Yes. My ears are still infected.

So YES, Raygen still has ear infections.  We are on another round of antibiotics for 10 days.  If this doesn't clear up her infection then they will go to a medicine that is a shot that she has to get every other day for 3 days so I am praying that this medicine will clear it up. 

For the most part she seems to be in good spirits.  She is playing and chatting away but she still sounds very congested and has a tough time sleeping.  Of course congestion is always worse at night when your laying down and since she has outgrown her sleeping wedge she is actually sleeping flat now.  I think she likes that she is able to toss and turn at night.  The good part is that Raygen's heart rate is still good and her oxygen levels have still been in the high 80's which is fantastic so thank God for that.  If her oxygen was to drop below 75 we would be heading to Children's.  I might take her if it was to stay around 77 for too long as well.

I have been keeping up with the tyenol hoping that helps a little.  Otherwise we have just been doing our normal routine.  I do have to watch her a little more closely because the medicine she is on is strong and tends to wipe out everything so I am watching for diaper rash and keeping a close eye on her g-tube which is already a little red and irritated.  I'm hoping this medicine could clear that up as well. 

Our next step after the shots would be ENT.  I really don't want to put her through another procedure with getting tubes but I would love for her to feel better, off antibiotics.

Zoie is so sweet.  She has been such a good helper since she has been out of school. 

We are still going to do everything we planned this weekend.  Birthday party tomorrow and Sunday... 

the Tacoma Rainier's Game.  I know Raygen will enjoy herself.  Raygen's health and safety are always our number one priority so of course if we feel she is getting worse we will not go to either event but I guess we will just wait and see.

I hope to have some fun pictures to post this weekend!

Jamie's Heart Foundation

Thanks to a wonderful foundation we are able to go to the Tacoma's Rainier's Game on Sunday at no cost to us. 

I am so excited to meet and talk with other CHD families and help spread awareness about CHD.  Jamie's Heart Foundation even gave us meal vouchers.  Bless their hearts.  It is a wonderful foundation that helps out so many families with CHD children.  I encourage you to check out their website @ www.Jamiesheart.org

Read about their beautiful daughter and how they honor her memory with their foundation. 

I encourage you if you are ever looking for a place or foundation to donate to, to remember Jamie's Heart.  When I was first told about Raygen's heart (when I was pregnant) Jamie's heart foundation gave me a beautiful blanket with hearts all over it.  They offered encouragement and hope at the very beginning stages of our journey and continue to now.   

Please say a prayer for our Raygen.  I believe her ear infections are back full force.  We have a doctor appointment at 4 today so I will know soon enough.  She had a horrible night.  She just couldn't get comfy to sleep and she was so congested. 

I pray this little girl is happy and healthy so she can go and enjoy the game on Sunday.

Raygen's 1st Hike!

 We decided to jump at a Sunday that was some what nice and go for a hike at Mount Rainier.

 Daddy and Raygen.

 Raygen really enjoyed herself.

 She was kicking her feet and talking pretty much the whole time.

 She does so awesome in her stroller.

 She is such a good baby.

 We did have to cross this bridge which made me so nervous.  Something about my baby crossing a bridge above cold, fast moving water, terrifies me.

Then it was nap time. 

She did really good on the ride home. 

We had a really nice relaxing Sunday.  It was Bryden's last day with us before she headed back to Texas today so it was nice to spend some time together.  We missed Zoie, but she comes home from Bible camp today and I'm so excited to see her.  Next weekend we have a birthday party on Saturday then on Sunday we are going to the Tacoma Rainier's game to help spread awareness for CHD.  I'm so excited to see all our CHD friends.  I hope it's sunny out.

June 23rd 2011

One year ago this weekend I was FINALLY able to bring my beautiful daughter home for the first time.  Raygen you were 3 months old.  I know your father and I were so excited but also terrified.  We had so many unknowns.  You had your trach at the time so I did know we were going to have nursing which was one sense a relief but another sense a disappointment because I knew I couldn't, even then, care for you all on my own.

