“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

It has been quite awhile since I have written anything and I do apologize.  Our holidays were fantastic with lots of love, excitement, and happiness.  We did learn the results about her muscle biopsy, and she has tested negative for a mitochondrial disease! This is fantastic news because now we have knocked down another  hurdle, and brought her closer to the possibility of the heart transplant.

Our Tiny Princess has been making some serious strides with her development, and has begun to walk further distances then ever before!  We are looking into leg braces (or AFO's)  for her to help fix some small issues she is having.  Of course she does not know anything is wrong with her style of walking, and is just concerned about being able to keep up with her friends.  Just looking at her, you can only see a very happy, energetic, sweet toddler, ready to get into anything and everything.

It has still been a very trying adventure, but we treat each bump in the road like it isn't even something to worry about.  After many discussions with doctors about a feeding tube, the "understanding" side of me is ready for the surgery.  The seriousness of Ella dropping into another hypoglycemic episode is real, and the knowledge that we are VERY lucky that she not only survived, but came out unscathed weighs profoundly  on our decision. Our Tiny Princess is  your typical 2 year old, in the since that she will not eat when she is upset.  That scares me.  She will go hours without eating, and with most kids this is not an issue.  With Ella on the other hand, she doesn't have the same reserve.  She weighs 20 pounds on a good day, and the slightest hick up will effortlessly send her into a tailspin.  The mother side of me (and my husband can agree) does not want her to have it.  It's one more surgery, one more doctors appointment, one more thing that could go wrong, and one more push to the realization she is really sick and not your "normal" child.  Then I look at her sweet face and see the understanding, the happiness, the love, and the inspiration that takes each medical situation with such grace.  She does get frustrated with the testing, but she doesn't let it ruin who she is.  It's amazing what a Superhero she really is.

Our Tiny Princess has LVNC/DCM, EoE, hypotonia, congenital cataract, and developmental delays.  In her mind, she is none of that.  She is a sister, a daughter, a friend, a student, a destroyer of paper, a snuggle bear, and a holy terror.  She knows her limits, but doesn't allow them to limit her.  She is amazing!

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. 
~ Unknown 

The biopsy/lens implantation surgery turned out a success! Our Tiny Princess did not have to spend the night in the hospital, and her lens implantation is doing great.  It was very nerve racking hearing the anesthesiologist explain the complications from the anesthesia, and allowing her to have the surgery.  I cried about such a simple surgery for fear that it could cause life threatening damage.  My Superhero proved to be stronger then me as always.  

Now we have to wait for the results. We go about our daily routine of going to work, dropping the kids of at daycare, celebrating birthdays, planning to attend weddings, and celebrating holidays while having this little fear in the back of our minds about the unknown.  Will the results change how we love Our Tiny Princess? Of course not, but it does cause some stress and fear that cannot be avoided.  

Following the surgery, we looked at her discharge paperwork and noticed something quite different.  Our Tiny Princess has a different diagnosis then what we were originally told.  This was quite shocking to us because no one ever corrected us when we talked to the doctors.  

Left Ventricular Non-compacted Cardiomyopathy.  

Such a long diagnosis for such a little girl.  After researching the information, we have found that Dilated Cardiomyopthy is often times the wrong diagnosis that they give children with Left Ventricular Non-Compacted Cardiomyopathy (LVNC).  The treatment doesn't change, just the name and the rarity of her condition does.  It also explains the reason behind the biopsy, and the possible genetic link to her condition. 

With each new finding and each new test, we still hold on strong for Ella.  Life is always going to be full of surprises and changes for everyone, how you handle each situation makes you who you are. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough troubles of its own." Matthew 6:24, The Bible

Tomorrow is finally the day for her biopsy.  It has been a very long wait due to the fact that we are trying to schedule an eye surgery at the same time. The eye surgery seems like a needless procedure to some people because of her condition, but we are preparing her for a very long life.  We want her to be able to see as normally as possible when she gets older.  We treat her like she will live until she is old and gray.  I will admit that I assumed this would not be a difficult task because all the doctors are in the hospital, why can't they just do two surgeries at the same time?  Apparently this is very hard to coordinate due to different operating days for the surgeons, finding a cardiac anesthesiologist, and finding an OR with the right equipment to preform both surgeries.  

Another difficult task was finding a surgeon willing to preform the muscle biopsy.  From what I can gather, this is a simple procedure where they take a small amount of muscle from the leg.  However, it's the condition of her heart that is being questioned.  One nurse admitted that fragile hearts like Ella's scare most nurses and doctors that are not cardiologists.  

