And another step...

After a very long time (almost 15 months of knowing about Q's issue), we finally got  to see our surgeon today. If you read last week's post, you will know we were introduced to him (actually, we barged in and introduced ourselves) at a benefit in Austin for CHD research last week. Yet, today's meeting was obviously drastically different, minus the passing of the red wine and bacon-wrapped quail apps.

Today we heard "the man's" thoughts on our daughter. Her surgery details, condition, and prognosis.
As I told my mom this afternoon, it's not so much the appointments that are so draining, but it's the build up time that saps the energy from you. For the past few days and evenings, all I have been thinking about is "this meeting". Eager to hear his thoughts, hopefully hear some positive words. Driving to the appointment today with my babies in tow (Matt was meeting us there), I listened to our Christian station, KSBJ, the entire way. Now looking back, I couldn't even tell you what songs came on - but I do know that every single one of them spoke to my heart. I love how God works that way. When I flipped to other stations, it was either commercials or "drunk in a bar" song - and I just kept going back to KSBJ and in a way, cleansing my mind and soul for this appointment.

I know some of you may be sitting there reading this and wondering: why all the build up for one single appointment?

Well, for MONTHS we have been told that this doctor is almost impossible to obtain, given his heavy surgery, research, and travel schedule. But he is the best. And darn it, I pulled every string I could, blessed every contact I knew, and barraged our cardiologist with endless reminders that Dr. F was the one for us. I just knew it in my heart.

And finally we were in the meeting. After Q's had her vitals taken for almost the umpteenth time - and was an angel throughout that process. And after waiting and waiting (you get used to it after awhile), I finally had to excuse myself and use the restroom. Well, as it always happens, he came in the room with his nurse right after I left. Oh well, I don't think they got past most of the introductory comments before I was back in there.

Probably giving a little back and forth on the whole UT v A&M thing, who knows.

He explained the surgery to us and how they would attempt to repair her specific defects. There will be parts that will be somewhat "routine" and other parts that will be more challenging. This time however, we didn't hear the words "lifetime repair" --- they are going to do as well as they can to give her a long-lasting repair, but that doesn't mean it's life long. And that's only if they work with her "original equipment". If she doesn't have enough supplementary tissue to do an organic repair, then they will have to bring in artificial material which she will grow out of --several times in her lifetime.

Surgery time is predicted to be between 6-10 hours long. It just depends how complicated it gets. He emphasized that they obviously don't run through surgery like that to get it under a timeframe. They will spend as much time as possibly needed to get the best possible results for Quinn. She will go on heart/lung bypass during the surgery and will need blood tranfusions.

Prior to surgery, we will check in a few days before and do a catheterization procedure in order for him to get a better visual of the defects prior to surgery. But again, as good as those images may be, the real decisions will come when they open up her chest (oh, and how I struggle to even type those words), and see exactly what they are dealing with.

We don't have a date yet, but he's in agreement with our cardiologist that sooner is better than later. Definitely before the yuck of the fall cold and flu season. Scheduling will be tricky as we have to coordinate with the cath lab for openings and then Fraser's being available. My gut is telling me August, but we'll see. I should hear in the next week or so and will keep you posted.

From there, the rest of what we found out --- anticipated she will be in the intensive care unit for at least 3 days - then prayerfully moved to the 15th floor where she can start recuperating. They anticipate at least a week there. It all depends on how well she starts to regain her "normal self" - feeding well, playing well, etc. Playing well won't be a problem. However, if it's feeding dependent, we may be there a month, ha!

I know some of this seems like repeat to those who have followed along our journey - and it seems that way to me too - but today was just REAL, you know? A big step. And we heard some things that we'll choose not to share, statistics, geneticas,  and all - and instead choose remain 100% positive that Quinn will rebound from this like a champ, she will again be the fiesty girl that we adore, and will proudly sport her "repaired heart" scar (of which eventually we will think of a clever name!)

I did ask, if all goes to plan, will she be able to dance, play soccer, all those good things that little girls want to do?

He said without missing a beat, "how do you know that she will even want to do those things? She may just want to lay and read books."

