Happy Mother's Day!

This Mother's Day is going to be one that I will never forget.  On Friday Tayton had to go back to Primary Childrens for surgery #6.  We had to be there at 2:15 in the afternoon and we got there and they finally took him back for surgery at 6:30 p.m.  I felt so bad for him because he couldn't eat but he was so good about it and didn't complain too much.  His surgery went pretty good, they ended up removing portions of his vocal chords to help him breathe.  He swelled up again and had to stay on the ventilator overnight and back in the ICU.  Then they took him off the ventilator and he had root beer slushies and played legos.  They moved him out of the ICU and on to the CSU (Children's surgical unit.)  He played video games and dad helped him with more legos.  He finally got to eat on Saturday night and had 3 tacos, corn, root beer float, raspberry smoothie, and a Gatorade.  He was one hungry boy.

This morning he had some fruit loops and he was still hungry so he ordered another taco for breakfast.  That kid is so funny, he loves tacos.  He did really great and was able to come home today on Mother's Day.  What an amazing present to me, I was so excited.

 Here is Tayton leaving Primary Childrens.  We thought we would get to have a summer free of surgeries, but his next one is going to be end of June or beginning of July.  It will be about the same as the last two surgeries.  He just has to do a little at a time and hopefully one day he will breathe normal again.  I just feel like there is no light at the end of the tunnel, but our other options are a tracheotomy or the crazy surgery of opening his throat and replacing it with rib cartilage and that is a horrible surgery and I don't want to do that unless these other surgeries don't work.  So we will just keep coming back to Primary Children's as long as it takes for more surgeries until he doesn't need anymore.

Here he is when we got home, he is exhausted but doing pretty good.  He isn't supposed to talk for two weeks.  I don't know how that is going to work but we will try our best.  Tayton has a soft whisper for a voice right now but I feel it will get stronger and louder over then next few weeks.  I'll let you know.

My mom and mother in-law helped me out so much this time.  I feel pretty bad that it had to happen on Mother's Day weekend, but that is what moms do they take care of their kids.  My mother in-law and sister-in-law watched Tanna on Friday and she had a blast with them.  Thanks Cory and Kayla, I love you guys!

My mom was so sweet to help me, she stayed with Blakeli at the Ronald McDonald house so I could go back and forth between Tayton and Blakeli.  I was so sad to have to choose between the two kids, but it worked out really nice. This time we stayed in their other house.  It was this old, victorian style home.  I kept joking with my mom that I got her a nights stay in a bed and breakfast!  Then my poor mom left on Saturday and took Tanna.  Tanna threw up quite a few times and my amazing mother had to clean up my daughters throw-up.  (Happy Mother's Day mom!)    

On my first Mothers Day ever being a mom, the only thing I wanted was a break.  I wanted a day to myself with no kids.  This Mother's Day is a lot different.  I appreciate my  kids so much more.  Maybe that is why I am going through this trial, so I can grow and become a better mother.  There is no other place I would rather be then taking care of my new baby girl, my sickly throw-up 4 yr old, and my recovering from surgery 8 year old.  I am so blessed to be a mom to my three beautiful, amazing children.  I thank my Father in Heaven every night that I get to be their mom.  The past six months have been the hardest six months of my life but I have learned so much and I don't know how else I could have grown.  

Being a mother is the hardest, hardest job in the world.  Satan really knows how to tear you apart to make you feel like you are worthless.  I have struggled so much blaming myself.  I feel like if I would have been a better mother and just picked my son up from school on November 15th, that none of this would have happened.  But it did happen and I am a better mom for having gone through this.  I know Satan tries to tear mother's down because they are the heart of the home and if he can ruin the home he has won.  No matter what your trial may be, don't let Satan win.  Mother's are so important, and I am so happy to have such amazing mother's in my life and to be a mother.  I hope all you mother's out there know how special you really are and how much of a difference you make in your children's lives! 

  Happy Mother's Day!!!!!!!!!!  

Happy Birthday Tayton!

On Saturday May, 4th we had such a special day.  We celebrated Tayton's 8th birthday!

He was baptized on his birthday and it was so special.

Here he is with dad before the baptism.  Our stake normally has baptisms on the 2nd Saturday of each month, but Tayton was having surgery and wouldn't be able to go to his so our stake let us have our own private baptism and I was so thankful!  

He didn't want anyone to see his scars, so we kept his burn gloves on.

                                Both grandmas gave such sweet talks and he really loved them.

 Here we are all together.  It was so fun having our family there, their support has been so amazing during these last six months.  It was great we all got to share this special day together.

                      After the baptism we also blessed this beautiful baby girl!  It was a day that I will
                                  never forget.  I am so thankful for these precious children.

