Miracles...

What a day...What. A. Day. Our friend Sara and her family got good news today. The very best of news. Finally. Sara had a successful operation this morning at MD Anderson to remove a tumor she has been fighting for over a year. She carried a healthy baby to term while getting chemo after finding out early in her pregnancy about her cancer. After delivering Alice safely, she found out she still had cancer...and it had spread. She endured months and months of chemotherapy as a mother of not just a newborn, but a toddler as well. She endured finding out that the tumor was still too big to remove, or that it had grown, as she was waking up from the first attempt...and failure...to remove it. She then endured a "chemo sprint"...heavy doses of chemo every other week for a smaller, specified number of treatments to hit the cancer hard and fast. And hit it hard and fast it did. That's the news we received today. 

This family...what an example of faithfulness and grace. Friends and family prayed...and prayed...asking over and over for her to be healed. This family never gave up...not for a minute. Faithfulness. Things don't always go according to our deepest desires or plans. Faithfulness. They kept plugging away. Faithfulness. They continued to ask...and continued to be told, "Not yet..." Faithfulness. What an example to all of us, to all of our kids. I am amazed. Trey and Sara, you define Faithfulness. 

Lia had a pretty incredible day too. It had its own set of challenges, but she had a very impressive day. She had a great night last night. She was comfortable and slept off and on throughout the night, which is more than I can say for myself or mom.  They gave us the boot out of the CVICU around 11 this morning, which seemed really quick to me but they kept saying she looked good. I believe them. 

On the cardiac floor today, Lia's had to walk to the bathroom twice. That's no small task when you have 2 chest tubes, but she's done very well. It's hard to balance her pain control with waking up from anesthesia. She only had open heart surgery yesterday... She's uncomfortable, sometimes really uncomfortable, but seems to be a little disoriented and confused when waking up from her narcotics. It's hard to balance all that out with getting up and walking, but trying to keep her comfortable as well. I'm hoping tomorrow is easier. Nobody's mentioning taking out her chest tubes yet.  Hopefully she will get a little more comfortable and gain a little more strength each day. She tires out really quickly right now. But again...open heart surgery...yesterday. She's also 4 years old...so I think she's doing awesome. 

Here are a few pics from today:

Before we left CVICU, we had lots of lines to remove and dressings to take off. We all had to wear a mask, even Lia. 

Later we got to participate in the Pet Therapy program...

She wasn't really sure what to think...

This is what she did a lot...and what she's still doing. We'll get there. She definitely isn't her sassy self yet, but every now and then our Lia shows back up. I'm ready for her to be completely back. Baby steps...she's doing good. 

Just Hangin Out...Working on Waking up.

So Lia's doing really well, according to all the experts around here. Her nurses are saying it, and so are the doctors. She is having a few labs and things they are working on tweaking to get them in the right range. Her blood sugar's up some, which they say is normal after being on bypass. They are going to put her on some insulin to get that down. Her BP's a little on the high side, so that causes her deoxygenated blood to shunt across the fenestration (pop-off valve).  That in turn brings her o2 sats down some too. There's a lot going on here. Lots to think about....so much more than the obvious "heart stuff".  I'm learning more than I want to...

All that being said, she's done great. She's not in pain, she wakes up every now and then and asks for water or sprite. She's been breathing on her own for hours now. She's in pretty good spirits, all things considered. 

I'll admit...I've had a few moments today. I had moments where I felt like I couldn't breathe.  I've had moments when I wanted to throw up. And I haven't been hungry. All. Day. Those of you who know me best know that means something. I think we may have a long night...but we will be better tomorrow. Not only Lia, but myself and Corey too. I need some time to take a breath and realize that we are so blessed. So incredibly blessed. We will continue to press on...one small hurdle at a time. 

This is what Lia's up to this evening. She's resting peacefully. I'm so grateful.  

