Friday, May 31, 2013
Thursday, May 30, 2013
Wednesday, May 29, 2013
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.
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.
Friday, May 24, 2013
Wednesday, May 1, 2013
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.