Day Out for The Boys........ And a New Addition

Yesterday Sam, Dad, Taylor and Garth went out for an afternoon of shooting skeet.

I think Sam was the best one of all! He was definately in his prime! He was up there with each shot (with his fake shotgun) blasting every one of those clay pigeons apart.


They had a great time. Sam is set now on buying a gun with bullets. He has seen a toy one at the store that he was asking Gary for. Gary told him to ask Santa for it, but Sam thought that would be too long to wait, so he came home and went straight for his piggy bank. He wants to spend his own money and buy one instead of waiting for Santa to get here with one.
A boy can also have a lot of fun with a pair of binoculars!

So I'm sure you're all wondering what the new addition is. No, I am not pregnant! When Gary was getting ready to graduate with his Master's Degree, I kept asking him what he wanted for a graduation present. He had many answers (all too expensive), but one that he really wanted was a new truck (see what I mean about expensive)! I told him graduating wasn't enough to get a new truck, he needed to find a job first so he could pay for his own present. Well, that was 1 1/2 years ago.
We started looking for trucks last year about this time, and had some picked out that we liked. We decided to wait until after the first of the year (2008) and see what kind of deals they had. We had our 19 week ultrasound scheduled for Jan. 2, 2008 with Alex and decided that we would get the truck later that day or the next. Well, as all of you know, our world was turned upside down that day. We were hit with the news about Alex. Since so much was unknown, we decided to put the truck on hold and planned on our money going to medical bills instead of a truck. This year has been a busy one, and things with Alex are going wonderfully. We are hopeful that they will continue to go that way!
We decided on Friday to head out and see what was available since Ford was offering employee pricing, plus $6000 in discounts. We went to 3 dealerships and not much was available, until the 4th one. It didn't take much convincing for Gary (or me either) to go ahead with it, so what the heck-- we gave in!

I couldn't tell who was more excited when we decided to go ahead with it, Gary or Sam , since they were both giddy like school girls! (although Sam doesn't look very excited in this picture)

We are really excited! As many of you know, we love camping and outdoor stuff. Well, it was tight in the car with one kid to get everything in, and impossible with two. We couldn't really get out camping this last summer anyway, but as long as things keep going well with Alex, we hope to do a lot of camping this next summer!
After we bought it, we got thinking--- Will it fit in the garage?


WHEW!! With about a foot to spare. Not much, but it fits! We didn't want to have to park it outside!
We have been without a car payment for about 2 years, and so taking on a car payment again stinks! We are really excited though. We still have both of our cars. The truck will be for camping and such. We know that for the first little while we will be driving it A LOT, but eventually we will go back to driving the cars around. Gary will still drive the car to work. This truck isn't meant to be a commuting vehicle. It's nice that gas prices have come down, so it won't be so painful to fill it up for a while.
Don't laugh at us as we try to get used to pulling it in the garage, parking it, backing it up, etc. We will learn quickly.

Happy Thanksgiving!

Here is my cute little "indian". He made this hat at school, and has been so proud of it, saying "I'm the big chief"-- and most of the time, it's probably true!
I wanted to take this opportunity to tell each of you that read our blog, some of the very many things that I'm thankful for. We have been so richly blessed in our family. The words that I write could never measure up to what I feel in my heart. I know that every blessing I have is from a loving Heavenly Father. I know that He knows me. I know that He loves me. I could never ask for more than that, but yet, He continues to bless my family and me. How blessed I am to have this knowledge. I pray that each of you can feel that same peace in your lives!
Things that I am thankful for:
1. My loving Heavenly Father and Savior Jesus Christ
2. A wonderful husband & father to our children
3. The two angels who have been sent to my home
4. Wonderful parents & in-laws who have given and done so much for us
6. Siblings and extended family
7. Good health
8. Wonderful friends,neighbors and ward members
9. Chocolate- yes, I'm addicted
10. Fences and sandboxes (best money spent this year!)
The list could go on for pages and pages. I just wanted to list a few of the things that are very important to me.
Life as we knew it last year, is far from where life is now. We would not change a thing! We have been taught SO much, and have endured many trials together as a family. We are better because of all of it. I am thankful to my Heavenly Father for all that He has blessed me with, and encourage each of you to take the time and think about all the you have been blessed with this Thanksgiving season.
I hope each of you have a great day, eat lots of turkey, and enjoy the football games!

