Saturday, October 16, 2010

Living a nightmare

It's worse than we thought. Lila didn't end up having the surgery yesterday. The doctors did some tests on her while she was under anesthesia and are not even sure that the surgery is going to do anything. They hooked up electrodes on her brain and were disappointed by the electrical response from her optic nerve to the occipital lobe. The optic nerve is not that big and they are not sure if enough information is getting through. The next step is to have an MRI on Tuesday of the brain and the eyes themselves to see exactly what is going on and how big the optic nerve is. If they think that there is some kind of information making it through than they will consider doing the surgery on the left eye since it is the worse cataract. The doctors are not hopeful though and are predicting moderate to severe vision loss.
As of right now Lila can see light and dark and some shadows. she is also extremely near sighted so she is wearing glasses in the hopes that she will be able to see something out of the right eye and stimulate the brain. Really everything is depending on the MRI on Tuesday.
How are we doing? I have gotten that question a lot in the past day.... how can we be? I am in extreme mourning and depression. My baby is most likely blind in every sense of the word. I am thinking of all the things that I use to be afraid that she had and I would take any of them over this. How can she not see!!! You learn everything from sight. How can my baby not ever look at my face and know I am her mother??!! To smile back at me? I will never be able to take her to the zoo and show her what animals look like or let her run to the swing set by herself. I feel like there has been a death. This is the most horrible tragedy. I feel like I am walking through a nightmare. Quinn is being the strong one. He is holding out for some hope that the MRI will show that she can have some sort of vision. I am not as hopeful. The doctors made it seem pretty hopeless. We even had a woman from the Moran eye center come visit our room to talk about resources to look up to learn how to stimulate our blind child. This can't be happening!
Please pray for us! Please ask Heavenly Father for a miracle, since I am short on Faith. I am too scared to hope because it hurts that much more when it doesn't work out. Lila has had so many blessings and prayers and yet I am struggling to see the divine in this situation. I know that is horrible to say and yet I can't help feeling like my passionate prayers are going unheard. I need to lean on you all for that now. Please help me.
Thank you to those who have reached out and sent me love. I really appreciate all of my dear friends and family who I have leaned on at this time. I also am so lucky to have Quinn. I am sorry that I am being a "don't be" right now Quinn. I will try harder to match your faith and your hope. I love you and Lila so much.

18 comments:

Sarah said...

kristi. There aren't words. we will be praying for your little family. what you are going through I can't even imagine. I love you and think of you often. your in our prayers and thoughts.

~*Felts~* said...

((HUGS)) Your prayers will never go unanswered. I know that the phrase "things happen for a reason" sounds like a bunch of BS,but I believe in it more than most. As you have said, she was seen by doctors quicker than most children, and has always been one step ahead. There is a reason for this. If she does lose her sight, she will know you by your wonderful voice, your laugh, and your spirit. She will know her daddy's wacky sense of humor, and know that everyone in the room is rolling their eyes!! Lila was sent to two loving and amazing people for a reason. You will make it through this trial because you and Quinn are the perfect pair and can handle whatever life gives you. For now hold onto Quinn and Lila but know that as soon as you're ready there is someone else you can hold onto too that is always in the room waiting. We love you!!

Lynn and Barbs said...

Kristi,
We are all heartbroken to hear this about our sweet Lila. All the Bullocks are praying for you and want you, Quinn, and Lila to know how much we love you. You are in our thoughts and hearts.
Barbara

Bart and Michelle said...

I love you, my dear friend. xoxo

Jenna Marie said...

Kristi, I am so incredibly sorry! My heart aches for you and Quinn! If there is anything at all that I can do for you please let me know. I will pray that everything will work out. I love you!

Brandon and Lindsey B said...

Kristi, we love you and are praying for you and Lila!

Love, Brandon and Lindsey

Kelli said...

My sweet sweet sister (and amazing brother in law)... Tonight my heart aches for you. I love you both beyond words. I am here now and for whatever comes... for EVERY step. I will always be here. Thank you for letting me always share your lives with you. I have loved sharing your extreme joys, and I feel privileged that I am one of those that you choose to turn to in your sorrows. Thank you for the spirit that you emanate to me every time I am with you... And Kristi thank you for spending this evening with me. Being WITH you means the world. I don't know WHAT I would do without you in my life. You are my one and only sister. And I am so lucky that your are. I love you SO much! I am praying for all three of you.

Gardner said...

Dido to everything said. You are in our prayers and thoughts daily.

Zane and Lexi said...

Kristi,
You ARE Strong! Look at all that you have been through in your life. You are Lila's mommy and she needs you. You are her best friend and she's the luckiest to have you. Keep your head up. We love you.
XOXO
Lex

Barb said...

Oh, Kristi. You and Lila have been in my thoughts and prayers every day. Lila's picture is on my fridge and long before this devastating news, she's been in my thoughts. I hope you can feel of the love of your friends and family strengthening you and this impossibly hard time. You are amazing, Quinn is amazing and your beautiful daughter is amazing. I know you will get through this horrendous trial. You have our prayers and all of our love!

ann said...

Kristi and Quinn,
All of the sweet things that have been said in these comments I couldn't of said any better. Know that we are thinking of you and praying for you and your sweet family during this difficult time. We love you!

Ann and Mike Ericksen family

~Walker Family~ said...

Quinn and Kristi
My heart goes out to you in this time of hardship. I hope for the best outcome. Baby Lila has really strong parents and knows that she is truly loved.

Sally Thomson said...

Kristi, Quinn, and Dear Little Lila, We wanted to let you know how much we love all of you and that we are praying for you each and every time we think of you. You are two wonderful parents full of love and faith. What more could Lila ask for at a time like this? With Love,
Dave, Sally, Jessica, and Aubrey

Daphne A. Quist said...

We love you guys! Lila is blessed to have you two as parents, really! She will know of your love, support and beauty as you support her efforts through this. Thank you for sharing her with us last night! BTW the glasses are simply adorable, I just wanted to squeeze her! Please, know you guys are in our thoughts and prayers AND please take care of you!

Ian & Ann said...

Dear Kristi~

I feel like you have been on my mind for an entire 2 days straight. Remember God works in ways we sometimes don't understand. He is well aware of you, Quinn, and Lila. I think to be given this trial means he loves you that much more. You are a special person to be given responsibility for such a sweet, tender soul like Lila. I pray for y'all daily, even hourly. I'm so glad for your friendship. Stay strong and hopeful because hope is faith.

Love,
Ann

Dr. LaRisse Skene said...

Kristi and Quinn --we are praying for you and Lila tomorrow. May you find comfort and love through this difficult time. This is just plain hard and it huts. We are hurting with you and thinking of you often. Please call us if you need anything.

L and N

Lisa said...

kristi,

i am a friend of kelli's. your little girl is so beautiful. your posting just broke my heart. i can't even imagine how you feel. it is so hard to have faith when the obstacles are staring right at you. i just wanted you to know that someone you have never met is praying for sweet lila. love, lisa

Steve and Liz Evans said...

We love you guys and praying for your sweet little family! Hopefully you will see little miracles in all this even if it means you feeling the peace that you need to get through all of it. Let me know if you want to talk. I am all ears!