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. 

Surgery Day

I just want to give a quick update about Xyler's surgery.  Everything went well today with his surgery.  It was about 6 hours long so our morning went by really slow.  They have already taken out his breathing tube and have been working on weaning him off of oxygen.  He was still sleeping when we left but had woken up a few times to fuss a bit.  It is so nice having his surgery over with and to be on the recovery side now.  We are so grateful that he is doing as well as he is and hope that he continues on this path.  It has been a long day and I am ready to get some sleep so this one will be short but I will try to write a longer post tomorrow and add some pics.  Goodnight.

Surgery Date!!!

Xyler had his MRI on May 24th.  After a long wait of 4 weeks for insurance to approve it I got a call to schedule it but the soonest they could get him in was for June 13th.  This was all because of the type of anesthesia they were going to use on him was only done on Wednesdays at a certain time.  I was devastated since I just want to get this surgery past us.  Poor Xyler is getting sick of his oxygen tube and keeps pulling it out.  I called his cardiologist to see if there was anything they could do.  He changed what kind of anesthesia they would use so then we were able to get him in for his MRI the very next day.  This was an answer to my prayers!

Xyler did really well with the MRI.  He was so cute when they were putting him to sleep.  He fought it at first and then he took a big yawn and made the cutest little noise and then went to sleep.  His body instantly went limp and he seemed like he would be out for a bit.  The nurse took him from Scott's arms and then laid him down on the table for the MRI.  Once he was laid down he instantly woke up and started wiggling like crazy!  Scott and I both couldn't believe he was awake.  He does not like to be laid down on tables since he normally ends up getting poked by needles when he is.  I'm thinking he woke up because he was scared he was going to get a shot.  :)

A week after his MRI I got the call for the date that his surgery was set for, June 15th.  Well, I just got a call today and they have now changed it to June 14th.  We take him in on the 13th for his pre-op.  It seems so crazy that it is only a little over a week away.  There are so many things I need to do to get prepared for it.  It is hard to describe all of the emotions that go through me.  My sister is being a saint and watching my 3 other kids.  It is so hard to be away from my other kids.  We are still trying to figure out where we are going to be staying so I'm stressed over this.  We have options for places that are about 30 minutes away but I have a very hard time with being that far away from Xyler.  It is hard enough that I have to leave him at night but it seems unbearable to be that far away too! 

Right now I think I am just trying to think about how hopefully he will be off of oxygen after this surgery and will fatten up and get more strength.  It is hard to think about the moment when I will have to give him a hug and a kiss and let them take him away from me and into the O.R.  Right now I am just trying to keep that out of my mind but it's not easy.  It is so hard to wait while knowing that they are operating on him and his heart.  I am so thankful for these miraculous doctors and nurses that can do these things.  He is a very strong little boy and I know he is a fighter and will fight through this.  He already showed us this with his first surgery.

Hopefully in a little over a month we will be able to go out somewhere as a family.  We have not been able to do this since Xyler was born.  It will be so nice to take Xyler places and for him to experience more than just home, doctors offices and hospitals.  He will either love it or be a little scared.  I can't wait to see which one.  :)

Waiting....waiting...waiting...

I feel like all I do right now is wait.  We are waiting for insurance to approve Xyler's MRI that needs to be done.  It feels like it is taking forever!  I also feel like we are in limbo until we get his MRI done and get his surgery scheduled.  I don't dare make plans for anything since I have no idea if we will be able to do anything at that time or not.  We are still keeping Xyler at home to make sure he doesn't get sick.  We have also had to keep turning up his oxygen.  If anyone knows a good way to keep his nose from drying out from the O2 I would love to hear it.  I keep doing saling spray but his nose still get's stuffy and bloody.  He is also liking to pull out his O2 tube.  It will be nice when he no longer has to be on O2.

My daughter, Nika, is going to be turning 8 this month.  I just can't believe my kids are getting so old!  Xander just turned 9 in March and now this!  It's crazy!  She is supposed to be getting baptized on June 02, but it is looking like we will have to postpone it since we don't know when Xyler will have his surgery.  We want our whole family to be able to go so this means it will have to wait until after the surgery.  Nika is such a sweetheart and understands.  She found out her friend will be getting baptized the next time so that made Nika very happy to wait until then so they can be baptized the same day.  I'm so grateful for such a sweet and understanding daughter. 