My sweet sister-in-law Kayla even came!  She lives in Alabama and came just for this.  It was so fun to see her and I am so happy she was here!  We just love her!

Levi's grandparents came from Preston, ID.  It was so great to have them there.

  After the baptism and blessing it was party time.  Tayton's birthday is on Star Wars Day.  It is an official day, May the 4th be with you.  Get it, we found this out a couple of years ago and Tayton says it is the best day ever to have a birthday!

                    Levi's cousin is so talented and made Tayton this R2D2 cake.  He loved it!

 

                                                                             Opening presents!

 It was such a special day and so happy we got to celebrate.  I love this little guy so much and I can't believe he is 8 years old now.  Where has the time gone?   This was him 8 years ago.  Love you Tayton and Happy Birthday!

She's here!

Sorry I haven't posted in a while but I've been a little busy cuddling this cute lil girl!

 Blakeli Rose Winward was born on April 11th, at 4:49 p.m..  She weighed in at a whopping 6lbs 12oz, and was 19 inches long.  She was the smallest of all three of my kiddos.  She has grown a lot in the past two weeks and she now weighs 7lbs 6oz, and is 21 inches.  She is the sweetest baby there is and I am so in love with her.

Tanna is such a great big sister.  She loves little miss Blakeli so much and always wants to hold her and is always kissing her.  I'm trying to have Tanna not kiss Blakeli when she is sleeping but it isn't working that well.  She just wants to kiss her all day long, it's pretty cute.  Not the best picture of Tayton, but he loves her so much and you can tell she loves him back.  She has a big smile whenever he holds her and Tayton even puts her to sleep for me.  He is a huge help and it is fun to see them together.  I thank my Heavenly Father every day for these three miracles that he has given me.  I cherish every moment I can with them.

 She makes some of the cutest faces and she also has some pretty serious ones.  She is such an easy baby and is exactly what I needed.

 Here is our first family photo, and below is me walking in to the Brigham City Hospital.  It took a lot for me to put these beautiful photos of me up here.  But this is my own little journal and I love reading our old posts and I want to remember this day.

I don't know why a lot of people complain about the Brigham City Hospital.  I loved having Blakeli there.  They took such good care of me and everyone was amazing.  I would recommend having a baby here any day.  It was so nice to actually have a positive experience at a hospital for a change.  I was so nervous when I was going in to have Blakeli.  I was even in tears talking to the nurse when I went in.  I was just so scared something bad would happen and Blakeli would end up in the NICU, and emotionally I couldn't have handled that.  The nurse and my doctor calmed me down and everything went perfect.  And even all the other times we have gone to the ER the staff there has always been amazing and taken such good care of us. So thank you to everyone in the Brigham Hospital who has helped our family.  

 This little guy is doing great.  I took him back to school and this is a picture from his first day coming home.  He was asleep within 2 minutes of leaving the school.  He loves being back in school and he is so much happier.  (I don't think he liked his homeschooling teacher as much as he likes his current teacher, she might have more patience then me.)  He did get a slight cold from school and has had to miss a few days because he breathing is rough and he had to go back on steroids to help.  It's a hard balance to find.  Physically I feel like I need to keep him home so he doesn't get sick, but emotionally he does so much better getting back to his routine.  His next surgery is coming up on May 10th so hopefully that will help even more with his airway.  And guess who's birthday it is on Saturday, yep it's Tayton's!!!!!!!!!!!!!!!!!!!!!!  We are so excited to celebrate his birthday and we have some amazing things planned.  You will have to wait until my next post to see what we do.  But it is going to be such a special day and I can't wait to celebrate.

Todd Morrison Alumni Tournament!

We had such a fun weekend and it was so nice to get out of the house and just enjoy life.  This weekend was the 20th Todd Morrison Alumni Tournament.  Every year they pick a child who has had a life threatening accident or illness and they donate the money raised to help out the family.  This year we were the recipients, I never wanted to be on this side of it but we are so grateful for all the support we have.  We were able to meet so many wonderful people and it was fun to go back to our high school and see a lot of familiar faces.  Tayton loved watching the basketball games but his favorite thing was a surprise visit from his best buddy!

Big Blue!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

They had Tayton turn around and Big Blue was headed towards him.  Tayton just ran and jumped in his arms, it was so sweet.  I couldn't see the look on his face because I was behind him but everyone said it was priceless.  We love Big Blue so much and can't believe he came to visit Tayton again.  It was so much fun.  I am so thankful for all the new friends that we made at the tournament.  I hope we can help them out for future tournaments and help pay it forward.

