Birthday Time!

Yesterday was Xyler's birthday!  It was a great day to celebrate him turning 1!  One year ago I gave birth to a handsome baby boy whom we thought was healthy.  It was my easiest labor and delivery.  2 small pushes and he was out, but my dr says technically it was one because he was holding Xyler back because he wasn't ready to catch him yet.  :)  Xyler had the cord wrapped around his neck twice and was really purple and having a hard time breathing.  He seemed fine after he was cleaned up.  7 hours later we watched as life flight took off with our baby boy, not fully understanding what was wrong with his heart and not knowing what his future held or if he even had a future.

Now look at him!  He is 1 and doing so well!  He will pull himself up now and walk and is super speedy at crawling.  He likes to get into the dog dish and toss the food everywhere.  This boy is super busy now and gets into whatever he can.  I think he is making up for all of those months that he didn't have the strength to do much before his second surgery.  Now, you would never know that he was born with a CHD and has had two OHS's.  He is my hero.  I have learned so much this year from our experience with Xyler and what he has gone through.  I learn things from each of my children as they grow since they are all different, but with Xyler it was a lot in one year.  I have learned more about love, faith, enduring, and trusting.  I have also learned more about the heart than I can remember learning in physiology, or maybe I should say I paid more attention this time when learning about it.  So many other things but I won't go into them.

We are truly blessed to have Xyler in our family.  He is such a fun, sweet boy.  We all love him so much!  It was a great day yesterday and I can't wait for more of his birthdays to celebrate.

 

We got Xyler a heart cake to celebrate his birthday and his heart.

 

As you can see he was loving the cake.  :)

 

I love it when he pulls this face!  So cute!

 

 

Xavian seems to think that Xyler's new toys are his.  When I give it to Xyler to play with Xavian get's mad and says "Mine". 

 

Another of him eating his yummy cake.

 

He was having fun trying to grab the whole cake.  It was a great day!  :)

Good news!

Xyler had a cardiologist appointment the other week.  We took all of our kids to it so that they could get their blood drawn for a research study we are a part of.  Xyler has a chromosome deletion so they want to see if anyone else in our family has it too.  Xander and Nika did well with it and this made Xavian want to do it too since he has to do everything they do.  He did fine until she put the needle in his arm and then he started to cry.  I think he was very brave because he wasn't kicking or anything, just crying.  She wasn't able to get a vein with him so his will have to wait for another day.  The chromosome deletion that Xyler has they really don't know anything about it.  So far in their research he is the first to have what he has so they don't know if it is going to cause any issues for him down the road.  That scares me so I hope they find out with the research they are doing.

Dr Arrington was impressed with how well Xyler looked.  Xyler was crawling everywhere and was super busy.  The nurses even commented on how much better he looked than before his surgery.  One talked about how blue he was.  Dr. Arrington comes up to Logan once a month and uses the cardiology office in the hospital.  These nurses don't deal much with little kids since the office is for adults.  We are just so grateful that he comes up to Logan so that we don't have to drive down to Salt Lake every time.  He told us everything looked good on Xyler's x-ray and that he didn't need to be seen until spring.  That visit he will have an echo done at Primary Children's and then after that it will be yearly visits until he is needing his next surgery.  This was great news for us!  What a blessing it has been with him doing as well as he is.  He is such a strong little boy.  When you look at him now you would never be able to guess that he has had two open heart surgeries.  He is our CHD Hero.

I talked to the dr about getting my other kids checked so he listened to their hearts to see if he could hear anything that didn't sound right.  He said they all sounded great.  This was good news too.  Now we will just have to see what the blood tests show for all of us on if anyone else has the chromosome deletion.  He is really interested to see what it shows for Xander since he had Meckles Divirticulum two years ago.  He said that it is strange for a family to have a child with Meckle's and a chd.  I guess I should explain what Meckle's is.  When you are in the womb you have a little flap on your small intestine and it is fed by an artery.  After you are born it disappears except for in 2% of people.  And of that 2% only 2% have a problem with it.  In Xander's case it caused his intestine to twist.  He was really sick for a few days before and couldn't keep anything down.  He also didn't have the strength to do anything, not even to watch tv.  He just slept all day and night.  It was scary!  He was sent down to Primary Children's where they did exploratory surgery and found out the problem.  They took out some of his small intestine and his appendix.  I cannot say enough about how wonderful Primary Children's is and their wonderful doctors, nurses and staff.  We absolutely love that hospital!   

