Cardiology Appt.

Today Maddie and I drove over to Seattle for her cardiology appointment with Dr. Chun. After a chest x-ray, heel poke for labs, an EKG and visit with Dr. Chun, the consensus for her appointment was GREAT! After a little OD on Captropril last week (yes, the pharmacy had changed its recipe and was mixing it at a 5x higher suspension rate) I was a bit worried about my girl. As her mother, I felt HORRIBLE for giving her the wrong dosage but was totally unaware of it until the bottle ran out quicker than expected. I beat up on myself pretty hard and was so pissed about the pharmacy's part in this mistake!!! I had not been "prepped" by them prior to giving her the medicine and had no idea how they compounded it! Note to self: always ask them to give you a rundown on the perscription before giving it! Anyways, to put it simply, Maddie tolerates a lot. The only "signs" she had was little interest in eating (which is her norm more and more these days), funny looking poop, and she was sleepier than usual. Duh...her blood vessels were extremely dilated and lazy from too much Captropril! So she's now off of the Captropril, she's satting at 85% and seems to be feeling much more like herself. Her labs came back a bit high in potassium but Chun wasn't too concerned about those numbers. Everything else checked out great...she weighed in at 14 lbs 3 oz and is 25.7 inches in length. We also aren't due back for another cardiology appointment until the end of November! AHHH!?! I don't think I can make it that long but this is awesome news Maddie doesn't have to be seen until then. Dr. Chun has confidence in how she looks and overall, how she's doing. Even though I'm nervous not having a monthly checkup, it is a big sigh of relief and reassures that everything is going great in that little heart of hers!

Maddie with Dr. Chun, he's the best to visit with...he always answers all of my questions and I have learned so much through his explanations, he's a great teacher and is the nicest doctor!

The highlight of the day was going to see Teagan and Susie. Teags has had a rough couple of weeks after her Glenn surgery. Teagan is truly her "heart sister". Like I've said before, their hearts complete each other to make 1 healthy one. Although these two 1/2 hearts are pretty tough and hold their own quite well!!! Teagan is just a doll, and it was so nice to see them again. We check on her daily through their blog and Susie and I visit on the phone just about as much. We had a fun time as "visitors" on the floor this time. Different being on the other side, even had to get a visitors pass! We're looking forward to when they are home and rested so we can get together for a nice day with our "bestest" (as Jace and Cade would say) heart friends!!!



We couldn't help but stop by the CICU on our way out. We delivered some freshly picked apples (after many offers and promises made from our prior stays) and we got to see Joanna, one of our favorite nurses! We hadn't seen her since March so she was so excited to see Maddie "all grown up" now! We also picked up the empty "Maddie blankets" basket so we can make up another round of blankets and burp cloths for the ICU. Dr. Baden strolled by just in time and was able to take the box of apples...he's given us such a bad time about being farmers that I wanted him to have the "fruits of our labor" (literally)!!! I think he's now impressed about what "farmers" actually do. He's a good guy and is always fun to joke around with. So all in all, it was a super day for just Maddie and mommy!

6 Month Recap

Happy 6 Months baby girl! Wow...6 months already. Here's the recap & milestones Maddie's met since 3/13/08:

~ surprise birth a month early by emergency C-section
~ 2 open heart surgeries
~ 2 heart catheterizations
~ 30 days lived at Children's Hospital
~ 3 ER visits
~ 1 ambulance ride
~ 11 doctor's appointments
~ has "beat" the NG tube twice and oxygen cannula
~ almost tripled in size since birth!
~ laughs, smiles, jabbers, shrieks, spits, coos, blows bubbles
~ sleeps a 5-6 hour stretch at night now!
~ wears 3-6 months clothes and size 2 diapers
~ loves her thumb...it's for the long haul, no doubt
~ started rice cereal & some baby food, not a big fan
~ she's a snacker and a grazer...would prefer not to eat if she could!
~ rolls from side to side but not over yet
~ holds head straight up during tummy time & supports head steady
~ grabs toys and switches them between hands
~ stands up & loves it! Can even balance by herself holding onto something
~ adores her brothers, especially Jace...she comes ALIVE when he's near
~ not good in crowds or around a lot of people...cries and worries! She's a
homebody (house arrest does this to a girl)
~ a "mommy's girl" through and through and I love it, can't get enough!

