Brayden's Journey

Friday, July 22, 2011

We made it to Iowa and pictures of Super Hero Brayden!

Yesterday we had the long drive to my hometown in Iowa.  It's a 7 hr drive.  We made it in 8 hrs since we had to stop to change Brayden's drainage tubes and also stop to eat.  Brayden did great on the drive and slept 90% of the time.  Which is good, he needed his rest.

When we got into town, we went over to my sister's for dinner and my grandparents and grandma Pat came over to see us.  We did a dressing change, and both my grandma's started crying when they seen Brayden's back.  He was such a good boy while we did the dressing change, he didn't even cry.  I have posted pictures below, so you can see what the expanders look like and where they are placed. 

Last night he slept from 10:30 till 9 am.  I was going to wake him for his pain meds at 2 am, but I figured if he's sleeping, I would let him sleep and he was such a good stong boy, he slept right through the night.  Today he has been getting mad that he can't scoot around.  He wants to get into everything and he can't right now, so he gets mad and he screams.  How will we keep him from not moving around for the next 2-3 weeks, no clue...wish us luck!

Other then that, he has been such a strong boy and each day he is getting better.  Thank you everyone for praying for Brayden and being so supportive!

This is a picture of an expander before they put it in Brayden.  He has 2 of these in him now and the circle at the end is the port, that is where we stick the needle in once a week to do the fill


Here is Super Hero Brayden before surgery, not sure what is going on

Brayden & mommy before surgery

Brayden & Grandma Rhonda before surgery

 Brayden talking to Mickey Mouse that mommy & daddy got him before surgery

Grandpa giving Brayden some kisses before surgery

 Few hours after surgery, talking to Mickey Mouse again! Happy boy :)
 Brayden with his toys in his crib after surgery, Boo Boo the monkey Grandma & Grandpa got him

Mommy's yummy hospital food!
 Brayden feeding himself, yes, he's on his back right after surgery
 Brayden & Boo Boo
 Brayden day after surgery in his Super Hero cape ready to leave the hospital
 Brayden & I in Chicago cubs shirts, ready for the drive to Iowa
 Brayden's incesions, above the nevus on the left & right is the 2 expanders.  On the bottom above the diaper line is the ports.  And on the side is the drainage tubes that we have to change every 4 hours for 10 days.
 This side has 80 cc's of saline inside the expander


Wednesday, July 20, 2011

Night of surgery

Yesterday and last night Brayden slept on his back the whole time and it didn't seem to bother him.  I was suprised since that was where he just had surgery. It was good that it didn't seem to bother him. He slept from 11:30 last night until 5 am, then I heard him crying alittle, so the nurse came in to give him pain meds.  After that he went back to sleep until 7:30 when Dr. Bauer's nurse came in to do Brayden's 1st dressing change. Which he did not like this, he cried so hard.  We had to sit him up and I tried to distract him while Grandma watched what the nurse was doing, but Brayden didn't seem to stop crying.

After the nurse did the dressing change and left, we gave him baby food for the 1st time and he watched his favorite, Mickey Mouse Club on tv and he was a happy little guy :)

This morning, his nevus buddy Teddy who is 2 and his parents came in our room to say hello.  Was nice to talk to them for awhile and see them. 

Now we are getting ready to leave the hospital, hopefully as the day goes by, Brayden will be in less and less pain.  He is on 2 pain meds and we will go to the pharmacy to pick those up when we leave the hospital.  Then the rest of the day we might do some shopping if Brayden is feeling ok.

At 3:00 today, we will go to Dr. Bauer's office for a visit, they want to make sure Brayden is doing ok before we drive the 7 hrs back to Iowa tomorrow. 

Thank you everyone for your support ! Brayden is a tough little boy and I am very proud of him and how strong he is being right now.

Tuesday, July 19, 2011

Super Hero Brayden took his1st surgery like a pro

This morning we woke up and headed to the hospital for Brayden's 1st surgery for tissue expanders at 11 am.  Was suppose to be at 11:45 but Dr. Bauer took him back 45 minutes early, which was nice! When we arrived to the hospital we went into a pre surgery room where Brayden put on his Super Hero cape that Grandma Vauble made for him, pictures to follow soon! Then before we know it, was time to go back to the holding room. 

This is where we said good bye to Grandma & GrandpaVauble and Brayden and I went to the room together.  That is where we met Dr. Bauer and the other staff that would be working on Brayden.  They were all super nice to us.  Then it was time to give Brayden away to the nurses and I was to go sit in the waiting room, of course this was very hard to leave him, but I knew he would be in good hands and everything would be ok.

30 minutes into waiting, then nurse called the waiting room to talk to me, I got scared and thought something went wrong.  But she just wanted to tell me things were going great and not to worry.  We thought that was nice for them to give us an update.