Please, please, please continue to pray for both Lia and Sara Laminack. This is the week of miracles. Pray for one more tomorrow for Sara. I don't know about you guys, but I'm ready for the Laminack's to  be able to see that "light at the end of the tunnel". It's time...and that family deserves it. 

Off Bipass

Our cardiologist Dr Lemler came in and updated the masses...Lia's off of Bipass. He's finished with the repair.  Now they have to watch her closely, and stop any bleeding. The last thing is to sew her up.  It should be another two hours or less. Thanks for all the prayers...

Lia's special friends brought her another Build a Bear last night. Such sweet baby girls and good friends to Lia. 

First update

The OR  nurse just called into the room where we are waiting. Lia fell asleep peacefully, without drama. All her lines are in, and they are starting the incision now. Depending on how much scar tissue she has underneath her breastbone from the previous surgeries, is how long it will take to get going on the repair. They will update us every hour. I'll let you know as we hear....thanks again.  Love to you all. 

I'm just gonna post random pics of Lia with each update. This is her with her special new pillowcase from her sweet friends The Moores. It's perfect....I really need to learn to sew. 

This Is Our Prayer...

Big day for Lia today at CMC. She had her marathon preop day, and she did great. Here's a little recap on what we did...

Starting out and waiting for them to call our name...

First stop...X-ray. 

Next...lab draw. She never flinched. Heart patient of the year...I am amazed by her. 

This lady was swift and sure with the needle. Thankful for her ...

Joann the Nurse Practitioner was awesome. She explained everything about tomorrow, did an assessment on Lia, and took us on a tour of the CVICU. 

Next, we met with Chelsea the Child Life Specialist. She and Lia played with lots of stuff in her box, and she was able to listen to her heart. 

We visited the trains....for the thousandth time  ;-)

Ate a little lunch...

Played a little as we waited on Dr Forbess...

Played some more...waited some more.

And did some huggin.  

We finally met with Dr Forbess, her heart surgeon.  He went over some things and we signed all the scary consents. 

So that was our long, but okay day at Children's. We will arrive back in the morning at 6 to check in. All of Lia's labs and X-rays looked good.  She is healthy, she is strong. It's time. And we are ready. 

We came home to sweet friends who are holding us up by pitching in with the boys, and dropping off gifts for the princess. All day long, I saw countless people from all aspects of our lives changing their profile pics on Facebook and sending words of encouragement. A good friend from work came over with two cards filled with well wishes and prayers from the BUMC NICU and money cards and cash for our family.  I have so many stories just like that. So many. I can feel His hugs and love through each and every one of you. Corey and I feel the love and encouragement and we are so grateful. I wish all of you could know what this feels like...because I am incapable of describing it. 

Sunday, we went forward at church and had our dear friend Greg read a letter. We chose him because he loves Lia. We chose him because he loves our family...  I know many of you weren't there to hear it, so I wanted to put it on here. This is our prayer for our sweet Lia:

Dear Saturn Road Family, 

    Lia's third open heart surgery, the Fontan, is scheduled for Thursday, May 30th.  We are asking you to pray for perfection.  We are asking for a perfect surgery with no hiccups.  Please pray for her surgeon,Dr. Forbess, and the entire medical team.  Please pray that we face this with unwavering strength and courage.  Pray that for us...Lia was already born with both of those things.  It's her parents and family who really need that prayer.  

    

    This time, we face this along with two much older, much more protective big brothers.  Please pray for the boys, who will no doubt be under many of your family's care and who will be anxious as well. We also ask for prayers for her cousins Kade and Blake, who treat her like their own little sister.

    We face this with a beautiful 4 year old little girl, with a personality as big as this world, who this time around has questions.  Although we have always talked about her “special heart”, and we have done our best to prepare her, we know she will very likely  wake up wondering what in the world has happened to her, and why her mommy and daddy didn't protect her from it.  

    We face this with faith that things will go well, but with fresh memories of sweet loved ones who faced the same, and we have lost.  

