So first with the update. Hatcher had a good night, seemed to be stable and looked a lot more peaceful. Randy stayed with him. I think it is all hitting me, last night my whole body was tired, shaky and I stayed at the apartment and slept. So glad Randy has the strength to keep on night shift! Hope I can do it tonight so he can sleep! He is still on the vent, and his x-ray looked a little more hazy than yesterday so most likely he will not be getting off the vent today. He does have some bed sores on the back of his head (ouch) and his cute little bum. Also because of his open chest, when they took off the bandage to close him it took some skin and his chest area is raw and looks so tender. He also has a hernia in his scrotum, they found about 4 days ago. It seriously was the size of a softball. It will have to be surgically fixed but is not urgent right now. We keep the faith and know his guardian angels are working overtime keeping him comfortable. My kids favorite song is a Taylor Swift song about never growing up. I sing along to it and put their names in it. I always tell them I'm going to put a brick on their head so they just stop growing. I guess today I'm taking that back. All I want is to see Hatcher grow up. This morning I told myself if I ever see Hatcher get on the school bus I will only cry tears of joy - and remember these days, so I will cherish all the simple things. I appreciate hardships, they make me a better mom. I heard the sobs of another mother who lost her sweet angel. These are defining moments in my life and my faith is straightened and I know that we do not endure alone, the Lord is always there.

WE BELIEVE IN MIRACLES

Thank you Dr. Reddy for giving us so much hope, what an amazing person you are!

Look at all this family cheering you on! Thanks everyone for taking shifts so our little guy always has someone by his side!

Yesterday, Chest still open, yuck bud! This is why I love this man! Randy is so sweet to Hatcher, he is always having talks with him and reading him "cowboy small" I love you Randy, thank you for being my rock through all of this, I would want no one else by my side and Hatchers!

We believe in miracles! Hatcher had an amazing day. Dr. Reddy went in and cleaned the lung today. After removing fluid, clots and old blood his lung had major improvement and they kept taking slow steps as Hatcher was tolerating. He ended up with a closed chest, hurray, a surprise to everyone! I can hardly believe it. We recognize God in all of this, and know all of our prayers have been heard. He still faces many things to come (like getting of the vent) but we as a family feel so blessed, loved and full of hope. We are grateful for the things that build us, bring us together and make us stronger. Our love to all of you!

Naughty Ecom!

Yesterday started out a little rough when we learned that Hatcher's ecmo machine was not functioning properly. He had to be changed to a new one, but the transition seemed to go well and he continues to amaze us. For some reason yesterday I was really affected by his open chest. It just seems too much for such a little boy to have to endure. Our night nurse Roada gave him a little bath and washed his hair. In the morning he got a bear hug, which is an inflatable warming blanket and for the first time since surgery he wasn't freezin cold! We have meet so many families from all over the country that have come here to LPCH at Stanford. Our prayers and love go out to all of you who endure such overwhelming battles!

Aunties!

Haley let Jaxyn do her hair, now that's what I call style! Nichole and Jaxyn

Jaxyn has been in heaven having one on one time with her Aunts! Thanks Haley and Nichole for making her feel like a million bucks and letting her be your shadow.

Hatcher Update

Hatcher's (well, OK mine too) favorite nurse AMY! We love you and know we will be friends for years to come! Thanks for being so good to our little cowboy! I love little parts of him that I actually get to a kiss on!

The swelling in his face has really gone down, he looks a little more like Hatcher today!

First of all we want to thank all of our friends, family and even strangers who have given us so much strength. Although exausted, we continue to be lifted up by all of you! Hatcher is still on ecmo, and is very sick, but he is making small amounts of progress each day. He continues to have fluid on his right lung which is his biggest hurdle at this time. I have been so hesitant to take any pictures but felt like today is a new day with new hope! Both of the Papa's stayed by Hatcher's bed side last night so Randy and I could sleep. Walking out of the room I couldn't help but tear up seeing these two strong men that he loves so much watching over my sick little boy. Love to all of you, go give those you love an extra hug and kiss!

Hypoplastic Left Heart Syndrome

Our little cowboy has a big fight ahead of him. Last night Hatcher's surgeon had to go in and try to fix his lungs, they are very sick. Not able to remove all of the fluid Hatcher had to be put on the ecmo machine, which is functioning as his heart and lungs. His chest is still open, Randy took a picture with his phone, but it's just too much for mama to take. He has had some alert moments, which they do not want him to have, but he reached for me and mouthed the words mama and ouch. Tears oh tears, but it gave me hope that my little Hatcher is still in there somewhere. Our sweet boy needs a miracle .... thank you to all who have kept us in your prayers ... we can feel all of your support.

Oh where to even begin. Hatcher was doing well in surgery, in fact they had him closed up and our surgeon had actually scrubbed out when things started to unravel. They had to emergently open him back up and get him stabilized. His chest is still open and he is very puffy, poor little guy! It was over a 10 hr surgery. He continues to fight and amaze us and we are enjoying reconnecting with all of our wonderful friends here at LPCH. Thanks to everyone for all the thoughts and prayers. Hang on bud, we love you!

Open Heart #4

A long week of pre op, cath lab and waiting, but it finally is here. Hatcher went in this afternoon for his 4th open heart surgery. He is such a tough little guy, we are so proud of you Hatcher. He was crying when I handed him over, and so was I! Hatcher you have taught me so much about love and life, hope all goes well my little buddy!

STANFORD

I will update more in depth when things are not so crazy. Aunt Haley came to California and we sure had fun with her. She was a bright spot in a long weekend of waiting! Thanks aunt Haley for taking our pics! We love you.

Surgery Postponed

We made it to California! Hatcher did well in the cath lab Wednesday, they had to do a few coils in his heart so he stayed the night. It was a rough night for the poor little guy, but all in all it went well and we were able to come back to the apartment. His surgery has been postponed till Monday, I am so anxious and wishing we could get this over and done with, but for now we are enjoying our family and trying to sneak in a little fun!

Hatcher 3-18-11

Thanks to all of our amazing friends and family for all of the love and support you have given us. We will keep you all updated. Surgery will be March 18th .... we love you bud!

1000 Cranes

Thanks to the Arvas Family for making us feel so special! Check out the story at

idahostatejournal.com Boy receives 1000 origami cranes before surgery.

Pirate Cowboys

I guess one good thing about staying in and keeping Hatcher away from any sickness is spending time together. He has really been into playing pirates and finding treasure and shooting things with his gun. He makes me laugh so hard and even had me dressing up in some pirate gear. He started out with his pirate hat but by the end of the day his cowboy hat managed to be back in its place. He told me he was a cowboy pirate. I treasure these days of just the two of us making fun memories together.

SNOW

The best part of our house has to be the amazing views and sledding hill! The kids have had a blast going down and down and down. This was the first Saturday in a long time Randy was able to sneak in a bit of fun with the kiddos, thanks babe for working so hard for us.

Happy Heart Day

I just love Valentines day! I had some special treats for the gang in the morning and had put prizes in their cereal and then re glued the box, even Randy was surprised. Hatcher and I decorated the house with streamers and balloons for our Valentines dinner. Hatcher was so excited he kept saying. "I love Christmas Mom." What a neat day to celebrate heart awareness!

NO CAVITIES

Before heart surgery Hatcher had to go to the dentist to make sure there were no bugs hanging out in his teeth. He was so cute and so excited. Way to go bud, no cavities!