CHD Walk for Awareness

On Sept 8th we went down to Provo, UT, to participate in the CHD Walk for Awareness.  We decided to stay in a hotel the night before close to Provo so that we didn't have to travel so early to get there.  We also just wanted to have a little mini vacation.  My sister and her family live not too far from Provo so we went out to dinner with them and then went back to the hotel to go swimming.  My kids were so excited to go swimming, especially with their cousins.  It was a fun time.  I just wish we had more time to enjoy it.  My sister didn't want to swim so I tried having her hold Xyler while I played in the water but Xyler did not want that.  He was only happy if I was holding him.  So, we sat in the luke warm hot tub.  He was so cute to watch as he started to like the water more.  He loved to just put his hands in and splash.

We had to be to Provo by 8:00 the next morning and we did not get much sleep.  It sounded like a fun idea to sleep in a hotel until you try to get a 2 year old who is used to a crib to fall asleep in a bed.  Needless to say it was a long night of not much sleep.

The walk was such a fun experience.  I have always wanted to go do things for causes but never really knew which ones to go to.  There are so many good causes out there!  Now, we have a cause and a reason for it.  It was neat to see all of the other people and the chd warriors who were there.  My sister and her family came to the walk and it really meant a lot to us to have them there supporting the chd cause.  I was so busy trying to keep Xyler happy that I didn't think about taking a group pic of all of us there for Xyler.  I did get a few shots of everyone but my sister and her hubby.  I don't know how I missed getting one of them.

This was Xyler's first time in a swing while we were there and he loved it!

 

Xander and Scott hanging out.

 

 

 Poor Xavian was so tired by the end of it.  It didn't help that he didn't sleep much the night before.  :)

 

 

 Nika with her cousins Kendri and Kaiya and Dalton in the second pic.  They had a lot of fun!

 

 

 

 Xyler and me.  This truly was a special day for us because of our little heart hero.

One day I'm hoping I will finally get on top of things and be super organized so that I actually have time to do the things I want to do, like updating this blog.  That day may be when my kids are all in school, but that day will come.  :)

We have been pretty busy since my last post.  Xyler is doing really well and is now crawling all over the place!  He is also our little vacuum because he seems to find any little piece of dirt on the floor and puts it in his mouth.  He is pretty fast at crawling and likes to book it out to the kitchen to our dogs food dish and tries to eat her food.  Then I have Xavian who gets a little jealous if I give Xyler more attention than him, so he decides to get my attention by getting into things he shouldn't. So between Xyler and Xavian I stay pretty busy while Xander and Nika are at school.  I'm still having a hard time with the fact that I'm old enough to have a 4th & 3rd grader.  :)  They are enjoying school and like their new teachers so it has been good for them to go back.

Since Xyler's last surgery he has had issues with throwing up.  For a while It was everyday.  He would eat something and gag, then throw up.  He would cough, gag, then throw up.  It was not much fun for him or me.  I felt so bad for him and never knew what would cause it or when it would happen.  Now he doesn't throw up from gagging and is doing a lot better.  I have noticed if we feed him any food with dairy in it he throws up later.  I already have two kids that are lactose intolerant but I have never had one that throws up from dairy.  I have been really leery on feeding him anything but baby food!    
We also think that he has an allergy to nuts.  The other week we were eating a dessert where there were some chopped up pecans in the crust.  My hubby was holding Xyler, feeding him some of it and was making sure to not give him any of the crust since babies aren't supposed to have any nuts until after they are one.  Xyler reached out and grabbed the plate and got some of the dessert on his hand.  He then rubbed his eye with that hand.  A bit later the side of his face that he had rubbed was red and puffy.  The only thing we could figure was that he got some of the nuts on his hand and rubbed it onto his face.  I washed off his face and gave him some Zyrtec and it went away.  I have never had this happen to a child and I am a little worried about him being allergic and being able to handle it.  This poor kid just can't seem to get a break!  I'm hoping he will outgrow the nut allergy and the issues he has with milk.  If not we will handle it the best that we can!  He is such a strong boy and I know he will handle anything that is thrown at him.

This is Xyler with his red blotchy face.

Craziness!!!

So, I have decided on this blog I will also write about my other kids and everything going on in our life.  I was planning on doing another blog for that but.....let's face it, I have a hard enough time finding time to write on this one that having two to write on will kill me!  I cannot believe the craziness of having 4 kids and two being under two.  I only have two more weeks of saying that since Xavian will be two by then. 

