Appointment Update

Maddie's cardiology appointment was awesome yesterday! Her echo looked good (she was "too busy" to lay still but Ray has some skills getting those pictures she needs!) and her sats were 81, which means they're coming up! As Dr. Chun put it, the Glenn is doing what it's supposed to!!! He was very pleased with how pink Maddie looked as well as how big she's getting, up to 13 lbs. 9 oz. and 25 inches in length. What was new "news" for me yesterday was she no longer has a murmur...I never realized this but after the Glenn and Fontan repairs, she shouldn't have a murmur. Her murmur after birth and after her B-T shunt was so loud from all of the turbulence of blood flow, it was hard telling what was going on in that little heart of hers! Maddie's Lasix med was dropped altogether, so one last med to give! So now she's down to Captopril 3x a day, Bactrim 1x a day, Prevacid 1x a day and Asprin 1x a day. Not too bad! We'll go back in a month for a follow-up.

After her cardiology appt. in Bellevue, my mom, Maddie, and I rushed over to the main campus in Seattle for her VCUG, an x-ray of her bladder and urethra. (Bryan was unable to go since he's getting ready for apple harvest to start.) This test was ordered to rule out whether Maddie has reflux of her kidneys or not since in all of her renal ultrasounds, bright spots have been detected in one of her kidneys. It wasn't a very pleasant test so we were using lots of "tactics" to get her to be calm. While she was lying on the x-ray table, I was standing over her and made a motor noise then my mom did as well. Maddie quit fussing, studied our faces then started making the "bbbbbbbrrrr" noise herself! It was the cutest thing...and she hasn't stopped since! She loves her new trick. So the test concluded that she does have reflux, "mild-moderate". They rate it from 1-5, 5 being severe and Maddie's is a 3. Only her right kidney showed the reflux, immediately after the dye filled her bladder. She's on the Bactrim for this (a prophylactic antibiotic) to help prevent any UTI or kidney infections...so far it's worked, she hasn't had any yet. I'm waiting to hear what the official report says but I'm sure she'll stay on that antibiotic until a further study shows whether it has "fixed" itself. Most of the time it goes away on its own and settles itself I've been told. We're hoping this is the case for Maddie.

The delivery to the ICU went great! It was so fun to drop off the basket of blankets. Maree came out to get them and was very appreciative...they'll be used to make the babies' beds then the mama's can have the blankets after. I'm so excited about it and know it will bring a little happiness to some hard times for families. While there, I got to see Dr. Baden as well. It's always fun to chat with him. Of course they're super excited about Maddie and her great recovery...our cute little rockstar!

Maddie with Ray (our favorite sonographer)after her Glenn in July.

She's off sternal percautions so it's time for the Bumbo chair & tummy time!

Hanging out with me in the kitchen this morning and having lots of fun in her pink, princess walker! Her feet just dangle but she does play with the little toys at least. Boy do her brothers love to "gently" push her around!

Blankets & Burp Cloths

We're headed over to Seattle tomorrow for Maddie's appointments and we'll be making a special delivery to the ICU as well! I am so excited to bring over our "project"...between my mother-in-law Nancy, her friend JoAnn, my mom and I, we made 18 receiving blankets with matching burp cloths for the babies in the Cardiac ICU! Thanks Nancy, JoAnn and Mom for helping with this fun project!!! During Maddie's first surgery, I loved when the nurses changed her bed, especially when they used a cute blanket to spruce up that baby warmer! It helped "distract" the eyes from all of the wires and tubes! It really made the place feel a little more like home and it also helped make my puffy baby look much cuter lying there:) So to show our gratitude and thanks to the EXCELLENT nurses and staff at Children's CICU, we thought they could use some more! I remember them saying that they go through tons of blankets since they give them away to moms as well, and they rarely have cute ones for the beds. We made some really fun ones for them to use! Hopefully this will make another mom's day while her little one is in the ICU after heart surgery. Since you just have to sit, wait and feel helpless by their little beds, a nice looking one makes everything a little brighter. It's funny how when your world is turned upside down, little things, like a cute blanket, can make a difference!

