Are you wearing PINK???

Raygen loves to be held upside down, lol!  I have no idea why, but you have to love the smiles. 

Waiting for Zoie to get out from school.  We were watching Elmo's World Happy Holidays.  She loves it and it helps get us in the Christmas spirit. 

Gotta love this girl! 

Wearing Pink today for National Pulse Ox Awareness Day!!!  Lets save some babies by spreading the word.

 

We have a pretty busy weekend and I just keep getting so nervous about next Thursday.  I guess it's a good thing I will be so busy.  I'm excited to go Christmas shopping on Sunday with my mom and sister hopefully that will help me get in the Christmas spirit.  Last year we were at Children's for Christmas.  Raygen was recovering from her Glenn and stent placement.  I am so thankful for being home this year and hopefully we will get a tree soon.  Last year didn't even feel like Christmas and I'd like to make this year feel special.  I just can't do anything till after next week.  I can't get into the mood, or decorate or even think about getting a tree.  My mind is completely on Thursday.  I just want this trip to be easy on my girl, but nothing is ever easy for her.  I want to be cheerful, but it's hard to do when I know my daughter is going to be poked and tubes placed, and stent checked next week.  So much relies on these test and I hope after the tubes my daughter will finally feel better, hear better, and stop pulling out all her hair.

Thank you for all your support and prayers.  We truly are blessed to have so many people that care for our family and our children. 

Developmental Pediatrician

Raygen getting ready to head for Thanksgiving dinner. 

Playing with her dream lite. 

Raygen's first Thanksgiving at home.  It was wonderful. 

Zoie is such a good sister.  She is always playing and showing Raygen attention. 

I love how Raygen looks at her.  Such love. 

 Playing with Aunt Traci and Grandma.

Getting some love from Grandpa.

 

Yesterday we took Raygen to the Developmental Pediatrician for an evaluation.  It was a very interesting appointment.  Dr Tripp, was so nice and I really think he will be a big help later on in Raygen's life.  He thinks right now she is about 8 months old development wise.  I agree.  I do think she is doing more and more each day, so even though she is behind she is still moving forward.  He agrees that we need to have a Neurological check-up before he completes his full evaluation but he was impressed with how well Raygen was doing after all she has been through.  We do have a appointment for a Neurological evaluation on January 10th.  We are going to Seattle Childrens and seeing a stroke specialist.  It's so nerve wracking to think my daughter may have had a stroke somewhere along her journey.  I know her right side weakness has a reason but I really hope it isn't because she has blood clots in her brain or that she had a stroke.  This really is nerve wracking.  Yesterday we also took Raygen back to her Pediatrician and her ears are on their way to becoming infected again so they started her on another antibiotic.  I was really hoping with all my heart we would go there and they would look perfect and we skip right over the tube surgery, but I know that's wishful thinking.  Just like wishing she had a whole heart. 

Next week is her lung test and her ear tube surgery on December 6th.  Please, Please, say a prayer for my girl.  She needs to get an iv without any issues or trauma and everything I hope goes smoothly.  I hope her stent in her heart is okay and I pray that the tube placement is as easy as everyone tells me it is.  The scariest part is can the hospital actually do two procedures in one day????  I guess there is a first time for everything, right?

I hope everyone had a good Turkey day.  I know we did!

Remember to wear Pink on November 39th.

November 30th Lets wear PINK for heart babies.

Raygen's heart defect was discovered before birth, but a lot of babies are not so lucky.  November 30th is Newborn Heart Defect Screening day.  It's such a simple test that can saves so many lives.  It's a little probe (like in the picture above) wrapped around the babies hand or foot and quickly reads their oxygen saturation and heart rate.

Please wear pink on November 30th in honor of this special day for babies.  Let's bring awareness and save lives.  Tell someone who is pregnant to make sure they have their baby's oxygen levels screened before leaving the hospital.  Spread the word. 

For more information please follow the links below.

http://babyheartscreening.com/November30/

http://corasstory.com/

I want to thank Stephanie (http://whenlifehandsyouabrokenheart.blogspot.com/) for letting us know about November 30th and to wear pink.

Remember 1 in every 100 babies are born with a congenital heart defect.  They all have a greater chance of survival if it is discovered early.  This simple test can save so many babies.

Happy Thanksgiving!!!

 First, HAPPY TURKEY DAY!!!! FROM OUR FAMILY TO YOURS!

 The many faces of Raygen.....

 How I love this girl!!  We have so many things to be thankful for this year.  To think this time last year we barely made it home from the hospital to have dinner.  How time flies.  I kinda think of this year as Raygen's first for all holidays.  I think holidays in the hospital don't count.

I don't know if you can see her new bald spot, but she is still into pulling out her hair.  It is so hard to distract her once she starts.  We put hats on her, socks on her hands, give her toys, but still she continues to pull hands full of hair out.  I hope the ear tubes will help.

Today we went to the GI doc and Raygen is 2' 6.51 tall and 23lb 80oz.  Her BMI is now in the normal range, lol!  My girl is thinning out and her weight is now closer to where it should be for her height.  The GI doc said she was happy with Raygen and decided not to change a thing.  We will go back after the first of the year.  A pretty easy appointment.  

We then decided to hit Target which was nice, not too busy.  I also had to go to Safeway, what a nightmare.  There were no carts and it was so crowded.  Now I'm off to do my holiday baking and enjoy my girls.  I hope everyone has a wonderful holiday.