See what boredom can do....

As all of you know, we are under quarantine. Well, you start doing weird things when you're really bored. I should clean my house, but that would be productive! So instead, I take really dumb pics. The boys sure are cute though!
E.T. Phone Home--

Bitter Beer Face

Alex has about 5 meds that he has to take morning and night (nothing, compared to a lot of heart kids, especially since 2 are for his reflux). He is not happy about it most times, so we've started giving them over about 10-15 min span. Poor kid, some of them are SO disgusting (even with flavoring added), that he just shutters when he takes them. It is a guarantee that he will pull this face after he takes each one...

Still cute as can be, and within a few seconds, it turns back into this.....

Night out...

Sam and I had a night out last night. My dad is an Army Medic and has been in charge of teaching Combat Lifesaving to the troops in the Western US for several years. He attends an EMT conference that lasts about 4 days, and they provide a night of entertainment at the end. Well, lucky for us again this year it was The Bar J Wranglers. For those of you who haven't heard of them, you've been missing out!

Now, don't be alarmed by the cowboy hats! Many of you know that we enjoy western music, yeah, we're kind of hicks. You should also know that there are several in our family that don't enjoy western music and still love The Bar J. The show that they put on is very family oriented. They sing old western music and tell jokes.
Their ranch is located outside of Jackson Hole, near Wilson. It is a beautiful place. They have a huge barn/building which seats about 700 people. They fill this 7 nights a week all summer long (Memorial Day to end of September). The really amazing thing about it is, that they can serve 700 people dinner in about 15 minutes-no kidding. The wranglers, along with other staff are throwing food on your tin plate, and push you through the line and back to your chair in no time. The food is great too. When you first get there, it seems expensive (about $30 for steak dinner, chicken and BBQ beef are cheaper), but by the end of the night, you feel like you would have paid twice that amount. After dinner they put on their show which normally lasts about 1 1/2 hours. It's clean, funny, and a great time for the whole family!
I have been seeing them every summer (and a lot of winters as they travel through here), for more than half of my life. Sam absolutely idolizes them! He knows nearly every one of their songs word for word. He loves to dress up as a cowboy and pretend he's one of the Bar J.



The Bar J have been around for 31 years. Two of them are brothers, and it was started by their dad way back when. It's a family company, and the guys are very down to earth, and friendly. Like I said earlier, they get in and serve you dinner, and after the show they are more than willing to visit with you. My dad got them to come one fall, to the VA Hospital and perform for the veterans up there.
I cannot say enough good about them and this show (obviously), and so whoever I talk to I highly recommend that if you can, attend their show. I know a lot of people head up to Jackson Hole and Yellowstone for summer vacations, so if you can take a night and go, do it.
There are other chuckwagons out there, but they don't compare. Two summers ago we met a couple from Minnesota who had traveled to all the chuckwagon shows in the western states. They told us that the others could not compare to the Bar J.
Bon-Bon and Pa, Ryan and Merilee, and cousins Brennen and Rylee(and her baby) also went to the show. We had a really great time! Thanks Bon-Bon and Pa for the invite!Thanks Gary for staying home with Alex and giving Sam and I the time together!




They also do shows down here throughout the winter, if you're interested in seeing them here. You can check out their website for the info. I'll put a link on the side, since for some reason I can't get it to pull up on this post.

