Ice cream at midnight...

is a little habit that we finally broke for little miss! Instead of getting her yummy bottle (not actually icecream) at 2am, Maddie's finally sleeping through the night! It took almost 21 months for this to happen but as soon as she was weaned from her bottle and I quit getting up with her with every peep she made, she did it! I have hesitated to post about this since I had some doubts it would be a success but we're going on two weeks, so I'm crossing my fingers this is our new norm. Maddie still sleeps 6 steps from our bed in her crib in the little nursery nook (due to lack of bedrooms in our home) so I thought it would be nearly impossible for her. Naps are still a hurdle, the girl hates to sleep in a room by herself and throws some major fits. Boy is it going to be a rude awakening when she has her own room someday soon and loses her two favorite roomies, mom and dad!

I was procrastinating on weaning her from her bottle since it was "drilled" into me from day 1 how important it was for her to have enough calories and keeping her hydrated is critical with her anatomy. For her first 6 months of life or so, I forced her to eat and worked so hard to get her to the point of wanting to take her bottle. She went from an NG tube, to bottle feeding only an ounce at a time 24/7, and I kept a record of every ounce she ate until she was 10 months old! Yes, I've made some progress. But by about 8 months old, she started liking her bottles and we finally were having success. She was gaining well and enjoyed eating, her reflux was minimal and feeding her wasn't a battle like it had been. As weird as it sounds, I've actually loved getting up with her every night, it was our cuddle, quiet, alone time together and I felt reassured with getting a few more ounces in her this way. I was also convinced she was a better eater while drowsy and it was my security blanket and hers.

BUT...at her 18 mo. visit, her pediatrician mentioned getting her weaned ASAP as well as no more "social hour with mom" in the middle of the night. The habits we were creating were going to be tougher to break as she got older. I wasn't convinced yet to start this until we had our visit with her cardiologist. Dr. Vernon reiterated that she does not need a bottle anymore, she can take a sippy just fine and the last thing she needs is to still be getting up through the night. So, after crying to Bryan after leaving the office visit, we made the decision to "tough love" her though the night, starting that night. Amazingly, she actually just fussed a bit then went back to sleep! Every night since, she's slept through the night without waking up. No puking or crying herself into hysterics (she's great at this and has learned that if she pukes, she gets out of her crib. I know, very spoiled.)

I guess Maddie was more ready for this than me! So no more ice cream at midnight for our little love and I actually feel more rested these days. It's amazing how well you feel after having a full night's sleep...it's a good thing for all of us!

Cardiology appointment

Giving daddy kisses while waiting for Dr. Vernon

Last Wednesday, Maddie had a cardiology check-up in Bellevue. She had an echo done as well as a thorough exam and visit. Her sats were surprisingly high, 77% (she's been running in the low 70's at home) and she weighed 24 lbs. and 33 inches in height. It's impossible for the echo-tech to find her Glenn site (same story each visit, wiggly toddler and lots of scar tissue doesn't make it easy) but with the pulmonary blood flow they can see, it looks like the re-plumbing job is still working. Our burning question was when will she need her 3rd surgery...well, Dr. Vernon believes that Maddie will likely be 3 or 4 before her Fontan. That's really nice to hear but at the same time, I wish we could just get it over with. She needs to be around 15 kilos for it (30 lbs.) so we probably do have a ways to go since she hasn't gained any weight for almost 2 months and is just getting busier by the day.

I'm always nervous before her appointments and find myself mentally preparing in case we recieve bad news. Maddie was sick pretty much all of November so I was apprehensive that she'd have such a good report, especially since she's turning more smurf-like each day and the sat monitor at home enjoys 72-74%. Even with the increased blueness, her Card. believes she's doing well. And the best part of the visit was hearing we don't need to come back for 6 months!

She also recieved her first round of the Synagis vaccine today with Jana at our local clinic...2 pokes & 4 doses were given = a $5400.00 immunization! That's just crazy. She'll continue to have these throughout the winter and we're jumping for joy that this is the last season she'll be getting these costly shots!!!

all I want for Christmas...

