RSV

 sweet girl still trying to smile in the ER last night

 

I had other posts in mind...like Maddie's 5th birthday party but instead ask for your prayers as she's caught RSV. After a 6 hour visit to Wenatchee's ER last night, we now know why Miss Maddie became so sick and so fast. Her symptoms only began a couple of days ago...runny nose, watery eyes and a cough which turned into a raging cough Friday. I had first attributed her light cold symptoms to the weather we've been having: so windy and cold but it was the onset of this nasty virus. The fever began Thursday evening and she hasn't had an appetite (which if you know Maddie, that's not her). We visited her Ped's office first thing Friday morning and after an exam, Dr. Milnes mentioned that he thought she looked ok, just for me to watch her closely, give her Tylenol for fever or pain and keep in touch. He figured it was just a virus but also mentioned that it could be RSV but didn't test her for it. Saturday morning came and she was spiraling down with a high fever, sleeping most of the day and overall just had a rough day. Her sats stayed in the 70s, her breathing was rapid and her color worried me...after calling on-call Ped & Cardiologist, it was recommended to get her in again to be looked at as well as to give her some oxygen support.

The ER doctor was great and after knowing her test came back positive, they were admitting us to the floor in an isolation room. I discussed the possibility of having oxygen here at home and whether he'd be ok with that as they'd just be giving her O2 support and monitoring her sats and heart rate if they kept her. He was very understanding, agreed with me that I could care for her at home with the exception that I call if anything changes and get her in ASAP. Our major concern now is if she develops a secondary infection and the hospital is the WORST place to be if we're trying to avoid germs and infections. So, we're home now and staying put as to not spread this nasty virus and allow her time to get over this. I've cancelled preschool for the week and have two wonderful Grandma's on duty for the times that I need to be out.

Currently, Maddie's watching cartoons, she's at 2 liters of O2 to just get her sats to her baseline of 85, otherwise she's hanging at 75%. It feels like we're pre-Fontan again. Ugh, I just hope she quickly kicks this and I'm praying she doesn't develop any secondary infection. I'm just hoping that the two years of spendy Synagis shots she had as a baby are still in her system and will help her kick this quickly. Wishful thinking, I know.

It hit me as I was driving her to Wenatchee that she's not a "typical" 5 year old and she never will be normal...when she gets sick, her heart and body are taxed so much more than a healthy child her age. Reality hit me yesterday.

Let's get caught up!

Sam is now 16 months! He's starting to talk and mimic us, which is super cute and we love getting him to say "dora", "oh man", "uh-oh", "ooh ya". He catches on really quick and keeps us entertained! Sam's a great eater but a petite little guy...his nickname from Papa was "Stubby" since he has the shortest legs of any of our kids, maybe taking after his grandpa?

 Maddie just finished up Hoopster Tots...she enjoyed it but had to sit down and catch her breath a couple of times at each practice. She's satting in the upper 80's now which is ok- wished she was into the 90's, maybe she'd have a little more stamina. I'm glad she's learning to self-monitor herself and she's not afraid to tell me or the coach that she needs a break. She turns 5 on Wednesday and we're busy gearing up for her party!

Jace won 2nd place at the Scouts Pinewood Derby...thanks to Dad and our cousin Bud for helping him build a fast Hot Dog car!

We enjoyed a little get-away to Silver Mountain in Kellogg, ID in February. The kids absolutely love this place- skiing during the day and swimming in the evening! There were several families from Royal who went as well which made it such a fun trip!

 Maddie even tried out skiing one day! I wouldn't say she loved it but she's given it another go since! We'll see...I'm not super pumped but Daddy would love her to be able to ski.

Preschool is keeping us busy! This is my last year...I'll miss it but my family keeps me busy enough :) These kids are so social and a blast...lots of characters in this class!

 My mother-in-law treated me, her sister and my sister-in-law to a fun weekend trip to Las Vegas. I hadn't been there in 13 years and whoa, it's changed! We enjoyed shopping, the warm weather & seeing Carrie Underwood in concert. Lesa and I also went to Bodies...so incredible. I highly recommend it! Amazing seeing the many hearts, especially a fetus' heart- made me cry.

Have I mentioned we've taken on skiing as a new hobby? We've went more this season than I have probably skied my entire life! We've made a lot of fun memories with the boys this winter. Caden is a spectacular skiier. Really. He's a natural and now enjoys going over jumps, skiing backwards, doing 360's down the hill as he skis. He'd also like to race he tells us...

I can't keep up with these guys anymore and frequently hear them yelling, "Come on Mom!" Cautious, that's me with these three dare-devils :) Fun times!

