Jackie and Bender's One Big Kiss

Please call today and donate to Seattle Children's Hospital 866-987-1061. I joined the Kiss for the Kids club before I knew I was pregnant with Raygen. I didn't know the day I called how much I would need Children's hospital. Children's is like a second home for us which is sad to say, but also a blessing to have such a hospital so close to us. Please donate. You can even donate in honor of Raygen if you would like, but anything helps. Kiss for the kids club is only $20.00 a month. Trust me you wont miss it.

Rolling Over...ALMOST!

So today was a pretty exciting day. We had a doctor appointment. Just a check up, but I'm so glad we went. Raygen had to get her second flu shot which I hate but I know it's well worth the poke to protect her. The doctor thought she sounded a little congested and thought she may have a little bug. Raygen was also showing a little fluid in her ear. The doctor said not to worry too much right now she won't treat her yet but to watch her very closely. I'm soooo stressed I pray sooooo hard that Raygen does not catch ANYTHING. The last time she had a cold we spend 3 days at Children's. I am so nervous. Please say a prayer for her. On another note she almost rolled over today and I have a video, kinda, that proves it. So exciting!

Also if you have time please listen to 106.1 tomorrow and join the Kiss for the Kid's club to help Seattle Children's. I joined before I even knew I was pregnant with Raygen and I'm still a member today. It's $20.00 a month and goes to a great cause. Just like me you never know if someday you will be taking your child to Children's.

Great Grandparents

I loved this shirt. Had to buy it the minute I saw it. She's in 18months clothes already :)

I love all the pictures I have of the girls looking at each other.
First picture with Great Grandpa Buck.

First picture with Great Grandma Bev.

Great Grandparents house this weekend was the first house Raygen has been to. Besides home and the office of course. It was her first official "visit." I'm glad we went. Raygen wasn't sure about being there but she did play a little and let both her great grandparents hold her for a few minutes. She did take a little nap. I think over all the visit went great. I love having pictures of my girls with their great grandparents. Not too many kids get the chance to meet theirs. I think I will try to visit at least once a month if we can. It's totally worth it.

11 Months Old

February 23rd Raygen you will be 11 months old. Wow! How time has flew! You are so wonderful. You bring so much joy and happiness to this family. Our family is complete. You are talking so much. Yes, I'm still waiting for you to say "mommy" but you make so much noise and your laughter feels our house with joy. You are wiggling and moving around like crazy. You love to watch your shows and roll to your sides. You are becoming a good traveler. You go to work everyday and I think you enjoy the car rides now that you can look outside. You sleep all through the night for the most part. I still have to get up every two hours to fill your feeding pump but that's okay. We are increasing your feeds so you are getting more time off, still weaning off meds, and working hard with OT and PT. I know pretty soon you will discover food taste good and love to eat, knock on wood. Next month you will be ONE!! and we have a wonderful party planned for you. I thank god everyday for you. I am so thankful that your part of our family. God is so good, all the time. Thank you Raygen for being so wonderful. We love you sooooo much!

Love Mommy

Raygen's Noise

I discovered today she loves paddy cake. She was going crazy laughing at the office when we did it but of course I didn't get that on tape, lol! I love the end of this video you can hear Zoie telling me I sing it wrong and corrects me, lol!!!

Here she is talking watching tv. I always let her watch an episode of Sesame Street as soon as we get home from work, she has went all day without it, lol! It seems to always put her in a good mood for the rest of the night and I'm able to unpack everything from the day.

Hope you enjoy! She is so great. Everyday she does something new and surprising!

ERIN

Birthday Outfit

Raygen trying on her birthday skirt. I LOVE IT!!
It is soooo cute and fits her so good.

I'm so excited for her party for her to wear it.

I got it online at ginabellas1@etsy.com You have to see her supper cute dresses.

I love watching Raygen play in her bouncer at work. This was Zoie's old bouncer I knew I kept it all this time for a reason.

Please remember to vote for Raygen this week at chronline.com!!! What a story she has to share.

ERIN

Cutest Baby Contest

Please follow the link to the Chronicle to vote for Raygen for the cutest baby of 2011!!!

http://www.chronline.com/

You can vote once a day per email address till 2/24/12.

I got Raygen's personalized birthday outfit yesterday and as soon as I can I will post the pics and a supper cute video of her playing at work.

Napping on the job...

I didn't realize how big Raygen was in this swing till I looked at these pictures. She is so cute. We are trying out the pony to hopefully help with the tangles in her hair. It is a battle to get them all out during bath night. Raygen is kinda making me nervous today. She woke up sounding junky and had a little snotty nose so please say a prayer for her. NO COLD STAY AWAY!! I have given her Tylenol twice today and she seems happy so I'm hoping it's nothing.

Happy Valentines Day!

We started out with this shirt today "My Heart belongs to Mommy." I love it. If only it said "My half a heart belongs to mommy" lol! We had a spit up and had to wear another shirt but I just had to show you this one.

Hard at work with Pappa today!

Nothing like a cat nap at the office with Pappa! This shirt says "I love Mommy!" I thought we should wear "love" shirts this week to celebrate Raygen's first Valentine's Day. I wish I could say we were doing something special, but were just going to work. Which in a way is special to us because it's getting used to our new "normal."
I know were early but "HAPPY VALENTINE'S DAY!'

Weekly Round Up

We tried out Raygen's new toy at the office yesterday and it was NOT a hit, lol!!
This bell seems to be her new best friend. It's always in her mouth.

I love these Elmo pj's my mom got her. Elmo anything I think fits her so well, she is a huge fan, lol!! I love how the g-tube come out of Elmo's mouth. As you can see I have to cut holes in all of Raygen's clothes. It's easier that way and I think it prevents the tube from being pulled or bended too much if it just come straight out. So I guess we won't be passing down any of her baby clothes, lol!

