April 28, 2010

Weekend in Pictures

This past weekend we were able to meet with other parents of children with mended hearts at a local park throught the Mended Little Hearts Organization.  It was great meeting other heart moms and watching our kids who have beat the odds just run and play.  I look forward to working with Mended Little Hearts on future projects and helping and meeting other parents along the way.  

 Elisa, Me and Daniele

A partial group picture

On the hill.

After the picnic we went to enjoy a the Diamond Backs play a game.  My son got to go out to walk the field with the little league baseball team my husband had him join.   They are the Angels! Go Angels and D-Backs!   

The Boyz!

Say cheese!

Perfect game weather!

Loving big sis!

The fabulous five! 

Alexa was surprisingly good through out the whole game which was pretty long. It's nice to be able to go out and just take her places now. She is discovering a whole new world she never new existed. Everywhere new we go she says "Wow!"

Life, for now, has resumed to normal.  After finding out about Alexa's CHD I always wondered if I would ever feel this way again.  If you are knew to the CHD journey please know it is possible.  Not only to survive this journey but to be happy again.   

April 23, 2010

grate·ful·ness ~ echo and cardiology update

As I began to type this blog update I realized that today was Alexa's two month anniversary since her Rastelli surgery!  She has come a long way!  Alexa had an echo and cardiology appointment this past Monday, April 19th.  I was a bit nervous, since this echo would give us a lot of insight to how her heart is performing with the repair now that it has had some time to heal.  I was nervous too about how well she would do staying still for the echo since she does not like any docs doing anything to her and being still is important for good images.  When they started she she did begin to cry and fuss but then she settled down and remained surprisingly still for most of the echo as we watched Elmo go on an adventure.

The week before I decided I need to try out the new pacemaker home monitoring equipment.  I did a test and sent a transmission.  This is what the pacemaker and the monitor look like.

I read all the directions and then played with it off pretending to put the antenna which is like a computer mouse on me, then on a teddy, then on Alexa.  Overall, it was pretty easy but I had a hard time getting it to pick up reception but finally it said it went through.  It collects all the info from her pacemaker and sends it directly to her cardiology office where they can check it and read the results.

Now back to the appoinment.  Dr. P was taking a while to come and see us and I was getting a bit anxious about the results.  When I saw him walk in with a smile I felt some relief.    These are all the good things I remember.

1)  Alexa grew two and half inches in 6 weeks!!!  Simply amazing! 

2)  Alexa's pulmonary conduit pressure are nice and low, same as before about 24.

3)  There is absolutely no leaking coming from the valved pulmonary conduit!  Dr. P said sometimes
      these can begin to leak even 3 days after they are placed in surgery.  A leaky valve could eventually
      pose a problem for the ventricle.  So no leaking is fantastic!!

4)  Although Alexa is still in complete heart block, I learned that the lower part of her heart has
     begun to compensate for the lack of electrical impulses it would naturally receive from her AV 
     node.   Before when they lowered almost wanting to turn off the settings on her pacemaker, there
     would be no underlying heart beat of her own at all.  She was 100% dependant on the pacemaker.
     Dr. P was pleasanlty surprised that when he lowered her pacemaker she is now able to generate her
     own her beat independent of the pacemaker or the AV node!!!  I didn't even know this was possible!
     I thought it was really impossible because of the heart block situaiton.  But he explained that every cell
     in the heart is able to generate a heart beat.  Before the cells didn't have to do that job because they had
     the signal from the AV node to tell them when to beat.  But since her AV Node has now been silenced
     pretty much forver, the other cells decided to take over, although they cannot or have not generated a
     normal pulse at this point because 47 beats per minute is very low and anybody would be feeling very
     weak, sick and tired, fainting, dizzy etc. but it is WAY better than 0.  If for some reason the lead 
     connected to her heart were to become detached it would give us enough time to get to a hospital
     where they could help her!  The doctor was very relieved about this and of course as her mother I
     was/am extatic!  I hope and pray that it only continues to get better and stronger.

5)  Dr. P also mentioned that the amount of energy that it takes the pacemaker to generate a heart beat
     in Alexa's heart has also diminished.  This is good because the least amount of energy it uses the longer
     the battery will last and not need to be replaced.

6)  Another good thing was that he also adjusted how the pacemaker reads the information.  He mentioned
     that Alexa's Sinus node (the body's natural pacemaker) that decides how fast or slow your heart needs to
     beat to keep up or slow down with you, is working great!  He will now allow the pacemaker to
     completely follow her lead and set her pace since it has been working great!

7)  One small downer at this point is that he noticed some small amount of scaring/stenosis of the conduit at
     the very top where it connects to the rest fo the pulmonary brach.  Think of the pumonary arteries as a
     letter T , the conduit is the vertical part and this was connected during surgery to the horizontal part of
     the letter T remaining parts of the pulmonary braches leading to the lungs. He said right were it connects
     at the top there is a bit of stenosis.  Very minimal, not a problem at this time or in the near future.  He
     said if it were to become a problem they could always go in via a cath to stretch or balloon that area
     buying extra time.

