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

Dear Sydney,
Just a quick update before we go to bed. You are doing so well. You are hooked up to more tubes and cords imaginable but you are hanging in there. We are so thankful for the incredible amounts of faith that was shown in our behalf. Thank you, thank you, thank you.

Tomorrow they should be able to remove the breathing tube. Woo hoo! We are hoping that we can hold you tomorrow too! All I want to do is hold you and let you know that we are around you but we can't. Your sternum and incision are too fragile right now.

The surgeon said he was surprised you lasted this long. Your hole was a lot bigger than what they originally thought. Heart failure was not far away. We are so grateful your surgery happened when it did.

I promise to write more after we have had some sleep. There is so much I want to tell you. But let me just say this.... we believe in miracles.

Love you forever,
Mom

Dear Sydney,
Well, you are in surgery as we speak. Here in the waiting room there is wi-fi and I need something to pass the time so here I am...typing on the blog. I didn't think I was going to be able to get on the internet so I had asked my sister, Mandi, to update the blog for me. I was happy to find out that I could use my computer...it helps keep my mind busy.

They just informed me that the incision has been made and all is well. We'll get another update at 10 am.

This morning we arrived at PCMC at 6:00 this morning. We waited in the waiting room for about twenty minutes until they called us back. They weighed you, measured you, listened to your heart, all the fun stuff. Then they gave you these sweet little scrubs to wear while you were in surgery. I hope we get to take them home. It would be a good little keep-sake. After that we met the surgeon. His name is Dr. Caza. What an impressive man! He saw that I was crying and he sat down by me, put his hands on my knees, and told me that you were going to be ok. He took us through the whole process of what he was going to do and how he was going to do it. I'll share those details with you later. Then we met with the anesthesiologist (I have no idea how to spell that word) who explained to us what he is going to do during the entire surgery. He told us about each tube that he will put in you and what type of anesthesia he will be using. He then walked us down the hall and had us say our goodbyes. We then placed you in his arms and you walked away.

Dad and I walked down the hall after you left and cried for a few minutes. It was hard to let you go but it was what needed to happen.

We just got another update. You are now hooked up to the heart-lung machine and the surgeon has began to patch up you heart. You are still doing well.

Grandpa Moon found us here in the waiting room so he is hanging out with us. Grandpa Hessing is not to far away either. He is almost here to come and wait with us too.

Here are some pictures of you. The ones where you are just in your diaper were taken last night as some "before" pictures. In a few weeks I will take some "after" shots. The other pictures are of you in your cute little scrubs. I love them.

So many people are praying for you today. I can feel it. I will be sure to write more as the days go on.











I love my little girl.
Love, Mom

Dear Sydney,



You are continuing to feel better and better. Which makes us feel better too. We were so worried. Tomorrow kicks-off the start of your big week. Just typing those words made my stomach turn. We are going to drive as far as Twin Falls tomorrow night and stay with my grandma just to break up the trip a little bit. That way it won't feel quite so long. Then Monday morning we'll leave in time to get you to PCMC for your Pre-op. At this Pre-op they will perform a physical, do blood work, and a chest x-ray. Thankfully we don't have to starve you this time! But unfortunately we won't be able to feed you Monday night because you can't have anything in your stomach for the surgrey.

You are a sweet girl with a beautiful, contagious, radiant smile. I am so excited to have a little girl who I can't keep up with. I am excited for when you have so much energy I am completely exhausted by the end of the day. I can't wait for you to give us a run for our money. I want you to start rolling, to reach for things, to be able to hold your head up better, and to be able to eat more than 3 ounces without getting tired. It is so easy to take our good health for granted. We don't realize how blessed we are to have healthy bodies until we don't have it anymore. It is definitely something to be grateful for.

So many prayers are with you this week Sydney. There is so much support- more than what we realize. "Never let your praying knees get lazy."

All my love,
Mom

Dear Sydney,
We took you to your new pediatrician today. His name is Dr. Roy. The reason why your Dad liked him was because he went to medical school at University of Washington. What made me like him was that he did his residency at PCMC. Then we both really liked him when we met him. We have been blessed with such wonderful doctors.

Anyways, he checked you out and listened to your lungs, looked at your ears, felt your organs...you know...the works. You don't have a fever! You don't have an ear infection! The mucus hasn't gone to your lungs! So basically you just have a mild cold. He said that he didn't think they would cancel your surgery over this because it isn't that bad. Phew! What a sigh of relief! We feel so blessed to know that you'll most likely be able to have this surgery on tuesday. That is, of course, if you don't get any worse. It seems today that you are getting better. You can actually lay on your back without crying because you can't breathe and you sleep SO MUCH BETTER! Thank heavens!

I forgot to mention that while you were at PCMC earlier this week they weighed you and you came in at 10 lbs! This means that you gained 3 oz. throughout the past week. Good girl.

We are so grateful that you seem to be feeling a little better. We are just as grateful to those of you who have been praying for our little girl. We love her so much.

We can't wait for you to be 100% healthy- heart and all! We love you little Syd!
Love, Mom

Dear Sydney,
The exact thing that we have been trying to avoid these past few months has happened. Two mornings ago you woke up with a stuffy nose. I talked to the cardiologist about it and she said that as long as it is only a stuffy nose then they will go ahead with surgery. If the stuffy nose turns into something else, however, then I need to call her back and tell her. Sore throat, fever, or cough are all things that we are hoping to avoid. Today, I am thinking that you have an ear infection. First thing in the morning I am calling your pediatrician to get you into the dr and have them check you out.

With your surgery only being 5 days away I can't help but obsessively pray that this goes away before monday. Monday is when they do the blood tests to check your white blood cell count to make sure you are good and healthy. The last thing we want is for them to cancel the surgery. We are so close! If they were to cancel it, they would re-schedule the surgery for 3 weeks later.