I'm really excited to see how Xavian and Xyler will be as they grow up.  They already seem like they are going to be the best of friends.  Xavian loves to come up to Xyler and tell him hi.  Xyler loves it too and will just laugh at anything Xavian does.  They are so cute together.  Xavian also likes to make sure Xyler has a toy or his blankie all the time.  I'm just hoping they don't fight as much as Xander and Nika do.  Xander and Nika always played a lot when they were little since it was just the two of them, but now they seem to fight ALL of the time!  I just don't know what to do with them.  Having my 4 kids now has made me ask myself how people have more kids and still stay sane!?!  :)  Hopefully one day soon I will feel like I have a good routine down and that I'm going to survive being a mother.  I truly have a lot of respect for my mom and her raising 8 kids. 

Update

Wow!  It has been awhile since I have been on here.  It seems like I never have time to do the things I need to everyday.  I think we need more time in the evening and night so I can get more done and still get some sleep.  :)

I thought I better get on here and write an update on Xyler.  We took him in on the 18th for an echo.  It went well.  He kept waking up so they had to keep giving him more drugs.  He was awake when they were done but still had a dazed look.  He did really well with eating after so we didn't have to stay too long in recovery.  The nice thing was his cardiologist came and talked to us while he was in recovery.

He told us that he was needing the next surgery now.  He also said that he may need to get an MRI since the echo didn't show his left pulmonary artery very well.  His surgeon was out of the country so when he came back then he would decide on if the MRI was needed or not.

Well....I got the call today and they do want an MRI.  I was hoping to be told a surgery date in a couple of days but now one won't be set until after the MRI.  Hopefully they will call soon with a date for it.  Then we will go from there. 

Waiting is hard for me.  I am nervous for Xyler to have his surgery and at the same time I just want it over.  I have been talking to another TOF mom and she has told me how well her daughter did after her second surgery.  I hope Xyler does as well.  Right now he doesn't have the strength to stand on his legs.  When I try he just laughs thinking it's fun.  He also doesn't sit on his own.  He did just start rolling over from his back to his belly.  He has been rolling onto his sides for a long time and likes to sleep on his side.  One night I checked on him and he was on his belly.  He has rolled back a couple of times but all of the other times he gets really mad until you move him back to his back.

I am also looking forward to him not being on oxygen after his next surgery.  I am hoping he will come home without it but know it may take a bit.  I have had to turn his O2 up to 1/2 a liter.  He used to be on 1/4.  This is also a sign that he is outgrowing his shunt and needs the surgery.

Today he is six months old.  Time has gone by fast.  He has added so much joy to our family and we just love him so much!