Other than some craziness life has been good post surgery for Xyler.  It has been so nice being able to take him places and to go places as a family.  On July first we were able to all go to church as a family since having Xyler.  What a wonderful feeling it was to have Xyler there!  For many people it was their first time seeing him and he was a hit!  Everyone just adored him and thought that he was a little cutie and such a happy baby.  He really is a very happy baby and I think he is adorable too, but I'm a little biased.  :) 

Xyler wasn't drinking much for a few days around the beginning of July. I figured it was because he was teething.  He acted like it hurt when he would be drinking.  The morning of July 2nd he started throwing up everything!  I knew he was becoming severely dehydrated so I took him in to see his ped.  He could tell that he was very dehydrated and figured he had some sort of stomach virus that has been going around, so he sent us over to Logan Regional Hospital so that Xyler could get an iv and get some fluid in him.  The only hard time of him being there was when they put his IV in.  It took them a long time and the poor kid was screaming throughout all of it.  I was not very impressed but I do realize they are not used to putting IV's in a baby.  Plus, he still had bruises from all of his IV's from his surgery so they didn't want to put one in on those areas.

After spending a day and a half, and getting pumped full of fluid Xyler was looking and doing a lot better and was able to go home.  Since then he has done great!  He is eating and drinking like he should.  I am so amazed by the difference his surgery has made for him.  He always wanted to sit up on his own before but didn't have enough strength to do it.  He also couldn't stand on his legs for more than a few seconds.  He now can sit on his own on the floor and can stand longer than he could. It is so wonderful to watch him start to do all these things that he didn't have the strength to do before.

Now for the bad news of when he came home from the hospital.  My other kids caught what he had...ugh.  Xander and Nika were only sick for a few days but poor Xavian had it longer.  He fevered up to 104 and then broke out with red spots.  When most of the spots had disappeared we took Xavian outside to play for a bit.  After a while I suddenly noticed that he was covered in spots worse than before!  The heat from the sun made more of them appear.  He the got diarrhea and wasn't eating or drinking much.  I took him to the dr because I was afraid he was becoming dehydrated too.  His weight looked good so his ped just told me to bring him in in a few days for a weight check if he wasn't improving.  He finally started to drink more and then eat more a couple of days later so I never took him in.  Now his feet and hands are starting to peel like crazy and I have no idea why.  He is really fair skinned and seems to have sensitive skin.  I just don't know what to do with him!  It seems like he is always fevering up from something and then normally breaks out in hives from the fever.  I just hope he starts doing better and won't get sick as much.

I love my kids so much, even with all of the craziness they bring into my life!  :)

Life After Surgery #2 Continued

Day Two At Hospital - I would say day two was the hardest day during the whole time Xyler was in the hospital.  We went to the CICU Friday morning and I was so excited to see our favorite nurse/friend Carolyn as Xyler's nurse!  It was so nice to have a nurse that we knew from the first time he was in the CICU.  We became good friends and keep in touch so she knew that he would be there.  She told us that he was doing well and she got him to drink a bottle.  I was so happy to hear that he was eating!  I thought it was going to be a day of him sleeping most of the day but that did not happen.
Poor Xyler was in a lot of pain from a few different things.  Obviously from the surgery, his chest tubes, and he was super constipated.  He fussed so much and it was heart breaking for me to see him in pain and to not be able to do anything about it.  I couldn't hold him until later in the day, and the time the I couldn't was so hard!  I couldn't stand the feeling of helplessness when my child was obviously in pain.  I think the chest tubes were making it hurt when he would try to go so then he wouldn't go.  We decided to give him things to help but they didn't do much for him.  He would fuss and I would go up to him to try and calm him down, and he would look at me then start crying more.  I think he was mad that I wasn't picking him up. 
I was so happy when I could finally hold Xyler after he had his IV in his neck removed and the one in his wrist!  We were even being told that he would probably get moved up to the floor that evening.  I was so excited!  I didn't think he would get moved up that fast and I wasn't going to complain, that was for sure!  :)
 When Xyler was doing better and it was close to shift change we decided to go out to eat.   At shift change we have to leave from 7-8.  We decided to eat at Joe's Crab Shack since we love it and hardly ever get to eat there.  Scott and I hardly ever get to go out on a date so this was our date. The food was delicious and it was nice to be together but I was not liking being away from Xyler for very long.  We hurried back and when we got there Xyler was not there.  He had been moved up to a room!