When we were in the waiting room we started talking to another nevus Grandma and she was telling us how wonderful Dr. Bauer is and this is her grandson, Teddy's 6th surgery and everytime he does great.  So that made us feel better and also made the time pass quickly.

Next thing you know, the 1 1/2 was up and Dr. Bauer was calling us in to a conference room and he said that surgery went great and that in one side he got 100 cc's of saline and the other he got 80 cc's of saline.  The reason why he puts saline in after he puts in the expanders is because he wants the expanders to lie flat when they are inside.  So we were happy that he put that much in, were off to a great start!

Then it was time for me to go to the recovery room to see Brayden.  As I put on the scrubs outside the room, I could hear Brayden crying.  Just broke my heart! When I walked in a nurse was rocking him and he was crying so hard.  I was thinking, was he in pain, scared or was it from the drugs wearing off?

I switched spots with the nurse and the moment I held Brayden, I started crying with him,  I just hate that he is in pain and I can't help my little baby.  I rocked him for over an hour and yes, my arm and legs fell asleep ;) But it was worth it.  Even my parents came to recovery to see Brayden.  When he was in recovery, he had 6 oz. of clear liquids.  Which that helped him for awhile and he wasn't so fussy.  But he ws hungry and he wanted his milk, but he couldn't have that yet.

When our room was better, we were out of recovery.  When Brayden got to his room, he was not happy.  Grandma just held him and they both cried, he looked like he was in so much pain.  After awhile, the nurse said he can FINALLY have milk again, at this point it has been 15 hrs since he had any, he was beyond over due.  He downed 9 oz. of milk like it was nothing, which keep in mind he normally only has 6 oz. at a time. 

Since Geoffrey can't be here with us, we called him on the web cam, even though Brayden was fussy, Brayden got to hear his daddy's voice and see him.  He was fussy for awhile and finally he went to sleep in Grandma's arms.

Then we moved him to his crib and he woke up and was crying for alittle bit...then next thing you know, he gave us a huge SMILE...which melted my heart, how I loved to see that again! Then he was talking and playing with sofie and his new Mickey Mouse that daddy got him. 

I was amazed after 4 hrs out of surgery, he was his same happy self.  The rest of the night he has been doing good, eating, playing, talking and even eating puffs right now.  He is such a tropper and such a strong little super hero!

Tonight, I will be staying overnight and so will be my mom with Brayden.  Grandpa just went back to the hotel to get a good night sleep.

I will post pictures once I get my camera cord of our journey.  I will also post more as the days go by.
Tomorrow if he's doing good, which I'm sure he will be, we will leave the hospital in the morning.  After we leave, we will go to Dr. Bauer's office and they will do the 1st dressing change for us and at that point we will see the expanders.

Today is the hardest day, for Brayden and for all of us and now he is doing great and being him self, which makes me feel better about all of this.  Thank you everyone for thinking and praying for Brayden!!

Tuesday, July 12, 2011

1 week till surgery!

Can't believe that Brayden's surgery is 1 week away now, where does the time go?! I am ready to start this process and get his 1st surgery over with.  Brayden & I fly out on Sunday at 11:25 am and arrive in Chicago at 4:45 p.m and my parents will be at the airport to pick us up. This is a 3 1/2 hr flight, I sure hope Brayden is good and hopefully since it's his nap time, he will take a nap on the flight.

I am bummed that Geoffrey can't join us and be with us, but it's hard with both of us taking time off work and of course, the additional plane ticket we would have had to buy.  Geoffrey will be going for his 2nd surgery on October 10th and I will stay behind. 

On Monday we have a pre-op apt. with the dr and nurse to go over everything that will be happening on Tuesday.  They will tell us on Monday what time surgery will be on Tuesday morning.  Hopefully Brayden is the youngest one, that way he can go first.  Especially since he won't be able to eat after a certain time Monday night, he won't be a happy camper if he has to wait too long for food again.

Tuesday is surgery day and Brayden will be staying the night in the hospital, that way the staff can make sure he is doing ok.  Then the next morning, we should be able to go back to the hotel room.  If everything is looking good, on Thursday we will drive back to Iowa until July 31st.  Then on the 31st we have to drive back to Chicago because on August 1st, we go to the doctor at 9:30 am for them to show me how to do his 1st fill. 

We fly back to Phoenix on August 1st at 5:30 p.m. Every week after that, Geoffrey & I will be doing Brayden's fills on his expanders, over the 12 weeks, each week they will slowly get larger. 

Brayden is growing so fast! He is already 20 pounds 3 ounces and 29 inches long!  He is 60% for his weight and 90% for his height.  Guess he might be a tall boy someday :) He started "scooting" a few weeks ago and each day he is getting faster and faster!


8 months old already!


And he's off!

All ready for Iowa ;) Thanks Great Grandma Vauble for the overalls!