Beautiful day, beautiful baby

The weather has been SO NICE lately...perfect days. I love this time of year and being that we spent so much time indoors this summer, we're trying to get out as much as we can to enjoy it before winter is here! Here's some fun pictures I got of Maddie exploring the outdoors and Sophie the dog too! (That's Soph's smile (not a growl)...she's a lover and would smother Maddie if I let her!!!)

Prayers for Heart Friends

Please say an extra prayer for a few of our fellow Seattle Children's heart friends...Teagan will be in for her Glenn Surgery on Tuesday morning. This is her second open heart surgery and is the same surgery that Maddie had back in July. We know she's going to do just awesome! She's such a cutie pie. Susie (Teagan's mom) and I talk at least once a week (sometimes daily!) and I'm so grateful for the friendship we share. We just love the Maxwell's and little Teagan!!! Here's a picture of the girls from a few weeks ago when our families got together for dinner. We look forward to many fun times ahead with our baby girls!


Baby Mia is a heart baby at Children's that definitely needs our prayers. Two month old Mia is currently waiting in the ICU for a heart transplant. She has undergone one open heart surgery to give her a chance at receiving a heart...Please pray for this sweet family and Baby Mia. You can read more about Mia by clicking on the blinkie button to the right.

Daniel is another heart baby that is in our daily thoughts. He and Maddie were born just two days apart and were roommates throughout Maddie's 1st surgery back in March. When we came back in July for her second surgery, we found out from Daniel's mom, Heather, that they never went home and are still at Children's. Please say a prayer for this cute little guy and his mom...we had dubbed him "Maddie's boyfriend" during the 1st stay since they kept getting hospital ICU room assignments with each other. Our hearts go out to these families plus many more. We all share the common bond of having a child with a special heart.

Adult CHD'er on TV Tuesday...

If you haven't read the blog Adventures of a Funky Heart, you probably don't know about this Tuesday's How to Look Good Naked Season Finale on Lifetime network at 10 pm Eastern. I have never watched the show but will on Tuesday (Sept. 9th) night and plan to record it. A 38 year old CHD survivor, FONTAN survivor, will be featured on the show. The show "teaches women to go from self-loathing to self-loving without cosmetic surgery and fad diets."
You can read about Heather's story here. What a great way to promote CHD awareness! As a heart mom, I am intregued in finding adults with Maddie's defect/treatments. Heather, the shows guest, has Tricuspid Atresia which is also a defect that affects the right side of the heart (like Maddie's) and she lives with a Fontan which will be the final surgery Maddie will have.
So remember...
Tuesday, Sept. 9th
7:00-8:00 pm Pacific Time
Channel: 108 LIFE (Dish Network)

Cousins

Maddie is a lucky girl. She has two girl cousins (first cousins) born within months of her, Jillian is just 6 weeks older and Kylie is 5 months younger (plus she has a "Stewart boy" cousin on his way...due in January). The best part about this is they'll grow up together here in Royal! I never had a cousin that close to my age, let alone living only a few miles away. Many fun memories are going to be made with these girlie's!!! It's such a relief and comfort knowing the kids and families that Maddie will grow up with. Let's just say that she'll always be watched very closely...the saying, "it takes a village to raise a child" definitely fits our community. Along with these two cousins, there are 13 other kiddos born within a year of Miss Maddie, that I know of, that she'll grow up and go to school with! That's the best part about small towns...and most of their parents, Bryan and I were raised with too! Wow, baby boom in Royal City???

Jessica, Kylie, Katie & Maddie (photo taken by Jace)

Kylie and Maddie cuddling

Jillie and Maddie, our "not so happy girl", on a Sunday afternoon

1st Day of Preschool

Today was the first day of preschool for the boys. They were both so excited and Jace filled Cade in on some "preschool scoop" this morning at breakfast. I think they had a great time...Cade had fallen asleep before getting home (the drive is only 10 minutes) and Jace conked out shortly after getting home even though he tried convincing me he didn't need a nap!

Maddie and I had a great visit with our dear friend Barb for the two hours. She has been such wonderful support through everything, and it was so fun showing her off to Barb! I think Maddie and I are going to enjoy our 2 mornings a week without those rowdy boys, yay...girl time!