Oct 20, 2008

claireokay 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

by | Categories: faith, family | 9 comments

claire bunnyi 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

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