summertime fun

Life is great...it's normal and routine. We're loving it! Here's a little of what we've been up to...
Seattle Mariner's Game & it was double bobble-head night! Someone was not happy because the playground was at capacity and wouldn't let us go in and play...drama
Enjoying our local community days "Summerfest" at the park & watching the parade
playing with cousins...Grady & Kylie
boating at the river with Allred Cousins...here's Savanna knee boarding for the first time!
tootling outside, playing in the watertable
Pond days...
sunny days outdoors & picking mom's flowers
warm evenings playing catch
rough-housing brothers...they invented the game of swinging on the swings then jumping off into this little plastic pool. Yep, the pool didn't survive this game :)
loving on our new kitty "Cheeto" she's a tough one!

Independence

Today has a new meaning for me...not only are we celebrating our country's freedom but our baby is not a baby anymore. She has found her independence and Maddie's quite quickly turned into a kid. I can honestly say we've seen this transformation happen in the past couple of weeks since her surgery. Maybe it's because I've let down my guard with her, letting her play like a typical 3 year old, or maybe it's because she doesn't feel as lousy and tired from the lack of oxygen her body was so used to getting by on. I assume it's the latter. But watching her par-take in the fireworks we had last night for Nany's birthday party defined independence. She played hard with her brothers and cousins, running and carrying on with her precious half-heart like she has a whole one. She kept up.

I found myself taking big sighs of relief watching her. She's as healthy as she's ever been and it will only be 6 weeks tomorrow since her heart and little body endured surgery. The fontan has done wonders for her and for our family. I'm a fontan fan. Simply put, Maddie is more liberated and it's a joy to witness. I'm so glad we have a baby coming this fall though...I've turned around and this little girl is quickly growing-up. Her heart is happy and so is ours.

a great cardiology visit!

Maddie and Dr. Chun

Maddie had her second cardiology visit since surgery yesterday...the last one put her back in the hospital, so I was a bit nervous with this appt. and came prepared to Seattle this time. We had an early appointment, 8:30 at the main campus, so we left at 4:45am to avoid getting stuck in traffic. Ugh! We made it with plenty of time to spare.

She had the full work-up at this visit: echo, ekg, chest x-ray, sat check and vitals. Her weight is 15.2 kilos (33.4 lbs) and sats were 86%. This is why we're seeing PINK! It's amazing how much 12% more points in oxygen levels can do for a girl :) Her weight has just teetered around 14-15 kilos, not gaining but maintaining for now. Unfortunately, she got a bad stomach flu over the weekend after getting home from our second hospital stay. She was so sick--throwing up 2-3 times an hour for 12 hours straight, fever and could not keep anything down. I was so worried about dehydration, inability to hold down her meds, and of course these types of illnesses always happen over a weekend. Her doctors and I joked that maybe the flu bug helped dry those pleural effusions up. Joking aside, it was an awful flu and thank goodness Children's has a Cardiologist 24/7 to talk to and ease my worries.

Dr. Chun was so pleased with how the echo looked. He did mention that her pressures in her Fontan are still on the high side, so she's getting plenty of use out of her pop-off valve. So glad she has a fenestrated Fontan, I think she'd still be in the hospital if there wasn't that little escape-route hole in the conduit for blood to go when the pressure is high. Other than a great echo report, she had a CLEAR chest x-ray! Yay!!! It was amazing to see this. Her lasix dose has now been cut in half, she'll only be on 20 mls 1x a day instead of twice. Other than the lasix, she's just on a baby asprin a day. She's on sternal precautions until July 10 and we're starting to venture out more with her, we've enjoyed some family get-togethers and the boys are busy with VBS this week.

Getting this wonderful report from Dr. Chun brought me to tears on the way home. It's amazing how well Maddie's recovered...she's only 5 weeks out from a major surgery and getting back to "normal" already, well, a new "normal" for her--PINK and a bit more feisty these days! We love watching her play and run around now with her new found energy and lease on life. We are so thankful and relishing every bit of it.

Princess Lindsay

Our hearts are deeply saddened with the sudden loss of a special heart friend, Lindsay Dean. I've followed her blog since before Miss Lindsay was born. What a courageous little girl and amazing family. Please keep them in your prayers...Lindsay's bright eyes and sweet smile will be missed so very much.
He will wipe every tear from their eyes ~Rev 21:4