Please keep Brayden in your prayers next week on Tuesday when he has his surgery.  Thank you everyone for the support and if you still want to order a cook book, we still have plenty left.  Just let me know :)

Saturday, June 18, 2011

1 month until Chicago, means 1 month till surgery

July 19th will be here before we know it.  Can't believe Brayden will be having his 1st tissue expander surgery next month.  Brayden and mommy will be flying to Chicago on July 17th, then the following day we will do a pre-op appointment with Dr. Bauer to go over things that will be happening the day of surgery.

Bright and early on July 19th, Brayden will be going in for surgery.  It should only last a few hours and if everything is good, back to the hotel we will go.  We are lucky that my parents live in Iowa and they will drive to Chicago to be with us, that saves money on renting a car. Also for this stay my dad cashed in some of his points with his timeshare, so we can stay at a hotel.  So that helps us out alot as well. 

In the mean time Brayden needs to stay healthy, that way his surgery doesn't get postponed.  So that means no playing with his friends for the next month. I also want to keep him out of the swimming pool, just in case he would get some kind of infection.  Better safe then sorry!

When Brayden goes for surgery, they will be putting in 2 tissue expanders on his flanks.  One on each side and over the 12 weeks that he has his tissue expanders in, we will fill each expander with saline.  Each week the expanders will get bigger and bigger and stretching his "good, normal" skin.  Then after the 12 weeks which is October 11th, back to Chicago Brayden & daddy go to get the expanders removed and Dr. Bauer will stretch the good skin down and cut out the nevus skin and stitch the skin and let it heal for 4 months.  Then we repeat all over again 2 more times.  This is a work in progress, so I can't wait to get it started next month.  We have a long road ahead of us, but with the amazing talent that Dr. Bauer has, I am trusting him with Brayden and I know he will be fine. 

As always please continue to pray for Brayden and if you haven't bought a cookbook yet, please let me know.  You can also buy them from our blog.  We really appreciate all the support we have been getting, it's just amazing how people come together in time of need.

Some of you that hasn't seen Brayden in person, doesn't know what his nevus looks like.  Since surgery is around the corner, here are some before pictures. 


Brayden will get 2 tissue expanders by his flanks, one on each side




Tuesday, June 7, 2011

Big THANK YOU to Stephanie Zeiders & her friends

It's just amazing how supportive people have been with Brayden.  Last night Geoffrey's co-worker Stephanie stopped over with a bunch of items that she gathered from her bible group and other close friends.  We were so amazed of all the things she brought over.  We would like to thank everyone that have donated towards Brayden.  It means the world to us and thank you for having such kind hearts!



Here are the items that Stephanie brought over last night


Brayden so excited for all the support he has!


Brayden in the outfit someone donated...so cute!


Such a big boy now, he can hold his own bottle!


 Brayden with the frog someone gave him, he loves it!

Thursday, June 2, 2011

7 months old! And more cookbooks are here!

Yesterday 340 more cookbooks arrived! So please let me know if you would like some.  I have half the cookbooks in Arizona and half in Iowa.  So if you live in Iowa, my mom can give you the cookbook.  We can also ship anywhere in the United States.

When we first ordered our cookbooks, we thought 300 was a lot and we didn't know we would have such a great support system and that people would be so caring and kind and buy them.  But we were WRONG and everyone has been so supportive and helping us out with buying cookbooks and donating to us.  It means the world to us that people are behind us and Brayden. 

One of Geoffrey's co-workers, Stephanie has been amazing and she belongs to a bible study group and they have all been buying cookbooks and also putting together items for Brayden, like diapers, wipes, formula, etc. to help us out.  One lady, named Pam has been so kind and is donating a round trip airfare to Chicago for us.  So kind of her to do that and especially since she hasn't even met us yet.  Just amazing to Geoffrey & I how supportive people have been, family & friends that know us and even people who have never met us. 

Next month Brayden & I will be going to Chicago on July 17th for his 1st tissue expander surgery, can't believe it's almost here! I am ready to start this process, but not excited about my baby going under and having surgery and having the expanders in for 12 weeks.  It has to be done and I know he will be in good hands since he is going to the top doctor in the world for this, Dr. Bauer!

In the mean time, my little guy needs to get better.  I got sick last week with the flu and then of course, I passed it along to Brayden.  He has been sick for a week now, just wish he would get better.  At least if he's going to be sick, I'm glad it's now and not next month right before he his surgery. 

Yesterday Brayden turned 7 months old! Where is the time going?! He is becoming such a big boy, he feeds himself puffs now, he knows how to open his mouth and eat baby food and he knows how to melt our hearts.  He is such a joy to be around and I am so blessed to have this little guy as my son.  He still isn't crawling, which is fine by me, that way I know where he is and he's not getting into everything :)