Be A Lucy

In a world full of Kardashians, be a Lucy!

Oh, and here are some pictures!

Just exersaucing in the kitchen.

She found her feet and loves to put them in her mouth which grosses Dan out.

Lydia and I are bad selfie takers but we'll keep trying.

#adorbs

Ridiculous headband courtesy of mom.  Can't tame the redhead.

Eating carrots.  Trying pears next!

Fancy words for a Fancy girl - Subaortic Stenosis

Dr. Shah took Lydia's case to the team of cardiologists, critical care intensivists and cardiothoracic surgeons.  The team agrees that Lydia needs a 2nd open heart surgery which will happen in March.  I know it's the right thing and the only option because this is the same team of doctors that spent every day with my little girl in the PICU for 2.5 months.  I trust them.  They are the best at what they do.

It's becoming more real and I haven't snapped or broken yet.  I get sad.  I cry.  I enjoy every second with her.  She doesn't feel bad and she isn't hurting.  To look at her you would never know my smiling happy baby with the world's best cheeks needs another open heart surgery.  And again, she isn't going to remember any of this. 

It may sound weird but I'm already mentally preparing for weeks in the hospital. Where will Dan and I choose to wait during her operation.  The PICU waiting room?  The Ronald McDonald waiting room?  Remember our last surgery day?  Lauren and Erin brought us fun bevs and Phil brought us lunch.  What will I eat in the cafeteria?  The sweet potato fries are decent.  Do they still have the Roasterie coffee?  They had just switched in August.  How many times will I circle through the gift shop because I need to escape for a moment?  I wonder if the pink castle elevators still breakdown intermittently.  Do my favorite security guards still work there?  I'll miss Dr. Vaughan, he retired.  I'm excited to see Nurse Stephanie, Jennifer, OJ, and Bailey and the many more whose names have left my brain.  The hospital has good ice, it's like Sonic ice.  I hate the parking garage.  Hate is a strong word and in this instance I mean it.

So what is going on with Lydia's heart?  Her interrupted aortic arch, VSD and ASD were repaired.  Yes, and all the repairs are functioning great!  This new thing is something that we knew existed but did not know if it was going to present itself as severe or not.  Subaortic Stenosis is essentially a narrowing right below her aortic valve in her left ventricle.  This is causing the flow of blood to be at a higher pressure and creating more work for the heart muscle.  Thus, it's bulking up.  Not a muscle you want to bulk up.  Clearing out some of the membrane or tissue in the left ventricle will lessen the pressure and allow the muscle to atrophy, which is good in the case of the heart.  That's the simple explanation.  

Below is a little more and then a link to a lot more, still sparing you the articles that her surgeon actually wrote on the matter.  Man, Dr. Peter Pastuszko is one smart man and I thank the good Lord that he is at CMH.  Dan and I have a surgical consult with him next Thursday and will know all the details then.

Borrowed from the C.S. Mott Children's Hospital in Michigan:

Surgery for subvalvar aortic stenosis:Subvalvar stenosis can be caused by a discrete membrane or by thickened muscle. Repair for discrete membranous stenosis is done to prevent damage to the aortic valve and to preserve left ventricular function. An incision is made down the center of the breastbone and the heart is stopped for a brief period of time while a heart-lung bypass machine supports the body. An incision is made in the aorta and the surgeon looks through the valve to visualize the membrane. The membrane is cut away along with a tiny pie shaped wedge of muscle. This is called membrane resection with myectomy and decreases the chances that the membrane will grow back. 

And a link to the full text with illustrations (# 2) of what is happening in Lydia's heart:

http://www.mottchildren.org/conditions-treatments/ped-heart/conditions/aortic-stenosis

Mom's hysterical laughter

It was a slushy drive to work this morning, took nearly an hour because the highway was backed up and I picked the busiest side street in Olathe to pick up a different highway.  Oh well.

I was creeping along and was thinking about the post I wrote last night, this paragraph in particular:

"Dr. Shah will spend this week consulting with the other cardiologists that know and follow Lydia.  He will also consult her heart surgeon.  There are three possible things that could happen and I just have a feeling it's going to be option 3 by the way he presented this."

And then I said out loud to no one, "My 6 and a half month old daughter has a heart surgeon. WTF?"  Except I'm pretty sure I said the whole expletive and then I laughed.  I laughed.  I don't want to cry yet.  I'll do enough of that when this all becomes a reality.  

Open Heart Surgery #2...maybe

Lydia had an appointment with the cardiologist on Monday and we received some disturbing news.

Back track to our visit in September.  Lydia's EKG was great. Lydia's echo was pretty good.  We knew there was some left ventricular obstruction stenosis.  At the time we were told it was probably due to a small aortic valve which could be ballooned open in the cath lab.  This was not entirely unexpected and not too hard to swallow.

Dr. Shah described Lydia's blood flow like a garden hose you put your thumb on to get a more pressurized spray.  This means the heart muscle is working harder and getting thicker, like any muscle that is worked out.  At the time, this overcompensation of the heart muscle was expected and manageable.

Fast forward to Monday's visit.  Lydia's EKG was great.  Lydia's echo was okay.  It is much clearer now that the left ventricular obstruction stenosis is just under the valve in the left ventricle itself.  This cannot be fixed in a cath lab.  This requires another surgery to open the area.  Opening this pathway will allow the pressure to subside and the muscle to atrophy to normal size.

Dr. Shaw described it this time in numbers.  You and I have blood flowing through at a rate of 100 ml per second.  Lydia has blood flowing through at 400 ml per second.  If this isn't lessened, the heart muscle will continue to thicken and eventually cause blood to back up in her lungs and cause respiratory problems.  

Dr. Shah will spend this week consulting with the other cardiologists that know and follow Lydia.  He will also consult her heart surgeon.  There are three possible things that could happen and I just have a feeling it's going to be option 3 by the way he presented this.

Option 1: Wait, keep watching, the LV grows and takes care of the problem itself.
Option 2: Check for valve stenosis and balloon it, possibly lessening enough of the pressure to not warrant surgery.
Option 3: Open heart surgery to open the area, lessening the pressure and relaxing the muscle.

It's not an urgent matter, but I don't think it's a wait until she's 3 or 5 or 10 matter either.  It's coming.  I'm strangely calm about it all because it isn't real yet.  The word isn't final.  The surgery isn't scheduled.  Lydia isn't in the hospital.  Yet, I'm trying the live with option 3.  In the back of my mind I'm trying to prepare for another open heart surgery.  Another day long wait.  Another set of IVs and meds and tubes and vents.  There are some really good people in the PICU, I just wished we'd never have to see them again.

Happy New Year!