Happy Halloween from our love bug!

Happy Halloween! I ordered Lila's costume on the 2nd of October and it still hasn't come! She was going to be a mermaid, but thanks to my neighbor Emily Lila was able to be the cutest little lady bug!

Three months

surprise!

I tried to pull off a surprise party for Quinn but I have a feeling he wasn't too surprised. Thanks to everyone who could make it. (sorry I didn't get a picture of all of you hiding behind the wall) I am so sorry we were so late! Dinner took a lot longer than I thought it would. Thanks for being great friends. Love you Quinn.

Happy 30th Quinn!!!!

Happy 30th birthday to the love of my life!!! 30! Crazy! I hope that you have a wonderful day today! I know that circumstances could be better (I will try very hard not to break down and cry today) but please know that there is nobody I would rather weather the storms with. Quinn you are so wonderful. It is amazing how perfect you are for me. I am truly lucky and blessed to call you my husband. You are an incredible father and I have loved watching you raise and love our little girl. She will have a fun, caring, devoted and sweet dad for her whole life and that just fills my heart. Thank you for choosing me. I know it was neck and neck for a bit with "whats her name" ; ) but thank you for letting me be your wife and your best friend. I will be forever grateful for all the circumstances that threw us together on that tropical island. I love you so much Quinn! Have a wonderful thirtieth birthday!

Surgery # 1

Surgery number one was today. The doctors said that it went well and they got all of the bad lens out of Lila's eye. It is so hard to see her in her hospital gown and laying in a hospital crib but she is such a champ. She did so well. We ordered her contact lens and it will be here on Monday. The poor girl, we have several eye drops and ointments that we have to keep bugging her with. Surgery number two is probably next week, we will know more after our appointment with the doctor tomorrow. Please pray that this works and that Lila will soon be able to see. How exciting! I can't wait for that first moment where we can look into each others eyes for the first time. It will be the best moment of my life.

distraction

Isn't this the cutest picture in the entire world?

These past few weeks have been the hardest of my life, and they are dragging on and on. I feel like last week was years ago, so my sweet family is doing their best to distract me. We had a picnic and went to see the witches at Gardner village. It is one of my favorite things to do in the fall. It worked for just a bit ; ) I am such a stress case. thanks!

HOPE!!!!

We had some great news tonight. We are not out of the woods yet, but we had a glimmer of hope. Lila had her MRI today and after some long and agonizing hours we found out that things are looking better than they thought. Her optic nerve is much smaller than normal but it is functional. We talked to her ophthalmologist and she is going to have the cataract surgery this Friday with another one to follow in a week. Then she will just have to wear hard contacts before the next round of surgeries. So then it's just a waiting game.... I think my test in this life is to learn patience.
The doctors did find something to be a little concerned about. Lila is missing a part of her brain called the corpus callosum . It connects the left and right hemispheres together, but apparently there are plenty of people missing this part of the brain and you would never know, they would never know. They lead completely normal lives.
It was so great to get the news. Usually you have to wait for results (something that would have killed me!) but the radiologist reading the results was a friend of my dads. When I heard his name I called my dad who came down and read the results with the doctor. It was so sweet and special to get the great news from my dad. It was a wonderful moment, we were all bawling.
What a miracle! THANK YOU ! THANK YOU! Thank you to all of you who fasted and prayed for Lila. I believe in miracles and I believe that we had one tonight. Quinn and I were truly touched by the outpouring of love from everyone. We figured that over a hundred people fasted and prayed for Lila on Sunday. How can I ever thank you all enough! We feel so so blessed to have you all in our lives. I am so overwhelmed tonight. Thank you all so much. Please continue your prayers for Lila for the round of surgeries coming up. We know that Heavenly Father is listening to us and to all of your sweet prayers. THANK YOU!!

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.

we need your prayers, yet again.

