Heart Check Today...and Team Lia

We took Lia back to CMC today to see Dr Lemler and our friends at the Heart Clinic.  I did all the normal things to prepare...packed a bag of things to do since we are usually there for hours, did a lot of anxious praying (not because she was giving me anything to worry about...just because that's what I do before her heart checks), thought meticulously about her outfit to make sure it was something that might give her a little push of extra ounces on the scale, yeah...pretty much all the normal things.  This time, though, I added to my list "notify the school and her teacher of where we would be this morning"...that was something I hadn't really thought about before.  

After the typical morning of sleepy kids not wanting to move fast enough and searching for folders and lost homework at the last minute, we dropped the boys off at school and we were on our way.  We got to Children's in plenty of time and found a perfect parking spot.  We checked in and before we knew it, they had called our name to go back.  Things were moving at a peculiar "faster than normal" pace.  They were swamped...but that's pretty normal on clinic days.  They got her weight (she's gained a whole kilo, people...big deal for this lifelong 10th percentile girl), BP & O2 sat (93%...a number I honestly never thought we'd see).  So far so good...but we still had the 12 lead EKG to think about and the echo that I just knew he would order last minute "just to check on things...".  Next, in he walks.  While we went over how things had been going, they came in and did her EKG.  I multi-tasked as usual and continued to answer his questions while keeping my eye on her EKG rhythm...P waves, check.  Not a normal sinus rhythm by any stretch...but we like P waves, and that's what she was missing during her operation that caused them to put in the pacer wires..."just in case she needs them some day."  She had P waves today.  Another victorious blessing.  Dr. Lemler checked her out really good and finally said, "Well, you guys are paying me an awful lot of money for me not to have to do much."  It's worth it...and we told him we'd be willing to pay him more.  We go back in 6 months...and guess what?  No echo today.  I stand corrected.  Happily.

Lia loves stickers...and stickers she was given...

I have a few Team Lia pics to post from last weekend's Dallas Heart Walk.  We had an amazing turnout, considering it's probably the busiest time of year for most people with kids our kids' ages...not to mention the whole million degree temps with absolutely zero breeze thing.  Other than that, the Heart Walk was great.  Chaotic as usual, but great.  This year was particularly amazing because we walked without the weight of the pending Fontan on our shoulders, and it felt really good.   Did we ever have something to celebrate... Now get ready for picture overload.  Here goes...

So obviously...our family. 

Our beloved Coach Rocky, her daughter Ainsley, and the Stone kids.

2013 Team Lia 

(minus several who were fighting traffic and raiding the closest ATM for cash to park)

One of my favorite NICU babies and his family

My Baylor NICU and L&D girls...

These ladies have cried a few tears with me over my girl in the last 5 years

My sisters and Lia... Speaking of sharing some tears... Wiggins women know how to cry. And laugh. And protect. It comes from deep down in our ancestry. 

Lifelong friends of Corey and now lifelong friends of mine...love these families. 

Some of the girls I used to work with...all amazing nurses and people that I'm blessed to know. 

Lots of Colby's fball team were here...just missed many of them when snapping pics 

The faithful, loyal Lia crew were here as always....special people and prayer warriors for our girl

Madison and Paige...some of Lia's biggest fans 

Last but not least...Miss Sassypants herself

As I uploaded these, I realized how many people we missed getting their pics. I'm sad about that. Thanks to all of you, any who showed up to brave the heat and walk with us. Thanks to all of you who ordered shirts. Thanks to each and every one of you who have ever been on your knees in prayer for our family. We know who you are, and we love you all. We thank God every single day for you, our amazing support system. We are so blessed to be able to share Lia with each of you. 

Endings...and Beginnngs

What is it about endings?  Why are they so hard, even when we have even greater things ahead of us?  A precious phase of our life ended today...the moment we dropped all three of our kids off at school. No more babies or toddlers, no more preschool, no more diapers and sippie cups. And as ridiculous, or cliche as it is...I'm really sad about it. Oh I know...I'll  get over it soon enough. I'll have "my freedom" and will be more productive.  On my days off, I can now drop them off at the load line with my stretchy pants and glasses on, coffee in hand, go straight back home and back to bed if I want (like I'm so sure, there will still be a messy house to deal with, piles of laundry taller than Lia, and groceries to buy...). But right now, in this moment, I don't care about any of that. I loved that part of our family's life. I barely remember how hard it is when they were babies...instead I remember chubby cheeks and slobber kisses. I remember sweet baby cuddles and new milestones reached every day.  So as I drop off all three of my babies today...especially the baby of my babies, I think I'll allow myself to be a little sad. 