8)  He also took Alexa off her Lasix meds, so she is now only taking a baby aspirin daily!

So as you can see, so much good, no, GREAT news!!! I am so grateful for it all!!!

I did ask him what he thought about her getting earings and he said she would need antibiotics because risk of infection could travel to heart.  I told him it's okay then, not worth it.  We will deal with that when she asks for them.  Also needing antibiotics if she gets her nails done.  Thankfully I don't like acyrlic nails and will promote my daughters own natural beautiful nails so hopefully this won't be too much of a problem. 

We go back for a pacemaker check in 3 months! For the first time since going to that clinic, they told me that the scheudle is not open that far ahead to call next month to make an appoinment. Now, I did notice that this week Alexa has been pretty pooped out by 8 p.m. normally she still had energy to keep going until later. So I'm not sure if this is related to the changes in the pacemaker or she also had a small cold this past week and maybe her body is just more tired from that. I am keeping on eye on it though.

Dr. P said Alexa was doing very very well!  He said that her biggest hurdle was behind her.  She climbed the hardest mountain already which was getting past the Rastelli surgery.  He said there is no reason why she cannot grow up to have a happy normal life and he even mentioned her being able to have children if she so desires, when she get's older.  I told him I had always been afraid to ask him that.  But it brought tears to my eyes.  I already see how she gravitates to baby's and cares for her dolly's being such a little mommy!  So when he mentioned that, it was just too much for a heart mom to take.  When you begin this journey, you always begin with fear, fear of the unknown, fear of what this means for the dreams you have for your child and their own dreams.  This past appointment was a blanket of hope over me.  A reaffirming of my faith and my strength and our future together.  I know challenges still lie ahead but I really wish the scared pregnant mom I was when we first heard the words CHD could have been at this appointment with me, maybe it would have still felt like we were in the middle of a blizzard but this appointment would have been a beacon of hope.  A cup of warm tea, cozy blanket and fire on a cold winter's night.

"When you come to the edge of all the light you know
and are about to step into the darkness of the unknown,
faith is knowing that one of two things will happen.
There will be solid ground to stand on or you will be taught to fly."
 -Author Unknown

April 15, 2010

A Wonderful Life

On Saturday, the 10th of April, we celebrated my parents 35th Wedding Anniversary {althought their real anniversary date is April 27th}!  It was a surprise party held at our house!  I had been extremely busy with this project.  A collaborated effort between my siblings and our amazing spouses.  The event turned out so wonderful and my parents were completely surprised.  We invited long old time friends and family.  Many came from out of state.  It was great to see my parents reaction. They never had a wedding, nor went on a honeymoon and besides taking then out for a nice dinner they had never had a party for any of their previous anniversaries and so we knew it was time! About a month after Alexa's surgery I told my sibblings I was ready to start planning and working.  We did it all very fast and then we waited for the day and prayed for good weather.  At night it looked so nice because we had so many nice lights up in the trees and a string of lights above the dance floor.  On the menu was tacos de carne asada, al pastor and chicken, beans, rice, pasta salad, chips, and all kind of salsa's.  To drink there was aguas frescas de horchata, tamarindo, punch, beer and water.  Yum!   Here are a few pics to commenmorate the occasion.

My little family

My parents with good friends, the first to give them bible study

My siblings

The Mariachi's

Waiting in suspense for the guest's of honor {i.e. my parents} to arrive

April 2, 2010

19 months!

In today's email box I had a message from BabyCenter entitled, Your 19th-month-old : Week 1, that in part said:       

"When you're out and about, your toddler's favorite pastime may be running away from you as fast as she can, squealing in delight as you rush to catch up.  Build in extra time when running errands."

I could have used that piece of advice before I left home today.  I went to do errands.  Alexa was happily asleep for a little while.  Alexa woke up.  Alexa rearranged items in the store.  As they said, Alexa ran away from me squealing in delight as I tried to catch up.  Alexa was put back in her stroller. Alexa ate crackers.  Alexa spilled water all over herself.  Alexa got some new dry clothes.  Alexa wanted to run away again.  Alexa threw a tantrum.  Alexa was carried to the register.  Alexa wanted the cash register's marker.  Alexa was carried to her car seat.  Alexa was taken home.  Alexa's mommy read this message and thought about how Alexa turned 18 months old in the hosptial recovering from two {open} heart surgeries. Alexa's mommy makes a mental note that she needs to build in extra time for errands but has learned a more valuable lesson that babycenter forgot to mention ... to smile at these priceless moments.      

Alexa 19 months old today! 

And with her big brother who is smitten with her. 

Way to go Caleb on winning an Academic Excellence Award today at the Honor Roll Assembly! 

You Might Also Enjoy

Blogger WidgetsRecent Posts Widget for Blogger