    With all that being said, we trust.  We trust in the One who created her exactly the way she was born.  On purpose...with a purpose.  He loves her so much.  We don't know much...but THAT we know.  

    You all have "prayed us through this journey" for 5 years now...and our family has been blessed far beyond what we even realize.  We will never be able to tell you how much we appreciate you being with us every step of the way.  We thank you for the prayers that we know will continue on behalf of our Lia.  

                            Sincerely,  

                                Corey and Lisa Stone

So that's what we are praying for and what we ask you to pray for us. 

I hope some day when we get to heaven, we are able to see "the prayer log"....The list of everyone who ever lifted our baby girl and our family up in prayer. I want to see it. I know it's amazing. God tells us to ask for what we want, and that's what we have done. 

Now, while you guys are praying for Lia in the days to follow, please pray for another courageous, strong, amazing lady....Sara Laminack. She has been fighting cancer for well over a year, and has a big surgery of her own on Friday at MD Anderson. She is one of the strongest people I know.

Thank you all again for everything you've done for us...and for everything you are yet to do. 

I believe this is the week of miracles. 

Getting Closer...My thoughts.

Well, here we are...6 days from now we will be sending Lia to the OR for her third open heart surgery. This has haunted my thoughts for years now. I've imagined almost every scenario...the best and the worst my mind was capable of creating. The mind is an amazing thing...where it can take you. The unknown can make a person crazy. 

I honestly feel like with every delay of this surgery has come a greater preparedness. We thought Lia would have her Fontan the summer she turned 3. They tweaked a few things in the Cath lab that cranked her oxygen saturations from mid-70's to mid-80's. When they were able to pull that off, they decided there was no need to do the surgery that year. Ok...sounds good. We were surprised, but thankful to put it off. The next summer, the summer she turned 4...same story. Her sats were still mid-80's, she was growing, she was healthy, so they put it off. Again...we were glad. The difference this summer?  She's starting Kindergarten. She's only getting older and more aware everyday. At this point...no longer any need to put it off. So we had our heads right...or did we....with May 6th, 2013. Then the next delay came. This delay hit me harder than the others. The whole "preventative antibiotics debacle". Wait 4 weeks. We can't prove she's well.  Ughhhhhhh.......ok. We trust their judgement, and wait is what we did. Two days later, Lia had a cold. On May 6th, 2013, she ended up with a full blown cold. So there ya go. 

I can't explain what has happened in my mind the last 4 weeks. I've managed to reframe the way I have been thinking about this surgery. It's nothing I was able to do for myself, it just happened. After Lia ended up with the cold on the day she would have had surgery, I've been filled with peace. Nothing more, nothing less...just peace. I'm not afraid. I KNOW without a doubt, that our God is actively involved. He is protecting her. He is in charge. He is sovereign. And no matter how things go for Lia...He knows about it before it happens. 

Now, am I excited about my precious, beautiful, four year old little girl having open heart surgery?  Of course not. Am I still dreading it, and imagining my way through all the different scenarios? Yep...still doing all that. But this time, I'm reframing those thoughts with  "His will...His way...He knows things I don't...He loves her more than even I do...He created her just the way she is."  And that helps. Then the peace returns.  

Lia felt the need to "get out of the sun"...while staying on the float. 

We had some fun today swimming with The Moore girls. It was just what we needed. 

Loving friends?  Support?....We are blessed beyond belief with both of those. Check this out:

Last night after Colby's game, Coach Rob and the team presented Lia with a signed game ball to show how much they all love Colby's little sister. Then they bowed their precious little heads, and prayed for Lia. Because they love her. Because they love Colby. It was really something. 

Fontan's postponed...

