our 2 week check-up

Yesterday (Wednesday), Derek, Gage & I headed back up to Primary Childrens for Gage's 2 week check-up. It's already been 2 weeks, thats crazy! We just got a chest x-ray and EKG this time, no echo. I just had to post a picture of his chest x-ray though cuz I think it is INSANE!! Check out those wires holding his ribcage closed! Pretty cool huh! They are going to be there all his life, so his x-rays are always going to be extra cool! And we joke about taking him to the airport, hopefully the wires don't make the alarms go off! Maybe his scar will make them believe us or something... But Derek and I were excited cuz the x-ray tech was way nice to print us off pictures, we were so excited to see them since we were told we would be able to see the wires! Oh yeah, and check out the chub around his chin and arms, I love it! Ha! Anyways... away from the x-ray!
... The appointment went PERFECT! Gage weighed in at 14 pounds 13 ounces, so he is gaining back the weight he lost during surgery, even though he didn't loose much. The doctor came in and talked to us, telling us that his x-ray looks wonderful, his heart is the perfect size and everything looks exactly like they wanted it to. They also said that the EKG showed exactly what they expect to see after someone has just gone through heart surgery. We got to drop the Aldactone medication yesterday, and then we will have no more Lasix meds after one more dose in the morning! And Gage hasn't had any pain meds (which was only Tylenol anyways...) for a few days, so he is going to be sooo excited when mom stops squeezing the meds into his mouth completely! And another great thing... we got to drop the oxygen during the day and he just has to be on it at night!
I was gonna take some pictures of Gage's scar, since they took the little butterfly bandages off yesterday, but he is snoozing and I'm not willing to wake him up for a picture! :) So I will show them another time. I can't believe how good it looks already. Well, that about covers the whole appointment and we were really excited about how everything turned out. We don't have to go back for another 3 months! That is the longest we have EVER had between appointments so its gonna be weird not taking the long drive for a while! But that will be nice when school starts back up and everything...
Gage and I drove down to St. George this afternoon to stay with my parents for the night. Gage has been having a blast showing off his new-found energy and neverending smiles to everyone! He just LOVES all the attention and soaks it all in! My Grandma & Grandpa are coming into town tomorrow so we're excited to see them, since we don't get to very often.
That is our excitment for the past few days, I'm sure we will have more coming soon! I just can't wait for Christmas, it is going to be the best EVER to have Gage here to spend it with us!

Happy 1/2 Birthday Toadster!

Our little guy is 6 months old (well.. yesterday)!! I can't even believe it, it sure has flown by. During these 6 months, Derek & I have learned more than we ever thought possible from someone so small.
You are the greatest blessing we ever could have asked for, Gage. We are so happy that, after all you have been through, we still get to have you here with us. You never seize to amaze us. We love you Gage-Myster!

fiRsT SnOW

Well... at least for Gage! It has snowed a couple times this year, but we have been out of town every time, so today Gage got to see it for the first time! There's like 5 or more inches right now, but it is still going strong so I'm sure we'll be waking up to a good amount!

Gage LOVED the snow!!

Yeah, okay, not really! But at first he did!

It was a cold, snowy day outside so we just played lots inside! It was hard to get Gage's attention for the picture because he was glued to "The Grinch"!

sO GueSS wHAt ...

We are home!!

This morning the doctors came in, checked him out, and said, "k, are you ready to go home?" Of course!! Discharge went really quick, I went and grabbed his prescriptions, and we were off! Gage did such a good job in the car, slept the whole way home! He didn't act miserable at all, and even now at home he acts like he is feeling really good. I'm sure it feels good to get out of that bed more and get back to what he is used to.
Thanks so much to everyone for all the support through this journey we have been through this past week. We are so thankful everything went SO well and especially to be back home! We love you all, and you, Gage, are a CHAMP!!

wHAt a WoNDerFuL dAY!!

