ellie's eating

there are many blogs i have written since having ellie that i sometimes don't feel like they are acceptable to share with the world through a blog...so for therapy I sometimes sit down at the computer and blog/write what my heart is feeling/mourning. ellie as you all know has an eating disorder. she was born only two weeks early- yet after living with the sweetest nurses in b-ham and steeling their hearts at two different nicu's, we finally found out that she has a swallowing issue. through many hrs of working on this with her. she is finally starting to get it more and more each day. she can swallow thankfully, but swallowing with a bottle in her mouth and breathing at the same time- overwhelming! ellie is taking about 5 oz's every three hours- she swallows about 2 to 2 1/2 of those oz's and the rest we feed her through her feeding tube. the first few months after ellie came home, mike and i had to get used to feeding a baby through this tube- it almost didn't seem real. i thought- do i feed her in public, can other people hold her without pushing too hard on her button/port in her stomach- so many questions swarmed my mind. but then when you live with someone and get used to their daily needs/ the questions become a reality and feeding her in public is just what we do now, because this is what she needs right now. There have been many days I have been fearful of her eating patterns for the rest of her life, but what in the world does fear do? just make a mommy worry more and more- stupid! through these trails with ellie- i have learned what "real" faith is- i have mentioned this before. when you have a child that you can't "fix" something and there is nothing you can do but daily give her a bottle and watch her choke/ struggle every 3 hrs- that's when i have nothing left. God has given me Psalms 91 to dwell on. I have to wrap my every thought and being around this amazing psalm full of power. there are some days i give her a bottle just hoping and praying that today she just going to get it and we'll get the feeding tube taken out and things will change. but then i know that even before i was born god knew this was going to be our prcious child- one to love, to kiss 900 times a day, to enjoy, to watch grow, to fall in love with more each day. she is ellie!
i am at the docs office with her a few times a week- i know- you all are thinking- how did i not know all of this??? well- never in my life do i want anyone to pity my situation/child/ family- but through each week God has shown me this is really our life now (not from john and kate plus 8) ha! ellie has been through a lot for only being 5 months old. she is suchhhhhhhhhhhhhhhhh a little trooper- so calm, so sweet, loves loves loves to smile, is madly and deeply in love with her daddy, and thinks her big brother (even when he is rough) is the funniest thing ever! I want to share our lives as not perfect but real. we are struggling right now just from being completely worn out. I took ellie to the doctor 3 times last week and already once this week. bless her heart, she has had 4 double ear infections already. our amazing doctor yesterday just looked at me and said, the plumbing in her ears just isn't working great- meaning- this is why we are getting so many ear infections. poor baby. we will be getting tubes put in her ears within the next few weeks. i know tubes aren't a big deal and baby's get these all the time- it is just heart breaking to see your child be in so much pain- but thankfully yesterday the doc gave me so numbing drops to help sweet el with her pain.
again- i share all of this for you know our lives right now. ellie brings sooo much joy into our house- she makes me laugh all the time with her giggle- even in the middle of trying to gulp down a few oz's- i'll say- way to go baby- and she gets so proud of herself she'll giggle and then start choking- lovely! we are so blessed to walk through life with so many that are praying daily for our baby girl and us! to say thank you- i feel isn't even worthy!