claire has emerged from her keppra coma. i have never seen so many smiles, so much awareness, i feel like she is allowed to finally experience her world. i hope whatever medications we try in the future never take her away from me again. just look at her eyes, they have come alive.

“I will turn their mourning into gladness;
I will give them comfort and joy instead of sorrow.”
Jeremiah 31:13

thank you Jesus.

it’s been a tough week because it is becoming more evident that the newest seizure medicine from the UK is not taking away the spasms. claire has a neurologist appt at barrow tuesday afternoon, so i am sure we will be talking about the next step. i am dreading it. so much so that adrian may have to take claire without me. i literally go into a panic just thinking about this. i don’t know why but i avoid all conversations about claire’s brain as much as i can. i do not even want to think about it, see pictures of it, hear more explanations, bad news, etc. it makes me feel like i am having a mental breakdown. i am not exaggerating in the slightest. i am petrified. adrian says that if it is too much for me that he can take her and have all those brain talks and just tell me what i need to know. he is so much better at explaining all of this to me than the doctors. i hate doctors. i don’t care if they are nice, or caring, or smart. they SUCK. he says that i take claire to so many doctors appts alone and so many therapy appts alone, that if skipping the neuro doctor will help me then that is what he wants to do. i love him so much. but i also don’t want him to be there alone either. i know it is hard for him too. at church this weekend, we talked about that even though life is uncertain, God is not. that the bible is not full of happy-ever-after, hunky dorey life stories. remembering that the hebrew nation waited on God for 400 years to have their prayer answered. that even when it feels like God is absent, not showing up in my situation- He is still there. that He often uses the biggest messes to do the most amazing things. and we know that in ALL things God works for the good of those who love Him. that He has the whole world, my world, claire’s world in His hands.
but my heart still asks why, i am still scared, i am still hurt, i am still jealous of my friends’ babies, i am still angry. yet beneath all of that, i am still waiting and i still believe.

one of my absolute favorite bands, david crowder band, has a new single from their upcoming album available for download on itunes. this makes my heart so happy. i am double the happiness because it also happens to be “how he loves” one of my absolute favorite worship songs at church. a song my mom loves to sing to claire. and a song that we most definitely will be singing at claire’s birthday celebration.

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us so,
Oh how He loves us,
How He loves us so.

We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
So Heaven meets earth like a sloppy wet kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…

He loves us.

what: claire alaina vender is being dedicated at her church. (child dedication is like a pre-baptism if you will. we are pledging to raise claire to love God and know who He is. when she chooses to, she can be baptized, that way it is her choice!)

when: this sunday, Mother’s Day, may 10th at 9:30am

where: lifechurch.tv phoenix campus meets @The Boys & Girls Club 44 N. Oak Gilbert, AZ 85233 (off Elliot and Gilbert)

consider yourself officially invited to share in this special day with us, we’d love to see you all there!

sorry for the looong blogging absence. it’s been a pretty hectic month, some good and some bad. claire is continuing to grow and get prettier every day. she is now 28 inches long and 19 lbs 13 oz! uf-da! she is still eating all by herself and we have gone down to 4 feedings a day since she is able to take a bigger bottle and solid food. it’s a challenge to sometimes follow a schedule since she is very sleepy somedays and likes to stay awake at night but we are working on it. her favorite foods are spinach, sweet potatoes and mangoes. she still loves her pacifier and now has a favorite maraca to play with thanks to her nana lisa. her hair is getting very long and we are able to clip her bangs to the side with a barrette. she also has started cooing a lot more and likes to say “ooooo” and “gaa.” as for the hard news, we went to barrow neurological institute a couple weeks ago and she was diagnosed with Infantile Spasms. it is not what we wanted to hear. it usually means that the risk for mental and motor retardation is high. the spasm episodes typically last until age 2 and then a different form of epilepsy takes over.  please join us in praying for claire’s healing and development. we know the medical odds are stacked against her but we believe in a big God who can do big things. we know that He uses ALL things for good. and we trust that He is protecting our claire bear and bringing us through these struggles for an amazing reason. i won’t pretend, many days are very difficult and overwhelming and sometimes i want to just give up. but i know deep down inside me the truth. the truth that God loves our little family more than we can imagine and created our baby girl just as she is. it may not be the average, normal scenario that i dreamed of but it is His perfect plan for our lives and i am so thankful for the gift of claire.

well, i hate to have to tell you all that we got the worst news of our lives but it is true. claire’s brain development is more abnormal than we thought and we still have no answers for her future- only that a “normal” outcome looks less likely than before. her brain tissue is thin, meaning she does not have as much brain as a typical infant does; there is no pressure in the extra fluid in her ventricles, meaning her brain is not thin b/c of pressure from the fluid so a shunt will not help; and lastly her EEG showed very abnormal brain waves especially in the left side. she has been having mild seizure-like behaviors for the past couple weeks but they were not detected on the EEG, this doesn’t mean she is not having seizures though. we are starting her on an anti-seizure medicine hoping that this will help the neurons in her brain behave more normally, but it is not guaranteed to work. we are also faced with the fact that her head size may swell and she will need brain fluid to be drained if the ventricles do not stop growing or the opposite-  her thin, unhealthy brain tissue may stop growing and lead to a small head size. we pray that seizure medicine will help, her brain will mature and learn to communicate more effectively and her physical development will be completely normal.

