Here's where we are...

Hello everyone,
I would first like to thank everyone for all the prayers and well wishes you have sent our way. Our little girl only knows 10 people (not including her doctors), but she has people praying for her all over the world. We are so incredibly grateful for the love and support.

Lily came home on Thursday, December 10th in the evening. She is doing well at home. We have had a little gas issue and have been trying out a different formula, but besides that she is doing great. They sent her home with her medication, Keppra, to control the seizures and that seems to be working. She is also on a pretty strict feeding schedule, but that is perfectly fine. We like a routine around here.

They still have metabolic tests out on Lily, so they have not yet ruled everything out. They should be getting those tests in the next few weeks. If those come back negative, then the neuro team said it may be a type of newborn epilepsy. She has an appointment in the neuro clinic in March so they can see how she is doing.


They have ruled out so many different types of things. The other day, Brandon and I were watching the doctors look for a certain chromosome test on the computer and saw the list of tests they had run. It was huge and they all came back normal, so that is really reassuring. Things could have been so much worse. I just count my blessings when I think of how lucky we are. I mean, we may be home without a diagnosis, but we know for sure it isn't a brain tumor, or cyst in the brain, or any other HUGE issue. Things could be so much worse....Praise God that they are not.

I can't believe Christmas is coming up so quick. I knew it was just going to fly by once Lily got here, but sheesh! So much to do. We go to Lily's 2 wk check-up on Monday and there we will ask him what he thinks about driving to Louisiana for the holidays. Hopefully, we will be able to, but her health is priority number one. If we can't...oh well. The last thing we want is to get to Louisiana, not have a plan in place and have something happen.

Please keep my little redheaded angel in your thoughts and prayers. Also, if you don't mind, say a little prayer for her mom and dad. Paranoia is running rampid around here and a little peace of mind would be nice!

Take care!

Here's what happened...

Here’s what happened…

On Thursday, we had asked the doctor to discharge us early because we didn’t want to have to drive home in the snow on Friday.

Friday Lily had 2 instances of what I suspected were seizures. I called the pediatrician because I suspected that's what they were. The pediatrician was going to call me back. I had told Brandon that next time she does this “seizing” activity we should video tape it so we can show the doctor. Meanwhile, Lily woke up, we went to feed her, almost immediately she started seizing again. Brandon grabbed the video camera and started videoing. Shortly after she started seizing, she turned blue and stopped breathing. Completely blue. At this point, Brandon threw the video camera across the room. We gave her rescue breaths, called 911 and gently shook her till she came around. Ambulance got there, took us to kingwood hospital, there our pediatrician had us transferred us to Texas Children's Hospital. Where he does his rounds. Once we got to Texas Children’s ER, Lily had 2 more seizures, during the second one, they intubated her because she stopped breathing again.

That night, she was moved upstairs to the NICU. Brandon and I registered with the NICU and followed a few moments behind her.
-Now, here is a little interesting tidbit-
I love TLC…I Tivo it all. One of the shows I love and tivo is “The Little Couple”.
Brandon and I turn the corner in the NICU and there is Dr. Jen Arnold from “The Little Couple” on her stool working on Lily! No lie.
So anywho, Dr. Arnold is great and such an easy doctor to talk to. It was crazy ironic and I was quite tickled that she was working on her. After such an emotionally exhausting day, I needed a little irony at that moment.

Brandon and I didn’t want to leave her there by herself, but we needed to go get some rest. The Ronald MacDonald House was full, so we went across the street to the Marriott.
The past few days have run in together and are honestly one big blur.
Here is what we know…
They did a CT Scan, MRI, X-Rays, lumbar puncture, labs for bacterial infections, labs for fungal infections and labs for viral infections. All of them SO FAR have shown nothing abnormal. They have even checked her eyes and they said they were perfect. Right now they are looking into metabolic issues, but they don‘t think that is it either. Right now she is a little of a mystery.

Now I know what many of you are thinking because I thought the same thing too. My medication. It is too much of a coinsidence that I was on an anti-convulsant medication and my child was born having seizures. I have been told over and over that it isn’t possible, but that doesn’t stop me from feeling guilty. I keep thinking that if I wasn’t on it, we wouldn’t be going through this right now, but they KEEP telling me that would not cause her to have seizures.

Saturday they started the new anti-seizure medication Keppra, but she ended up having a breakthrough seizure during the overlap of medications. Sunday they took the breathing tube out (THANK GOD) and started feeding her through at tube through her nose. Today (Monday) we started feeding her with bottles and using the tube to only get down what she couldn’t finish by bottle. They also stopped her on all the antibiotics so no more IVs (yeayyy). She was really happy today. She had a good day and smiled a lot. I got to give her the bottles all day and then daddy went down and gave her the 9:00 bottle. She was loving on him and even opened an eye for him for a split second.

Ok, well I am going to go meet Bran back in the NICU for the 12:00 pm feeding. Hopefully I will be able to keep updating, but things are a little crazy right now.

Please PLEASE please keep Lily in your prayers.
We need to find out what is causing these seizures so we can put a STOP to them! She is so little and needs all the prayers she can get. THANK YOU ALL FOR YOUR LOVE AND SUPPORT!

Lillian Emma Casey is here!

Finally...
After 41 weeks, on December 1, 2009, Lily finally made her grand entrance into the world. :) We decided to go through with the c-section and Lily was born at 12:43 pm weighing 9.3 lbs and 21 1/4" long. I was sooo nervous! I got into the operating room and started bawling because I was so nervous. The epidural was surprisingly not bad...I was expecting worse. The anxiety was the worst part. It got better when I was laid down and Brandon came in, my nerves subsided so much. The anesthesia guy was concerned about the death grip I had on Brandon's hand though. Apparently, it was making the machine flat line.

As I laid there, my doctor was giving us a play by play...
"This is going to be a 9 pounder."

"Whoa, where did she get the red hair from??!!"

The moment I saw her was surreal. They laid her on my chest and I said, "hi, Lily.". When I talked to her, she opened her eyes for the first time like she already knew me. I guess she did, but it was still the most amazing feeling. I brushed my hand across her cheek and was just amazed.

She was perfect. She is perfect. She is the epitome of love and Brandon and I couldn't be more smitten with her.


Now begins a new journey in our lives. We are so grateful to have such a beautiful baby girl.