Tuesday, September 18, 2012

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. 

Wednesday, September 5, 2012

"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!

Thursday, May 31, 2012

“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.

Thursday, April 12, 2012


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.

Wednesday, March 28, 2012


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 :)

Thursday, February 2, 2012

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?

Friday, January 27, 2012


"He who does not hope to win has already lost."
Jose Joaquin Olmedo


Jan 27 2012  Off we went to visit our friends at the Texas Children's Hospital.  Chest x-rays, Echo, and EKG unfortunately did not show any signs of improvement.  There was a slight decrease in her heart function, but the doctor lowered one of her medications to see if we could get that percentage back.  He did give us a bit of good news.  There is a 25% chance that we can fix her heart without surgery.  It may seem like only 25% for some people, but for us, it was like a new outlook on Our Tiny Princess's condition.  So far she is eating much better, and trying so desperately to walk.  She acts like a she wants to be a normal healthy kiddo.  We want her to keep thinking that way.  Positive thoughts are an amazing thing.

Friday, January 20, 2012

Our Tiny Princess

"One day you’re innocent, then circumstances find you in an unlikely situation and you wonder how you could have been so stupid."

Our sweet little Ella Mackenzie was born on Nov. 15, 2011.  At 7 pounds 2 oz, she was my biggest baby, and came into the world with a bang! From the moment she was born, she stole our hearts.  Her big sister was still on the fence about the new addition, but soon came to terms with the fact that Ella was staying.


While taking some pictures of our Tiny Princess, I noticed that she had what looked like a cataract in her left eye.  My heart just dropped.  We had an older child who was also born with cataracts and multiple birth defects that passed when he was 14 months old.  A million thoughts rushed through my head.  Is this really happening again?? I thought the chance of us having another child with heath problems was so low and Reese was just considered a genetic fluke? Were the doctors wrong? I'm I going to have to plan another funeral? Trying to keep it together for my family, I never uttered a word to anyone.  The Pedi agreed it looked like she had a cataract and off we went to see the Eye Doctor.

January 12, 2010 (my 28th birthday), my Tiny Princess had her first eye surgery to remove the cataract. The surgery went off without a hitch, Ella went home, and we went about life as usual, for the most part.  With Reese having so many medical issues, the Pedi, Dr. McCash, and I agreed that erring on the side of caution would be best, so many tests and doctor's appointments were ordered.  After an MRI and a neurological visit, we were elated to hear that the Tiny Princess was perfect!

Over the next couple of months, we fought with getting the right size of Ella's contact and some tissue growth that was normal with cataract removal.  Once everything was perfect, we lived life as normal as possible.  Many sleepless nights, lots of hours at work, and tiny sounds of laughter filled our days and months. Life couldn't be any better, or so I thought.  I kept having this nagging feeling deep in my gut telling me something wasn't right.  Something was still wrong with Ella.  Something hidden that no one was catching.  Then slowly, it started.

After many late nights and wondering if Ella would ever sleep through the night, I started looking at Reese's medical records comparing them to Ella's.  Then it hit me.  I wasn't going crazy.  Her weight started to resemble her brother's weight.  I called the Pedi, and asked her to look at the history.  Please quit telling me that her weight gain was normal.  Yes, she was gaining weight, but a pound in a month? This isn't normal. This is a fight I was willing to fight to the end. Finally, after seeing another doctor, by chance, she looked at Ella's chart, and looked at Reese's chart, and she agreed with my observation.  Chest x-rays and swallow studies were ordered.  Speech Therapy and Occupational Therapy were ordered, and we quickly switched our daycare to Bright Beginnings. 

After weeks of trying different foods, constant weekly weigh-ins, our Tiny Princess had to have an upper and lower GI study with a biopsy done.  That is when we learned that she has Eosinophilic Esophagitis (EoE). http://www.eosinophilicesophagitishome.org/  Ok. Now we have answers. Now she will gain weight.  Now she will be strong and chase after her sister.  A couple of issues, I can deal with.  This isn't life threatening.  So, she couldn't eat the same foods as everyone else.  We were use to food allergies, her big sister has them.  This is going to fix everything.  Or so I hoped.  Hope is the only thing keeping me together at this point.

New formula in hand, we started a new chapter.  All smiles when we headed to the Dr, because she had to have gained weight.  Of course she really hadn't, but they said she will, just slowly.  Her tummy was small and had to expand.  I was ok with this explanation.  We didn't want her to gain weight too quickly, and we didn't need a feeding tube.  So, off to a normal life we went! 

