Nany 9-1-1

Surprise and Happy Mother's Day, Nany! When Jace was born, we dubbed my mom "Nany" since we had called her mother, Nany, we wanted to carry on the tradition. Over the past months, my mom...aka Nany...has been our greatest help. I've called her my own personal, Nany 9-1-1...(Jo Jo from the real Nanny 911 show has nothing on Sus!) I just want to say thank you on this Mother's Day for EVERYTHING you've done over the past months. Many of you have commented on the strength that I've had and how well I've handled all of this...well, I learned this from my mama, as she learned it from hers, and Maddie's already proven she has this trait as well! Mom, you are my greatest example, my counselor and my best friend. You know me better than anyone else and you're always there to listen...plus you just know when and what to say, (even if its not what I always want to hear!)you still are teaching me. I'm incredibly grateful for you and thank God everyday for having you as my mother. I appreciate the sacrifices you've made for me...and still continue to do. Not until I became a mother, did I realize what a tough job it is and my mom made it look so easy! I just hope and pray that Maddie and I can have that special relationship you and I have and you and my Nany had- Thank you Mama, I love you very much and I'm so grateful for YOU! Have a wonderful Mother's Day!


Jace riding "so sweetly" on his horsie...she would have NEVER let us do this!

Caden at 9 mo. with Nany (need a more recent picture!)

Nany with her first granddaughter...Little Miss Maddie!

"Mom"

A baby asked God, "They tell me you are sending me to earth
tomorrow, but how am I am going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of
you."

The child furthers inquired, "But tell me, here in heaven I don't
have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you.
And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand
when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet
words you will ever hear, and with much patience and care, your
angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach
you how to pray."

"Who will protect me?"
God said, "Your angel will defend you even if it means risking its
life."

"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will
teach you the way to come back to Me, even though I will always be
next to you."

At that moment there was much peace in Heaven, but voices from Earth
could be heard and the child hurriedly asked, "God, if I am to leave
now, please tell me my angel's name."

You will simply call her, "Mom."

3.68 Kilos, What?

Maddie's appointment went really well yesterday. She weighed 3.68 kilos...that's 8 lbs. 1 oz. with the conversion, a 1 lb. 5 oz. gain in exactly 3 weeks, 21 ounces in 20 days! Children's does everything in the metric system so we're always a little confused when hearing her numbers since we have to convert it. It becomes quite the math war between Bryan and I. We're very happy with this weight then Bryan says, "this is what she probably would have weighed at birth if she had been full-term." Oh well, 8 weeks later she's 8 pounds. The best part is, she's gaining! She's a feeder and a grower, just like we want her to be. No echo was done, just an EKG. Her SATS are hanging around 80, so no change there either. Her feeds are good, volume keeps increasing weekly, she's staying at 24 cal (fortified breastmilk) and eating every 3 hours and also on demand. As for the ride over, we're working on it...the binky usually took care of her "outbursts". We talked a lot to Dr. Vernon about what possible outcomes her heart disease could bring for her future- which is nice to know what "could/could not" happen but can also be very scary. I'm still naive enough to think that when we go to the appointment, the doctors are going to give me a miracle diagnosis of Maddie's heart. I've been taking this one day at a time and yesterday decided to "go there" and found myself in tears last night. It's difficult to accept that she'll never have a normal heart or be cured of her defect...our bodies are just not meant to pump with only 1 side of the heart functioning. Sometimes it's hard to imagine that anything is wrong with her, she's just been doing so well. So I have to hold onto the good and enjoy every day because with all things in life, change happens. We go back for our next visit in 2 weeks. I think I'll hold off on asking so many questions next time.

(Heather (Daniel's mom)- if you read this, would you email or call me? I'd love to get in touch with you and see how Maddie's little ICU roomie is doing! 509-346-2821)

A Smile!

"Little Miss Serious" and I were having a conversation this morning and while she was staring right at me and I was yacking away, she SMILED! Finally! We've been practicing and I just knew she was going to do it any day now! Talk about melt my heart! Catching it on camera is going to be tricky...this is as good as it's gonna get for now. Jace and Cade were great "distractors" to my tactics of getting her to smile...

Tomorrow we go over to Children's at the Bellevue Clinic for her Cardiology appointment. Looking forward to seeing how her little heart is working on the echo and seeing what she weighs, bets anyone??? She weighed 6 lbs 13 oz. three weeks ago... I'm also hoping Maddie and her "enemy" (the carseat) can become friends tomorrow on our 2 hour drive to the west side and there will be no tears!