And then, I'll remind myself that we've been through much harder things than starting Kindergarten...only 12 weeks ago.  

And I'll remember to be grateful. 

I flash back to 5 and a half years ago... the day we found out about Lia's extensive heart defects. I remember so clearly as we sat in that tiny office talking to Dr Matt Lemler, the one who read her fetal echo, and is now her pediatric cardiologist. I remember him telling us what he thought he saw on the echo (which was spot on correct, by the way) and us dying inside. I remember looking him in the eye and asking him, "What does this mean for our baby's future?  I mean, will our baby live to be 100?"  I remember his answer...  "No.  No she won't... But Mrs Stone, most of us won't live to be 100."  

So there you go.  That uncertainty has never left us.  I think about it every single day. 

 But here's the deal...nothing's for certain. Nothing in this life, anyway. What is certain?  What do we know for sure?  Heaven is certain.  God's promises are certain.  His faithfulness is certain. That's what we can cling to and find comfort in.  And so we do just that. 

Today, our little miracle, Lia Kate Stone starts Kindergarten.  That is a milestone that was never certain for her.  Today, she is healthy and strong. She is full of joy. She is ready.  And we are grateful. 

Thank you, Lord. With tears in my eyes, I can never say Thank You enough....

With these two guys to look after her for the next two years...I think she'll be ok.  I'm thankful for them too.  Let's do this 2013-2014 school year....

Looking Back Over the Summer....

Time is a funny thing. It can go by so slowly...it can go by so quickly. This past summer has done both.  As I reflect on our family's summer, I am amazed. We started out the week before school let out at Children's Medical Center, enduring the event we had been dreading for 5 years. We sent our precious baby girl through those scary doors into the cardio thoracic operating room for the third time in her life...and we were devastated. We were terrified and literally sick to our stomachs. We were emotional. We were also comforted, confident, and hopeful. We were surrounded by you all...all who have loved on and prayed for our family for years now. It was really hard...really hard, but looking back now, I realize just how well Lia did. 6 days.  6 days was all the time she needed in the hospital and that was pretty good. Once again, we realize just how blessed we have been. Here are some pics to just remind us how very far our Lia has come...

Once Lia started to really recover, our summer took off. Since then, we've celebrated her 5 year old birthday!!! What a special, special birthday it was. We had so much to celebrate. 

That princess party just got us warmed up for our Disney vacation....which was one of the biggest things we looked forward to as we got through the first part of the summer in the hospital. 

Disney was all we ever dreamt it would be...it was wonderful, and magical, and the weather in California was perfection...  I cried a lot while we were there, but that's no surprise. I'm a crier. I was really just so grateful we were able to go. I was grateful for the boys sake...who are always so resilient when it comes to some of the sacrifices our family makes for Lia.

 So we planned this California trip around The Rangers schedule...what!?!  That's normal, right?  We stayed in the same hotel as The Rangers and although weren't allowed to ask for autographs or pics, we did plenty of stalking anyway. I would've liked to do some additional stalking, but was literally so exhausted every night I could barely manage to get in bed before falling asleep. I know I wasted many opportunities in that regard, but sleep is clearly high on my list of priorities because you won't meet a bigger Rangers fan. We were also able to overlap our vaycay with some friends and their vaycays....which made it all even more fun!!!

Here was our awesome, slightly obnoxious sign that made the broadcast...

We went to two of the three games against the Angels...swept those suckers, tied up the AL West and went on about our business.  You're welcome Rangers fans.

Beach pics!!!! The beach in California is much different than Florida. You probably all knew that but I'm learning things as Corey is perfecting the "earning miles with credit stuff" and we are getting out more. We were actually a little chilly on the beach. I thought I might suffer from hypothermia when I stuck my one foot in the water.  Not a fan. However, just to lie on the beach, without any type of umbrella, with that perfect cool breeze coming off the ocean, in the full sun?  Yeah...that was doable. It was awesome.  I could've stayed there for hours... and we would have. Except for the fact that we had an incredibly important baseball game to attend that night. (And we couldn't let you Rangers fans down, now could we?)..,

Notice I didn't add any pics of myself here...that's for obvious reasons ;-)

Now to Disney pics...I can't wait to download all of them and make a vacation book from Shutterfly or whatever but these are a few. 

That's about it...lots and lots of celebration, gratefulness and fun crammed into this post.  It's time to start school.  It's time for the Dallas Heartwalk and Team Lia. It's time for Charger and Jacket football. I love it all. I'm thankful for today. 

"When you hope, be joyful.  When you suffer, be patient.  When you pray, be faithful."     Romans 12:12

Worry Does Not Guard the Sacred Future...