Hearing this really engraved in my mind how incredibly lucky we really are that Ella is doing so well.  I've heard it time and time again, people look at her chart and ask, "How long have you been on the transplant list?"  When we tell them we aren't, they look at Ella in shock.  "She's doing great right now.  She's a fighter.  There is not a need to put her on the list when she would be at the very bottom."  That is what I tell people with a smile.  I'm so grateful to be able to have every moment I do with her knowing we are on borrowed time.  I'm very lucky and blessed knowing that there are so many other parents out there that don't get the time we have with her.  So many parents would kill for just one more day, and we have had close to a year.  I thank God every day we have her.  We live each day to the fullest that we can.  We play with her, cuddle her, and love her every moment. 

She is our Tiny Princess Warrior! Hear her squeal!

“Happiness makes up in height for what it lacks in length.”
― Robert Frost
5/31/12  Our life has, for once, been pretty uneventful.  Our Tiny Princess had an increase in her heart medication, which has made such a huge impact on her personality.  I can tell she isn't getting tired as much, and loves to crawl as fast as her little body will take her.  She squeals and giggles as we chase her around the house.  She just seems to love life, and you can see it by the huge smile she has for everyone. 

We've been to Houston, but nothing has really changed.  The only thing we are looking at doing is a muscle biopsy. Honestly, it's a kind of scary procedure.  The doctors in Houston have decided that waiting until she was needing a heart transplant to do the biopsy was not a good idea.  She seems strong enough to be able to handle the biopsy now.  The question is, are we strong enough to allow this procedure to be done.  She will have to be put under with an overnight hospital stay.  There is a possibility she will not handle the biopsy well.  It also means that we will have to face the truth about a heart transplant.  Will she qualify?  If she has a mitochondrial disorder that will attack her new heart, she will not be allowed to receive one.

 Part of me understands that if she has that issue, giving her a new heart would not be fair for someone who could live longer.  Part of me doesn't care.  That part of me wants to be selfish and demand the heart.  I mean, why not? I've already had to say goodbye to one child, is it really fair to have to say goodbye to another one?  People think I have it together, but I really don't.  I think like most parents would, but know those thoughts are not going to change the outcome.  All I can do is pray.  Pray that God will do what is in his plan, but pray that she does make it.  I'm human, and I'm still a little selfish. 

Selfish, hurt, confused, scared, and hopeful are the feelings that drive us everyday. What drives us the most is the beautiful smile that greets us when we call her name,  Ella.

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.
Eleanor Roosevelt

A little hiccup is all it takes.  Something so small that can only be seen under a microscope can cause the scale to no longer tip in our favor.  Our Tiny Princess hasn't been feeling well lately.  She caught a stomach virus, and her fragile body is having a hard time fighting it off.  The progress she had gained these past couple of months has been stripped away so quickly.  She's lost weight.  Her heart function has declined.  

My heart breaks while fear fills the cracks.

Our Tiny Princess still fights.  

The amazing doctor in San Antonio keeps such a great eye on her, and stays completely honest with me.  We went in yesterday to make sure she wasn't declining.  She looks fine.  She plays. Her valves are not leaking.   She laughs.  Nothing looks abnormal until you look inside her body.  The doctor looked at her heart with concern, fear, and confusion.  Then he looked up at me and said the words I feared. Her heart function has decreased.  Not a lot, but the worry is all over his face.  He left to talk to another doctor in the office, and to look at blood work from last week. 

I prepared for another hospital stay.  I sent a text to my husband to come quickly. The doctor came back in, and said we just need to keep an eye on her and increase her medication to give her heart a break.  They want to see if she can fight this off.  My Tiny Princess can fight this off.

My husband is so good with her.  He is nursing her back to health.  He is making sure she has everything she needs to fight.  One more day of watching to see if she needs some help. I think we will make it.  She is my little fighter after all.  One more battle won.  Now to prepare for many more, and to tip the scale back into our favor.

Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them.  ~Vincent McNabb

Life has been a roller-coaster of  emotions.  Trying to balance work, family, and doctor's appointments started to become a bit overwhelming.  Keeping busy has been a blessing because then we don't dwell on the Tiny Princess's condition, but at the same time it's a curse.  A curse that we may be ignoring precious moments with her that could very well be lost some day.  