Family

Last night my daughter and I went to the movie "We Bought A Zoo".  Nika is the one who chose this movie and she made a good choice.   Since we can't get out and do things as a family until it warms up more, Scott and I will take turns on taking some of the kids to a movie or out to dinner.  He normally takes Xander and Xavian, and I take Nika.  It is always a fun girls night out for Nika and I.  I also think it is good for her to get this since she is the only girl and needs some girlie time.  :)  It was a really good, cute movie.  Nika loved it since it had a lot of animals in it and I liked it because of the message it gives.  It is based off of a true story and I just love how hard this dad worked to build something for his family.  A man loses his wife to illness and then struggles with raising his two children.  He quits his job and then buys an old house that has an old zoo that comes with it.  He then works hard with the zoo staff to bring it up to code so that they can open it once again.  During this time he is at a constant battle with his 14year old son, who is having a really hard time since his mother's passing.  His 7 year old daughter loves the zoo and that was the reason why he bought it.  What I loved about this movie was how hard he worked at trying to get his family happy again.  I loved the way the family worked together on getting the zoo ready and how close they become because of it.
I think for anyone who has kids they can relate to this movie on wanting to become closer to their kids and doing more with them.  I think every child is a wonderful miracle and I am so thankful for all 4 of my miracles.  My children may drive me bonkers at times but I still love them with all of my heart!  I think since having Xyler, movies like this touch my heart even more than before.  Before Xyler had his surgery I was plagued with the unknown of whether he was going to come out of the surgery alive or not.  I think as a parent you are always afraid of losing a child but I have never had it come stare me face to face as a possibility as I did that day.  My oldest had to have emergency surgery a couple of years ago and that was terrifying for me!  I wasn't really worried about him not making it through the surgery as I was with Xyler.  Xyler's was on his heart and he had to be put on heart and lung bypass for it.  All I could do was pray that his heart started beating again and that he would make it through it.
I believe in the Plan of Salvation with all of my heart and I knew that I would see Xyler again one day if he didn't make it, but how sad I would have been to have not been able to have more time with him on this earth.  I think this experience has really made me grateful for my family and that we are an Eternal Family.  It has also made me appreciate every second that I get to spend with my family.  That is why this movie touched my heart like it did.  It has made me want to do more things with my family.  To work and play side by side on projects and become a more loving, happy family.  I can relate to what this father was trying to do when he bought the zoo.  It is what I want for my family.  Scott doesn't want to plant a garden this year since he works for a produce company, but I think we should so that we can go out and work in it together as a family.  :)  I am also hoping that we will be able to just get away for a few days after Xyler heals from his next surgery, so that we can just spend some much needed quality time as a family.   
With the thought of Xyler having open heart surgery in a month or two it brings back those same feelings.  I love Xyler so much and he has been such a wonderful little miracle to our family.  I love how he smiles and giggles every time he looks at me.  Even though he is only 5 months old he has already taught our family so much!  He is so strong and I know he will do well.  I know I say this at the end of most of my posts but I am really, truly, so thankful for my family and I love each of them so very much!  I hope everyone will try to spend more time just enjoying the company of your family.  It will truly make you happy.

Xyler's Birth

It has been a while since I have posted anything.  We have had a house full of sickness and we still do!  Poor Xavian has been fevering up from trying to cut 4 teeth at once and now he got the sickness that Scott and I have.  Xyler has gotten it too.  It is always hard on a mom when her child is sick and I am now finding it is even harder when your child has a CHD.  I just hope we get this sickness out of our house and get everyone better asap!  Xyler had a couple of nights where he did not sleep well from being so stuffy.  Thank goodness last night went a lot better.  Hopefully he will get better soon along with the rest of us.

Xyler is almost 5 months old and I just can't believe it!  I guess I am a strange mom since I want time to go by fast and so far it is.  I just want to get Xyler past his next surgery and then I think I will finally tell time to slow down.  I can't help but to think of the night Xyler was born when I think about him being 5 months old. 

I had to get up early to call into the Women's Center to see what time I needed to come in to be induced.  This was at 6:00 AM, Monday morning on October 24th.  When I called they told me that they did not have me on the list for that day.  I couldn't believe it!  my doctor's office had forgotten to call to put me on the list.  I now had to wait for them to call my doctor when he got into his office.  This was a few hours away and seemed like forever!  They were going to induce me due to my platelet count being low.  If it is too low I can't have an epidural and I really, really, really can't emphasize enough just how much I wanted an epidural.  :)

Well......we finally got the call and were able to go in around 2:00 PM.  I was disappointed that it was not earlier.  I was so ready to not be pregnant anymore!  I was worried that I would not have him early enough for our other kids to come see him.  Now looking back I can see that it was meant to be the way that it was.  I don't think it was an accident that my doctor's office forgot to call.  I was meant to have the nurse that I did for a reason and this meant that I had to be their later than I had hoped for.

My labor was the best one I had ever had!  I was only in labor for about 5 hours.  During this time I had 3 different nurses.  The last one I got, Nanci, is the one who was worried about how Xyler was breathing and asked someone to check his oxygen and everything.  What a blessing she was.  Anyway....I am getting ahead of myself.  So, I was able to get an epidural and about an hour after I had gotten it Nanci came and checked me.  I was dilated to a 6.  Only about 15 minutes later I called Nanci back in since I was feeling a lot of pressure.  I was ready to deliver.  Nanci told me my doctor had just called and she had told him how I was only a six.  She then had to go call him to get him there asap.  I'm so glad my doctor lives close to the hospital.  Xyler was ready and wanting to see the world and I was having a hard time trying to hold him back.  My doctor came and hurried to get ready and then 2 small pushes later at 8:45 PM Xyler was here sporting a lot of dark hair and looking super cute.  My doctor says that it was technically only one push since he had to hold Xyler back on the first one since he wasn't fully ready to catch him.  :)