We went to see Dr Lemler this morning.  We've seen him a couple of times since we brought her home, when we've seen the surgery team. Officially, those times before today were to see the surgery team only, but he was able to pop in each time and put his eyes on her. Today's visit was scheduled with him, so he was able to spend a little longer with us. 

So he walked in the room and said, "Rumor has it...that you've just had surgery...but looking at you I don't really know if I believe that."  In a nutshell, she is doing awesome. We've been tweaking little things in order to balance her fluid and electrolyte status, while trying to make sure no pleural effusions come back. Remember, that's why she had the chest tubes after surgery. Sometimes after the Fontan, those will come back after the chest tubes have been removed. That's why they keep her on high doses of diuretics (to help her pee off the fluid). The problem is, with being on those kinds of meds, it throws off her electrolytes so we've been chasing those as well. 

Today her chest X-ray looked perfect (no effusions), her electrolytes were all in good range again, and her EKG was good (no weird arrhythmia). Those are all good things that we've been dealing with since coming home. Now, the thing they looked at today was her heart rate which was elevated some. This can be from being on too much diuretic and being a little on the "dry side"...  He went back and forth over whether to stop one of the diuretics or "pee meds", (which is what four year olds call them.)  He decided to let us take her pulse at home this evening and call him with it. If it's still high away from the hospital he may just stop one of the meds. We will see...

All in all, she continues to amaze everyone...including me. It's hard to believe we are on this side of this surgery.  I know I've said that before, but I still can't wrap my head around it. I'm still having a hard time relaxing. I've been trying to allow myself to just breathe and openly accept this gift we've been given. It is such a gift. She is such a gift. I am so grateful. 

I've read something lately that I love and I want to share with you all.  I share it because I think we all need to hear it, and put it into practice.  I also share it because I need to to read it again, say it out loud to myself, type it in this blog, and do it.  I need to adopt this way of thinking...I imagine I will have to work on this for the rest of my life. 

This is from a blog I just read yesterday...

"Worry is a cornered dog, growling and hair bristled, trying to fend reality off, snarling and putting all its energy towards the fight that is coming.

In Brennan Manning’s new devotional, Dear Abba, he writes about surrender, which is the opposite of worry.

“The emotional state of surrender” writes Harry Tiebout, “is a state in which there is a persisting capacity to accept reality. It is a state that is really positive and creative.” When the Christian surrenders to the Spirit on the unconscious level, there is no residual battle, and relaxation ensues with freedom from strain and conflict. Submission, on the other hand, is halfhearted acceptance. It is described by such words as resignation, compliance, acknowledgement, concession, and so forth. There remains a feeling of reservation, a tug in the direction of non-acceptance. Surrender produces wholehearted acceptance.

My wife Mary has a mantra. Sometimes mantras are clever but soulless, and so they dissipate like morning fog. But sometimes they are life preservers. Mary’s mantras are always life preservers.

“Worry does not guard the sacred future,” she says.

“Who are you?” I say back.

She means that there is a sacred future, one that God is inviting us to both join and co-create, and it’s filled with possibilities, uncertainties, what ifs, joy, and pain. And we cannot guard that sacred future. We can only walk into it, whatever it is, choosing to believe that God is good (another mantra that can be a life preserver).

She means that worry doesn’t help the sacred future to come more quickly, or without pain.

She means that in order to walk into the sacred future, we must accept reality, no matter what reality is, and surrender is required.

“Be it unto me, just as you said.”

Another Mary said those words, and when she said them, they were words of surrender. I’m sure there was some worry along the way. Surrender doesn’t mean there are no more highs and lows. But whatever worry she did have, she didn’t let it turn her into a snarling dog, bracing for a fight.

Surrender walks into the sacred future, hand-in-hand with One who knows how to calm the snarling dog, and lead it into freedom.

And you get to choose how you will live, worry or surrender."

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I love the mantra "Worry does not guard the sacred future"... I love it. I want to live like this.  And I will spend the rest of my life trying to. In the meantime, though, I will choose to accept His gift with my whole heart. Thank you....Thank you so much God. :-)

This is a picture of Lia next to the plaque that hangs on the wall in the CMC heart clinic.  Lia was the first baby we did the "Babycam" or the "Virtual Crib" project on at Baylor. I was able to see Lia on a webcam after she was transferred to CMC and I was still recovering at Baylor.   We are now able to do that for every baby born at Baylor with serious heart defects requiring immediate transfer to Children's. Obviously, this program is very near and dear to my heart. She's come a long way since then...

Just a cute pic of Lia and her daddy waiting to see our friends in the CMC Heart Center today...