2 Week Post-op- Check-up

Can you believe it- two weeks ago at this time we were just getting to see Alex after surgery. I cannot believe that 2 weeks have passed already!
He went in for his post-op check-up, and things look great! The day of his surgery he weighed 16 lbs 5 oz and then lost about a pound in the hospital. Today he weighed in at 16 lbs 4 oz, and is 29 in long! Growing like a weed and we love it!
The echocardiogram that we got the day before he was discharged, showed that one of the walls of his heart wasn't functioning at 100%, but was just below normal function (a totally normal finding after surgery)and they put him on some medication to help with that. He had a limited echocardiogram today, which he was not happy about, and that showed that his heart is functioning at 100%. You can imagine how thrilled we were to hear that.
And take a look at this.....

This picture is actually from a few days ago, when I had his oxygen off to change the "dots" on his cheeks, but this is how we will be seeing Alex now during the daytime! They have taken him off of his oxygen during the day, but want him to wear it at night for now. We will hopefully get him weaned off of that in the next few weeks.
Here are a couple of pics with his bandage off. His incision is healing really well, and they've given him the go ahead for a bath! I'm so glad we won't have to do sponge baths anymore!!


Alex has been doing pretty good with his sleeping. If he's up, it's normally just to eat, but it takes about an hour to eat and get him back to sleep. So, it's just enough to disturb your sleep. We are very happy with how he is doing though. We aren't sure how long it's going to take to get back into the swing of things, but we're well on our way. He still has his grumpy times like every baby, but is generally a happy kid.
He still isn't sitting up, but he's getting close. He does not like to roll. He has never liked being on his tummy, and we haven't even tried it since surgery, and won't for a while. His poor little chest needs time to heal! He'll do it when he's ready.
Here are some cute pics from today. I am going to leave the "dots" on his cheeks so that we aren't pulling them off every day, that is torture for his skin. We are going to see if he can wear the O2 at night without them (which would be amazing), so that they don't have to be there at all. So all of his pics over the next few weeks will be with them on.

It starts early and never ends! In love with the remote at 6 months old! It's pretty bad that he has his own, but that way he and Gary don't fight!

Sam is still doing great. He is such a great brother to Alex! We are so blessed to have two such wonderful boys!
I am so grateful to those who have helped us through this time. Our wonderful family has been there to help no matter what. They have saved us on so many occasions. We have such wonderful neighbors and ward members. Thank you to each of you who brought meals in for us. You are lifesavers! So, to all who have helped in so many ways (physically and through offered prayers and fasting), please accept my sincere Thank You! I pray that our Heavenly Father will bless you for your love and service to our family!
I cannot express in words the gratitude that I feel in my heart toward my Heavenly Father. We have witnessed so many miracles, we have felt His spirit, and have been surrounded by His ministering angels. We have been made very aware that God knows each one of us, and He blesses us in our times of need. He never forgets us. Even though He has the entire world to worry about, we are ever present in His thoughts. God will never leave us to endure a trial alone. I love my Heavenly Father, I love my Savior. I will forever be grateful for the lessons that I have learned through this past year and especially the last few weeks.

New Do....

So the other night after the tub, I decided to put Alex's hair into a mohawk. It looked really cute, so I had Gary snap this picture.(by the way, he doesn't always look this bluish color. it really is more prevalent after a bath, or whenever he gets cold- totally normal!) I figured as soon as I got him dressed, it would lay back down. Well, it didn't. I knew that if Sam saw this he would not like it. I thought after sleeping it would lay back down, well, once again it didn't. So when Sam saw it the next morning, he was not happy. He kept trying to comb it down ALL DAY LONG!
All of you that know Sam, know that he believes that there is a right way, and a wrong way for everything (I don't know where he got it from!). Well, he has NEVER liked having his hair spiked. When he gets out of the tub and dries his hair, he can't comb it down fast enough. So being the mean mom that I am, I gave Alex another mohawk last night after his tub!


Well, of course Sam was not happy when he got up. He went into the bathroom, got a washcloth, got it wet, and was coming in to comb it down. Gary stopped him, because we didn't want to whole bed soaked, and he's not the boss (most of the time!).
I think he looks pretty dang cute! And he doesn't seem too bugged with it!
Sam made a dinosaur mask at school the other day, and was sporting it today. I do have to admit that my boys are adorable!

