Tuesday, April 24, 2012


So sometimes people wonder how I manage to be sane.  After you read this post, you might see into the inter-workings of my mind.

So, 10 years ago.  I was planning my wedding and there was 4/21 available or 4/28 available.  But since we were getting married in 2002, it made more "sense" to my mind that 4/28/02 was a better date.

Then fast forward to 2006 when we were getting scheduled for a c-section for Alexis.  They asked when we'd like to schedule it during week 37 of my pregnancy.  2/10/06 wasn't available because it was Matt's birthday.  But, 2/8/06 was available!  Yippee!!

Then as luck(?) would have it, a year and half later we were in the same situation with Jessica.  I was being scheduled for a c-section and the doctor didn't want to drive in over July 4th holiday for an emergency c-section so he said, pick a date before 7/4/07.  (Matt would have preferred 7/7/07 for the obvious reasons).  So, I picked 7/2/07 because it looked like 7/2/2007.   Take out of all of the 0s and it looks pretty.

Then, when they started talking about Jessica's discharge on Friday from the hospital after her heart surgery.  Well, Friday was 4/20/12.  A nice even number.  Seems like nothing significant.  But you'd have to know this small detail.  
Alexis was discharged from the NICU on 4/20/06.  6 years to the date that Alexis started her new life with us! And that Jessica has her heart repair and new heart exactly 6 years later.  

It makes this mommy heart happy.  Which may or may not show some of my sanity or otherwise.

Friday, April 20, 2012

Day 2 Post-Op

We are at home. 

I won't write much more, than she was a picture perfect case.  She was walking 6 hours after her surgery.  Made 2 laps around the CICU before being sent to the Cardiac ward, then a nap, then lots of laps of the whole hospital.  

This morning, we started with blood draw, then EKG, then field trip to XRay, then echo in our room.  Jessica was a super-star.  The only small problem that she was disagreeable for was tape removal around her neck IV.  She didn't like that, but I think she was actually hungry and tired.  

We ate lunch, decorated some of the Fenway Park model in the play room and then napped on the way home (Daddy was driving).  We are already at home taking interest in all of our things around the house.  In traditional Jessica fashion.  

So happy for us, thrilled with her progress and relieved.  Hopefully it'll continue to be quiet from her on.

Wednesday, April 18, 2012

JESSICA update!

Aren't you all glad that I called this the Schnaderbeck blog and not the Alexis blog?  :)
Well, I named it the Schnaderbeck blog because originally we had a Care Page for Alexis - but I wanted the blog to include the whole family.  Little did I know 4 1/2 years ago that we'd be sharing Jessica's medical journey on here.

5:30am - Jessica woke up.  No extra need to wake up early.  She could drink until 7:30am.  We played with new toys until 9:30 and then left for the hospital.
Good luck on our part that Children's Hospital Boston was doing painting and coloring next to the Pre-Op waiting room - Jessica got her own Costco badge.  We'll sign her up to visit there on the weekends as a greeter.  See how happy she is. This was after running around on the stage "dancing".  We're doing some sticker fun while we did all of the waiting in the pre-op holding area.  Then the bottom left photo is Jessica being serious - awaiting the ride to the OR.  Since she has a "paradoxical" reaction to versed (what we learned last cath), we didn't give versed - only Ketamine.  Well, it's supposed to start to sedate you, it just made Jessica talk even more.  All of the doctors were amazed when we said that she had already had some, because clearly it wasn't taking effect.  :-)