♥ hearts ♥

When I see hearts, I think of her...I think of many broken hearts that fight with every beat. I think of the kindess we've been shown. I think of miracles. I think of the many doctors and nurses who save little lives each and every day. I think of strength. I think of those who have lost their battle. When I see hearts, I don't think of the holiday anymore. I think of Congenital Heart Disease.

 

(quilt made by my mama & Maddie's "cough pillow" she used at the hospital after her Fontan surgery...signed  by our favorite doctors & nurses)

in honor of Miss Maddie!

A friend and preschool mom of mine, Jessica, came up with this fun idea to give back for heart month! She is offering a couple of days of photography sessions and will give the proceeds to a charity of Maddie's choice! Hmmm....we have so many favorite charities, which one will Maddie choose?

purpose in the pain

Have you listened to the band Sanctus Real? I've been drawn to their music after stumbling upon the lead singer, Matt Hammitt's blog: Bowen's Heart a couple of years ago. He and his wife have a son with HLHS. Matt has a real platform to speak about CHD awareness...I admire that he does just that at his concerts. I love this video about his journey and the music from his album, "Every Fallen Tear" is just as touching.

 

 

I am a heart mom

On Feb. 2nd, I enjoyed a wonderful afternoon spent with some heart mama's. A fellow east-sider & friend, Colleen, and I drove over to Seattle for lunch and met with eight other women. Yes, driving over to Seattle for lunch and back is so worth it if you get to visit with other mom's in your same shoes. All of our kids are single ventricle kids with their own unique, complex heart. Our kids range from ages 6yrs to 5 weeks old. We are all at different stages in their care. Two of these mamas had babies in the CICU at Seattle Childrens and I was deeply saddended to learn that one of these sweet mama's lost their baby just two days after we had joined for lunch together. The reality of 1 out of 10 will not see thier first birthday came true in this group. Raising a child with a complex heart can be so difficult...battling for and then losing a child born with a CHD is simply unfair.

I enjoyed making heart cookies and gave each mama this poem with an awareness ribbon attached as a favor for coming. I don't know who wrote this but I'd like to share some words that describe each and every heart mom I've ever met...

I Am a HEART MOM

Tough * Blessed * 1 in 100 * Inspiring * Pushed to the Limit * Prepared * Knowledgeable * Compassionate * Brave * Special * Tired * Grateful * On an Amazing Journey * a Germaphobic * Fiercely Determined * Selfless * Aware of What Really Matters * Amazing * Hopeful * Strong Beyond Measure * Courageous * Seeking Miracles * Sleep Deprived * an Ordinary Woman Caring for an Extraordinary Child * Living for the Moment * Taking Nothing for Granted * Doing What I Think is Best for MY Child * Loving * Willing to do What's Required of Me * "Okay" * a Cheerleader * a Warrior * Worried * an Example * Strength Personified * an Advocate * in Survival Mode * a Student * Lucky * Pleading * Following My Instincts * Nervous * Stressed *

Stronger than I know!

 

my hero

Maddie has been more inclined to talking about her heart, asking questions and giving her side of things lately. I love that she's voicing her feelings and opinions when it comes to her heart. Recently, I received a package in the mail from Seattle Children's. It was her surgery DVD's. Yes, they are recorded and you can request them with medical records.

Since the little ones were taking naps, I decided to pop in her Fontan surgery DVD. I've watched her first heart surgery, so I wasn't new to this type of footage, but I admit that I'll always be taken back when I realize that it's my daughter's chest that is cracked wide open while small tools, surgical thread and needles work away on her beating heart. My chest always tightens and the lump in my throat does not go away. I am in awe of her surgeon each time I see this...how does he do it? It's simply amazing. Well, as I was trying to figure out what "step" he was on, Miss Maddie walked in and sat in my lap. I didn't feel the need to turn it off or buffer what I was viewing and she asked very innocently, "is that my surgery?" Gulp. I quickly replied that yes, it was and that those were Dr. McMullan's hands working on her heart. She wasn't grossed out or confused by it. She asked if she was sleeping during it and so we talked a minute about the strawberry gas she breathed in before mommy left her in the surgical suite and that it put her to sleep so she wouldn't feel it. I love this about Maddie...she has always taken things with stride. But the next words out of her mouth I will never forget...

"Mama, I was so brave wasn't I."

It's moments like these that I know God knew what He was doing when He sent Maddie to us. Only He would know that she could endure this and do it so well. He knew that she would be the one to teach us. Maddie is brave, resilient in many ways, and will always be my hero.