Maybe tonight, I won't do the mohawk and torture sweet little Sam!
Alex is doing great. He is adjusting to sleeping at night at least. The first night he got up at 2:00 am, ate and then took about an hour to go back to sleep. Last night he slept from 10:00 until 5:15 this morning. Not what we're used to. He used to go down around 8:30 pm and sleep until 8:00 am. With all that he's been through, and having his sleep so interrupted all week, he's doing great! His oxygen saturation is right where it should be, and he has been very happy to be home. He has been such a happy boy! We're so happy to be home and to be together!

Happy Six Month Birthday!

I forgot to mention in the previous post that Alex is 6 months old today! Wow does time fly! It's been quite a ride, but, He's come a long way baby!! Keep up the good work Alex! We Love You!!

We're Home!

Hallelujah! We made it home. It's been a long week, and we are thrilled to be back home together.
Today was my Grandma's funeral, and it was a beautiful service. She was a woman of great accomplishment in her life. There were some very touching moments during the service. Really, that is THE biggest understatement, but I don't know what words to use to describe the experience. All I can say is that our Heavenly Father knows us each individually. He knows our every need. Nobody should ever feel alone on this earth. The veil is so very thin that I think if we were to reach out, we would touch the many angels that surround us. I love to bear my testimony to these truths! Our testimonies have been strengthened so much this week. God lives, and He loves us!
When we were discharged, Sam got to pull Alex out in a wagon. Alex loved the ride, and Sam thought it was pretty cool to do. I think Alex was so glad to get out and see the real world again. He was looking all around and staring at everything. Anything looks better than staring at ceilings!


Sam is thrilled to have Alex home. It's been a long week for him. He has done wonderfully for all that he's been through. We are so grateful to our family for their help. We would not have been able to get through this without them. Thank you to each of you for all of your help and love and support!
Aren't they the sweetest things you've ever seen?!

When we got home, Sam was smacking Alex's balloons with his light saber. Alex was giggling, with this deep belly laugh. I tried to take a video of it, but the balloons were making too much noise, so it was hard to hear. It was so good to see him laugh again. It was so fun to see Sam entertaining Alex. He has missed him so much this week. Here are a couple of pictures of the boys at home.



We decided that it was Zeponie Pizza's turn to cook tonight, and we went to the Redbox on the way home and picked up Kung Fu Panda to watch. It's been a pretty relaxing night. We are grateful for that. It's wonderful to be home together doing nothing! You never appreciate that, until you can't do it.
Alex will go in next Wednesday for his post-op check. The Nurse Practitioner said that his echo looked really good. I will also talk to Alex's primary cardiologist next week and get his take on everything. I saw him several times in the hospital, and he has been checking in on Alex all week. All that are involved in his care are so pleased with his progress. As are we!
Our neighbor Kristi also took the time (again) to give Alex a great Welcome Home. Thank you Kristi for taking the time to make our return home a great one. You're so sweet to think of us!


The pictures are kind of dark, sorry, it was getting dark when we got home, but I wanted a picture while the balloons were still all inflated!
I cannot express how much your love and kindness have meant to us. Thank you for checking up on us! Your love and prayers have made all the difference. Alex is proof that prayers work. We will continue to update on Alex's condition. We are hoping that the transition to home will go smoothly. His sleep has been so interrupted over the last week, so we hope since we won't be checking his vital signs every 4 hours, he can get some good sleep for long intervals.
Thank you again for your love! We love you!!

COMING HOME!!!!