The Tiny Princess has being doing very well.  She is standing and desperately trying to walk.  She laughs and squeals often, and it melts my heart.  It's been a delight spending as much time as I can with her.  Work has kept me away from home more then I would like which caused me to be scared and worried.  Worried that I have been ignoring the seriousness of her condition because she is doing so well.  

We visited the Cardiologist in San Antonio, and he is now my hero.  This poor man had to sit and listen to me babble about my fears, my confusion, and my worries.  He did all of this while I teared up and so did he.  We left this appointment feeling like we were in control, even just a little bit.  Her heart looks like it is getting smaller.  The Doctor of course didn't want to get our hopes up too much, but he said that maybe it was getting better.  The Tiny Princess even put on weight!  

We found a forum for parents with The Tiny Princess's condition and it has been a blessing.  There is a child on there that beat all the odds and his heart slowly got better.  Could this be the case for the Tiny Princess??? I hope we keep making the doctors look at her in confusion.  Confusion on why she is doing so well when all their books say that she shouldn't be.  My little fighter. 

If it wasn't for the love, support, and prayers from our friends and family, I know we would be lost.   Life is a gift and Ella is our angel.  We are the luckiest family in the world to have this beautiful angel that we get to hold, kiss, and snuggle.  Right now I could not ask for more :)

Feb 2, 2012 

                     “Life's under no obligation to give us what we expect.”
                                                         ― Margaret Mitchell

RSV   Three little letters that can change a child's life forever.  Three little letters that can change a family's life forever.  It's crazy to think that one little virus can cause so much damage to Our Tiny Princess.  It's crazy to think that something that many people get and have no idea that they carry, can put Our Tiny Princess in the PICU.  On Jan 27th I was at work when I got a phone call from the daycare.  

Ella was not eating.  

She was sleeping a lot.  

She had some rapid breathing. 

My mind going a 1000 miles a minute.  We were just in Houston.  They said her heart was fine. Heart failure.  Is this it? Are we moving to Houston?  We rushed to get Ella from daycare and headed to the ER.  They whisked us away to a room and started to run some tests.  Sitting there I watch Our Tiny Princess pretend she was fine.  She wanted to play and crawl.  She didn't want to be at the hospital.  She knew what that meant. It meant wires, IVs, and being confined to a bed.  It meant her freedom to be a normal girl was gone.

Sitting there I watched Our Tiny Princess start to decline.  The cardiologist came in and talked to us.  We watched the echo and I could pick out some things but not a lot.  My fears started to boil up as I fought back tears.  I watched my daughter go limp and just sit there, not caring what was being done to her.  She was a fighter and she stopped fighting. 

The cardiologist sent us to the PICU where they ran some more tests.  The ER said she didn't have RSV, but they ran the test anyways.  She had a virus, but they did not know what it was.  She was started on IV fluids, and IV heart medication so her heart didn't have to work so hard.  We were scared and drained. I had to go to work the next day and all I wanted to do was stay with Our Tiny Princess.  What if something happened and I'm at work.  Would I make it back in time?  What kind of mother was I to leave my fragile little girl alone?  I kept telling myself that I was a strong mother that I had responsibilities.  Bills had to be paid.  The rest world still went on like normal even if mine was falling apart.  The world didn't care if I only got 2 hours of sleep.  

Being at work was torture. Checking my phone every 5 minutes while putting on my best smile.  At work I found out Ella had RSV. I was terrified.  RSV could kill her.  RSV was horrible. We had been vaccinated. Why was this happening?  The hospital talked about oxygen treatments and intubation.  They said that she would get much worse before she got better.  The fear was how bad would she get.  

 I stayed in the hospital with her during the week.  She never got to the point where she needed oxygen.  We watched as other kiddos did.  We were lucky.  The doctors thought that she was doing great because we didn't hesitate.  We had her vaccinated.  Her heart got a break with the IV medication so she improved amazingly.  It was a feeling of elation,but also sadness.  The other kiddos that were doing worse may not have been vaccinated.  Why should any parent have to go though this if we have a vaccine?  Yes it's like the flu shot and you are only protected by on strain. Yes it is expensive, but the PICU stay is a lot more.  

Feb 2, 2012  We are home.  We are happy.  All Ella wants to do is play and crawl.  Aubrey keeps hugging and kissing Ella.  Our family is once again complete.  I love every minute of having her home, but this feeling in the back of my heart worries, when will be the next time we are in the hospital?  Will she go home next time?  Will she still be able to fight?