And I don't need to explain why!! Chest tubes and pace-maker wires went out this morning, yay yay!! Gage also got another synagis shot, which keeps him protected from RSV. We were VERY lucky to qualify for these shots because they come with a big price tag... somewhere between $1,500 and $2,000 PER SHOT, depending on weight, AND it is a monthly shot, not just a one time thing! Gage actually did really really well with this one compared to a month ago. He barely let out a wimper and they were done. I'm sure it helped that his daddy got to snuggle him up after it was done.
It felt so good to be able to hold Gage in our arms again today, but I must admit, a bit awkward! I was so afraid of hurting his chest, and you could tell it was hard for him to get comfortable. At least when I hold him, but Derek has been able to figure out how to hold him just right and he LOVES it. In the picture with Derek and Gage, you can kinda see on Gage's neck there is a sore there. He had a IV/monitor thing (hard to explain) but it monitored his blood pressure during surgery. Yesterday, Derek checked it out and he must have reacted to the tape and stuff because there is a yucky sore there. We have just been putting this stuff, kinda like nu-skin, but without the sting, on it to help it heal and not stick to itself. Its kinda hard though cuz of his rolley polley neck! But it hasn't been spreading and is starting to look a little better, so we are happy about that.

Our Little Hero - a little graphic, sorry...

I'm sorry if this picture seems a little graphic to anyone, I just wanted so show what a trooper this little guys is!! A little explaination of what they are to those who... luckily... do not know! The tiny white, black, and green cords stuck on to the little circles are just monitors to help read his heart beats and his breaths per minute. The big long line down his chest... well, my guess is that you can figure that one out!! There is a white cord leading to his diaper, that is the last chest tube he has in. It really doesn't go into his diaper, we just have it tucked in the velcro to make it so there is less grabbing options. Then there are 2 glass things.. those have pace-maker wires in them. The glass tubes just keep them all bunched up so that it is not so tempting for Gage to grab at! Our nurse just told us she doesn't think it is fair we still have that darn chest tube in so she made sure that we are first on the list early in the morning. They will come in and take the chest tube and the pace-maker wires out... then we can HOLD HIM!! Derek already called he gets to be first, but you better believe I will be anxiously waiting to be second!

Gage is such a sweetheart, he has been sneeking little grins at us this evening and we love it! Mostly he has done it for Gramma Jill and Papa Jo but Derek and I have been able to steal a few as well! Oh, he is my hero. Our sweet nurse, Amy, says that she thinks he should be the poster child for all little ones who come through here. This morning, she said, "everyone is talking about him as the baby who doesn't cry when he gets poked!" It was because they were trying (and failing... again) to get blood from him this morning and he would barely fuss! Everyone is so impressed by him, especially his mommy and daddy. We love you baby Gage!!

2 down...

We are now 2 chest tubes down, only one to go! Gage had liquid around his heart and lungs because of the surgery, so the surgeon put 3 chest tubes in for him so that it could drain out. Yesterday morning, the fluid coming out was the color they wanted it to be, and the middle and left side were draining very little. The right, on the other hand, was draining a pretty decent amount until about 1:00 in the morning. Since then, I have noticed very little. The doctor said that she will check back this afternoon to see how it is doing and hopefully remove it this afternoon or tomorrow morning. I can't wait! Its exciting to have 2 out, but all 3 will be AWESOME... then I can hold and love on him! He is having a hard time keeping food down this morning, but the doctor didn't seem concerned at all about it, she is just going to get him a little medicine to help calm his tummy. 3 doctors this morning came in and each listened to his heart. They said it sounds perfectly clean... which I sure would hope for after he has gone through all of this! He also had a chest x-ray and everything looked great.

Yes, sleep did not happen last night. I know the nurses make sure everything is good on the monitors and everything, but I was more concerned about him being comfortable and content (I was going to say happy, but at this point, I don't expect that of him!). We slept from 1:00 until about 4:00... but after that a good sleep just didn't seem possible... at least for me. He is sleeping well right now because they gave him more morphine when the removed the chest tubes and stitched him up. He is now going to be taken down and they will do another echo to make sure things are looking good. I think I will try to get a nap in while they do that!

So, I wanted to do just a quick post, but I decided I still had to add a picture... especially for Derek because he said he keeps checking the blog every ten minutes or so just hoping to see what Gage is doing now! Well, hopefully Derek is getting some sleep now... but this picture might seem confusing... until I explain. You see, Gage found the monitor. We couldn't get ANYTHING to take his attention away from it. He was completely facinated by it, we were afraid he was going to make his neck sore or get a headache because of the funny way he was positioned so he could look at it! Finally, I swear like a half hour later, he fell asleep and when he woke up he had forgotten about it.

The true reason for this post - THANK YOU. Thank you everyone that has prayed for us, fasted for us, thought of us, kept up on the blog with us, commented to us, called us, text us, and made this experience so positive and successful. Prayer works. We are witnesses and that is something I could not and would not ever deny. We love you all. I honestly cannot put into words how lucky we feel to have people from the east to the west coast, even in the Philippines praying and fasting in our behalf. Thank you again.