Hands

I guess you could say I have a thing about hands. I get this from my mom... When you think of all of the things that a person's hands will do in a lifetime, it's really incredible. You can tell a lot about a person by the "look" of their hands as well. I'm so appreciative of the hands that have helped fix my baby's heart...by the way, Dr. McMullan's are huge! When I shook his hand for the first time before her initial surgery, I was scared to death that those hands were going to operate on my tiny baby's heart! What skill they have though... his hands change lives forever. It's amazing when you think of what they do everyday!

Maddie's hands have a lot of meaning for me. I remember one of the first things I studied on Maddie, that first night of getting to be with her, was her sweet little hands. So dainty and delicate. When she clinched her tiny fingers around mine, my heart just melted. One of my all-time favorite moments with her. After those first days post surgery, her hands were the only thing I could hold and caress when I couldn't pick up and hold my sweet baby in my arms. And how Maddie has used her hands has been so different from my boys. Theirs were always clenched into fists as babies, rough, tough and stubby. Maddie's remind me of a ballerina's! She's so dainty with them and always has her fingers pointed just so! Such a difference to my boys' hands and fingers! One of those major differences between boys and girls! Did I mention that she loves them? She sucks her left thumb (got the idea from big brother Cade) but it's great that she can console herself so easily...we'll worry about it in about 5 years! These pictures catch a small glimpse of Maddie's precious hands and my infatuation for them.

More than meets the eye...

Jace turned 5 yesterday! I can't believe 5 years has already passed...I can remember the day of his birth so vividly. We had a family party and BBQ, enjoying our cooler, WINDY, summer weather. We had planned on water activities for the kids but the blow up slide didn't hold up with this crowd...they had more fun climbing and tipping it over than slip-n-sliding on it! Hey, at least they had fun! We topped the evening off with a fun "Olympic obstacle course" which gave us all a good laugh and the cousins just really enjoyed playing outside together. He made a haul with the Transformers, our living room looks like we're under-attack. It seems that Jace's birthday always marks the end of summer for us, makes me wonder, where did this summer go? I'm truly going to enjoy one more year with him home...no Kinder until next fall. He's such a great help and entertains and organizes us all. He and Cade are just the best of friends, it's so fun to sit back and watch. Jace is just a great kid. Happy Birthday Jacers...you are "more than meets the eye!" We love you!!!

Jace with his best buds, Braydon and Jett...how lucky to have cousins his age!

Wyatt, his oldest boy cousin, with all of his "followers"...they idolize Wy and he's so great with all those little guys!

Transformer number ???, we lost count! What a happy boy!

The blow up slide challenge...

Jace's Cousins (clockwise): Cade, Jett, Savanna, Dylan, Jace, Kaylee, Randi Kay, Braydon, Lance, Tyler, and Kate. Not pictured: Wyatt, Jadyn, Jillian, Jake, Maddie, and Kylie.

Cousin Kylie's here!

Tonight at 7:02 pm, little cousin, Kylie Rose Stewart was born! She weighed 8 lbs. 5.9 oz. and was 19 inches long. She's absolutely gorgeous, healthy and even has some cute rolls! How fun watching my baby brother with her tonight, I can't believe he is now a daddy...Congratulations Ryan and Jessica and way to go Jess! If you want to send them your wishes, comment here (they read the blog)!!!

5 months old!

Happy 5 Months Maddie! Poor girl, for her birthday today, she had her 4 month immunizations, 5 of them in 3 pokes. Piece of cake for her...compared to what she's been through. She handled it like a champ, just crying a little. Her weight...get ready, she's 13 lbs 1 1/2 oz!!! She hasn't had much of an appetite lately and I've been trying new strategies with her feeds, so I was so nervous if she'd gained at all. She's now up to the 25th percentile for her height and weight! She's come a long way on the weight...from the 5th% at birth- she's more than doubled her weight!!! After Dr. Allred (Maddie's great uncle Lowell) listened to her, he said "her heart almost sounds normal!" The sound of her heart has "quieted" down a lot since the Glenn...not so much turbulance in there! Developmentally, she seems on track. She hasn't rolled over yet but is so close, kicking her leg over but hasn't figured out the rest yet. Her giggle is so cute and she constantly brings smiles to all of our faces. Loves holding her toys, her dress, mom's finger, whatever she can bite down and drool on. The little boys adore and gush over her every chance they get...it's a little bit of a competition between them. Our Maddie is back and is feeling so much better. She's got a lot more energy lately and seems so happy and content, 99% of the time!