Yes, you read right! The plan is for Alex to come home tomorrow (Wednesday). As Gary posted earlier, the MRI came back totally normal! Our Heavenly Father continues to prove to me that He loves us, and that He will bless us in our time of need. He is my strength, and has performed many miracles in our family! I am forever grateful for His love!
My Grandma's funeral is tomorrow at 11:00, so Gary's mom said that she would sit with Alex at the hospital while we attend. Then as soon as we are done, we will go and get him!!
He will be coming home on oxygen, which is totally normal. They explained it to us that it is working like a medication for him. The oxygen allows the blood vessels to dilate, and lowers his pulmonary vascular resistance. And, if that doesn't make sense, just know that its a good thing. I spoke with his surgeon about it this morning, and they expect his oxygen saturations to be into "normal" Alex range within about a month. Hopefully at that point we can stop using it. With all that he's been through, oxygen and a few more medications is nothing to adjust to! We are so fortunate that he has done so well!
We will go into quarantine mode now (unfortunately)! Alex is so fragile at this point, and so we are going to try to do everything possible to avoid exposing him to anything. Sam still needs to live his life, so I hope that the most he will be exposed to will be what Sam will bring home, which is still a lot from preschool. Sam has a cold now, but is on the tail end of it. He came down with symptoms the day after Alex's surgery, so hopefully he is far enough out to not be as contagious. We will just have to see how it plays out. As I've mentioned before, Heavenly Father is in control of everything. I cannot stress about every tiny, little detail (I'm still learning how to do that!), because it will all happen how it's supposed to.
I will post pictures tomorrow after we make it home. It's late now, and so I'm going to sleep in my own, very comfortable bed!! Thank you, thank you, thank you for all of your prayers. Thank you for continuing to check up on us. I cannot express in words how much it means to us. We are very touched when we see how many people are concerned about our family. I never knew how many lives, little Alex would touch. He's only 6 months old, I can only imagine what the rest of his life will bring. He has a mission to fulfill. My two beautiful boys teach me so much each day. I am so blessed to be their mother! They truly are angels sent from Heaven!

Go Alex Go!!!

Alex continues to improve. He had his MRI today, and it came out perfectly normal!! He is getting an echo today and we expect that to look great too. Assuming this all goes well he will be coming home tomorrow! We are so happy for him. He has been such a tough kid through all of this. We are thrilled to have him doing so well and coming home. Thanks for all of your support and concern. It means a lot to us and especially to Alex.

Post-op Day #5

Well as Gary posted earlier, Alex has had a couple of good days. This morning he started out as guy smiley. Everyone that came into the room was his friend and he was grinning left and right. He slept pretty good, and would've slept better had they not been coming in to check his vital signs every 4 hours. Oh well, I guess they have to do their job!

He has been eating relatively well. His weight this morning was 1 lb less than when he was admitted to the hospital. So, considering all he has been through, he's doing great! Unfortunately, the pain meds have caught up with his tummy. This afternoon he has been pretty fussy, and super gassy (like father-like son). The pain meds slow your guts way down, and so it could make for a long night, poor little guy! All of his wires have been removed, so hopefully in the next couple of days we can slow down some on the pain meds. I just want to thank Nancy and Ang for bringing the basket of goodies up to the hospital today! Sam loved the dog and the blanket! Alex was pretty mesmerized by the teddy bear. It could be the fact that it's 3 times his size, but it was very entertaining for quite a while.

The new blanket was also a hit. I didn't bring any blankets from home, because I didn't want them to get lost. I did that with his last surgery, and then hated that he was using the scratchy hospital blankets. You would've thought I'd remember that. So anyway, the new blanket that came in the goody basket went over well too. We both snuggled in it this afternoon. You still have to watch that guy, he could rip your blanket away any minute!

I tried to put a video on, but it's not working. I'll try again later. Your continued prayers and love to mean so much to us, and give us strength to get through each day. I know that we are blessed. Thank you to each of you for your help and to our family for all of the support and help they've given. We couldn't get through this without you! We love you!

Quick update....more to come

Alex has had a great couple of days. Yesterday he was all smiles. He talked and played with Camille and her parents all day long. He has had no further seizures (knock on wood). They pulled the last of his lines out today and will check an echo later today, MRI tomorrow. Camille will have pics posted later today. Things have really improved since Saturday, and he is doing great.

