Well, Ruby pulled out her tube yesterday during her afternoon nap. We haven't put it back in yet. We're supposed to let her get hungry and only feed her what she takes by mouth once a week. I know it's Doctors orders, but I have been lax about doing it. I always seem to find a reason why today should not be the day I starve my child. It was time for some tough love on my part yesterday. So when she pulled it out, I left it out. I'll put it back in before her afternoon nap today.
So far she's taken 2 ounces of fortified milk, one ice cube of avocado, and one ice cube of butternut squash since yesterday 1pm. I'm going to give her her Nexium as soon as she wakes up and we'll see how the day progresses.
I'm going to ask that unless you yourself had a child with severe oral aversion and was on a feeding tube for an extended time, please don't give advice. While I'm sure it is well intended, I personally can't take it. This is hard. Very hard. My child won't eat. So unless you've dealt with this please just lend support. Understand that we are trying EVERYTHING. We have the best Doctors in Austin and Philadelphia helping us. This is a long frustrating road.
That being said, we are in much better place than we were 7 months ago today.
Happy 7 Month Birthday Day!
Yay for you for squashing
Yay for you for squashing the "she'll eat when she's hungry"; "my baby was finicking too, you just have to make 'em" etc etc etc! Audrey was tube-fed for 2 years, it's a LONG, beyond-frustrating journey and those well-meaning-but-ignorant comments can definately put you over the edge! Just know you are not alone, and that Ruby is a rock star, tube or not!
Happy 7-month Birthday
Happy 7-month Birthday Rockstar Ruby!!! Holly & Chris YOU ARE DOING AN AMAZING JOB!!! You're so right...it's hard, it's just plain hard...We're thinking of you and we know that one day this, too, will be behind you!
I'm a big Ruby fan, even
I'm a big Ruby fan, even though I don't post much. From one BabyLeg wearing, cloth diapering, homemade baby food making, CDH bootie-kicking family to another, I know how you feel (http://www.sofiascdhstory.com/2009/08/patience-is-virtue.html).
Sofie was entirely tube fed by the time was 8 months old. "A very long frustrating road" is right, and I know that really doesn't begin to do it justice. But having climbed that mountain and made it to the top, I can look at Ruby and what you're doing for her and know that she'll be standing on top of that mountain someday soon. I'm always amazed at how right on target her therapy seems to be and how her docs are supportive of trying to wean the tube and encourage hunger. That's a rare find in a medical team, and it's the key to her success! Hang in there - she will do it. And trust me, it will all be worth it!! Ruby has already proven herself to be quite the rockstar, and she won't slack in the feeding department either. Go Ruby!
Feelin' Your Pain Mama! Hang
Feelin' Your Pain Mama!
Hang in there. Who knew feeding would test our patience so much? It's been a truly humbling experience this whole eating thing. And I know one day we will look back and think "Wow! Remember when you didn't eat?!" There are good days and bad days but I keep thinking this too shall pass. Until then, we just have to hang in there, appreciate the small (extremely small) steps forward and ride the wave. You rock. Ruby rocks. Happy 7 months!
xo
Megan, mama to Olivia, still rocking the NJ tube for 11 months and going nowhere fast
Holly, I know it is so
Holly,
I know it is so hard, I would always find a reason to drop Weston's tube. I didn't like the fact that I knew he needed so many calories and that for that day or even a couple of hours he wasn't getting them. I couldn't understand why he wasn't hungry, I would think ok usually you get your feed every three hours and now it is going on twelve hours since your last feed and you don't care, you don't fuss or cry, he was always as happy as could be. I am so glad that your doctors are working with you and with Ruby. Weston's GI doctor wanted to go to a G-tube after a year and we said no.
I want you to know I understand your frustration, especially when you know she can do it, when she has taken a couple of ounces and avocado and squash. Just know its ok to drop the tube, you're not giving up, but it adds peace of mind. I wont lie it is so much easier to just feed them by the pump, you have your schedule and you're used to it. I just want you to know that down the road for some reason it just all of a sudden clicks and she'll be eating everything in sight.
Stay strong, email me for anything to vent, to ask anything. Ruby is a strong little girl! :o)
Jenny (Weston's Mommy 7-9-08 LCDH, on NG tube for 13 months)
Happy Birthday miss Ruby!
Happy Birthday miss Ruby! You've come a long way, baby. Wait, wasn't that an advertisement for cigarettes? Forget it...she has come a long way!!
Nothing but hugs and love and support from IA. Your request was right on, unless we've been there, we can't really give constructive advice. Just know that we love you all.
No assvice, but plenty of
No assvice, but plenty of silent support & good wishes!
Hoping very hard it gets better for you all soon.
No advice--just support.
No advice--just support. Hang in there. You have done an amazing job so far--there is no reason to believe your next steps will be anything but. JUST. HANG. IN. THERE. I am rooting for oyu from Switzerland. I love checking in and seeing your family's amazing progress!
Nothing but support coming
Nothing but support coming from me! Hang in there and always remember there's wine and cheese (for you, not Ruby)...again, she's adorable and you are supermom.