This is Davy's room. Well it's her corner in our tiny room. I've always dreamt about how i would decorate my little girls room and it never involved an IV stand. Oh well, enough of the pitty party. I've been getting a lot of questions on how I feed our little Davy, so I thought I'd give you a peek into one.
Meet Joey, he is a kangaroo. He slowly but surely pushes 130mls of pure mom juice through a tube, straight into Davy's tummy. This is done over a half an hour.
After each feeding we have to push warm water through the bag to clean it. I hate this part. There is no fast way of doing it. I wish we could use a new bag every time. But we have to make it last 24 hours.
After each feeding we have to push warm water through the bag to clean it. I hate this part. There is no fast way of doing it. I wish we could use a new bag every time. But we have to make it last 24 hours.
The rubber tube you see is called a G-tube. Do you see the clear knob at the end there? That's where we plug her into the Joey. On the side is an extra opening for us to push her meds through. Aren't her little legs the cutest? She has my fat knees, poor thing.
Now this, this is the piece DE resistance. This is the syringe that we hook into her tube and can literally suck air out of her tummy. It is awesome. Sometimes she has so much gas, I put it in and the air pops the syringe up all by itself. This is the best part of a G-tube. I really wasn't utilizing this at first and Nurse Angie told me I was crazy. So now I'm always busting this bad boy out.
14 comments:
Love the syringe! After I used it on her yesterday you could see the instant relief on her face.
(Last night after eating a big salad for dinner I was wishing I had a syringe I could use on myself)
wow! so I am a stranger that will now FAITHFULLY read your blog. You are inspiring. You have a perfect family. I mean really how can one have so many pretty people under one roof? I am an OT student and I want to work with all the Davys out there. I am also LDS and I am a mother of 2. Thanks for sharing your life with everyone.
I just love your blog. I discovered it this very moment and I am captivated. I am going to spend the next few days reading over previous posts!
wow that's crazy seeing that little tube go into her stomach! i'm way impressed that you're doing all this in order to feed her. good job!
my goodness..
what all you guys have to go through.. but to get her fed.. anything...!
Simply amazing. There is nothing we won't do for our children. I can only imagine what hooking her up for the first time by yourself must have been like. You are AWESOME!
You don't know me...my sister just found your blog and showed it to me last night. I love your pictures, your story, and your strength through this whole journey with your sweet girl. My son (17mon) has had three open heart surgeries all before he turned 1 year. I also have a friend here in the are who has a son born with cleft lip and is now a little over a year and has had two of three surgeries... I can relate to so much of what you're going through. We live in So Cal,and are a part of CA Heart Connection Group that offers TONS of support and has answered so many of my questions. If you ever want to talk- my email is Gracie_333@yahoo.com, and and I'm Ali. Nice to meet you:)
Thank you for your comment! I was born with a cleft lip...unilateral, like Soraya's (only the opposite side). I had a surgery when I was 4 months old and then an optional revision when I was in high school...I wanted the one side of my lip to have more shape. Davy is just precious. Babies with clefts teach you a lot...I know Soraya's taught me a deeper kind of love and she's made me a stronger person. I can't imagine how strong you are though- I've never seen the G-tube and had no idea it was like that. She is so brave! When will her lip repair be? Do you go to a cleft clinic with a team? I don't know if you already know about it, but I found a babycenter message board for cleft lip/palates when I was pregnant with Soraya and it was a lifesaver! The people there are very encouraging and have lots of good advice! http://community.babycenter.com/groups/a56125/cleft_lipcleft_palate
I want to go read more about Davy now - I just looked at a few of the recent posts. you are an amazing photographer and I absolutely love the pictures from your baby shower - I'm obsessed with owls. :)
i adore that davy. i have only read two posts, but it is really nice to read this and relate with some of it (joey, g-tube, making lemonade). i know our situations are different, but we are the same that we adore our baby (mine is the size of a baby, but not one) girls.
i get comments all the time about how someone knows exactly how i feel and we are so similar because of fill in the blank, and it gets kind of annoying sometimes. i think that was rude of me to admit, but i'm just trying to say that i know we aren't the same person and our situations are very different. it is just nice to know that i'm not the only one finding happiness in spite of some hefty trials.
go davy's mom.
love,
reagan (pip's mom)
Wow... all that just to feed her. That is so much work on top of your 3 wild boys. How do you do it? You should treat yourself to a massage. You get the "Mom of the year" award!
I can't remember how I found your blog a few days ago....but I am so glad that I did. You are so blessed to a beautiful baby girl in your home. I hope you don't mind if we follow you! You can visit us at www.alanandannie.blogspot.com . I invite you to our little blog so you know we are not total freaks! I am from a small town in Utah and love to read about others and Davy intrigued me. I now wonder if I would be as strong as you and as willing to learn?
Love your Blog!
Just "stumbled" onto your blog. Sweet family and sweet baby girl! One of our twins JUST got rid of his NG tube 4 weeks ago... our "joey" is getting ready to go back to its original home and STAY THERE! Hopefully yours can too :) Will be praying for you guys and your journey!
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