You look so small in these pictures.  How my heart melts looking back.  I can't look at all the pictures and see what you had to go through, even now they break my heart.  I have so many regrets and wish I would have known more to be a better advocate for you.  You are so amazing.  What you have been through in one year no one could imagine.  I am so blessed to have you and be your mom.  I must have done something right in my life for God to bless me with you. 

Raygen Marie you have forever changed me.  You make me and our family complete. You make me a better person.  You help me live for today & cherish the little things.  You have brought me closer to God.  I thank him everyday for you and your sister.  I truly know how lucky I am that you are here.  I know we came so close to loosing you and I know you truly our a miracle.  You have taught us to find joy in every journey no matter where it leads.

I love you so much words do not describe what I feel when I look into your beautiful big green eyes.  You are wise beyond your year and I feel like you end up teaching me something everyday instead of me teaching you. 

You have such a funny personality.  You know what you do and don't like and you let us know. 

You are totally a Mamma's girl and I love it.  We have such a bond. 

You get so tired of me taking your picture all the time.  See this look? "Enough, Mom!" is what I swear your thinking, lol!

I know our journey is not over and there will be another surgery, another hospital stay, and a few more blood draws, echo's, x-ray's, and a million other things but I wouldn't change anything.  I love you Raygen.  You are the baby I prayed for.  You are exactly the little sister I wished for Zoie.  I am a lucky women with two amazing children. 

Raygen loves the ZOO!!!

 So we had an AWESOME weekend.  We took Raygen to the Zoo for the 1st time and it was soo much fun.  The weather was wonderful what a great way to spend Father's Day weekend.

 Raygen did so good.  She loved being pushed in her stroller.  If we stopped for too long she would start to get upset but once we started moving again she was happy as can be.  She would just laugh and kick her feet it just melt my heart to see her having a good time.  I loved taking both my girls to the zoo.  This time last year we were still at Children's wondering if this day was ever going to happen.

 Zoie in the Eagle nest.

 Raygen letting the cow check out her foot, lol!!

 Nap time.  I loved how she fell asleep holding her tube.  She is so funny that way.  We did get lots of looks from people and lots of "What's sticking out of that baby?"  Hasn't anyone ever seen a feeding tube?  I didn't let it get to me though.  I just wish people would ask instead of stare.  Raygen has a pretty amazing story I'm sure people would be impressed with her.

 Daddy and Raygen. 

 Me and my girls!  My daughter Bryden is visiting from Texas this month so it was perfect to get all the girls together. 

 Zoie loves her elephant ears!

High five Dad! 

What a wonderful Saturday!  I wish every weekend could be this much fun!

Cardio Update!!

 Here is Miss Raygen getting ready for the blood draw.  We did the chest x-ray first which wasn't the easiest thing.  Someone needs to remind mom not to put shirts with snaps on when Raygen needs x-rays.  The x-ray tech wasn't the most gentle so she did get pretty upset.

Warming her arm was pointless.  They ended up drawing blood from her head.  It was the most horrible thing to watch.  The "trying" to find a spot to draw from was pretty traumatic.  It took two nurses and dad to hold her down to draw the blood.  I was a mess.  The lady did get it in one poke but Raygen was so exhausted afterward.  She took a hour long nap before our cardio appointment.  I'm glad we won't have to put her through another blood draw for awhile. 

Raygen getting ready for her echo.   

Zoie's last day of 2nd grade!!! 

Raygen happy again playing at home. 

Had to have our "Toy Story" fix afterward.

So we got "GREAT NEWS!"  Raygen is doing awesome!!  Her heart looked good, x-ray looked great, and he couldn't be happier with her echo and ekg.  Even her labs came back good.  So we don't have to go back for another 3 months :0)  I'm so happy.  Our next appointment Dr. Park said could even be a quick check up so no labs or xrays.  I am so relieved.  Dr. Park thought in 6 months we would need to do labs, xray and everything all over again and possibly the lung perfusion scan.  So that will be another very long day but I'm not going to stress about something that is 6 months or more away.

On another note Raygen is on another 10 days of antibiotic for her ears.  We saw Dr. Polley on Tuesday and they were looking better but still had fluid so were hoping this will clear them up.  If not I'm not sure where we go from here.

Thank you to everyone for all your prayers and support.  They are so appreciated.