today a package arrived for claire, darling little flower bows and headbands to show off her long brown locks. i ordered them from an etsy shop, prettybabybowtique. trust me, don’t drop $25+ at an overpriced specialty baby store for these when you can easily order from etsy at less than half the cost. i adore them!
as for updates, we spent a good 4 hours at the dreaded hospital today for claire’s kidney ultrasound and urologist appointment. claire was such a good girl the entire time (she saves the screaming fits for home!) the doctor said from glancing at the films that her kidney tissue looks like it is growing and the blockages do not look any worse. praise God for a little speck of positive news! so it’s wait and see with what they will do about the blockages as she gets older. we’re praying that she simply outgrows them. oh and she weighed about 10 and a half pounds! wow. she is a superchunk already. time to ask the pediatrician about taking her off the high calorie premie formula.
thanks for all your prayers and kind words from my last post. it means so much to me to have such encouragment from friends, family and even people i’ve never met. this process has been a rollercoaster of emotions but your comments, emails, phone calls and visits give me strength to keep going and fight through this. i can’t express how i feel except to say i love you all so much.

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

today our furbaby, lily, turns four. she is one special, smart and super friendly doggie. lily loves tennis balls to a fault, swimming, the word “food”, giant stuffed animals, eating popcorn, burying her head in anyone’s lap, her uncle/boyfriend matt, playing with her best dogfriend gracie and attention of any kind. on top of all the normal dog tricks, she knows the names of all of her toys and can bring them to you on command. she also plays soccer better than me. lily hates any mention of the words “ears” and “stinky” due to her frequent ear infections (we can’t keep her out of the swimming pool) and visibly pouts when people leave our house. she also wins the award for world’s hairiest dog and no matter how often you brush her, she will quickly cover everything in sight with her fur. we still love her though. she is our silly lily and as human as a dog can get. don’t ever leave us lily, okay?

seriously, how cute is she? i know moms are supposed to think their children are beautiful but she is just so pretty and girly already. i love how long her eyelashes are (thanks daddy!) and how her cheeks are so chubby they rest on her shoulders. adorable. now we just have to work on getting that feeding tube out of her nose. her first feeding therapy session went amazingly well. her therapist, jenn, thinks claire will get the hang of her bottle in no time and before we know it we’ll be on to mastering solid foods. i am so thankful we’ve found her. she’s so encouraging and helpful, just what i needed to take a little bit of the worry away! our next meeting with her is on friday. can’t wait!

when claire was finally discharged from the hospital for good on september 14th, my mom came and stayed with us for a week. she cooked for us, held claire so i could sleep, cleaned our house, gave just the right amount of advice and provided the steadfast support i needed as a new mommy facing very difficult circumstances. as the end of that week approached, i asked her to live with me. she didn’t think adrian would go for that. but what i was trying to say in a humourous way was how amazed i am to have such a giving and loving mother. as the weeks have gone on, she has continued to be a source of comfort, companionship and strength. i’ve always known that i have an exceptional mother but since claire has arrived it’s like there is this new layer to our relationship. i couldn’t be more thankful.

well i don’t have much to say today. miss claire has been quite cranky for the past few hours, courtesy of a gassy tummy.

we had some good news yesterday that claire will NOT need a hip brace for the time being. her pediatrician said the looseness is not too severe and she would just want to do a repeat hip ultrasound in a few months. we also cancelled all her neuro appointments today. we began to feel really uncomfortable with the idea of the CT scan and exposing her to radiation for a non-emergency situation. she’s already had quite a few x-rays which makes us want to limit any more of them. i’ve realized with all of the medical interventions she needs that you really have to research things and not take doctors at their word. with so many specialists involved, they really do not do a great job of communicating with each other and it forces parents to decipher what is best for their child. in my opinion, the more we are able to allow claire to be a normal baby and give her time to grow the better. so all that brain stuff is on hold for now.

instead we enjoyed a beautiful lunch date with daddy and even lily at joe’s farm grill. sitting in the shade under the huge trees, enjoying lemonade and sweet potato fries- it was a lovely day. that is until the gas monster arrived.

1. a lunch with nostaglia. pb and j sandwich with a side of raw carrots and dip. all i needed was to add one of those little cartons of chocolate milk. hmm, where do you get those from besides lunch ladies?

2. baby dream smiles. claire has the most heart melting smiles in her sleep. gummy ones with dimples and the sound your mouth makes when it’s really big. i can’t wait until she smiles at me like that.

3. wreaths. i have one for every season and it makes me giddy to put up the fall one every october. i wish i had a reason to stare at my front door more!

4. a google chat with my sister in law alex. somehow she makes me feel so supported and cared for just by simple, everyday conversation. i love her.

5. adrian. he got up to feed claire @ 5:30am so i could sleep, got ready for work, and kissed me goodbye saying, “i’ll miss you today.” perfect.

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

just an fyi that we added a photo page on the right sidebar. it links to our flickr account, where you can view the pics in different sizes as well as print some if you want. we finally got a new camera yesterday since ours broke a couple weeks back so look for lots of model shots of claire, she likes to play dress up!

welcome to our vender family blog! i have been meaning to start something to keep all our family and friends in the loop since baby claire arrived but as many of you know, the transition of new mommyhood along with the many hurdles claire faces have delayed me. adrian and i also plan to use this site as a creative outlet for our little hobbies and interests so don’t be surprised if you see a recipe for cupcakes followed by some nerdy technology find from adrian. just teasing babe! anyway thanks for visiting and i hope you’ll keep coming back!