Day Three - When we got there in the morning we were told that he had a fever.  It got high enough to where they were concerned so they were drawing blood, getting a urine sample, and testing his snot for respiratory things.  Because of the respiratory tests it was protocol to move him to a room away from the heart area.  I didn't mind the move since the room he was moved to actually had a couch in it.  These are so much better to sleep on instead of the pull out chair.  Right before he was moved they were giving him some general antibiotics.  While they were running it through his IV I got up to look at him in the crib and his forehead was turning bright red!  I told Scott to hurry and get the nurse because he was having a reaction to the medicine.  We were later told that the antibiotic, Vanco, would cause what they call the "red man syndrome".  They would give him benedryl and set the pump at two hours instead of one for running it through his IV. It was so sad to see him looking so out of it from the drugs and from the fever.
The good thing that happened before they moved Xyler was his chest tubes and pacer wires were taken out!  This is always a great thing since those chest tubes are mighty uncomfortable.  Xyler couldn't tell us that they were but you could tell a difference with them out.  The main chest tube is pretty big and they put stitches around it and then when it is taken out they tighten the stitches and tie it off.  The other things they just pull out and bandage up.  The NP was so nice and she was so impressed with how well Xyler held still.

I took this pic right before they took them out.  You can see how out of it Xyler was.

   
My brother Wade and his daughter came to visit.  My sister Heather and her hubby Casey and fam came to visit and brought my kids to visit since they were staying with them.  It was so good to see my kids but so crazy at the same time!  My parents and my sister Richelle also came to visit so it was a little crazy for a bit.  I wish I could put a mute button on my kids sometimes, a pause one wouldn't be so bad either.  :)  We went out to lunch with all of them except for my parents and Richelle.  We knew it was going to be hard for Xavian when it came time for him to leave with Heather.  He has a hard time being away from us.  The rest of the day was pretty uneventful, thank goodness!  Xyler was eating better and his fever had gone away later that afternoon.  Xyler just slept all day, which was just what he needed.

Day Four - When we got to Xyler's room he still seemed out of it.  The nurse told us that his IV went bad so she had the IV team put another one in earlier that morning.  When they started the Vanco they set it to run for one hour instead of two so even with a dose of benedryl before he still got red man's syndrome. 

For some reason only the top part of his head went red.  This wasn't as red as it was the first time.

  
The Vanco was so hard on his veins and he had to get a total of 3 IV's this day.  I was ready to be done with the Vanco but we still had to wait until the next morning to see how the cultures were.  So far all of the other tests they had ran were negative.  Xyler just slept most of the day except when it was time to eat.  He was eating almost as well as he normally did so we were super happy about that.  One thing I really like at PCMC is that they will bring the sacrament to your room.  They also hold a 30 minute sacrament meeting but where Xyler was having a hard time with the Vanco we decided not to go.  We had the same nurse as the day before and I love that she was able to come into our room to partake of the sacrament too.  We really liked her and I enjoyed talking to her throughout the day.  She was so good to keep an eye on his IV's since he was having such a hard time with them.
Scott left that night to go stay at his sisters house since he was going to work the next day.  We had been staying at the University Guest House up until this night.  I just stayed in the room with Xyler, which I don't mind too much.  I didn't like that his room didn't have a shower so I would have to use the community one.  They also come in really early to draw blood and then take him for an x-ray.  I was pretty tired Monday.

Day Five - Xyler was starting to act more like himself this day.  He was still sleeping quite a bit but had longer awake periods.  I think from all of the IV's he had to get before he was sick of everything!  When the nurse would try to give him his medicine he would swat at her hands and push them away.  I don't blame him for being sick of everything and being sick of all of the medicine he was having to take.  His x-ray had shown he had gotten a bit more fluid around his heart than the day before so they were going to give him his lasix(a diuretic) through his IV.  The good news was that the cultures were negative so then they could stop the antibiotics!  The bad news was his IV went bad from the last dose of vanco and he would need an IV for his lasix.  He was also going to have an echo sometime this day and if it looked good he might be able to go home within the next two days.  We had started giving Xyler his oxycodone only when he needed the day before, instead of every 6 hours.  I was trying to hold off on it until right before his echo since they weren't going to sedate him for it.  I figured the oxycodone would help relax him. 
Xyler did pretty well during his echo.  I fed him a bottle throughout it but he drank it fast so it didn't help for very long.  For some reason while he was in the hospital Xyler decided he didn't like his binky.  I kept trying to give it to him during his echo and he would just spit it right back out.  With the help of a movie and a great tech we made it through it.
The echo looked good but I was told that when they run lasix through the IV they like to keep them another day so that they can give it to him orally and then see how his x-ray looks.  He was taken off of Oxygen and his sats looked great!  I loved having him off of it and was just hoping his sats stayed high.  Scott came down to visit after work but because of this info he decided to go stay at his sister's again and then go to work the next day.  It was nice to see him and be able to have dinner with him.