So, she wheeled into the OR at 12:45.
1:50 they called to say that they were making the incision in her chest (they had to do a bunch of prep - airway, IVs, etc)
2:30 on Heart-Lung machine
4:00 back off Heart-Lung machine.  I know that the Heart families out there know the anxiety that you feel between 2:30-4pm.  And then the relief that you feel and the tears that you shed when they come back and say "heart beating, looks great".
4:15 The surgeon came and told us about the surgery.  He did manage to do a partial sternotomy- which means he only  made a small cut into her sternum - this should me a faster recovery and less pain maintenance.  We're thrilled for this.  It also means that she'll have a smaller incision and at some point when she's 25 - she can wear a lower v-neck shirt (not while she lives in our house - as people know about me and my turtle-neck wearing program).  We were thrilled, especially when the doctor told us that there were so many holes in the ASD that essentially there wasn't much separation between her atria.  Thankfully for us, she has compensated well - but we are thrilled we made the decision to fix it now before other complications set in (her heart was working too hard).
5:45pm When she was settled in the room, we got to come in.  Here are photos.

She's medicated but not incredibly sedated.  The nurse woke her up when she set the brake on the bed.  Jessica was her normal self waking up a little shocked and concerned about tubes everywhere.  
She has woken up for some more conversation and concern about where Daddy is (sorry Matt, she just did this).  Matt is at home with Alexis, but he knows his Baby Jessica is in good hands (with the Doctors and Nurses - and grumpy momma bear if needed).  

We will be in the ICU until most of the tubes are removed, then out in the Heart ward of the hospital.  Jessica is a trooper, looks great - we couldn't be happier!  And relieved!

Thank you for all of the good thoughts, the prayers, the good wishes - we have appreciated it!
Catherine, Matt, Alexis and most especially super-trooper JESSICA

Sunday, April 15, 2012

3 Days Until Jessica's surgery

Jessica is having her open heart surgery on Wednesday.
She has an ASD.  You can see pictures here of what it looks like

Here's a website describing what we can expect in the hospital.

Obviously we are professionals about Hospital life and are happy that we'll be in the good hands of Children's Hospital Boston.  We have lots of experience with them with Alexis.  Last time we were in the hospital for the catheterization for Jessica, they were so happy for her to leave after the day (she was very curious about the other patients - she probably broke all of the HIPAA regulations).

I am more concerned that restraining or calming Jessica will be very different from our experience with Alexis.  The last super-serious surgery like this for Alexis was when she was 9 months old.  So, we are curious and anxious about how we'll be reacting with Jessica experiencing pain and how we'll be able to help her recover the easiest.  

We know she is in good hands, but that isn't going to make giving her away to the surgical staff much easier.

We'll try to keep everyone posted on her progress on Facebook and our Blog.


Monday, April 9, 2012

Link to Philips Website

I'll be going to a conference for work.... but more importantly to support a project I've been working on for Alexis and her 'friends' for the past 2 years.  I've been doing this in addition to my "day-job" in finance.  So it's thrilling that it's being publicized and recognized so widely.  It's a great honor to be able to share what I have learned from Alexis to a larger audience.  I hope that each delegate for TEDMED 2012 will recognize that kids like Alexis are really special and achieving beyond their capabilities with hope and love.

Sunday, April 8, 2012

Happy Easter!

Happy Easter from the Schnaderbecks!  The start of a busy season.... but look how great everyone is!  So happy!

Tuesday, April 3, 2012

2 week count-down

Tomorrow will mark the 2 week count-down to Jessica's Open Heart Surgery.  It is scheduled for April 18 at Children's Hospital Boston.  We know it will go smoothly, but that hasn't stopped us from being concerned about Jessica's well-being and quick healing.  
We are ready, at least we think we are.  We haven't seen Jessica like this ever - her heart cath was an out-patient day procedure.  We haven't seen Alexis with intubated in the ICU since April 10, 2006 - 6 years ago when she nearly died with her g-tube and fundoplication surgery.  She had many tubes hanging off of her in the ICU. At no point did the doctors have to intentionally stop and then restart her heart.  
Thankfully we are happy to see these statistics on ASD repair

If you celebrate Easter, please put in an extra prayer for us.  We'll appreciate it on Wednesday April 18.  Thank you, Catherine, Matt, Alexis & Jessica