Just some pictures...

Gage is doing really well eating, he downed 90 cc's like it was nothing, then another 60 about 2 hours later! He was a hungry boy.
There isn't really any new news to share, just letting him rest and try to get feeling better! Unfortunately, Derek went to donate blood here at the hospital and they wouldn't let him because he had a fever over 101 degrees. He had no clue and wasn't feeling sick, but he went back to where we are staying to get better. Hopefully, after taking some medicine, the fever will go away so he can come and see Gage again. I think it is driving him crazy to have to be gone.

Our morning...

We got here this morning and Gage looks SOOO incredibly good. We were so happy. The nurses said that in the night he didn't want to eat a lot, but this morning he ate about 60 cc's really well, so she was pleased with that. I also was really happy that Derek and I were able to sleep really well. I feel that with all the prayers and the comfort of knowing he has had WONDERFUL nurses, I was able to sleep like a rock. I feel like that was very important not only for myself, but also for Gage because I need to be alert and able to help him get feeling better. So this morning we got here and they had removed quite a bit of his tubes and things. My parents were here to watch and said that he was pretty unhappy with it because it didn't feel good, since they had stitched them to keep them in place. The nurse also gave him some morphine to help with any pain. It was cute, she was putting a dieretic supplement from a seringe into his mouth and he grabbed ahold of it when she was about half way through and "helped" her get the rest in. Then he decided he wanted to keep it so she let him hold it for a couple of minutes, until he fell back asleep and dropped it. And now for the HUGE news...

Off of the IV's... unhooked from any machines... all loaded up...

... down the hall...

... and IN OUR OWN ROOM!!! Gage did SOOO well last night, they were able to move him upstairs to our very own room at about 11:00 this morning. Not even 24 hours in the ICU. They also went from 1/2 liter of oxygen to 1/4 liter of oxygen. He has wonderful nurses named Stephanie and Ashley. We already have moved all in, with pictures of Gage up on the wall and everything! It is so nice because all 4 of us (Derek, Mom, Dad, and I) are able to be in here together with him. In the CICU, only 2 were allowed at a time. We also weren't able to have cell phones in there because some cell phones interfere with the life support/vent. This room has plenty of space and comfy seats and everything. He is sleeping now, all the meds are keeping him tired and he had a long day yesterday!!

Vent-less!

No more vent!! I was soooo excited when I went back at 8:00! They took it off at about 7:15 pm so he will be able to eat at about 1:00 am. They started off with 1 liter of oxygen, and have decreased it to 1/2 liter, and his sats are still staying high! I know its a quick update but we are gonna go see him again, gotta go show Derek!! So happy

I got to kiss him! :)

All is well!! Gage is doing wonderfully and so am I! Sorry I haven't posted for so long, its because we have been able to spend time with Gage so we have been taking advantage!! Right now, we cannot be in the CICU because they are doing shift changes, but other than that we get to go spend time with him. It has been great, and last we were in there they were working on weaning him from the ventilator. Maybe when we go in next it will be gone! But they still won't be able to feed him from a bottle or anything for 6 hours after the vent is taken off. We won't be able to hold him for a while still, but we still can love and kiss on him. I'll update later.

wHY NoW!??

Yeah, about 15 minutes ago, we were happily sitting here and low and behold... the power goes out. NOW?! Of course, they have the O.R. and PICU and everything on complete backup power, but I did not love the feeling in my stomach. Even though I know that everything is backed up, I am so happy the surgery had been completed already. Acutally, I just think that I am happy PERIOD that they surgery has been completed already!
Dr. Birch just came and talked with us, telling us about the same thing as Dr. Mart had said previously. The nurses and doctors were so great to keep us updated as things went. Only a little longer to see him and touch him and kiss my sweet little boy!!!

Alright, another update! Dr. Mart, our cardiologist, just came and talked to us. He said they just did an echo of the heart and everything looks GREAT!!! There was actually 2 ASD's that were about the size as a hair, so those were just stitched up. The VSD was patched up great, and they checked about the cleft and everything looked good, so nothing to worry about there. They are closing him up and we will get to see him in about an hour... I CAN'T WAIT to see my little boy. Yay Yay!!!

An update...