Sunday, Post-op Day #4

Alex had a good night last night. Gary ended up staying at the hospital with him and sleeping in the waiting room. They have several couches in there, and obviously it's not ideal sleeping, but hey it works. I came home with a massive migraine, so it felt really good to sleep in my own bed.
Last night when I left he was a little unsettled, which he had been all day. I think it's a combination of a sore chest, bad headache (which should hopefully be improving in a week or so), and worn out from the seizures. He did fall asleep, but you could tell it wasn't a really restful sleep. They moved his room to a different one in the PICU, and there's a lot more commotion there so it makes it hard to sleep. The little girl next to him cries a lot too, and that kept waking him up.
Gary told the nurse to come and wake him up if there were any more seizures or if Alex was really fussy. Gary woke up at about 5:30 am and went and checked on Alex. The nurse said that he had a little while where he was pretty fussy, but then fell asleep and zonked out. She said that he woke up at 4:00 am and was the cutest thing she'd ever seen. He was smiling and talking to her and really interacting. When Gary went in he was starting to fall back to sleep, but saw Gary and started smiling and talking to him.


These pictures are from yesterday. It's so nice to see him sort-of smiling!
Yesterday, he seemed to be favoring his left arm. He was still gripping with his right, but wouldn't really bring it to his face or use it much. This morning when Gary was in there he was rubbing his eyes with both of his hands and lifting his arm up. It's so encouraging to see him using it. We won't know for a while how much his seizures have affected the use of his arm or other parts of his body. We have to just monitor him and watch as he reaches his milestones. All we know is that it is in Heavenly Fathers hands. He is the one that's in charge of everything, and we trust that He knows what is best.
Bon-Bon and Pa are there this morning spending time with him and letting us have some time together with Sam. We were able to get up and have a good breakfast and now Dad and Sam are playing Star Wars.
Sam is doing well. You can tell that he is feeling the stress. He's been doing little things to act out, but he has come down with a cold this week, and you can tell he doesn't feel good either. He is such a trooper as well! It's so hard for him to have Alex gone, and having mom and dad back and forth to the hospital, but he is still our sweet little Sam! He is such a good boy!

We will be up to the hospital later and will get more pictures. Hopefully he will give mom some grins! I think he's been mad at me (not that I blame him), and hasn't been as grinny for me.
Thank you for checking in on us, and for your continued prayers. Alex is proof that they work! We will update tonight and hopefully have more pictures.

Silly me...

Sorry for the delay on the post. I decided to come home and sleep instead of update the blog. I stayed at the hospital last night with Alex and actually go to stay in his room with him. I'm saying stayed at the hospital because there was no sleeping going on. Alex slept, but mom didn't.
His night went pretty well. His appetite had decreased a little bit, with everything that went on yesterday, so he hadn't been interested in a bottle until about 2:00 am. He also sounded very stuffy, we think from the oxygen drying his nose out. He was getting really frustrated with his bottle, because when he would try to suck, he couldn't breathe. So his nurse decided to suction out his nose, which cleared some junk out, and he got some meds which helped him relax enough to ignore the stuffy nose and eat. He did great the rest of the night, ate again, and his breathing sounds better.
There had not been any more seizures, until this morning around 8:00, when they came back. They increased his dosage on his seizure medication and we will watch it from there. That is the hard thing with seizure medication. It's a trial and error kind of a thing. With some seizure meds, they can draw a titer to check levels. This drug that he is on, doesn't work that way. They prefer this med though, because it tends not to sedate the kids. He is still moving the arm that has been affected really well, and is gripping with it, so they're not too concerned about any major damage. The only way to tell will be with the MRI, which will take place either Sunday or Monday, most likely Monday.
He had his chest tube removed this morning, which bothered him (go figure), and they removed his arterial line from his wrist. He still has an I.V. in each foot, which we hope will keep working until he won't need them anymore. These little baby veins are so sensitive.
Gary is up at the hospital with him today, and I will call him to get more updates and try to update later on. Sam has spent the night with his cousins and they went to see Madagascar 2 this morning, so I am just waiting for him to come home so that we can spend the day together. I'm sure that he will enjoy being home a little bit. He has had so much fun with grandparents, aunts & uncles and cousins. Thank you to our family for taking such good care of Sam for us.
Please continue to pray for our family. We cannot express to you how much that means to us. Your love and support are such a strength in these trying times. Our Heavenly Father continues to bless us and we are forever grateful for his tender mercies that he shows to us.
(The camera is still up at the hospital, so I can't post any pics right now, but I will later. He is still just as cute as ever!!)