Please pray for Addison's family as they celebrate their first holiday without her and her birthday is also near.  Also please pray for Mia's family, another family that lost their daughter only days before Addison.  With so many losses in the heart community it is hard to celebrate, but it also makes me want to enjoy every single second I have with Raygen because you just never know what all the tomorrows will bring.

Happy Thanksgiving!

November 18th, 2011

One year ago we took Raygen to Children's for what we thought would be her Glenn surgery.  She was suppose to have her trake removed and be on the vent 5 days before her heart surgery to let her stoma heal.  After her Glenn Raygen would then have another surgery to place her trake again.  But as you know things never go as planned and this time it worked out in Raygen's favor. 

The first picture of our daughter without her trake.  It was an amazing, scary day, but so worth it.  She cried for hours after having her trake removed.  I think she scared herself by "hearing herself" cry.  Randy and I must have looked crazy standing in the CICU laughing and crying as our baby was crying, but we had never heard her cry before.  It was one of the greatest moments of my life.  The only other time I heard her cry was before her Norwood.  We spent about 4 days in the hospital and then headed home to heal up before she really did have her Glenn in December of 2011. 

Our sweet girl.  What a journey you have traveled and so much more to go.  I just pray with all my heart that December 6th goes smoothly and in your favor.  We are so lucky to hear you talk and laugh and cry.  You are an amazing girl and I am truly lucky to be blessed by you.

Blood Test Results..

So although we didn't get the lung perfusion test done on Tuesday they were able to get some labs done.  Her kidney function looked good, her electrolytes looked good, but there is one concern with her red blood count.  Her red blood count is high.  Her cardiologist is comfortable with hers being in the 18 range (which is high, but normal for HLHS babies.)  Raygen's was 19.6.  It was down from the last time when it was 20.8 but in July of 2011 it was 16.7 so it is starting to trend higher.  Dr. Park said all we can do right now is watch it and keep her on her aspirin.  We may need to increase her fluid intake because more fluid will help.  Dr. Park also said the only treatment would be more blood draws to remove the extra cells, which would not be easy on our Raygen.  I'm stressing out.  I have no idea on what to do.  Raygen has also picked up a new habit of ripping her hair out.  I will try to post a picture to show you her new little bald spot she gave herself.  I'm thinking she is doing this because of the pressure she feels with her ears, but I'm not sure.  With the holiday's approaching and so much ahead of us I am just scared.  I want Raygen to be okay.  I want everything to run smoothly on December 6th.  I'm so scared right now.  Maybe because Tuesday just replays in my head, but the thought of having to take my daughter back and for her to go to surgery is just gut wrenching.
Please say a small prayer for my girl.  I really feel she needs them.

Horrible....

One word describes how today turned out.....Horrible.  They were unable to get an iv today so we were unable to do the lung perfusion scan.  We had the IV team and let them try 3 times.  Twice in her arm and once in her head.  It was so hard to watch.  I feel so guilty putting my baby through all that trauma and for nothing.  I thought for sure they would be able to get an iv and we only needed it for an hour.  I was so wrong.  One of the hardest things I find about being a heart mom is I am always second guessing myself.  Am I doing the right thing for Raygen?  Is this necessary?  Is she okay?  Am I missing something?  What if?  I could go on and on.  Life is stressful, but when your child has half a heart the stress is triple a hundred million times.  I know for Raygen's future she will have to go through test, be poked, have echo's, ekg's and caths, but when your little baby is screaming after being poked and turning blue and you know begging for you to make it stop, how do I keep doing it?  First, my mother bear kicks in and I want to start slapping hands of people touching my daughter.  I just want to say "Were done.  No lung test and no tubes."  But that is not what is best for Raygen.  I want Raygen to live and for Raygen to live she has to go through the tough things to enjoy the good things.  It's not fair and it's heartbreaking to watch your daughter fight to live everyday and know that she will never be "better."  But were lucky.  Raygen is here and she is living, laughing and smiling and for all that to continue we have to push through.
We came home today sad, hurt, and felt defeated, but we will wake up tomorrow and move on and work out a new plan of action.  Raygen's ears are not getting better and she has to have the lung test to make sure that her stent is supplying enough blood to her lungs.  Both are very important and both very necessary.  At this point the plan is to do both test on December 6th.  She will be sedated before an iv is placed so hopefully they will be able to place one once if she is relaxed.  I don't think anything will make me feel better about having to put my daughter through painful situations and the fact that she is getting older and more aware I feel like our journey is going to get a lot harder.  I wish I could go through all the hard stuff for my daughters.  No one like to see their children in pain.  Right now my baby girl is happy to be home and playing and being herself.  Thank you God for bringing us all home safely today.

Fall Pictures and Prayers for Tomorrow...

Here are a few of the pictures we got of the girls!  I just love them.  Raygen wasn't in the mood but as you can see we got a few smiles out of her.  Thank goodness Zoie had a lot of patience on picture day.

Fall 2012- The girls as Zebras for Halloween.

Zoie 2012

Raygen 2012-18 Months

Our Snoopy girls!

On Saturday we took the girls out for dinner to Red Robin.  Raygen did great. 



Raygen played peek-a-boo barn, and even ate some ranch off of some fries. 

Please say a prayer for our girl tomorrow.  We head to Children's for Raygen's lung perfusion scan.  I hate that she has to have an iv and blood work and then after all that be strapped down to an MRI machine.  I am sick to my stomach and so nervous.  Please pray that it goes smoothly, that were able to comfort Raygen and that the results are good.