What I Need to Say

The boys! Maddie and I are so lucky with the boys in our lives. Bryan made it clear to me that he "does not want to be on the blog" but I just had to put this cute picture of them. Sorry, Bry. Since I'm planning to publish this blog into a book to document this journey, it's not complete without you in it. I just need to say THANK YOU for everything. Thanks for putting up with me, thanks for helping out so much with the kids and thanks for your calmness through all of this. Along with being so busy on the farm, shipping cattle and staying up nights to do orchard frost control, you're always constant. As my brother calls our relationship, "slow and steady", even when our world has changed- I'm so grateful for you and I know that I can always count on your love, your patience and your wisdom. I love you.

Jace and Cade couldn't be more proud of their baby sister...and very proud to be BIG brothers. I was a little worried about how they would handle all of this change but they've done really well.

Jace is such an awesome big brother to Cade, entertaining him in all ways, pouring drinks for him, making peanut butter sandwiches, and kissing those owies that he created. Let's just say that Jace has taken up the slack around here when I'm feeding Maddie or "hooked up" to pump. He truly grew up while we were in Seattle...I feel like my 4 year old is now 14! Jace has had to make some sacrifices (like missing a month of preschool) but he's been so good about it and seems to understand why. But, we're happy to say that he's coming back soon to Miss Becky's to finish the year of preschool (as long as everyone's healthy)! He is the "Purell Policeman" around here...my germaphobia has worn off on him? Yikes! His sweet smile and take charge approach are such wonderful attributes in our home. Did I mention that he just adores his baby sister??? Finding the binky and getting diapers and wipes are his fortay! I'm so proud of you, Jacers!

Caden...our little Spiderman. He's adjusted to Maddie but his little spot as "the baby" has been taken by a high-maintenance little lovie. He's learning patience little by little. Cade's our alarm clock in the morning and I so enjoy our cuddle time together. Caden changed overnight as well when Maddie arrived...no longer looked or acted like my baby. Funny how they do that when a new one comes?!? We're so blessed with Cade's sweet, laid back nature and his great sense of humor. He's developed a new "giggle" that he uses after saying anything now. It's pretty hilarious. Our funny man, tough guy and little Spidey is such a blessing. And he can't get enough of Maddie...her eyes go wide when he sings "tinka tinka itta sta" to her! And I'm pretty excited that your little sister looks like she may have beautiful, long eyelashes just like you, bud!

The Nursery Nook

Finally...the nursery nook is complete! We've been home a month and I have just completed her "corner of a room". (Double click on the pictures to get a closer view)When Bryan and I got married, we never thought through our remodeling job, so here we are, 8 years later with 3 kids in our two bedroom home...so Maddie's room is officially the corner of our bedroom. Even if she had her own room, I doubt I'd let her sleep in it until she's like 16, so having her with us is just perfect! These are also the quilts made for Maddie by my girlfriends, my friend and cousin Carly, my friend Alisha, and my mom (clockwise, in that order). What a lucky girl! Being a quilter myself, it was such a treat receiving these quilts and knowing how much time, thought, love and hard work was put into making them for our little girl.

What a Difference

What a difference a month makes. Maddie was 6 weeks yesterday and I'd just like to share with you a "before" and "after" of her. Her surgery was a little over a month ago. This is her, 2 days after her open heart surgery. Swollen, sedated, scarred and on support to live. I had never posted the worst pictures because I was having a rough time then, afraid of what was to come and in complete shock, even though I thought I'd prepared myself. It was hard seeing my brand new baby look like this. Somewhere under all of the lines and tubes was my Maddie. Most of it is a blur now. I'd also contemplated posting these because I thought Madison would someday hate me for it. But this is part of her heart journey and where she's been. Her story is not complete without them and it's a reminder of how far she's come, just a little over 1month ago... It's truly amazing and a miracle of how fast and how well she's recovered. We are so blessed and very lucky with the path of recovery we've been on. I knock on wood every time I pass a piece of furniture! I hate to say this, but I await our "hurdle" since she's done so amazingly well. She is not the "typical" hypoplastic right heart baby. Now, a little over a month later...you would never tell that she has only half of her heart working by looking at her. She does sleep a lot and she's much more spoiled at this age (wants held all of the time!!!) but most babies are like this, aren't they? She's doing all of the things that a normal baby does, notice the hands doing "wax on, wax off" motions and the total concentration on her face! Too cute! I also have to note that my pictures DO NOT do her justice... Anyway, I just wanted to reminisce on the progress she's made and I know a lot of it has to do with her but I do give my praises to God...He's been so good and answered many, many prayers. What a difference Maddie's journey has made in all of our lives!

Miss Maddie

Here's a few pictures of Miss Maddie. She's quite the girl these days...doing all the things that babies do. Her appetite is really increasing and I swear I see a new "crease" everyday! Thought you'd enjoy some recent pictures, plus no NG still! Yippee!