Quick Update.

Just wanted to let everyone know how Alex is doing. The day started out good. When we got here this morning, they said that Alex had another little seizure at about 3:00 am. They gave him meds and it stopped. Gary and I decided that we would take Sam out for the day. The hospital will give out free Zoo passes for families with kids in the hospital, so we got one for today. Grandma Bon-Bon said that she would come and stay with Alex. We went to the store and picked out some prizes for the boys, had lunch and then headed to the zoo. While we were there, Grandma called and said that Alex was having more seizures. They were small and still in his right arm like before, but they were happening frequently. Too frequently. They decided to put him on some medication for seizures that he will continue to take until we can really see what is happening. He still has pacing wires in his heart and so they can't do an MRI until those are removed. His heart rate has been lower today than it should be, but still okay, so they didn't want to remove those wires until they were sure they weren't going to need them for his heart.
So... they will continue with the seizure medicine, his heart rate is picking back up, and as soon as they can remove the pacing wires, he will have his MRI. He is still eating and pooping and doing all of those things that are important. He is pretty tired tonight, which is very understandable after the day that he has had. They turned his oxygen down, so now he is on 1/2 liter down from 2 liters and his saturations are exactly where they should be. He is off all of his I.V. medications, and the I.V. that went into his heart has been removed! Which meant that I got to hold him!!! It was heavenly to hold him! I needed that especially after the stress of the day!
We have been so blessed! We cannot thank our family enough for the prayers and support that they offered us today! We also cannot thank each of you enough for checking on us, and for offering your love and prayers. We have seen the power of prayers today. Our Heavenly Father truly loves us, and he blesses us. He is ever aware of our needs, and will give us the strength that we need to endure our trials. Please continue to remember our family in your prayers, especially Alex and Sam. They are angels here on earth, and we are so honored to be their parents. We will update again soon, but it may not be until morning! Thank you again!

Still doing great...

Alex has done great this afternoon. He got to start eating a bottle at four hours after having the breathing tube taken out. He scarfed it down and ate another. About an hour after that he ate another! He is making up for lost time. Surgery hasn't changed his appetite. He is much happier now, and maybe won't give the nurses such a hard time. They are weaning him off of his IV drips and said that possibly he can go out of the ICU tomorrow or the next day. He is an amazingly strong little boy, and we are sure he'll continue to recover quickly. We'll get some pics up tomorrow of him, but he is doing great. Thanks for all the support, concern and prayers.

Extubated.

The breathing tube is out. It was removed at about 1:45 pm. He is doing well. His O2 sats are on average in the low 70's. As he coughs more and really gets his lungs going, those will go up. The cardiologist said that he would be surprised if they weren't up to normal range (for Alex) by the time we leave the hospital.
He is grumpy. I think mostly because he is STARVING! They make them wait 6 hours after extubation to eat. They said that he can probably have some pedialyte at 4 hours, so that would be at about 6:00. They have been giving us sugar water to dip his binkie in, but that is mostly making him mad. He licks the sugar off and then spits out the binkie! Real dummy, huh?
We have not been able to hold him yet. He still has a line that goes into his heart, and his meds are going through that. So when that is removed, then we can hold him. He looks really good, although when his sats go down, he starts to get a pale blue coloring to him. Poor guy! He is still just as beautiful to us! What a tough kid. What a merciful Father in Heaven we have. He loves each of us, and has blessed our sweet little Alex so much. We are forever grateful for that.

The day after.....