are we devastated? yes. are we angry? yes. but are we giving up? never. claire is still the same beautiful, lovable miracle that she has always been. this new information does not change that. we will never stop fighting for her and working hard to find ways to help her reach her full potential- whatever that may be. we grieve for the dreams we have lost, but we will have to find new dreams for claire and still embrace the joy that she brings to our lives. this is the hardest thing we have ever faced, beyond any imagination and expectation but claire deserves all the love, patience, dedication and comfort that we can give her.

she is our daughter, our inspiration, our delight, our precious gift.

i wanted to pass along that Claire’s brain procedure will be next week, thursday the 15th. we expect Claire will be in the hospital until saturday and one of us will be allowed to spend the night with her. please join us in prayer for Claire’s healing, for the doctors and nurses who will be caring for her and that we would not waiver in our hope that we will have encouraging answers to her brain conditions. also, i want you all to know that Adrian and i are leaning on each other, our marriage has never been stronger and we are so in love with our beautiful, strong baby girl. she doesn’t even know what an inspiration she already is to us. the huge hurdles she has faced in her few months on this earth are nothing short of amazing. in the midst of brain, kidney, reflux and feeding problems she still continues to smile, coo and wiggle with happiness. sure, she is not where other babies her age are developmentally but we are so proud of what she has accomplished and we know that there is much more to come.

okay i am going to be completely honest and let you all know how tough the last few days have been for me. i have been feeling really hopeless and helpless and starting to lose all faith that Claire will be okay. she is now 8 weeks adjusted in age and i still have not gotten that pretty smile i see when she’s sleeping, she also hasn’t cooed yet and doesn’t seem to want to make eye contact very often. to top it all off, we made a formula change per her GI specialist’s reccommendation which really jacked up her tummy. she has been a gassy, crampy, sptting up and crying mess since friday. then, the first time i tried to bottle feed her on my own on saturday was going so well until she stopped breathing and turned colors again. i truly trusted God that we were past that and had so much faith that she wouldn’t do that to me anymore. when it happened i was totally devastated and haven’t been able to regain confidence again. it just feels like that whenever there is improvement, there is then a step backward. i try to focus on the things she can do like lift her head, bring her hands together and kick her legs but it is so hard. i am in mourning that all the dreams i have for her will probably never be realized and she will have significant delays because of her brain abnormalities. i just don’t know for sure what they will be in the future. i wish i could just focus on one day at a time and rest in the truth that she will be loved no matter how she turns out but i honestly can’t. i am so sad and so angry at God still. i don’t know how to get beyond this point. claire needs your prayers to be healed and grow and develop but i need your prayers too. i am having an extremely difficult time with all of this.

The sky is grey and the light is far
The sea is a rage within my heart
I turn my sight to the crashing waves
I cry in the night just to be saved
I need eyes to be my guide
I need a voice that’s louder than mine
I need hope, I need You
Cause I can’t do this alone
Grace, I call Your name
Oh won’t Your smile fall over me
I’m cracked and dry on hands and knees
Oh sweet grace rain down on me, I need You grace
I pray for dawn, a new day to live
I pray for mercy only Jesus gives
Though darkness falls and a million cry
I believe over all there’s a greater light shining for us
Come down and save me

- grace by phil wickham

i thought i’d better give an update of what is going on with claire bear since i’m not sure how much everyone knows. although there is a lot that adrian and i will not know until claire gets bigger and develops over the years. here’s the story so far- claire was born at 35 weeks because i had dangerously low amniotic fluid (i was in the hospital @32 weeks.) she was frank breech, which means her feet were hooked above her shoulders (ouch!) and because of this, we recently discovered she has hip dysplasia. she will most likely need to be in a soft brace for a couple months to correct it, no biggie right? if only that was the only thing she had to overcome! claire was born with a part of her brain missing called the corpus callosum. it basically helps the two sides of the brain communicate. combined with that she has a few cysts in her brain as well. both of these issues separately are usually not too serious but combined raise more of a red flag. her doctors tell us that what they see so far is very promising and baby’s brains adapt so well and make new connections in amazing ways. we are faithful that her brain will continue to grow, repair and develop as we have already witnessed. she may have some delays but we do not have any reason to think they will be significant. claire also has some blockage in her kidneys and they are being closely monitored. her specialists are hopeful that the blockage may clear itself as she grows and since the function is normal right now they do not want to do anything. we are so thankful that her kidneys work and seem to be healing themselves! lastly, claire has serious feeding problems. at the hospital we discovered that she has a weak swallow and aspirates thin liquids. we tried thickening her formula but still had a choking episode so she is fed with a tube that goes from her nose to her stomach right now. we are starting feeding therapy on friday. god is so good that he provided a therapist so quickly for her! the doctors are again confident that the poor swallow is something that will improve over time and will not be permanent. so there you have it. our little miracle. she has already proven she is a fighter and full of strength and wonder.

for you created my innermost being; you knit me together in my mother’s womb. i praise you because i am fearfully and wonderfully made. your works are wonderful, i know that full well.
psalm 139: 13-14