Sunday, December 19, 2010

Christmas Sunday

I'll be the first to admit that one of the hardest things for me about this whole learning/growing experience is that we've had to miss church on Christmas Sunday.  HOWEVER we have chosen to be positive and make special memories on this day. :)  Also, I'm being kind of detailed because this is really what we do every Sunday that we have to stay home and I want it recorded for my girls to remember.

We 'watched' church on and then watched Music and the Spoken Word.  It was so beautiful! And really brought a sweet spirit to our home. We even dressed in our Sunday clothes (okay the girls didn't really want to so I convinced them to put their dresses on over their pajamas) and did our hair.
After our 'sacrament meeting', we held primary.  Tessa was in charge of the music and we sang 'Once There Was a Snowman'.

Abby found a wonderful story in the January 2011 Friend called 'Can't We Be Friends' (not yet available online).  

Our Lesson was a cute activity I found in the Friend a few years ago about Nativity Figures and Facts. We read the facts and matched them with the pictures.  Then the girls wanted to put ornaments on the scripture tree
Each took turns taking pictures with the camera. :) 
(Tessa took the picture of Abby's hand and baby Jesus.  Abby took the other three pictures.)
  Tessa was only making silly faces - believe me, this was the best one of the two of us together (not necessarily the best one of me).

Lastly, we closed with this months song "Our Christmas Story Tree" found in the Friend Dec. 2010.

Now we are off to make lunch and our neighbor treats - although I am not sure when we will be delivering them with all of this beautiful snow that is currently falling.  The snow makes me just a little nervous about driving out to SLC on Dec. 22 for Abby's follow up appointment - 
but I am so excited for a White Christmas!!!

Monday, December 13, 2010

a note from Abigail...

i love you  mia and all my fun friends to play with.

What a whirlwind!

Primary Children's has so many fun trees at this time of year!
This is first thing in the morning before the plethora of appts began.

I just wanted many of you to know that surgery went well, recovery even better and now
  we are home!  
Abby was discharged on Saturday.  We spent the night out there, and then traveled home on Sunday.
Bubbles, bubbles, and more bubbles - there was lots of bubble blowing this week!

She is continuing to recover really quickly and is doing well emotionally.  There are  so many updates and posts that I  have started with pictures, etc.... but just didn't have time to actually finish and post.  So hopefully you'll get lots more information in the next few days.
Waking up in the CICU (Cardiac Intensive Care Unit) 
Cute blanket they chose for her, huh?

At Primary Children's, Abby was healing well, but the doctors noticed that being at the hospital was a bit stressful for her.  The anxiety was affecting her heart rate which is not what we wanted, so they decided to do everything they could to send her home as soon as possible. Once the decision was made to send her home, there was quite literally a whirlwind of activity from that point on.  I didn't even have time to get my laptop out, let alone send out an email.  I do wish we could have kept everyone better updated - so sorry!
Too cute not to share! And so excited to go on a wagon ride.

Here's what we know: (and what you will learn more about in the next few days)

- Abby is allowed to see people and welcomes visitors! You just have to be clean and not sick or have been around 'sick' people (immediate family) for at least 24 hrs. Please call first. OR we love to skype.
-Abby is on oxygen - a small amount - indefinitely - and that a 55 ft. tube that connects to a 7 ft. cannula is MORE than enough to circle the couch six times. ;)
-We have a follow up appointment on Dec. 22, then we will schedule the next phase (cardiocath) for January.
-Abby and Tessa still LOVE all things pink. :) The girls spent the day today dressing up, giving each other manicures, pedicures, and putting on play make up.  They split the work on my toes and might I just say that they turned out lovely!
-We still anticipate phase 3 (open heart surgery - Fontane) by spring.
-We love being all together as a family!!!
-We will be h.o.m.e. in order to keep germ/illness free through January - and then we will see from there.
A wagon ride over to the play center - 
she was still a little nervous that it might hurt - 
but ended up loving getting out of the room!
Here's what we don't know:

- when Abby will go back to school (prob. Jan)
- exactly when the next phases will happen
- WHEN the girls are actually going to decide WHAT to ask for from Santa! (Hope they like what was already purchased 6 mo. ago!)
- how long Abby will be on oxygen
- what the HECK we are going to name James new puppy!
- if 40 min. of sleep per night really is enough

Our hearts are overflowing with gratitude from the notes, gifts, and services that have been given on our behalf.  We love you and appreciate you very much!!! 
Thank you!
colored by abby

Friday, December 3, 2010

A Change of Date

Well, in less than a week, we will be out in SLC witnessing the miracles of modern medicine, while Abby gets her pacemaker. Her surgery has been moved up one day to Wed, Dec. 8. We just feel so blessed to live at this time of the world that makes it possible for our precious princess to have her life extended and hopefully be able to run, play, ride bikes, and dance to her hearts content.

Here are a few pictures to enjoy :)

Being dramatic... and begging for tickles ;)

How she was really feeling!

Goofing off for the camera.  This is almost the only reaction I get lately - so funny.

On Abby's birthday, we had a 'camp out' in the living room.  The girls loved it! 

So proud to be on the roof - yes, in pj's. (hee-hee)

She just has my heart!

Halloween:  Dorothy and a Musketeer (Barbie has a movie about the Three Musketeers)

I just love this girl!!!

Wednesday, November 3, 2010

An update - needing to follow the path of least resistance...

Dear family and friends,

Here's an update on Abby.  (2 Nov 2010)

Last Wednesday (10/27) the board of cardiologists and cardio surgeons met for their weekly review of cases. They discussed Abby and what was learned from her recent cardio cath.  The outcome of ideas and opinions on what to do numbered nearly as many as doctors present.  The one thing they all could agree on was to install a pace maker first.  The pacer will get her heart into the correct rhythm and then we can see what would happen from there.  