Lila's pediatrician wanted her to undergo some tests up at primary's to see what might be leading to her developmental delay. We saw a neurologist last week who referred us to an ophthalmologist this morning. Bad news. Lila has cataracts in both of her eyes. She has to have immediate emergency surgery tomorrow to remove one and then another surgery in a week to remove the other. The scary thing is that in children the critical time for the brain to interpret sight is within eleven to fourteen weeks of life. Lila is almost twelve.... meaning that the brain may not be able to interpret the stimuli and she could be blind. Also there could be complications during the surgery and she could go blind. Obviously we are devastated.
The best case scenario would be that the surgery goes as planned and Lila will be fitted with hard contacts that she will have to wear for a year until they do two more surgeries to implant new lenses into her eyes. Which then will mean that she will just need glasses to read as she grows.
So far we feel like things have all happened for a reason. Lila's pediatrician is like family and has said that with another patient she wouldn't have referred her to primary's this early in the game. Because of her nicu stay some delay is normal, and she would have given her more time to develop, but she felt the need to send her up to primary since she is so emotionally involved. Then the Neurologist told us that getting into the ophthalmologist usually takes a month or so and yet we got in in less than a week. I hope this means that these are all little miracles that will save Lila's sight. But we could still use all of your prayers, thanks....

love!

Quinn had a vision conference down in Vegas so we thought we would head down south for a few days. Due to some unforeseen circumstances we had to cut our trip pretty short but it was nice to get away even if it was just for a day and a half. It was so fun because my parents and Kelli and her family were also staying at the George house so we got to spend some time with them. How great to have so many eager helpers. :)!
On Saturday we went to see Love the Cirque du soleil production at the Mirage. It was wonderful! We loved it. Thank you so much to Quinn's parents for watching Lila for us. It felt really weird to walk around the strip without her, but the production was simply beautiful!

unproductive?

Do you moms ever feel like this is the only thing you do all day? Yet for some reason I feel very productive getting nothing done.

jealous

Poor cubbie. She is very jealous of all the attention Lila gets, so she tries to put herself where we will be with her. Here she is trying to get in on the fun....

Patricia

I was so sad that I forgot to talk about Lila Patricia's name sake in my testimony at her blessing, so I thought I would write a post about my mom. Lila has quite the name to live up to. My mom is the sweetest and most amazing woman I know. Something that I realize even more now that I am a mom. I can't think of anyone else I would want Lila to emulate more than her. I was very fortunate to have her as a mother. Hopefully a bit of her techniques have rubbed off on me. I can only hope that Lila and I will have the kind of friendship that my mom and I have always enjoyed. Thank you mom for everything. I love you.

holding lila

Cute one of my dad and Lila

This was Ben and Grace's first time holding Lila. I love how little kids hold babies. It's hilarious.

making strides

At Lila's two month appointment her doctor informed us that she is a bit behind. Something that is very normal for a nicu baby, sitting for weeks in a bed with little stimulation, but information that has sent me into a bit of a frenzy. Poor Lila she has a neurotic mom who has degrees in psychology and human development, who over analyzes everything and jumps to worst case scenarios and recalls every case study that may pertain to her. Thank goodness she has a very down to Earth father. So as I have spent a few tearful nights with Quinn talking about my two month old it dawned on me that this will never end. I will always be worrying about my baby. If it's not hitting this milestone or that, it will be social issues and behavior. As I was talking to my sister and mom about this later I made the conclusion that being a mom is the best thing in the entire world, but at some moments it down right stinks. My sister just smiled and said Welcome to motherhood as my mom added, it never ever ends. I think I may give myself a heart attack or maybe another ulcer.
Oh how I love this girl. Quinn has been so reassuring. As we talked about her, he made me realize that I need to enjoy the ride. I am worrying so much about the future that I am missing the present. So today as I was listening to conference I was flipping through pictures on my camera and just started to cry. Look how far we have come! This little lady has accomplished a lot in her short life. She started off not being able to breathe or eat without assistance and now she is this little gorgeous spirit in our home. I am so proud of her, and I know that whatever comes our way I will be so grateful to be her mom.

fall drive

Yesterday we took a drive up big cottonwood canyon, over guardsman's pass and into park city. It was gorgeous. Lila really enjoyed it too ; )

We HATE tummy time

I hate having to let Lila cry! I am such a pushover . This is the most mad that she gets....

...... and she gives up. Frustrating!

Finally!

Finally a little bit of chub on my "in the 25Th percentile" tiny girl. I love it.