our hospital stay in pictures

I've been googling "pleural effusions" since being home and found a helpful website. If you'd like to read more about this post-Fontan complication Maddie's had, here's the link.Her "almost clear" x-ray before the chest tube was pulled. You can see the tube to the left and the fluid that is there is at the base of the tube. The other hardware in her chest includes 4 coils (collaterals that were coiled off), 6 wires holding her sternum together, and 2 clips from previous surgeries (BT shunt & PDA ligation). Her heart is the in the center/right area of the x-ray.
Because of this pleural effusion (the effusion is all of the white on the left side of her chest) she wound up back in the hospital for 5 more days--totaling two weeks, which is what we had prepared for with the Fontan surgery. It was nice we had a short vacation at home in between stays!She ended up with another chest tube placed, high up in the right intercostal space on the midaxillary line to drain the 600+ cc of fluid which had accumulated in the pleural space; the lining outside of her right lung which had collapsed because of the pressure from that fluid.
Maddie had the "go ahead" to roam freely with her chest tube drain. She loved the animals in the hospital, naming each one and we went to see them often. This is "Gaffy the Giraffy" outside of the elevators on the 5th floor.
We also went to the playroom and cafeteria several times. Our nurse would just give us a curfew on when we needed to be back for vitals or meds. It worked out great. Here she is holding up her painting on our way to the cafeteria for supper one night.
Having visitors really helped pass the time this hospital stay...here is Miss Maddie and cousin Kylie Rose enjoying a Barbie movie and chillin' in her bed before Maddie's chest tube was pulled.
We enjoyed a picnic Sunday afternoon with Daddy, Caden and Nany.We were in need of some sunshine!

Children's is a fantastic place but we hope to only return for routine appointments now...crossing our fingers that she won't be admitted anytime soon!
Dr. Meg Vernon (Maddie's other Cardiologist) Mommy and Maddie before the follow-up Fetal Echo on baby #4...we needed to follow up after 18 weeks because it's "standard practice" and our first ultrasound was too early to be sure that everything was ok heart wise. We love Meg and she holds such a special place in our hearts...she diagnosed Maddie's CHD and has been such a wonderful doctor, friend and support. Baby's heart looks perfect!!! 4 chambers, 4 valves, arteries all in the right places, this 'mystery baby' #4 has a healthy ticker! We're so thankful.
Maddie couldn't quite stay awake at mommy's appointment, so she curled right up on that hard chair and slept through it then slept another 2 1/2 hours on the way home. Staying in a hospital is exhausting!

We're Home!

We were discharged today at 11:30...home by 3 and Jace's baseball game was at 5. Yes, we've stayed quite busy today but busy was good. Maddie even got to go to the baseball game!!! Beautiful day + outside = ok for her to be around people. After playing in the hospital playroom each day this week, I came to the conclusion that we can "expand the bubble" a bit. It's good for all of our health, especially mental health!

Right before discharge, Dr. McMullan came by to break the news that there was a bit more fluid on this morning's x-ray than the last 2 previous days. So...we will be watching her closely but no need to re-insert a chest tube and I can monitor her closely at home vs. the hospital. Plus she was feeling so good and ready to bust the joint this morning, there was no way they were going to keep her locked up there! She's doing fantastic inspite of the fluid and was so happy to get home today. Medically, her diuretic was increased and I will pay closer attention to what she's eating (trying for less sodium in the diet) as well as how much fluid intake she has. Overload of fluid and lack of pee will result in fluid reaccumulating. We follow up with her Ped. this week as well as Card. in 9 days. Of course both offices welcome us anytime if anything should come up and now I won't be dismissing her symptoms as post-op pain and fatigue, like I did before. I've pulled out her sat monitor as well as my stethescope to monitor her oxygen levels and breath sounds each day.

I have more to share but I'm tired and ready to go watch a movie with the family. Good night and will update with some pics and more info later! Thanks for cheering Maddie on once again :)

a good day

Today was a day of visitors which really helped pass the time. We had Aunt Jessica and Kylie drive over to visit us this morning!! This made our day. The little girls hadn't seen each other since Easter and I wish we could have gotten their first (of many) embraces on video. So dang cute! Also, thanks to our heart friends: the Heaths (Gracie), Kirsten (Angel Ewan's mama) and the Balma's (Grace's family) for stopping by as well. I so enjoyed visiting with them all. Maddie wasn't in her best mood though this afternoon and needed to sleep off her Versed "hangover" I guess.

Her chest tube was pulled around 2pm after getting the anti-anxiety med (Versed) and being NPO (couldn't eat or drink). She's had 2 chest x-rays today and will have one tomorrow morning to determine whether or not we get to go back home! Her chest tube output today was only 7cc so we're hoping these effusions have given up once and for all. Her x-rays look so much better each day and back to her normal.

This hospital stay has been much different & much easier than the last one just a couple of weeks ago. She has felt so much better; especially since getting her tube out today, dancing around and singing "Jesus Loves Me" as I type this. We are so lucky to have many awesome friends/staff who work here and come by to check on Miss Maddie often- Ray, Nurse Barb and her very caring doctors; Dr. Chun & Dr. McMullan. It's been a good day but we're missing home and the boys in our life.