Jace lost his first tooth tonight and we're all gitty about it!

Pictures from the Festival of Trees

A little recap from the Festival of Trees... Nany, the kids, and I all braved the pass and drove over to and from Seattle in one day to enjoy...
watching this little angel strut her stuff at the Festival of Trees at the beautiful Olympic Hotel. Daddy had to stay home and work which was a bummer. But Maddie's cardiologist, Dr. Vernon and her family, were there and what a treat it was to see them! We were also lucky to have Aunt Lesa, Uncle Mike, Savanna and Braydon as well as Maddie's great-aunt Janet S. there enjoying the evening with us too!
Cousins Braydon and Savanna standing by Maddie's tree & looking very sharp for the fun evening!
The patients wore red ribboned bells while the siblings wore green necklaced bells. The big brothers were very proud of their sissy's tree although Cade kept wondering where his was. I'm sure he was envisioning a spider-man themed tree.
Maddie and Jackson...another tree honoree. We all live in the same little town, he's Mrs. Becky's son (the boy's preschool teacher) and is currently undergoing chemo at Seattle Children's. He's a great young man and his family is wonderful. Maddie wasn't thrilled with taking any pictures at this point though, even with this handsome boy.
The beautiful tree in Maddie's honor..."Sophisticated Snow Ladies" and very elegant it was. There were over 20 different trees throughout the hotel lobby, all fully decorated with their own theme. Some are still up for auction if you're interested!
And Miss Maddie was not a fan of Santa. The boys loved him. Cade was speechless with a perma-grin while Jace talked his leg off, rattling off all of his wishes. Maybe next year she'll give Santa a chance?
What an honor it was for Maddie and for our family to be given this opportunity. My eyes welled up with tears many times throughout the evening...realizing the reason we were there and also feeling so fortunate with how things have turned out for Maddie thus far. In the opening ceremony of the tree lighting, the speaker mentioned that his life has been touched forever by the children at Seattle Children's and he's reminded of the saying, "but for the grace of God, there go I" when he sees the children and the families this wonderful hospital serves. I learned this saying at a young age from my grandma Nany and when the master of ceremonies said that, I realized that some may think this of our situation. But I don't look at it this way, it's by His grace that we have Maddie. We have been blessed beyond words with our little girl. Her heart has both softened and strengthened all of ours and we have so much to be grateful for.

this little turkey...

and the rest of us wish you a Happy Thanksgiving!!!

Having a kindergartner has been so much fun. Jace is doing great in school and we've loved watching the progress he's made. His joy for learning is contagious around here. Cade is all ready for kindergarten, thanks to his big brother. Too bad Caders still has another year to wait until his kinder debut.

Along with all of the academic progress he's made, we're also learning what's hip in kindergarten. One of his new sayings is..."ya-yuh" which is just 'ya' with a little 'uhh' added on for extra emphasis. He's also given us the "whaaaat" (in a punk, shoulder dip, sort of way) when I ask him something, and he's becoming pretty quick with his jokes and comebacks lately. He keeps us laughing and we often reminisce about our elementary school days with the stories he shares about his day.

Here's a little note he wrote me the other day..."Jace Hfus Fun" which translates to: "Jace has fun." And yes, he's got this one down. He's the creator of fun in our house most of the time from rock-n-rollin' on the bed to inventing super cool contraptions. And his note is a great little reminder for us all..."have fun". Not a bad motto to have.

 

Festival of Trees

Our little lady will be honored as one of Seattle Children's kids at this year's Festival of Trees! Maddie has her very own tree that will be auctioned off and sold for Seattle Children's Uncompensated Care Fund. The trees are valued at $2500 and sell for anywhere between $4000-$10,000! Here's the website with all of the information: click here. You can read Maddie's "signage" under the featured patients tab and she's not the only one you may know...we have a couple of friends being featured too!