Well, either way is just so fine to me. Whatever her little blessed heart desires.

So anyway, friends --- this summer we make lots of memories. We live life. And to be honest, most days, I try not to think about this heart cloud over our head. We just bounce from feedings, to naps, to play, rinse, repeat. I certainly try not to play with her differently than I do Ryan. And in fact, I probably play a little more rough with her because she's just this rough and tumble girl. We'll say it again - our fiesty spirit.

And through this journey I continue to pray that a few things don't get lost. I know it seems like an awful lot of this blog is focused on Quinn --- and obviously we have Ryan, her older by a minute brother. It's a tough balance. He doesn't have multiple doctors appointments, he doesn't have a unique condition that requires special care. So obviously, there are some days where Q takes precedence. But I believe it won't always be that way. And we have our special time with Ry. Where Quinn has difficult feeding and half of the time won't take a bottle, Ryan will eagerly continue to lie in my arms and take his bottle happily. It's our snuggle time. He is fully capable to do it himself and has on many occassions, but lately I just have wanted him to feel special too.

We kind of have our own language and I can just look at him with these "knowing" eyes and he knows or feels exactly what I mean. It's weird - I can't describe it. But when his sister is potentially pitching a fit next to him in the highchair - I will just look at Ryan and kind of raise my eyebrows in a "What the heck?" look and he will just almost nod and then break into giggles. That's our time. Balance is tough with 2 kids, twins or not. Balance is tough with 2 kids, when one is sick and one is not. Bottom line. We're working on it.

But today at our appointment, we all trooped up to the doctor's office. As a family. Because we are doing this as a family. Not Mommy, Daddy & Quinn, but all four of us, Ryan included. He is going to be a part of her recovery process. He's going to have to show her the new tricks he learned while she's in the hospital - and throw out a few new words. She's going to want to catch up to "big brother" - and mark my words, she won't let this slow her down for long.

So that's it for now. I had big plans to get into bed with a tummy full of sushi and a brand new People mag, but felt I needed to write while the feelings were still fresh. Thankfully they are not as raw as they were this afternoon or literally this post would probably be all blubber. And in it's current state, it still may not make much sense. But now it is late and too late for proofreading.

We thank you all again for your prayers. I was thinking about our special prayer warriors who I feel wrap their arms around us on days such as today. We are so grateful to have such wonderful friends and family who know just when to reach out. Repayment for your kindess, support, and love, I'm afraid is impossible. We are in debt to you all.

Trusting His Plan,



Katie Cooper said...

I am so glad today has come and gone. The Lord has big plans for Quinn - so thankful fr the feisty spirit. I'm praying for a fun summer full of laughs and peace too. I know Quinn is in wonderful hands with TCH and Dr. Fraser.

Lyric said...

What a beautiful post. I will be praying for all 4 of you. I have no doubt Quinn will make it through all of this with flying colors! I have faith!

Amy said...

Speaking from the perspective of someone who's had several surgeries, I can't imagine having to put your baby into one. I know you're scared and I understand... not from experience per se, but you know, a little. The whole "empathy chip" thing. I'm honored to pray for this little family that I love so much!!

Lisa Johnson said...

Oh sweet friend, you say it all so well. That was a big appointment and I am so glad it's behind you. You have Quinn with the best of the best and she is going to do so well. I'm so grateful for the way you have shared your journey with us. And about all of those statistics and other info from Dr. F. Remember...doctors always have to tell us the worst case scenarios - it's so hard to hear (we heard it from him too) but remember our God is bigger and stronger than any stat or research information out there. And God has big plans for Quinn and your family. Surrounding all of you with our love and many, many prayers!

lifebytheday said...

We'll keep praying!!

The Brewers said...

covering you with prayer...and will be! I loved your words about balancing 2 kids...twins....one more sick that the other...definitely hit home and I can relate! As a momma that's sent her baby back for several surgeries I can say it's sooo not easy, but it's comforting to know we serve a God so much bigger than all our fears!

Liz Jok said...

We are praying for you, your family & Quinn. Many blessings & giggles!