Well, its time for an update on how Gage is doing... Today we woke up at about 5:30 to get all ready so we would be at the hospital on time. Gage got a taste of what it is like when he wakes us up when we want to still sleep! He kept kinda opening his eyes and looking at us like we were crazy!
When we got to the hospital, we checked in and they checked his vitals and everything again. The surgeon, Dr. Birch, came in and disgused the surgery and everything. It was kinda weird because we were told Dr. Kaza would be the surgeon, which was who we had requested. After Dr. Birch talked to us, the nurse asked if we were okay to sign another consent form with him instead. We were kinda uneasy about it since we had planned to have Dr. Kaza. The nurse was great because she could see our concern. She actually called Dr. Kaza out of a meeting and asked him to come and talk with us. He was really comforting to talk to. He promised that he would still be on the other side of the bed as the surgery was going on, they just have to have certain Dr.'s names on the paperwork. So, we are happy to know that Kaza will be just as much a part of it as well.
After we got that all straightened out (and got my mind at ease again!) we spoke with the anestesiologist. He explained what he would be doing for his part of the surgery. He was the first to take care of him, where he put him under, then inserted all of the IV's, caths, etc. This was about the first hour to hour and a half of the surgery. After we talked with him, we went to where mom and dad were waiting and picked them up on the way to "the doors." Oh how I did NOT love those doors! Gage was kinda sleeping when we said goodbye, but would give us little looks as we snuggled him. I tried really hard to be so so strong, and I THINK I did okay, but he started crying when I was saying goodbye and that was hard for me. So then they took him away, but just for 4 hours... yay!
We hung out aroung the cafeteria for about an hour, then we went to the waiting room to wait for updates. At about 9:10 they came in and told us that they surgery was now beginning. That means that all the anestesia had been started and things and the incision was being made.
Just a few minutes ago, at 10:35, the nurse came in to talk to me. She said that everything is going really well and that the VDS is almost done being patched up. I'm not sure if the ASD has been closed off yet, and they also were concerned that he might have a cleft in his valve or something like that.. I don't know a lot about that because they only brought that to our attention this morning. But hopefully, since she didn't mention it, it means that everything looked good and there wasn't any problems with it! We'll keep our fingers crossed. So, to finish off what the nurse said, they were just finishing closing the VSD and they would then be taking him off the heart and lung bypass machine. She said she will come and update us again when that is done. She said that should be no later than 11:30 so hopefully I can update again then with some more good news!
I just want to say thank you, again, to everyone for your love, support, and prayers. We are so proud of Gage, he is a trooper and he is going to do great, we just know it.

The Day Before...

Gage was showin' off his "pre-surgery" chest for us! Last night, we drove up to Orem and stayed the night so that we wouldn't have to drive so far this morning. We got to the hospital at 11:00. Gage got a chest x-ray, then we headed upstairs for a history and physical. The last thing we had to do was draw blood. Gage loved staring at the cute nurse that was taking the blood... until she poked him! Then he was MAD!! She couldn't get to the veins she was wanting (thanks to the extra chub on Gage's arm and hand!) so another nurse had to come in and attempt. After he had poked him... twice... they FINALLY got it and Gage was UPSET. We couldn't get him to calm down at all. Then, when he could, Derek picked him up and Gage was OUT like a light. He had totally worn himself out. Good thing we were done with everything else so that he could sleep as long as he wanted. This is him... still out... once we got to our room.

We have to be at the hospital tomorrow morning at 6:30 am, and his surgery is expected to start at 8:00. I can't feed him anymore after 3:00, I feel so bad!! But he is the first surgery of the day, so luckily he will probably start right on time! They told us to plan on about 3-4 hours for the surgery, but not to worry if it goes longer. Our nurse said she will update us around once an hour, but the first update won't be until after they have made the incision, and that might be like an hour and a half or so. Anyways, I will keep up on this as much as I can for anyone who might be interested in what is going on! Thank you so much for all your thoughts and prayers, they mean so much.

There will be 2 surgeons in the room working with Gage tomorrow, which makes me feel a lot more comfortable. My Aunt Roni sent us a sweet card and in it she reminded us that Heavenly Father's hand is in all things. I'm not sure she knows how much it meant for me to be reminded that so clearly. I haven't forgotten, but a clear reminder made a huge difference to me. Now every time I think of the surgery, I don't imagine 2 surgeons. I told Gage earlier this evening that Heavenly Father is going to be the 3rd surgeon in the room taking the closest care of him. He will be doing the most critical things of all and keeping him safe for us. I'm so thankful for him and that he has blessed us with Gage in our lives. We have learned more that I could have ever imagined from him. How lucky we truly are to have the gospel in our lives.