October came and I was getting excited about taking Halloween Pictures and getting ready for the Holidays.  A couple of sniffles here and a fever there didn't slow our children down a bit.  The daycare kept checking on Ella's weight, excited like we were that she wasn't screaming after every feed anymore.  They even tried baby food when Ella felt up to it.

That weekend that Ella came home with a fever, she didn't eat much, until gradually she pretty much stopped eating.  I figure it's a bug, but took her to the Pedi just in case. On October 25, 2011 She sent us to the hospital for re-hydration.  Because our Tiny Princess was so tiny, any weight loss or lack of eating was not good for her at all.  Extra precautions were taken. At the hospital, the nurses were upset that Ella wasn't eating, and that I wasn't forcing her to eat.  Force a baby to eat.  Are you serious? Teaching me how to feed the Tiny Princess really got under my skin, but I took it all in stride.  After a couple of days working on her feedings, they were sure we would be going home soon, so I went back to work.  I carried the insurance, and her dad was perfectly capable of taking care of her. 

Thursday, October 27th, 2011.  I had talked to the hubby about them doing a chest x-ray and echo either that night or early that morning.  Honestly it's a blur.  I do remember wanting to go back to the hospital, but he said that everything was fine and to go to work.

I was at work.

The phone rang and it was him. 

He told me in the calmest voice I have ever heard, "They think they may have found a mass on Ella's lung or heart." 


My world just crashed.  A mass? A mass? With all the tests we have been doing how do you miss a mass?? With tears running down my face I raced to the hospital.  What is happening with my Tiny Princess? Is this why she still isn't eating well? My parents came down with my brother. I was beside myself.  My in-laws were watching our oldest Aubrey.

At the hospital Robert and I talked.  I held Ella, he held Ella.  We were confused and scared.  Robert left to go and take a shower.  My best friend was there with me.  No worries.  My parents showed up to keep me company.  They came in to do the Echo.  The tech started measuring, and I noticed something was wrong.  He called the cardiologist.  I called Robert.  Dr. Brennan came in and took a look at the Echo. He did his own measurements.  He asked why we were here.  He asked why we weren't in the PICU.  The PICU? Then he said it.  She has an enlarged heart. 

"You asked me what was wrong, I smiled and said nothing, when you turned around and a tear came down and I whispered to myself... everything is."

Cardiomyopathy.  It's a scary word.  It's a word that brings many questions, but not many answers.
The cause of the Tiny Princess's condition is unknown.  A virus was out of the question, but still something the doctors wouldn't rule out.  Was it genetic? Was it mitochondrial? Was she just not producing some kind of hormone?

The PICU was a scary place. I watched them strap monitors on her, and start medications.  We had to wear gowns and it felt so unreal.  Ella was screaming and I was crying.  The Doctor was trying to talk to us, but honestly I wasn't listening.  She didn't tell us anything we didn't already know.  Waiting.  Waiting was our only option.

After many tests, the Cardiologists in San Antonio said that this was beyond their knowledge.  We needed to go to Houston or Dallas for further treatment.  A heart transplant was possible, so Houston would be the best choice. There was talk of us being transported to Houston, but the Houston doctors said it wasn't necessary.  She wasn't on a breathing machine and she was stable.  So we met them in December.

Heart transplant.  Two words that I fight with.  It means that her heart will never get better.  It means that with medication she will be stable.  It means that she will get worse.  It means that we can lose our Tiny Princess.  It also means to me that we may never get one.  Not only is it hard to get someone to allow their child's heart to be taken, but what if she doesn't qualify? What if she has a condition that would kick her off the transplant list? Thoughts that I fight with every day.

The doctors at the Texas Children's Hospital were helpful.  They said that there are children with conditions worse then hers that still act like there is nothing wrong with them.  They never gave us a life expectancy, but they did tell us the likelihood of her passing tomorrow wasn't something to be worried about.  Could it happen, yes,  we aren't stupid.  They still can't tell us why this is happening.  We are still running tests.  We are still waiting.  We are still Hoping.  Hoping it's something that can be fixed.  Hoping it's something that she live with for a while.  Hope.

January 20, 2012.  Ella is still growing and thriving.  Our Tiny Princess is crawling after her sister, her best friend.  Ella is still very small, but she is living.  These past couple of months have been hard and very emotionally draining.  The 22nd marks the 7th year we will be without her older brother.  I fully believe that he is watching over our Tiny Princess and protecting her.