minds started racing. The nurse sat down and said, "He's done." The surgeon had gone back and added a few more stitches to the patch and the leak had been fixed. Your heart was now beating on its own- again and they were in the process of closing your sternum with wires and then your skin with dissolvable stitches.

I felt like I could breathe again. Up until that point my body had been heavy with a weight that I can't even describe. I never realized how heavy it was until it was gone. All I wanted to do at that point was see you. I didn't care how many tubes you had... I just had to see you with my own eyes.

I love that the surgeon had gone back with a camera to check his work. He told us afterwards that he never leaves a job unfinished so he wasn't going to leave you with a leaky patch. Thankfully!

I don't want to bore you to death so I will save you more stories for tomorrow. You and the surgeon were definitely being watched over that day. I know it for a fact. We love you.

Love forever,
Mom

Dear Sydney,
I can't find my camera so I can't post any picture but as soon as I find it- I will put them up. I promise.

Well, lets just jump straight to the good stuff. You are now home from the hospital! You were doing so good that they sent us home on Sunday afternoon. I literally felt a weight lifting off my shoulders as we walked out the hospital doors. You were in the hospital for a total of 5 days- which is great because they originally told us to plan on staying for 7-10 days. You are so strong.

You were sent home on 5 medications. Two of them help you to basically pee out all of the fluids that are still in your lungs. Another one is to keep your blood pressure down. Your heart is used to working exteremly hard and the dr.'s said it will take a while for it it to realize it doesn't have to do so much work anymore. Another one is for the thrush that has decided to camp out on your tongue. Because you were on antibiotics for the first two days in the ICU it caused your body to react in such a way that a fungus-y white stuff started growing in your mouth. You were also sent home with a prescription pain killer but you haven't needed it. You have been using children's tylenol for the past 4 days. I am so amazed that you haven't been wrenching in pain. Instead you smile, kick your legs, try to roll over, and giggle. What a sweet girl you are.

I have noticed dramatic changes in you since your surgery. The first thing everyone notices when they see you is that you have color in your face now. You aren't pale anymore! You have rosy cheeks and a pink tint to the rest of your body! Oh, how I love it! You have so much more energy! Your legs are getting stronger by the day and your naps only last about 15-30 minutes and then you are good to go. (15 minutes is an extremely short nap but hey...at least you aren't sleeping all day!) You used to have a little cough and that is completely gone now. I love it! You used to cough so much that it would make you vomit and since your sugery you haven't vomited once. Wow! Your appetite has sky rocketed! On the drive home you drank 4 bottles in 4 hours. It was amazing! Your Dad and I just kept laughing because we couldn't believe it! Your weight gain has also increased. The day that we left the hospital you clocked in at 10 lbs. Today you went to the pediatrician and you weighed exactly 11 lbs. Whoa! I am so proud of you. I can't wait for you to have rolls going down your thighs and arms. I also love that I can't feel your heart pounding every time I put my hand on your back. You used to work so hard just to be able to breathe and now that's not the case anymore.

Something that I keep thinking about is what the surgeon told us after he finished your surgery. After he was through explaining that the hole in your heart was bigger than expected he said "God must want your heart to be beating because it's still beating." He was surprised that your symptoms weren't worse than what they were. He said that you were in the stages of heart failure. I don't even want to think about where we would be if your surgery was a few weeks further down the road. You obviously have some important work you need to do on this earth, Sydney. I feel so blessed.

Your incision looks good and strong. The surgeon did a perfect job at keeping it in a straight, clean line. It's not a messy scar by any means. The pediatrician took out your stitches from your chest tube today. You didn't even cry. You are proving to me everyday that you have a high pain tolerance. Which is a blessing for all of us. I hate to see you in pain. It is so hard to watch.

You are an example to us all, Sydney. We love you so much. I'll be sure to update you more frequently now that we are home and settled in.

Love always and forever,
Mom

Dear Sydney,
We are still here in the CICU (cardiac intensive care unit). Your breathing tube is out, your catheter is out, the central line that was going through your neck and into your jugular is out, and your arterial line will come out later today. You are making progress. We couldn't be more proud. You were supposed to get out of the CICU today but in your x-ray this morning it showed that you have quite a bit of fluid in the left side of your lungs. For that reason- they are going to keep you for another day in here. Which I am ok with. I like having them watch you so closely. The doctors say that the fluid is nothing to be alarmed about. This is common after a surgery like this. There was a lot of swelling after the surgery so now your body is trying to drain it all out. That is where the fluid in your lungs is coming from. If it doesn't start to drain on its own then they will just have to insert a small drainage tube right below your left lung. I hope we don't have to do that.

You haven't smiled yet. I keep waiting for that to happen. But I did get to hold you for the first time last night. I couldn't help but let a few tears fall. I was so grateful to have you back in my arms and that you are on the road to healing.

Being here makes me grateful for your good health. There are so many families here that are dealing with things that no parent should even have to think about. I truly feel blessed.







You are a fighter. I am amazed by the great progress you are making. We love you.
Love, Mom