Our precious Abigail (age 7) will be having open heart surgery on June 19, 2012.  Yes, in just a few short weeks.  Because of the wonderful team that we work with at Primary Children's Medical Center - we have great hope. All will go well and the little miracle will continue to be just that - a living miracle.
 More info to come later this week.

doing great

Hi! This is Abigail - i want to let you know that i am doing great!!

Recovery from the cardio-cath was fabulous and it accomplished what we hoped for. :)  Now we just live life for a while - yay!  We will have a follow up appointment next month.

Abby's cardiologist called the other day.  He had presented her case to the board and all agreed that plans for June were a good idea.

loves to all!

Cardiac Catheter 12 Jan 2012

Well HELLO there! We were thinking it might be time for an update. :)

Many of you have been contacting me to ask about Abigail.  And I am finally getting around to answering all of you at the same time. Yes, that is how I am.  

 

Riding a Ferris Wheel for the first
time at the State Fair in Montana.

The little daredevils!

Warning: picture overload.  The pictures are very random and from the last six months.  Enjoy. :)

Doesn't everyone dress up and change
clothes about 40 times a day?
Perfection, pure perfection!

From early November through December 19 (the day of Abby's appointment with her cardiologist), we noticed a steady decline in energy levels, oxygen levels, and an increase in emotional outbursts from Abby.  She was clearly not going to be able to wait much longer before doing something. She wasn't terribly blue, or sleeping all day or anything, but after seeing how well she has done for the last 6 months - the change was very noticeable to us.

San Diego Temple

While being monitored at the appointment, Abby had a tachycardia episode.  The most alarming part was that she didn't feel or notice anything for the almost full minute that her heart was racing.  The tech kept asking how her heart felt and if it was beating fast.  Abby would simply answer that she was fine with a big ol' grin and go back to talking and playing with Tessa.  Adjustments were made to her pacemaker so that we can recognize how often this is occurring.  Amazingly, science has brought us to a day and age where adjustments are made and her pacemaker records the information.  We can even send the recordings over the phone line to the hospital using devices at home.  I LOVE that we are not having to drive out there every month just to do a pacemaker check!

At the beach in San Diego

Cheerleaders for a day at the
High School Football Game

  No other episodes were noticed from Dec. 19, 2011- Jan. 12, 2012 by her pacemaker.  More adjustments were made on Jan. 12 as well to be more sensitive to such episodes and also to help her heart beat as fast as it should when the pacemaker senses greater movement - such as running or playing. Cool stuff, I tell ya.  Not only does her pacemaker help her heart from beating too slowly, it speeds up the heart beat in accordance with her level of movement, AND it records everything, AND we can send all of that memory remotely!

Sisterly love.

 As Abby's mom, I have rarely felt truly 'sorry for her'.  I know that may sound harsh.  But, I know that she accepted this mission in life.  I also know that Heavenly Father helps us through all things.  I have every confidence that she is given extra guardian angels to buoy her up and bless her in so many ways.  We have seen evidence of this in Abby's unique ability to bounce back, take really hard things in stride, and still keep up with her social - oops! did I say social? I meant um normal life. (Anyone who knows Abby more than her pretend shyness, knows that she is quite the social butterfly. ;]  )  This time, my heart just broke for her.  And I would cry with her.  

However, as one of my dear friends put very well,

"Abby has more courage in her little pinky than I have in my whole body."  

And that courage and Divine help did end up shining through.

My goodness, I love these girls!

We had some great conversations with her to help her process the memories which helped to ease her trepidation.  She also asked for a priesthood blessing.  I am so very thankful to James for being a worthy priesthood holder and blessing our home in so many ways!  I am also humbled that Abby has a testimony of priesthood power.

Halloween: a rainbow fairy princess

Temple Square

We also spoke with everyone we could at the hospital before her procedure concerning her uncanny ability to remember things that she was given medicine to forget.  A different medication was tried and - yay! - Abby woke up all smiles and also relieved that she didn't remember very much.  She still can not remember - and she is 'very thank Thee' that she doesn't remember everything.  (That is what she says instead of thankful in her prayers. We haven't corrected her. Too cute.)

Santa Claus sent The Grinch

Her cardio-cath went very well.  Three coils were placed in separate collaterals that had formed (or already existed before but were maybe smaller then).  Also, the pressures in her heart were looking really good.  That is wonderful because that means that she is pretty much ready for heart surgery.  (To avoid built up anxiety over the situation, we have opted to wait to tell Abby about her need for heart surgery until school ends.  We simply want her to enjoy her school year.  So please, be sensitive to her situation when talking to us.)  Abby will be having heart surgery this summer.