Things are still looking good for Alex. He is still our little firecracker! He kept the nurse on her toes last night. She said that he was "doing aerobics" all night! He does this funny thing of lifting his legs straight in the air and then slams them down, and I mean he slams them down! He's got a lot of AB strength in that fat little tummy of his. It's a totally normal thing that he has done since not long after birth. So, since he was so active, they sedated him a little bit more. He always seems to require more sedation than they think he will.
This morning we are still waiting to get the breathing tube out. He has to do a spontaneous trial to show that he can breath all on his own, and still keep his oxygen and lab values where they should be. Well, on his first try he did great! The nurse then decided to pull out the big IV that is in his neck. Well, he was not one bit happy about that. He cried (no sound came out because of the breathing tube in his throat), and his oxygen levels dropped some. So if she would've sent labs at that point, it would've shown that he wasn't ready. So she decided to put him back on the ventilator and let him rest a little bit, and then try again. So as we speak, he is doing his next spontaneous trial, then at noon they will send more labs, and if they come back looking good, they will pull the tube. We are praying that this can happen. As soon as the breathing tube is out, WE GET TO HOLD HIM!!!
He is such a trooper! They put a tube through his nose, down into his tummy to suction out some of his stomach juices. He has pretty bad reflux, and last night with all of his aerobics, she thought maybe that was bothering him. They have not drained a lot out of there, and that tube will come out with the breathing tube. His chest tube is draining very little fluid and what is coming out is clearing up. So that is a great sign. We are so very blessed. He is once again proving that Heavenly Father works miracles. Thank you for all of your well wishes and prayers. Thank you for taking the time out of your busy day to check on us. Your support means so much to our family!
I also just want to mention that my grandma (dad's mom) passed away last night after a long and valiant battle with dementia. She will be missed greatly by our family. She is in a much happier place now, and I know that she is with the other angels that are watching over Alex and our family. Please remember my grandpa in your prayers especially. He was so devoted to my grandma, and although he knows she is now at peace, he will miss her so dearly.
Thank you again to all of you who have supported us, and continue to check up on us. I cannot express in words how much your love means to us! May God bless you for your kindness that you have shown! We will update in a little while and let you know how little Alex is doing. It might be a while, because if I get to hold him, I'm not letting go!!


Here is Alex, hangin' out with IPOD. He was kind of mad after removing the line and everything, so we turned on a little music to soothe the savage beast! He seemed to enjoy it. I'm sure it's nice to listen to something other than the beeping and clicking of the machines!

Caution...Not for the weak or faint of heart-

What a day! What an understatement! I am just warning you that I am going to post pictures on here, they're not pretty, but they are our sweet little boy and all that he is going through.
Here are a couple of pictures of Alex pre-op.


We tried to get a group shot. Doesn't Alex's face say it perfectly?! That worried look will probably still be there in the morning when he wakes up.
He is doing really well. He is still on the ventilator, only because they are doing the EEG tonight and want him sedated and happy. He is triggering each breath on the ventilator, so his body is doing the work, and the vent is there to help make sure that he gets adequate breaths if he decides to stop breathing. They are going to get rid of the vent in the morning, which will be such a huge relief! His lab values all look good, oxygen levels are where they should be(low-mid 80's), and so hopefully all will go well in the morning.
Here are a few pictures of what he looks like today.


Sam was busy this morning making "get well" cards for Alex. He wanted us to take them to him today and hang them up for him. Oh, and the tape on Alex's head is for the EEG.

I know that Alex looks like he's not doing well, but he is. We are so pleased with his progress. We hope that he continues to take big steps forward in his healing process. Our Heavenly Father has blessed him immensely! Your prayers mean so much to us. I sound like a broken record, but your prayers work! They are being answered. We are so grateful to all of you who have helped and will continue to help. We couldn't do this without your love and support! Thank you. We will post more tomorrow as we get more info, and hopefully the pictures will be with less tubes! These babies after surgery get massive headaches, due to the shift of blood and pressures. They typically take a couple of weeks to adjust. So don't be alarmed if his head/face look swollen. It's very normal and expected. Thank you again for your love!