Ellie Marie a year ago today! We all were supposed to be on a family trip to Aspen Grove. All my sister-in-laws and mom-in-law bravely entertaining the kids and keeping face while they were getting the updates of the day. Thank you so much for this. My girls needed you guys!
A few days later after they pulled the breathing tube.
(I apologize in advance for the extremely long post, but I needed to put it on record)
I can't believe it! A year ago today, we didn't know if we were going to see our little girl alive at the end of the day. It was such a hard emotional day, that I have yet to blog about it. I had intentions to document everything, but the events that took place last year, rival events from a made up movie.
We had been in the PICU for a few days already and were planning surgery for Friday. It was Thursday and Ellie was going downhill fast. She needed to have surgery as soon as possible. We were told that whoever got done with surgery first out of the three surgeons, that is who would be doing the surgery. Dr. Kouretas was the lucky man that drew the short stick. He came into our room and with my parents, Nate's dad (Nate's mom was entertaining the girls at Aspen Grove) and us, explained the dire circumstance that Ellie faced. We all followed her out of the room bawling. I remember seeing the other parents at their kids bedsides giving us smiles of sympathy and support as nothing was said as we made the march to the waiting room. We sat there waiting for our first visit from Bonnie the NP. She never came. The waiting room was full of parents at the end of the day waiting for anything from tonsillectomy to what ever. I remember feeling the look from other parents that they could tell our situation was far worse. I remember the phone would ring as a parent would be called to the counter to be told they could go see their child.
My heart sank, I look up to see a frazzled Dr. K come into the waiting room frantically looking for us. He spots us and asks us to meet with him in the consultation room. This was only about twenty minutes after they told us they were starting. This surgery was supposed to take four to six hours! Nate grabs my hand and as we were following him, he is squeezing my hand so hard it hurt. He goes on to tell us that her heart gave out during anesthesia. She essentially flat lined. They had to get her back with a shot of epinephrine.
It scared him so bad he decided to abort the surgery. He said she had no reserves left so when the put her under, that was the final straw that her heart could handle. They got her back and felt like the only option for survival was to do a heart cath to stretch it out and give her time to get better until she could handle the surgery. We gave them the OK. He then told us "I want you to be prepared that as week as she is, I don't think she is going to make it through the cathprocedure."
As you can imagine, we didn't know how to react. He left. We cried. I sprawled myself on the couch and cried some more. Meanwhile, the family that was left in the waiting room didn't know what to think. They saw the doctor leave but we stayed. We stayed until they came to get us to see her before the cath. You can't think in a situation like that. Her eyes were fluttering. But she was there, weak but there. I felt an amazing calm come over me. I was feeling the prayers of so many loved ones comforting us. I left and could not take my eyes off my bracelet that I had been given by a dear friend. It was a yellow live strong cancer bracelet that they gave us after her cancer diagnosis. I kept thinking be strong Ellie, live strong.
We were given a pager this time and told to wait in the PICU waiting room. Nate and I had one of the parent rooms for sleeping in so as the family waited, I couldn't take anymore. I went in the room and pretended to sleep. My sister and mother-in-law got there after hearing how things were going. The cath was supposed to take two to three hours. At this time it was late. I could hear everyone talking in the waiting room. Then I heard the pager go off. It seemed to soon. Nate came in to get me and we hugged each other for a while and then went to the cath lab. Dr. Gray met us there, he was the one doing the procedure. His facial expression gave me a feeling of instant relief. I knew things had gone well. All I heard after that was like the teacher from the Peanuts cartoons. Wawawawawa. She had developed an anurism in the aorta from the balloon stint but everything else went really well. And best of all, she had survived!
We went back to the PICU waiting room and as soon as we walked in, Nate says, " it was a success." Cheers erupted from our family, so I apologize if you were trying to sleep in the rooms. It was really late. We were emotionally, spiritually and physically exhausted. We sat bedside for several hours watching her chest rise and fall and then rise again. She was bloated and hooked up to everything imaginable. We both went into our parent room crawled on the twin bed and crashed. What a day! What a year! What a miracle!
"Sometimes the pattern of life seems monotonous and discouraging. It is like climbing a mountain and after reaching the top, getting knocked back down to the bottom to climb it again; but I guess the fun is in the climbing and not the arriving!"-Marjorie Pay Hinckley
Nate, Becca, Macy, Adrie and Ellie
I am the author of this blog, my name is Becca and this is our story. My husband and I have four beautiful girls. Macy, Adrie, Eve (who was stillborn) and Ellie. Ellie is the reason for this blog. She was born with a neuroblastoma in her neck and a coarchtation of the aorta. She has congenital heart disease and severe cardiomyopathy due to a late diagnosis. We are hopeful of the outcome and wanted to share our journey with family and friends. I wanted to update her status as of January 2010. Ellie has physically done well despite her heart not seeing any improvement. We are still in limbo of whether she will need the transplant, but we are hoping to avoid that. The tumor was shrinking, but after the last scan appears to be slightly larger. We have a follow-up MRI in February, so wish us luck on that. She is one year old and talking and trying to stand on her own. She is such a joy to us and her sisters and keeps us all entertained.
Macy is such a bright personality. She loves to take care of her siblings and is the perfect non-rule breaker. She is such a good example to her little sisters and is very nurturing.
Adrie is our spitfire and Is our drama queen of the family. But she is extremely tender hearted and is very observant of others and their feelings.
"Some people dream of angels, we held one in our arms."
This is Ellie! She is the reason behind this blog. She is the bravest strongest girl I know!!!
The baby of the family of all girls! She has been such a happy go lucky child. She keeps us laughing with her cute and fun personality!