Thursday, August 22, 2013


Thank you everyone for all of prayers, well wishes, coming to see me, and love!!

Lilly's stay at CHOC (Children's Hospital of Orange County) started on the last Saturday in June.  At about 8am I was cleaning the house for my side of the family 'family day' when I thought Lilly was throwing up, I know her sound.  I ran into my room and asked her if she was going to throw up and she said yes.  I grabbed the 'throw up bowl' and headed back to my room.  She was not moving and I desperately tried to get her to walk and talk but could not.  Her beautiful eyes went to the right side and I knew something was wrong.  I grabbed her and the phone.  I  dialed  911 on my way to the living room to place her on the ground.  While I was talking to the dispatcher and giving a continuous status on my own daughter....this is what was happening.....I laid  her on her left side, she would get stiff, she would then throw up, her eyes constantly went to the right side, and he was repeating the word 'like' over and over, then stiff, and her skin turned pale. I thought she was dying from a stroke.  While trying to keep it together for the 5 minutes it took the firemen and ambulance to reach us (they are only .5 miles away...pissed me off) Emma was still asleep, but Drew was watching the beginning of this.  I asked him to run and get neighbors, but none answered the door.  Help finally got to us and off we were to the hospital.  Luckily when the sirens were heard people from our street people came over and grabbed Drew and Emma for me.  I also have to share that they were in my room by then and did not see the worst of Lilly.  I called Derek and told him where we were going.  One of the hardest conversations.

I really did not know that Lilly was having a seizure, or rather multiple seizures.  They lasted for over 40 minutes and only ended when we got the the ER and they gave her meds to calm her down.  But when they were sucking her cliched jaws during her final seizure....I figured out what was going on.  I wanted to break down and cry, but then Derek walked in and I had to be "strong,"  which distracted me for a bit.  Below is Lillian sleeping.  
**I also must say that I have debated over posting any of these pictures that Derek took that might be 'unpleasant' but it is what it is.......**    

Our bug slept until 11:30, just in time for her transport to CHOC.  While at the ER she received some of the best care with the quickest CT Scan and chest X-ray EVER!!  All of her blood work came back what was going on?  Did I do too much stuff with her or was it the ear piercing?  I did not know.  

When at CHOC doctors flooded the room, a welcome committee came in to see Lilly, admission stuff was taken care of, child care for Drew and Lilly had to be dealt with, and family phone calls had to be made.  Bottom line, Lilly had a massive seizure that lasted more than 40 minutes with no injury or fever to provoke it.  We knew that we may not receive a "reason" for it, some seizures just happen, but I really wanted an answer.  After an MRI, EEG, blood work, CT Scan, X-ray, and so on.....Lilly has EPILEPSY!  

MRI.  She was scared and threw a massive fit, but once they gave her the meds she was out.  Only to wake up screaming!

The EEG was placed on her head during the most unfortunate time.  Jo, Ken, Claire, and Uncle Kevin, Aunt Elisa, Carly and Uncle Dwaye came to visit her and the sight of her like that was not good.  I cried from the reaction I saw in peoples faces as they entered the room.  Once she started the hour long test it was hard to get her to stay still.  Derek and I were in bed with her... Derek fell asleep (that boy can fall asleep anywhere) but once she stopped moving during a part of the test Derek woke up and we just looked at each other....we knew something was wrong.  After she stopped moving she fell asleep.  

While trying to wait for the news on Lilly I had some of the best times with her.  Well, not just me...but so many people that love our little girl so much.  

Of course, Nana came everyday and ended up taking  Em and Drew for a few days......
Auntie Chow came and painted with her....
Auntie Elisa, Uncle 'Wayne' and Carly came...
Auntie Debra came...

Even Mrs. Brenda came....
**I did not get pictures of everyone, sorry!**

Lilly danced when she was not being entertained by the staff or in the playroom.

Once after she got done dancing she had to get a new IV...not good, I was praying so hard to bring her strength.

CHOC has 'turtle time' which is an interactive show.  I am told it is like the show/ride/show at California Adventures.
There is even a "Ryan Seacrest Radio Station/Studio" at the hospital where kids can call in from around the hospital and request songs.  The team members also go to patient rooms and hand out crafts.  Craft time just happened to be during a time when we had multiple visitors, so it was fun for everyone.  After hats were made Saige took Lilly into the studio with Carly, Em and Drew.  They had so much fun talking on the radio and Lilly even danced for everyone.  

Daddy and Billsy having fun after her MRI.... that was not fun at all......luckily she does not remember the experience.  

All in all, went well.  There is a strength that comes from within a parent when events like these happen.  Our focus was Lilly, but with two other children at home we have to pull resources in order for one of us to be with her.  I never knew I could go 4 days without a shower!!  I only left the hospital once to go get some clothes and I still can not tell you exactly what I bought.  I was worried the entire time.  I have always known I was the 'rock' in our family, but until June I think I really did not accept it.  Mommies are just different.  The lack of sleep, asking questions, listening, lack for personal hygiene, laying in a small room with Lilly...was what I did.  Mommy stuff.  Stuff that is handled by me.  Stuff that can BE handled by me.  Little moments like walking the halls of the hospital with Lilly at the age of three reminded me of walking the halls with her when she was 2 days old.  I felt the same way then as I do now.  Lovely:)  Derek, well....he wants his daughter to be healthy and works damn hard to provide for her.  Our children are the love his life and I can not ask for anything more.  He was such a mess, but he has me to help him....honestly.  I love that man to death!

So now.................

Getting the news that our Bills is Epileptic we had some a tears in our eyes for her... it is what it is.  It is not the end of the world.  We have an answer.  She has to take meds twice a day and have a breakthrough med with her at all times for "in case."  We trust those awesome doctors, who are our age!  That is craziness, btw.  She has also been welcomed into the neurology department!!!  Maybe she will grow out of it, who knows.  For right now the dust has settled and Lillian is just fine.  She knows she has this and knows she needs her bag with her during dance and at sleepovers.  It is not the end of the world, by any means, but just a change.  No more baths by herself and if she is in a swimming pool one of us needs to be in there with her.  Just a change.  A change that God has given us and it is going to be just fine!  A change that we had no signs of coming.  Oh, and the most expensive 3 days ever!

I did not advertise the event on social media/text/calls until days after we were home.  I did not even call my best friends to tell them.  But I do want to thank: Nana, Grandma Linda, Auntie Chow, Saige, Carly, Auntie Elisa, Uncle Dwayne, Jo, Ken , Claire, Uncle Kev, Auntie Debra, Mrs. Alisha, Merlot, Pooka, Mia, Uncle Chris, Mrs, Sarah, and  Mrs. Brenda for coming to visit Lilly.  Also, Auntie Patty, Uncle Clint and Cody for the wonder package at the hospital.  Great Grandma Del for the money, she loved the card!  Finally, Auntie Mar, Uncle Sam, baby Sam and baby Bastien for the beautiful flowers. She loves her godparents!  Thank you everyone for your help with Em and Drew!!!  It takes a village. 

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1 comment:

Kaci Mae said...

Thanks for sharing...I so much love your honesty! I am glad you had so much support and that things turned out okay in the sense that life goes on mostly like normal. You are a great momma!