I tried to get a better video of her laughing but of course the minute I started recording she stopped laughing, lol!! I'm still trying to get another one with laughing and baby noises. She is watching Sesame Street before bed in this video and she has discovered she likes Grover. But lets be real, she likes them all, lol!!

Erin

Support Mended Little Hearts

http://www.facebook.com/CardioSmart?sk=app_132734716846877&app_data=dlt

Please follow the link about and "like" CadioSmart and CocaCola will donate $2.00 to Mended Little Hearts. Such an easy way to help a wonderful organization.

Supporting Big Sister

Getting ready to go watch Zoie....
play the piano at her talent show. Zoie also did a cheer!

I have the cutest girls!!

I don't know what Raygen thought about it all.

But she needed a nap after, lol!

Yesterday we went and watched Zoie at her talent show and I must say Zoie did awesome!! I was so proud of her and so excited that finally Raygen and I got to go support her in something instead of the other way around. Don't worry no one got close to Raygen, lol! I was very germ aware. I was so happy to be able to show Zoie that she is also important to us.

First All Girls Car Ride

Today was an exciting day....
the first time Raygen and Mom took Zoie to school by ourselves.

They both did great! I got lucky and Raygen fell asleep after we dropped Zoie off.

The ride home went smoothly too. It's too short for anyone to have time to get upset. It's so exciting to finally reach this point. I can drive my two girls now, just us. It feels good to get some indepenence back!!

Water O Water

I love this pic of us at work. It looks like she is going to blow a kiss.

SO lets just say that the past year we haven't had to deal with any of our "normal" home issues. First we hardly were here and second everything seemed like it could wait till Raygen was better. Which most stuff can but having water is another issue. Yesterday morning everything was going good one minute were cleaning and the next minute there was no water. My husband and dad fixed the problem yesterday, took all day, but by last night we had water again. BUT now its morning again and no water. So stressful. So my husband who thought he would work today and my dad who probably had other plans are on their way here to again to work on our well. I just hope it's an easy fix. I don't think we could go too long without water. We have lots of bottled water but still. I need to always clean Raygen's stuff and without water it will be impossible. Please be an easy fix.

Raygen news: I've started to plan her birthday party, so exciting. I even found her this super cute birthday outfit from Etsy. It's a homemade Sesame Street skirt and personalized shirt. As most of you know Raygen loves Sesame Street so that has to be the theme of her birthday party. We have increased her feeds and weaned more from her meds and so far she is doing pretty good. She has started to make all types of baby noises and I'm trying to get a video to post. Too cute to miss. I love hearing her voice.

Please say a quick prayer for Zoie who woke up with a horrible cough. She is so upset thinking she will have to stay at grandma's till she feels better, but we will wait and see. It's so hard because I want to comfort Zoie but Raygen can not get sick. Any cold will take her back to the hospital. I struggle with always feeling torn between my children and I hate that I have to rely on someone to comfort Zoie when she is sick, but I can't get sick either because then I couldn't care for Raygen. My heart aches.

So much happening. I am trying to stay sane :)

CHD Awarness Week Feb 7-14th

So this month is a big deal to heart moms and our babies. It's time to bring awareness about CHD. As someone who has no heart issues in her family or in my husbands we were shocked to learn that Raygen had HLHS. It doesn't matter your age, your family history, your luck, or even the health of your previous children. We are all in the same boat when it comes to CHD. ANY BABY can be born with it. So please spread the news and bring awareness. It's so important to get diagnosed as soon as possible. If we hadn't found out as early as we did with Raygen there is no guarantee she would be here today.

Raygen has been through 2 open heart surgeries, a tracheotomy, a dencanulation, 2 heart caths, stent placed, numerous iv's, pic lines, blood draws, x rays, echo's, ekg's, g tube placement and so much more. She is almost 1 and wow what a year she has lived. I am so grateful for her strength and determination to live. She has opened our eyes to a world we would never have saw. She has encouraged us to live in the moment and enjoy every single second we have with her and her big sister. We do not know how many tomorrow's we have with anyone but it's scariest when you know you are not guaranteed any especially with a special heart. Raygen has one more open heart surgery to go and till then we are going to live, laugh, enjoy, and cherish every single second of every single day with our miracle. God is good.

Follow the link below to learn about more families and share in their stories with CHD.

http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/)

GI Appt and Dad's Work

So we had another GREAT DAY!! It's been so nice being able to go out with Raygen. We have been going to work and it has been so wonderful. Today we had our GI appointment, went to toys r us, and stopped by Randy's work for the first time. As you can see from the pictures Raygen enjoyed herself. No real medical news to report from GI doc. They decreased her calories (she's a little on the chunky side) and we are going to start increasing her volume per hour through her g-tube to hopefully work toward having some time off the pump. We are also adding a little protein and vitamin d to her diet. They want us to start dipping her pacifiers in juices and let Raygen get the taste of things but to still hold off on baby food. We will go again to the GI doc on the 22nd and we will also see a speech therapist, OT, and PT that day too. It will be a long appointment but at least it's therapy and not a bunch of pokes and x-rays and more test. Raygen will also start having OT once a week starting Monday at home so that will be nice. I am also thinking that next week I will try to drive myself to work which will be really scary. Raygen has never been alone in the back seat before so it will be a big adventure for us, but I feel she will do just fine. Plus it will be nice to have some independence again and not depend on people driving me around so I can sit with her. So much is happening it's such a huge blessing. I finally feel like the dark clouds are lifting. It's such an exciting and scary time and we are all living in the moment. God is so good.