Two years ago the tournament was for my new friend Tessie and her sweet boy Dakota.  She is such an amazing person and has helped me so much through this.  I found her blog from the tournament two years before and have always followed her blog but I never commented because I never really knew what to say.  But so many times when we were in the hospital I thought of her and her struggles and how she always had a positive attitude.  I would read her blog in the hospital and it helped me so many times just to make it through the day.  I am so glad I got to meet her and her sweet family.



Monday we had two doctor apts.  The first was at the burn unit and we got really great news.  They said Taytons burns are looking great and as long as we keep up on our physical therapy they won't need to see him for a couple of months.  We need to order some more burn gloves and things like that but they said we could just do that over the phone.  Tayton was really excited that his burns were healing.  Then we had to go into the burn center and say hi to some of our favorite people!  It is amazing the friendships that you make.  I have loved every nurse and doctor in the burn unit.  They are all such amazing people and we love to see them whenever we get the chance!

Then after the burn unit we headed over to Primary Childrens.  Tayton had his post op check-up with the ENT.  He said the swelling in his airway had gone down and he thinks his airway is stable enough that we can take him out of the house.  He is still planning to do the same operation in May but that should open his airway even more.  Then after surgery in May he doesn't want to operate at all during the entire summer.  He said we will give him a break.  He also said sometimes when you do to much it can cause more scarring and other problems so we will see where he is at in fall, but that was great news to hear that we get to enjoy our summer with no surgeries!!!!!!!!!!!!!!!!!!!!

I'm still a bit nervous to take him out a ton because it is weird going from one extreme to another.  Plus we are going to have our baby in 8 days and I don't want to take her out all the time, but we were all going a little crazy being cooped up so we can't wait for picnics in the park, going to see a movie, or just having some friends come over and play.

Tayton wanted to go back to school so yesterday so we went in the afternoon for a couple of hours.  We had to hurry and run to the store Monday night to find him a backpack because the one he had earlier all the straps were burned and he didn't want to use it.  I didn't blame him so we went and found him a new backpack.  He said he wanted me to stay with him at school so I did for about two hours then I had to run to Walmart to pick up a prescription and he said it was fine if I left.  I was so nervous to leave him, it felt like dropping him off at school for the first time ever, but I did it and I didn't cry!  I was so proud of myself.  I am struggling with letting this boy out of my sight.  We just came so close to loosing him and he is everything to me.  Hopefully with time I can let him be more independent again.  He said his favorite part was seeing his friends again.  I know school is going to help him so much but I am not sure if he is up to going all day.  We still have to do physical therapy a lot and he can't go that long in-between so I am not sure what to do.  I am thinking about just stopping in at lunch time and doing a quick session of physical therapy and then making sure he gets a really good session before and after school.  Not sure how that will work with a new baby but we will figure it out.

I heard him talking to some kids in his class and they wanted to see his burns.  He showed them a tiny bit and I was so impressed.  Tayton hates talking about the fire and he said he didn't want anyone to see his burns.  The kids were great and said the burns looked like they hurt.  Then they were asking why he had to wear his gloves and wrist brace and he just answered them like it was no big deal.  Before people would ask him things and he would just get mad and shut down and not say a word.     So that was a huge step for him and I am so proud of him!

Well hopefully my next post is about our new baby girl.  I am so excited and nervous all at the same time.  I know she is just what our family needs.  I can't wait to hold my little Blakeli in 8 days!  (Also I can't wait for the swelling in my feet and hands to go away and to sleep on my stomach again.)  Overall this has been the easiest pregnancy despite everything else that has been going on, so I shouldn't complain.  The kids are getting really excited to see her but have no desire to help change dirty diapers.  It is funny to see their reactions.    

Surgery #4 and #5

We got to come home yesterday from Primary Childrens.  I will try my best to explain how things went.  We took Tayton on Friday morning for his 4th surgery 4 months exactly after the fire accident.  He was in pretty good spirits when we went in because he got a new lego set and I told him he could put it together after surgery.  We sat in the room and played some video games before surgery.  For the first time I didn't cry, I was so excited for this surgery and I thought it was going to be a magic fix and he would be so much better after the surgery.  We got a call from the OR saying everything went phenominal.  I was so excited, I felt such a relief that this was going to help us get back to a normal life.  Then the doctor came in the waiting room and took us back to the consultation room.  Then he told me Tayton was still on the dreaded ventilator and my hopes were crushed.  I don't remember a lot of what he told me after because a flood of horrible emotions came rushing back.  All I remember really is the removed some scar tissue but he was having lots of swelling issues.  So then the doctor said Tayton was in the ICU and we could see him in a little while.  We sat back down and I just cried.  After waiting and waiting I asked the receptionist how much longer it would be until we could see Tayton.  She called the nurses in his room and they were having a hard time keeping him sedated on the medication.  (That was really no surprise to me because of all the previous issues we have had before with my super hero son.)  I explained to the nurse about my son being a super hero with medicine and he chews through it like you couldn't imagine so she let us come back.  Here is our little guy on Friday back on the ventilator.

