"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.