Xyler had the cord wrapped around his neck twice and he was really purple.  They gave him some oxygen while he was getting cleaned up since he wasn't crying very good and sounded like he was struggling a bit to breath.  He pinked up and started to breath and sound fine.  When I held him he seemed fine.  He just layed in my arms and looked up at me with his sweet dark eyes.  The nurse that cleaned him up commented on how he seemed like a mellow baby and he really is.  He ate a bit and then Scott held him.  It was when Scott was holding him that I noticed how noisy he sounded.  My other 3 kids had never sounded so noisy while breathing.  Nanci came in and she noticed it too.  She called a nurse up from NICU to check him out.  That nurse looked at him and said that his coloring looked good and his nostrils weren't flaring so she thought he was ok.  Xyler was still noisy and Nanci still didn't like it.  She made sure to tell the nurse upstairs in the nursery to check him out.  That is another nurse we were blessed to have.

A while after I was moved upstairs to my room the nursery nurse came in to bathe Xyler and then take him away to check him out.  She left with my little Xyler and us thinking everything was fine.  A little bit later she braught him back and I will never forget what she said.  She came up to me and told us that she didn't have good newa.  She then told us about Xyler's oxygen being low and that she heard a murmur in his heart.  There are really no words to describe all the thoughts and feelings that you have when you hear that.  She handed me Xyler so I could hold him one more time and give him a hug and kiss before he was taken to the NICU.  I hugged him tight and kissed him while crying the whole time.  I just couldn't believe my baby who had seemed healthy before had something wrong with his heart.  After she left I just turned to Scott and cried.  I think he was in shock too and didn't quite know what to think.

A little bit later our pediatrician came in to tell us about Xyler.  This was another blessing that our ped. was the doctor on call.  It helped us out a lot to have someone there that we knew and trusted.  He told us that they were going to have an ECHO done on Xyler so that they can see what is wrong and know which hospital he needed to go to.  He talked to us for a bit and after he left I just cried.  I just couldn't believe this was happening.  You hit a moment where you just wonder if you are dreaming, or I guess you just hope that you are.  It was late but I decided to call my mom to let her know that something was wrong and that Scott was not going to be home anytime soon since she was staying at our house watching our other kids.  I was worried about my other kids at home and just wanted my mom to keep an ear out for Xavian.  We just didn't know what was going to happen.

When I was finally able to go down to the NICU, I made sure I walked since I knew that I was not going to let them keep me there after Xyler was taken to a different hospital.  The ECHO showed that he had a hole and that he needed to go to PCMC.  Everything that our doctor had told us was so hard to understand.  It wasn't until we were shown pictures at PCMC that we finally started to understand what was wrong.  After Xyler was life flighted Scott and I hurried home after gathering up my stuff so that we could pack some things for Scott and let my mom know what was going on.

I walked in the door and went straight to my mother's arms and just cried.  I still could not believe what was happening.  We told her what we knew and then hurried to get things packed.  I asked my mom if her and my dad could bring our kids down later so that they could meet their new little brother.  This was very important to me since I had no idea what was going to happen to Xyler.  It was such a scary time for me.  My parents were so good to bring them down and to take care of them.  My mom was so wonderful at taking care of our kids during that time and after.  My sister Heather also took them for the weekend and brought them to the hospital the day of Xyler's surgery.  I'm so thankful for all of their help. 

These are the things I think of when I think of the day Xyler was born.  It was an experience Scott and I will never forget.  It was a very scary time but we are so grateful to have him in our family and doing as well as he is.  He has been such a blessing to our family.  It is so heart warming to see how much our other kids love their baby brother and care about what he is going through.  Xyler always smiles when one of them comes up to him to talk to him.  I have learned that with trials comes great blessings and we have been blessed with many of both.  I love my family so much and am so grateful for each and every one of them!