And There Is A Plan

Sorry for the delay in updating, but my macbook's charger went out on me over two weeks ago.  Tonight B went to Apple and replaced it for me, yea!

So to update on Zoe's cardiology appointment a week ago...

Zoe's heart function looked really good on her echocardiogram and EKG.  The cardiologist was really happy with her growth (a whopping 12 pounds now!) and decided to go ahead and schedule her heart cath in order to determine if Zoe is a good candidate for the Glenn.  So it is set for December 22nd - nice Christmas present eh?  Not so much, but at the same time we just want to move forward and get passed this hurdle.  We just hope and pray that everything will go smoothly and that the pressures, etc. are good.  I cannot even begin to think of the alternative routes if she is not a candidate for the Glenn - it just isn't an option - it isn't.  

The Glenn will be scheduled during our first cardio appt the first week of January.  So damn scary.  I still just am not ready to talk about this.  I cannot bear the thought of handing my baby girl over again - to have her chest sliced open, her sternum cracked open,  and her heart tinkered with again.  To go through the ups and downs of CTICU and working towards "the floor."  This is a whole new ballgame now that she is fully integrated in our lives. WE JUST GOT HOME DARN IT!  This sends me into a tailspin which is just why I am not ready to really delve into this right now.  Every moment I look at her and just wish it wasn't so.

Moving on to some rambling...

November 25th marked Zoe being home for three months!!!  Even though it is challenging to remain sane while taking care of such a fragile baby I wouldn't trade it for the world.  She is just a delight to be with all the time.  Her sparkling blue eyes just melt my heart.  Her laughter just makes me so happy.

Speaking of laughter, while waiting for the cardiologist last Monday we were playing airplane.  She loves to "fly" and after lifting her up high I'd bring her back down to me with smothering kisses on her neck and ears.  She was getting such a kick out of it that she was laughing hysterically and loudly - for the first time. Just the cutest laughter I have ever heard.

Zoe's first tree

Family Traditions

We started our first family tradition the day after Thanksgiving and that is with Christmas tree shopping!  We went to a local tree farm and bought the perfect tree.  It is just so pretty with its soft green needles that have a white glow to them.  I cannot remember the type of tree it is just now, but I have never heard of it before that day of tree picking.  

Life's A Beach

First moments in the sand

A walk on the beach, the simple things that matter the most in life.  Sharing these special moments with Zoe are so precious.  Yesterday was so beautiful in So Cal, a splendid 80 degrees in late November.  The house was pretty hot and B was wrapping up his so called vacation (which was spent laboring on the house) so we decided to head out for a nice walk on the beach. We let Zoe wiggle her toes in the sand for the first time.  She didn't seem to mind at all, in fact I am pretty sure we have a water baby on our hands.  

Sandy tootsies

And just a few more pictures!

Big girl sitting up

Chilling with mama, an early morning ritual

eating and loving some rice cereal

Zoe's room making progress

Going to CHLA today

Headed up to CHLA for Zoe's cardiology and HLHS interstage appointment. Please send good thoughts for good heart function and an uneventful appointment. It is unnerving as we will also be scheduling her heart catheterization for December and potential second open heart surgery for January or February. Ready to get past this stage but never ready for another surgery.

Well Hello!

4 months old 11.4.11

First I am sorry for going MIA, but I am sure that you can appreciate how life changing it has been having Zoe home with us.  Quite frankly it isn't that I haven't had the time to write some posts, it is more that I just haven't had the energy or desire to make the effort.  I have spent the last few months adjusting to mommy hood of a heart baby and it is quite a challenge at times, but wonderful challenges.

It has been almost 10 weeks since we first came home from CHLA.  Time is really flying by and Zoe is growing up too fast for my liking.  The first two weeks were really tough trying to find a groove with administering too many medicines through out the day, using her pulse ox three times a day, and all the normal new baby things, and trying to get back into our own lifestyle.  Sleep was unheard of between my obsession of checking whether she was breathing, even though she was sleeping right next to me, or trying to wake her up to eat.  I had quite a few tears from being overwhelmed, scared, and just plain exhausted from those long months leading up to Zoe and her first HLHS battle.

4 months old 11.4.11

During these past weeks there have been several cardiologist/interstage appointments at CHLA as well as the usual pediatrician appointments.  So far Zoe is doing really well in all aspects.  She has doubled her weight from birth (11 pounds 10 ounces yesterday) and finally made it into the 10th percentile on the growth charts (we started out in the 3rd!).   Apparently her heart was enlarged when she was hospitalized (oh the things they don't tell you, I could go on and on about that - but I won't), but at her last echocardiogram it was a great size.  There is a small portion of her heart that is damaged and it doesn't seem to be an issue at this point.  It is possible that it can heal itself.  Other then that she looks good on the medical side.  Medications have been stopped or reduced, which makes life much easier on a day to day basis.

The plan is to schedule her heart catheterization at our next appointment (in a weeks time) for December and shoot for the Glenn surgery this January or February.  While we really want to get to this surgery and get out of interstage we are becoming nervous about another open heart surgery and hospital stay.  This procedure should result in a much shorter stay, as long as there are no complications, and is no where near as complex as the first Norwood procedure.  We will talk more about the Glenn in another post when we closer to this time.

3 months old 10.4.11

Interstage = a terrifying.  Interstage is what they call the time between the Norwood and Glenn and it is a very critical time.  We have to be extremely diligent on keeping Zoe healthy and watching her closely for any issues or complications arising. The brunt reality of this stage (really all of them, but this in particular) is that things can go bad, really bad, and really quickly.  What this means for us?  I am home 99.9% of the time with Zoe on lock down.  We have very limited visitors and obviously no one that is sick, has been sick, or has been around anyone sick. It also means we live each and every day taking no moments for granted.  Every morning and night I whisper to Zoe, with tears in my eyes and a heavy heart, to promise to that she will stay with us.

I have had enough of this part - so I am going to stop and start with all the fun things of having Zoe in our lives.

Zoe is one strong willed little girl.  Her personality is delightful and she is full of smiles and giggles.  When she is hungry you better be ready or very quick or the whole neighborhood will hear her demands.  She loves to talk and we are certain she tries to say I love you.  She can sit up while assisted and plays with all of her toys.  Zoe prefers to be with mommy 100% of the time, we practice baby wearing and co sleeping.  She giggle while falling asleep which is the cutest thing E.V.E.R.  B & I are just in love with Zoe and are so thankful for our little miracle.  Every day is a blessing.

Moments leading up to now...

Moments after extubation

just after extubation

in mommy's arms

Graduating to "the floor"

a real crib

working on the feeds to avoid a G tube

dressing the tiny peanut

We are going home!

heading home - farewell to our nurses 

coming home outfit, the only thing that remotely fit

showing off her battle wounds 

the pulse ox

There are a ton more pictures I want to share later