Day Six -  Xyler was eating well and doing pretty good.  I was planning on one more day in the hospital, but when the doctors came around for rounds I was told we could go home.  Xyler's cardiologist was going to be in Logan on Thursday so we just had to go there for an appointment so that they could do an x-ray to check the fluid around his heart.  From the moment the H word was mentioned Xyler was all smiles!  He knew what was going on and he was very happy about it.  :)  I don't think Scott was happy about the short notice since he had to leave work to get us but I was happy about it no matter how short of a notice.  My sister met us at the hospital to bring my kids.  It was a good feeling knowing we were all going home.

This is Xyler when we were outside the hospital waiting for Scott to pull the van up.  He was so happy!  Does he look like he had surgery only 5 days before?  If you notice, there is no oxygen tube and you can see his whole face!  I love it!  What a little warrior!

We went out to eat some lunch with my sister and her kids.  This was Xyler's first time going to a resturant.  I made sure I asked the nurse if it would be ok to take him.  What an amazing feeling to be able to all go out to eat as a family!  It was something we had not done since Xyler was born.

Life after surgery #2

So....I think it's obvious by now that I am not the greatest at updating this blog.  My intentions are there, however having time is not.  I was planning on doing updates ever day when Xyler was in the hospital but was too tired to do it.  I guess I am just getting old.  :)  I will just have to recap everything right now.

Day One In Hospital - In my last post I briefly talked about how Xyler was after surgery.  I still won't go into too much detail.  His surgery was set for 8:30 AM and we had to be there by 7:00 AM.  We had to wait for quite a while before they finally called us back to get Xyler ready for his surgery.  Dr. Kaza(Xyler's surgeon) met with us briefly.  He couldn't believe how big Xyler was and he thought he was so cute and loved his dark eyes and long eyelashes.  Then the anesthesiologist came in and talked to us.  After we got an employee to come in to help Scott administer a priesthood blessing to Xyler before they took him back for his surgery.  Saying goodbye before they take him is always so hard.  I was doing good up until that point.  They just had me carry him to where he needed to go as far as we could go.  I gave him a lot of kisses and a big hug and with tears in my eyes I had to hand him over to the anesthesiologist.  Scott and I made our way to the waiting room and began our long wait.  It is nice that they update you throughout the surgery and I was always watching the clock waiting for an update.  After a long wait we were finally able to see Xyler and by this time it was 3:30 PM.  This one was longer than his first but they also had to do more this time. 

In his first surgery they put in a BT Shunt so that he would get blood flow to his pulmonary arteries.  they also had to widen both his left and right pulmonary artery.  Both of those looked good so they didn't have to do anything with them during the second surgery.  So, this surgery they had to take out the BT Shunt, patch up his hole between the lt and rt chamber(which we have a piece of the material they used and were told that his hole was really big), and put in what they call a conduet, which is from a donor, for his pulmonary valve.  Xyler did not have a pulmonary valve before this surgery.

It is always such a relief when the doctor comes and talks to you about the surgery and then when you can see your child.  I don't even get scared at seeing him with so many tubes and IV's after surgery because I am just so relieved that he made it!

I was so happy and surprised when they told us they would try to take the breathing tube our that evening.  It happened sooner than we thought it would!  Yay!

  
He slept most of the first day after surgery, which who can blame him.  It's hard getting the anesthesia out of their little systems and then add pain meds on top of that and you have a nice sleeping concoction.  We did see some eyes a few times but only for a few seconds, but he did kick his legs up a lot.  That was one reason why they took out the tube sooner than expected.

It is now late and I am once again super tired.  I think I should just blame it on my kids and not from being old.  :)  I will try my hardest to get on here tomorrow, or I guess I should say later today since it's after midnight, and finish telling about this surgery and add more pics.