 The doctor had told me this could happen but I thought for sure there is no way that it could happen again.  He looks much better this time on the ventilator then he did before.  It was really hard for me, I just kept re-living everything that happened at the burn unit.  I just thought that after 4 months after the accident we had come so far and now we were back to square one again on the ventilator.  There was amazing staff there at Primary Children's and they were really optimistic and were able to help me through it.  They ended up putting him on the paralyzing medicine again to keep him from moving and damaging his throat even more.  He stayed calm for the most part but did have his crazy thrashing moments every now and then.

Saturday they were going to try to take him off the ventilator early in the morning but there were so many "code blues" going off in the PICU that the doctors were just way to busy.  They apologized to us but I didn't care at all.  My son was stable and it was ok for him to stay on the ventilator for a couple of extra hours if it meant that other children were getting the help they needed.  Our doctor came in and decided he wanted to take Tayton back to the OR for his 5th surgery.  He thought it would be safer there in case they removed the ventilator and he needed it back in.  This time in surgery he dilated his airway and Tayton was strong enough to be taken off the ventilator.

I gave the doctor a big hug when he said he was able to get off and I think I freaked the doctor out because he is not a hug type of doctor.  I think our doctor is amazing at what he does but his social skill aren't my favorite.  He also said Taytons airway is about the size of a 1-2 year old child.  There is scar tissue all over which has made it so narrow.  We are going to have to wait and see how well the surgeries worked because there was still a lot of swelling in his airway from the procedures and it can take a few weeks for the swelling to go down.  He is going to do another dilation on his airway May 10th and hopefully that will open his airway a little more.  Our doctor said it will never get back to a normal 7 yr old airway, but he is hoping for maybe a 4-5 yr old airway.  If these surgeries don't work there is another crazy surgery that we could do but it is really complicated and scares me a ton, and I hope we don't have to go that route.After the surgery we went back to the ICU and Tayton was doing ok.  All he wanted to do was open his new box of legos.  It made me so happy to see him wanting legos.  He couldn't talk but he sure made it known what he wanted.

Soon he was off his oxygen and doing much better.  He isn't supposed to talk for a week but he still does.  His voice is really hoarse but I am pretty sure it will get better over the next few weeks.

 Saturday night his oxygen levels got pretty low again so we had to put him back on oxygen.  They brought him some fun things to do.  He still has MRSA (staff infection) so he isn't allowed to go to the toy room or do a lot of the fun things they offer there but they still did a lot to make our stay as best as it could be.

 By Sunday he was done.  He started shutting down and didn't want to do anything.  He seemed sad all the time, didn't want to do music therapy, physical therapy, or even eat.  He kind of sat there staring at the wall in shut down mode.  That is when I knew it was time to go home.  I made it clear to the doctors that we needed to leave soon.  We all agreed to stay one more night to make sure he was safe but they all thought he would do so much better at home.  Here is his done face.

 Before we could leave physical therapy wanted to see him.  So on Monday we went to the PT gym.  He didn't really cooperate but he did find the bike somewhat fun.  I was so glad we went down to the gym, there were so many other children there that have it so much harder then we do.  Three kids there weren't able to walk at all.  It made me appreciate what we have.  Even though we are going through this crazy trial and it is the hardest thing I have ever done, there are so many children at that hospital that are going through harder things.  Tayton will definitely have a lifetime of problems from this accident but he can still have an amazing life.  He is such a strong kid and has made it through more things in the past four months than most people can handle in their lifetime.  This may just set us back a while but he is such an amazing kid and is going to do some amazing things with his life.  I am so glad I get to witness it.  I am so proud every day to be my kids mom.  My children mean the world to me and it hurts to see him go through all this and I wish I could just take it all away from him.  But he is so strong and will make it through this.  I love my super hero son!

 So basically now we are on lock-down again.  He can't get sick or it will cause major issues with such a small airway.  I am praying this next surgery in May gives him a large enough airway that he can do normal things, like walk up the stairs without huffing and puffing.  Go to the park and play, run around, and just do fun kid stuff.  He is doing better at home now but still has his shut-down moments.  He is back on crazy steroids so he gets pretty mad at the smallest things.  But overall he is doing ok and I think in a few days he will be a lot happier.  Thanks for reading and if you think I am a little nutty (which I am) just remember I am 37 weeks pregnant.  I am trying my best to stay positive for my beautiful boy.