These past months have really flown by and I've caught myself dreaming more about what Maddie's future holds for her. I used to not let myself even go there, it was too difficult to think about the "what if's" and uncertainties of the surgeries and procedures she had to go through in order to get here. She's doing so well that it feels good to talk about our future and all that we have to look forward to! A huge weight has been lifted now that she's 2/3 of the way there with her heart repair and since the next surgery won't be for a while (we cross our fingers), we can get on with LIFE again. What a wonderful feeling!

I count my blessings and YOU all are part of those blessings. I know that the prayers and love sent our way has made Maddie's outcome such a great one. I hope that she realizes someday how much she was loved and prayed for. God has been so good. Thank you for your continued support!

Adventures of a Funky Heart!

This morning I found this blog of a 41 year old CHD survivor. What an inspiration! It is difficult finding adults out there who are living with serious heart defects. The repairs that Maddie has and will continue to have are still fairly new in the medical world. Some of the statistics we've heard for her growing up with her "half-heart" makes you cringe, so it's so uplifting to find an adult out there living with a heart similar to our daughter's. For you heart mom's out there, may you find hope in reading his blog.

What a Life!

Our happy girl, just 2 weeks after surgery! Life is good for Maddie Moomer!

Maddie sporting her new sunglasses (indoors of course, Lasix and sun don't mix!)

Nany was the culprit behind those cute shades...what fun shopping for little girls!

Jace lovin' on baby sis this morning. His "dee,dee,dee" talk she surely loves!

A Transformer and Spiderman to fight and protect her...what a life!

Post-Glenn Follow up

Today was Maddie's first cardiology appointment, since surgery. There were many words spoken by the doctors and nurses to describe her today...wonderful, strong, amazing, a superstar, has good genes :), healthy, pink, beautiful, bright eyed and great,great,great! What wonderful news for us to hear!!! We feel so blessed and lucky. Her x-ray looked much better this time, at almost 2 weeks post-op, her heart swelling was way down and there was no visible fluid retained anywhere. So we are dropping 1 dose of the Lasix for now...now she only gets 7 syringes of different meds a day! Her chest tube stitches were removed and her incision looks so awesome...the nurse thought this was her first surgery, not her second sternotomy! Her sats are hanging in the high 70's, we're hoping her pulmonary arteries will grow some and she'll maintain sats in the 80's until her next surgery. The EKG was good and in the weight department, she just maintained, only gaining 0.2 kilograms. Dr. Chun, our cardiologist since hospital admittance before her Glenn, wants to up her caloric intake to 28 cals and maybe she'll gain better. He said it's tough on them when they're healing up as well as trying to gain weight. I pulled her NG out last Tuesday night (she was gagging and vomiting way too much with it in) and she's been consistently taking her minimum since but not reaching her "goal" for her feeds. Obviously, this is just maintaining calories for her, not making her gain weight. Her current weight was 5.76 kilos or 12.67 lbs and height is 63 cm or 24.8 inches. I'm actually excited for the calorie jump. I'm hoping she won't have to be "force fed" with so much volume now. Her little tummy can only hold so much!!! Now let's just hope she'll tolerate the taste. The higher the calories, the thicker, richer and harder the milk is on their tummies I hear. Good thing we have the reflux med for this. So overall, it was a GREAT appointment! We are following up in 3 weeks...wow!

Since our appointment was at 9am in Seattle, we all went over yesterday afternoon. We did a little shopping for the boys at Bellevue Square and had a yummy dinner at the Cheesecake Factory. Love that place! Staying at a hotel is always so fun for Jace and Cade. It was really nice taking Maddie out, strolling around the mall and enjoying time as a family. Life is feeling much more "normal" for us again. Sure feels good!

Angel Kimball

It's with great sadness that our friends, The Fuhriman's, lost their precious baby boy yesterday. His heart defect was the same as Maddie's with some added complications. I met Tracy back in May while she was pregnant with Kimball and they'd recently learned of his diagnosis. We went to the same OB clinic and they only live a town away. While at Children's, we had the pleasure of spending time with their family and I was able to meet Kimball, he was truly a gift from above. Our hearts go out to their sweet family...please keep them in your prayers.