Your health is more important to me than anything so if we need to push it back- that's ok. But we have prepared ourselves mentally for this to happen on Tuesday and I think it just might send me to the looney bin if it doesn't. But then again...I think this whole thing has already sent me to the looney bin so maybe its too late.

You don't sleep. We were awake with you for about 5 hours last night. We are exhausted and so are you. We can't lay you on your back or else you cry because it's hard to breathe so that means we either have to prop you up with pillows or just hold you. It is so hard to watch you struggle even more than you already do.

All those readers out there- I know we have asked a lot from you. But, if you could just add to your prayers a plead for Sydney's good health. Prayers work. He is listening. We are so grateful for you and your faith.

If you only knew how many people watch over you, Sydney. You are loved. Especially by me.

Love, Mom

Dear Sydney,
As you get older and learn how to express how you feel you will learn that there is a fault in the English language. The problem with our language is this: we do not have words that can correctly describe the deepest and most heartfelt emotions. So when I say that "words cannot describe" how I feel...I truly mean it. Yesterday was one of those days where there are no possible words that can describe what an incredible experience we had at PCMC. I am going to do my best to describe it but just know that however wonderful it may sound...it was actually 100 times better than that.

It all started at 3:30 that Tuesday morning. I had set my alarm clock to wake you up and feed you at that time because you had to be hungry to eat again at 7 a.m. (the dr. said you couldn't have formula past 7 am). So we fed you at 3:30 and you ate the whole thing. Then, your Dad set his alarm clock to wake us up at 4:45 so we could begin to get us out the door. We got the car packed while you slept and then we put you in the car and were out the door by 5:30 am. You slept until about 6:45 and then, like magic, you woke up and ate your usual 3 oz and then another 1/2 oz. You never do that! After you ate you went back to sleep and slept until about 10:15. We then fed you pedialyte until 11 am rolled around. Your tummy was full...at least for now.

We pulled into the hospital around 11:30. We still had a half hour to kill until we needed to check in so we decided we would give ourselves a tour of PCMC. Walking up to the main entrance I thought to myself, I can't believe this is us. I can't believe we have to do this. We came through the doors and the minute we step foot on the hospital floor, a hush came over me and your Dad. The only way I know how to describe it is telling you that it was as if we were stepping on holy ground. Dad and I commented later that we both felt like we were walking by unseen gaurdian angels when we came through the doors. It was powerful. The feeling was peaceful. I was emotional. We were both so grateful. You were going to be ok.

The time came to check-in. I was afraid that at this point in the day you were going to be screaming out of starvation but no, you were smiling and calm. We were both so grateful. The nurses were incredible. Before the test started they went through and explained what each cord was for, what the machines did, what the numbers on the machine meant, what the nurses themselves were going to do, etc. It was so wonderful. You were even given a blanket that was yours to keep! It is a fleece blanket that is green and pink with dogs on it. While they were putting the IV in you, you smiled. All you did was give a little squeek and then you were fine. What a tough girl you are. The sedation only made you relax. You never actually fell asleep which is exactly what they wanted. It was easier on us too.

The test took about an hour and we got to sit in on the whole thing and watch. The test was called an Echocardiogram. AKA an "Echo". All an echo is is an ultrasound of the heart. They take picture after picture after picture of every nook and cranny of your heart.

Afterwards the nurse,Paige, wrapped you up in your new blanket and she picked you up and held you so tight. She always commented on what a sweet girl you were and how well you behaved. She held you for a while. She gave you so much love. Then we set you on your bed and wheeled you over to the recovery room while we waited for you to wake up from your sedation. Once you were awake they wanted you to drink 3-4 oz of sugar water and then we could go. Here is a picture of the 3 of us while we were in the recovery room with you.







You are such a fighter! The Cardiologist called back with the results from the test and we learned something new. They discovered 2 other holes in your heart other than the one we already knew about. When they told me that, my heart sank. But before I had time to be too sad about it Dr. Judd told me that the holes were small enough that they wouldn't affect you. These 2 holes will close on their own. And even if they didn't close she would still have no problems because of them. The other hole, the one that is causing all this trouble, has not begun to close so the surgery is still going to happen.

We love PCMC. The feeling there was incredible. Seeing the other children there is quite emotional but also very tender. The parents walking by you give you encouraging smiles because they are going through the same thing we are. Its like everyone there depends on eachother for something positive...even if its just a smile.

Our constant prayers had been answered as we anticipated this day. I couldn't have asked for a better experience. I'm glad we have a better idea of what to expect for next week. It puts our fears at ease. We love you more than words can describe.

Love, Mom

Dear Sydney,
The time to your surgery is getting closer. I think yesterday was the first day that I started to get that nervous feeling in my stomach when I think about it. It used to feel like the surgery was so far away so I wouldn't get too worked up about it but now I am realizing that it is next week. And that realization has caused a great pit to make itself at home inside my stomach.

You are doing well. The only thing that has gotten worse lately is your congestion. When you sleep it sounds like you have a bunch of gunk in your lungs. It would be easy to mistake your breathing for snoring but when you really listen, you can tell that it is congestion. It is very sad to hear but in a little over a week's time- it will all be better.

We leave early tuesday morning and drive down to Utah. We have to be at the hospital at noon. We'll come back to Boise the next day. If I don't write a post on Tuesday, that is why. I'll be sure to write as soon as I am at a computer to let you know how you did.

You are asleep in your Dad's arms right now. It is very sweet. I hope you sleep better tonight than you did last night!

I love you...even if you don't always allow us to sleep at nights.
Love, Mom