So Children's called this morning to let me know that Lia's surgery Monday morning was being bumped to 11am or noon.  We were scheduled to be the 7:30am case, but Dr Forbess needed to do another procedure first thing that morning instead.  That was not great news to me...I really like the idea of being first thing, with a fresh, rested surgical team.  With that being said, I understand that these people are professionals and perfectly capable of performing this surgery at noon or any other time of day that they are called to do it.  I also know that they would never agree to start her surgery at a time that they felt like would be unsafe.  They want to keep these kids as safe as possible...after they called me back this afternoon, I know that for sure.  

While I was on the phone with them, I told them that I wanted to make sure they knew that Lia was finishing up a round of antibiotics.  Her pediatrician had placed her on antibiotics after we found out that Jace had tested positive for strep about a week and a half ago.  I had told her that Lia was scheduled for surgery on May 6th, and that she was running a low grade temp after her heart cath.  We both agreed that in order to protect Lia, it would be a good idea to cover our bases and put her on antibiotics as well.  I told that story to the Nurse Practitioner this morning, along with the fact that I was feeling terrible today with what I know is a head cold.  Lia has also had a runny nose now for a couple of days.  I wanted everyone to know these things, because I wanted to make sure it was ok for her to have the surgery after having been exposed to my cold and maybe Jace's strep.  

They called me back this afternoon to tell me that both Dr Forbess and her anesthesiologist had agreed that the right thing to do would be to postpone her surgery for around 4 weeks.  Four weeks!?!  I asked why, and they explained that they were concerned that she was still on "preventative antibiotics" and that those might be masking a real infection.  Now that she's been on them for almost 10 days, we can't prove she isn't sick.  So we wait....that's the safest thing to do.  

So there it is...after a few hours of heartbreaking frustration, crying, and now a nap to top it off, I think I am ok.  How do I possibly describe how this feels?  I can't.  I'm not a good enough writer.  It's not like I'm wanting my 4 year old to have open heart surgery.  It's not like I'm upset with the doctors at Children's for wanting to be careful.  It's not like I'm not a reasonable person who also happens to be an RN with a good understanding of what an infection can do to an already compromised child.  So why am I upset?  

Plans...that's why.  Stupid plans.  It's the whole "controlling things" that I can't seem to let go of.  This puts Lia 4 weeks later in the summer before she can swim.  This gives her 4 less weeks to fully recover so we can go to Disney in August.  This gives us more weeks to find places for the boys to hang out while we are in the hospital because they won't have much more school when she goes in.  This puts me missing the beginning of the summer NICU internship that I teach instead of giving me a month to get ready for it when I get back to work.  Most of all, this gives me 4 more weeks to feel the weight of all of this pressing on my shoulders.  That's the worst one of all....

Here's the deal, though.  Plans can be rearranged.  Vacations can be switched around and we are fortunate enough to have plenty of people to pawn the boys off on.  People who love having them around and with whom they love to go with.  I have more than enough good support at work to handle my being gone the first week (or more if I need it) of the the internship.  

About that weight pressing down on me?  Yeah, it's there. It will still be there for the next 4 weeks.  But the feeling I get reminding me that there is a reason for this is stronger than that weight.  I believe things like this are no coincidence.  Yes, it is enormously disappointing.  Yes, my heart broke when I realized that instead of this being over and us recovering at home, we will only be beginning on May 30th.  It's very difficult to get geared up and gather all of the courage you can muster to face something, only to find out you have to wait a little longer.  That's the only way I can describe it.  With all that being said, we will regroup and press forward.  I gave myself a few hours to feel sorry for myself, and now it's time to move forward with our new plans.  

As many of you have already said today...and one of my wisest friends put it best.  "God's plans are bigger than ours."  I believe that He just might be protecting Lia from something...and I'm gonna go ahead and let Him make these kind of shot calls.  I trust Him.  I do.  I keep saying that, because I do.  

"Trust in the Lord with all your heart, and lean not on your own understanding...Prov. 3:5"

This is not about Disney.  It's not about convenience.  It's about something much bigger than that.  It's HIS plan, not mine.