Someone could not sleep on
Christmas Eve. ;)

In normal Abby fashion, we were able to leave the hospital the same day as the procedure.  She always heals quickly and gets to go home sooner than planned.  She was so excited to be able to spend the night at her cousins house and play.  She thinks that it is very not fair that Tessa gets to go and play a whole day while she just has to go to the hospital.  My sister and her husband were very accommodating.   Although, I don't think any of us expected the very long and restless night that Abby ended up experiencing. Wow.

Look closely! All she
wanted for Christmas were 2
front teeth!  Oh.... and an
American Girl Doll. :)

 Now, it is one week later.  She is doing really well! Her entry locations have healed very nicely and the small bruises are almost gone.  She returned to school on Tuesday, and also participated in her dance class and tumbling this week. 

We smile when we see her, because we can tell that her oxygen levels are higher due to the beautiful pink coloring in her face. 

leaving the hospital after
the cardio cath on Jan. 12.

 Love it! 

 Life is good.

P.S. A HUGE thank you to {dear family} for watching Tessa, giving us a place to stay, and putting up with that sleepless night.  love you!

Abby's appointment and an update on surgery.

Abby had an appointment at Primary Children's yesterday, December 19, 2011.

We have been concerned about a couple of things here at home.  Oxygen levels have been decreasing the last 6-8 weeks.  Abby has been really tired and frequently staying home from school due to being tired rather than sickness. All of this was more noticeable to us after seeing her so 'pink' and with so much energy and joy over the summer and beginning of the school year.  It has been so fun these last few months to watch her be enthused about life!  (and is heart wrenching to see her struggling again)

It is apparent that we will need to have her heart surgery sooner than later.  We talked about several options, but feel best about the following:  We will send her back to the cath lab and see if there is anything that we can do that will help her.  If there is, we will do it.  Hopefully, this will allow her to be 'healthier' and happier for the next  months or so and most importantly, keep her able to be going to school through this school year.

Then, (and this could change depending on what is determined from the cath lab)  we will schedule her  heart surgery for this summer.  All are in agreement that while it is not 'an emergency', it is time. (Frankly, I would rather not get to the 'emergency' stage thank you very much!) This should be the final surgery that Abby will need.  So, while it is indeed a 'big' deal - we are mostly feeling content and happy for our sweet Abigail to almost be done. :)

We're on our way!

Okay, so there are a few posts missing here - like Abby's whole life! Most especially the one about how Abby had another appt. even scheduled.  :/  Also, how everything went the last few times, why we are here again, etc.
However - the good news for now is that Abby has done so well today that she is being discharged this evening!!! Yay! 
We will spend the night in SLC, and head home Fri. morning.  Hopefully there will be lots more here - SOON!
Here are the Facebook posts from today:
Wed. night:

Abby is having a cardiac cath on Thursday. Her appt. is for 8 am. An overnight stay is expected. We will update here as we are able. She'll do great!

12:00 pm today :

Abby is in the cath lab now and things are going quite well. Her pulmonary pressure has dropped to NORMAL levels since our last visit. (This is huge!) Several more collaterals have formed from her IVC to her liver so they are trying to block them off now.

She will be out in another hour or two and we plan on a completely uneventful night in the Cardiac ICU before going home.

Thanks for all the prayers and support!

1 pm today:

Abby is awake and doing great! Her procedure went really well. Hopefully I will update to her blog later on... but we just MIGHT be going home today and if so, then we'll be pretty busy. loves to all! Thank you for your thoughts, faith, and prayers!

6 pm today:

Being true to her normal amazing ways - Abby is getting discharged this evening! We'll be in SLC tonight and leave for home in the morning. :) We are so thrilled!

 

Home! ... Again!

We are home! again!  Arrived home around 9pm.  Slept well until Abby woke us up at about 4:30 am with a fever and fast heart rate.  Headed to emergency room - just to be safe.  And she looks great.  She is on extra antibiotics to kick whatever her system may be fighting.  And now - to rest, sleep, and enjoy being home in our - 22 degree weather. ;)

She's awake!

Abby is awake and doing well. :) The procedure went very well. She will spend the night in the Cardiac icu and we will probably go home tomorrow! whew!