The biggest concern is that her lung pressure is way too high forcing blood to go elsewhere and not get the oxygen it needs.  This is causing a reverse flow through her IVC which has formed a VERY large (about the size of a quarter) collateral vein to her liver, thus bypassing her lungs.  

So.....first thing is to get a correct heart rhythm and see if any of this fixes itself.  We HAVE TO HAVE lower pressure in the lungs in order to send more blood there (through surgery).  Getting more blood to the lungs isn't the problem (several procedures for this), its getting the pressure down so the lungs ARE the path of least resistance.  Otherwise she will just form collaterals to give the blood an easier place to go.

We will hear from OR scheduling in the next day or two to make the appointment for placement of the pacemaker.  We assume surgery will be in the next 2-5 weeks.

They will have to partially split her sternum again to install the pacer so recovery will take some time and there will be a hospital stay. The pacer itself will be placed in a pocket that will be placed in the upper left side of her abdomen. 

Three weeks to a month after the pacer is installed, she will go back for another cardio cath to see how the pressure/flow looks and possibly place some balloons or coils to force blood to the lungs if the situation looks good (meaning pressures have decreased as we hope).

After the cardio cath, it's unchartered territory.  It all depends on how things go to this point as to whether there will be routine heart surgery options (Fontan), or if our wonderful medical team has to get really creative.

For now, our prayer is that correct rhythm of the heart (due to the pacer) helps reduce lung pressure so more blood can be sent to the lungs and therefore increase Abby's oxygen levels.

This is good!  Although a bit overwhelming as reality sets in, these procedures and surgeries will really help Abby.  James and I feel good about the options currently outlined by the doctors.

We talked with Abby tonight and she was so brave. She asked some great questions and was happy to know that she will soon have more energy.  The look on her face, the tone of her voice, the questions she asked, were not those of a five (almost 6!) year old.  She is being blessed with an understanding far beyond her age.  She is an absolute blessing and we are honored to be part of her life.

Thank you for your love and support,
We'll let you know when the surgery is scheduled.

James and Summer

Sunday, October 10, 2010

Abby's Cardiology Appt. Oct. 8, 2010

Post note:  There is a song that has been going through my head all morning.  It is written by Cherie Call (one of my favorite artists!) and is called 'Already a Butterfly'.  It reminds me so much of Abby.  And then listening to 'Walk You Through the Night' so amazingly reflects my feelings as a mother to my daughters. (okay so basically the whole album is so very inspiring!) (you can listen to excerpts here:  I keep listening over and over again and am simply relishing in this mornings moments of dressing up, getting ready for the ball, hugging away hurt feelings, and dancing around while we clean.  Also listening as I type this has helped to calm my soul - as music always does.

In response to my own post yesterday, I maybe should've waited to post until full clarity came to mind, but thought it more important to let family and friends even know there was an appointment due to James and I moving it up from her normal annual appointment which would've come in November. (please don't be offended if you 'didn't know', no one did, even us - and it wasn't an emergency that warranted a 'phone tree' etc - simply an appt. moved to a sooner date) And because I am still having trouble 'finding' the peace and clarity that usually surrounds me with these kinds of situations... better to at least let you know, right?  James does have peace, and I am probably worrying too much and lacking a bit in faith - I'll get there... really soon. I can feel it.

Our nervousness was that we wouldn't find anything.  For two years, we have been concerned... but didn't want to push the doctors into doing anything 'drastic' prematurely.  Many times, where the heart is concerned, patience and waiting for the 'right time' is key. What we have been seeing at appointments is 'normal' and even 'great', but a at home and in 'life' she has been such a roller coaster with her oxygen levels and her heart rate.  Because of the type of surgery she had - she should maintain oxygen levels in the 90's - which would be great for her!  But the last two years have ... been rough and amazing at the same time.  Lets just say lows in the 60's and highs in the 80's = pure craziness.  

We do exercise our faith in miracles!  Abby really is a living miracle. Because of her 'miracles' she has only had to experience one heart surgery thus far in her life instead of four or five (which is the usual route for her particular diagnosis).  It is amazing and inspiring to watch her grow.  We have faith in an all knowing God AND in the knowledge that He has gifted to modern science.  With both, Abby will continue to live a long and full life.  What a blessing!

That being said, Abby's 'heart' looks really good.  However, there are still some major concerns that probably need to be corrected, some we've always known are a possibility (a pacemaker, small surgeries, or even open heart again) and some were just discovered yesterday. The whole situation is 'strange' in that her overall appointment went really well and she looks great.  The only thing found that was out of the ordinary is that the hepatic veins (blood flow from the liver to the heart) are exceptionally large.  It will now be necessary to perform a cardiac catheterization (cardio cath) to determine the exact causes of her problems.  While this is not a "risk free" procedure, it should be quite simple and not even require an overnight stay.  

 This will take place in about a month (because we want to wait until after her birthday, we've already waited two years, no emergency here).  Then, we will go from there.  We have excellent doctors and have every confidence in their abilities.

We ask that you pray for James and I to have increased faith and the ability to discern what will be best for Abby, for her doctors to be inspired with the best solutions and to 'find' all that needs to be found, and most especially for Abby - that she may enjoy her life and be happy, sad, healthy, still full of drama, dressing up, playing games, continue to love kindergarten and primary, fight with her sister, and share hugs, love, and kisses with her best friend sister, be strong enough to continue to ride her bike and explore her world - and love and appreciate all of the moments for the treasure that they are.

And now we are off to a 'princess' birthday party! My little girls dream world! so much fun!