Saturday, March 16, 2013

Here we go....we have a surgery date

So we have dates now...for both Lia's pre-surgery heart cath and her Fontan.

The heart cath will be on April 19th.  Lia's cardiology team want a heart cath to be done before any big open heart surgery.  They are able to really get some important information about the pressures in her heart and other things in the cath lab.  Lia will have an extra procedure in there this time.  In addition to the specific heart cath doctor, Dr. Nugent (who has always done her heart caths in the past), there will be another team of specialists who are looking at the electrophysiology (EP or heart rhythm) of her heart.  The EP specialist is Dr. Scott. 

Apparently, Lia has an abnormal "delta wave" that shows up intermittantly on her EKG.  It's something she's always had, but because of her upcoming surgery, they want to look a little closer at it by doing an EP study.  I had Dr Lemler (Lia's cardiologist) show it to me last time we were there.  Lemler says that she's never shown any signs that it is causing her any problems, and it's possible it never would.  The thing is, once they do the Fontan, it takes away the direct pathway to that area in her heart that they could reach by heart cath.  In other words, if she DID end up symptomatic from this extra electrical pathway as a teenager or later and they needed to do an intervention to fix it, they would have to do another open heart surgery.  As it is now, before the Fontan, they can do an ablation in the cath lab if they need to.  Makes good sense to me...

I am so thankful he picks up on things like that.  Obviously, I'm no pediatric cardiologist (and never would claim to be any sort of heart expert) but I do know my way around an EKG.  I've been an ICU nurse for 15 years...I'm telling you I would have NEVER seen that tiny, minute, extra delta wave.  When he pointed it out, yes I could see it.  But I wouldn't have noticed it on my own...I'm just so incredibly thankful for Dr Lemler. 

So if they end up having to do an ablation or any intervention in the cath lab, we will most likely stay the night in the hospital afterwards.  It's just another safety net they place under us.  I appreciate that. on to the Fontan.  It's scheduled for May 6th.  We will spend the day at CMC on the Friday before to do all of her pre op labs, cxray, and other evaluations.  This will most likely be a long, tiring day.  We are scheduled for Dr Forbess's first case on Monday the 6th at 7:30 am.  We will get there at 6 am.

Many of you have asked us what this surgery will do for Lia.  I've found a video that helps to explain what they've done so far in the first two surgeries, and then what they will do in the Fontan.  Remember, every heart defect is different and they tweak things to individualize the surgeries for each child.  Lia was born with tricuspid atresia, so the part that she is missing is her right ventricle.  This seems to be more rare than those kids born with the left ventricle missing.  She also had transposition of the great vessels, so her surgery is a little different to accomodate that as well.  I still think this video is informative and gives you all a good idea of what Lia is dealing with here.

Interestingly enough...Lia chose to wear her "Fight Like A Girl" Dallas Heart Walk shirt yesterday, the day we finalized these dates.  Did she know I was on the phone with Children's lining all of this out?  No.  Coincidence that she picked out this shirt to wear?....I don't think so.  She is going to be just fine....

Sunday, March 10, 2013

Let's fire this blog back up again....

Well, after close to 3 years of not blogging, I've decided it's time to start again.  We are closing in on another phase in Lia's heart journey.  It's time for her Fontan, the third stage of the three staged repair we started when she was 6 days old.   It's strange to think that we've known about Lia's heart for 5 years this month.  March of 2008...the perinatology visit that literally changed our lives.  

I look back through these posts and so many memories flood back.  They are most of all good memories...but some heart wrenching ones as well.  We've changed so much over the last 5 years...We've learned many lessons, mostly I think about perspective and trying to live in the present.  Corey and I made the decision all those years ago to live our lives today.  We are happy today.  Our kids are safe and healthy today.  Today is a very normal, uneventful day...and we appreciate that.  We wonder about the future, who doesn't?  But here's the deal about facing the unknown...we can't let it rob us of our today.  We are blessed TODAY.

Tomorrow I'll call Children's Medical Center and schedule Lia's heart cath and her Fontan.  The plan is to do the cath late April to early May, and do the Fontan early to mid May.  Even as I type those tentative dates, my heart is heavy.  This is not unexpected news...we've known now for 5 years that she will need this surgery.  So much time and so many things have happened since then and I'm sad all over again.  We've been able to put this last surgery off for two years.  She has always looked so healthy and done so well, they weren't in any hurry to do it.   She still looks good, but she is due to start Kindergarten in the Fall and at this point, they don't see any advantage to put it off any longer.  I get it.  I understand the physiology of her living with 3/4 of a heart, and the fact that she HAS to have this last stage...and I'm still sad.  

"Are we scared?"  People ask me that when we talk about Lia..."What will her future be like?" I guess we are scared...but in no way does that mean we don't trust our God and what he has in store for our family.  Without that to lean on, I don't know how anyone could handle this...  I believe with 100% of my own heart, that He has never left us.  He has never left our side.  I also believe that about other precious families we know who have traveled similar pathways, and their children are no longer with them here on earth.  I think that's what scares me... The fact that HIS plan may not match up with our deepest desire.  Even so, I trust Him.  I do.  Are we scared?  Yes, I think we definitely are.  But we will face it as courageously as we can, head on, without hesitation.  We don't have a choice.  Sometimes the most difficult things in the world are the ones worth facing the most.  

Those of you who know me best know that you will see me in tears in the next few months.  It's just what I do.  This heart stuff isn't easy, and I can't always pinpoint exactly why I may be crying that day.  But I do know for a fact that there will be tears.  It doesn't mean that I'm not handling things or that I'm not just means I'm sad.   I think I'll allow myself that some days.  I can tell you another thing for sure though...there will also be lots of laughing.  We are a happy family, and we love our life we've been blessed with.  We've only been given one life.  One.  We plan to appreciate every day and live ours to the fullest.