Well.... I'm not as tough as I thought was. I gave in. After she only took 3 ounces total this morning I broke. I gave her a full feed through the tube at 10am. In my defense she has PT at 11:30 and it was going to be horrible session. Ruby was hungry and she knew she was hungry. She was signing for milk like crazy. I'd give her some, and she'd drink for 5-10 minutes and then fall asleep for 20 minutes, rinse repeat. At least she was making the association of being hungry and wanting milk. That's huge, as she wasn't doing that a month ago.
Also I'm never sure how much milk to heat up. You can't reheat a bottle after an hour the milk has to be wasted. I HATE wasting milk. It really is liquid gold. We are fortunate enough to have two wonderful women donating to Ruby. I hate the thought of their hard work going down the drain literally.
I don't feel like this experiment was a complete failure. We learned that she really does know how to sign for milk. We also know that she knows she's hungry. Hopefully next will go even better.
As for Mom and Dad it's hard to not sit down with each meal and hope "This is the meal." This will be "the one" where she starts eating. So far it never is. We'll get through this. I can't wait for the day that she's eating us out of house and home. At least she's not on ECMO :)
Hang in there. my baby boy
Hang in there. my baby boy Ryan was born with LCDH. We are home after our 3.5 months stay at Children's hospital boston. By gods grace is doing good. He is one month younger to Ruby. Ruby is such a darling. Very very cute. I feel some how that all these CDH babies are so so cute(extra cute). Ryan used to sleep during the feeds too. I would wake him up and try feeding him and also sometimes feed him milk using spoon or using syringe instead of bottle. That really helped us.
It is great that Ruby can
It is great that Ruby can sign for milk!!!! She will get the hang of it all and she will eat you out of house and home! That's where I'm at now... Trying to feed a bottom-less pit at the age of 5!
Good luck!
Oh, Holly, you poor thing!
Oh, Holly, you poor thing! I actually *have* had experience with a baby with a severe oral aversion and I know exactly what you're going through, and it's SO hard! My youngest has an assortment of medical issues that necessitated an NG-tube for five and a half months and then a g-tube (I have refrained from saying what I'm tempted to here on several occasions specifically BECAUSE you do have excellent doctors working with Ruby and my child didn't have a CDH and the assorted anatomical stuff to go along with it but shoot me an e-mail if you want to open the ass-vice floodgates). We were eventually able to transition to full oral intake (around eleven months) but it's REALLY freaking hard, both in terms of the amount of work and practice and also in terms of how very frustrating and emotionally taxing it is to try and do the "sink or swim" hunger challenge! To say nothing of the dozens of physical and behavioral things that can cause setbacks large and small, and the obsessive analysis you tend to do of what might be causing them, and...let's just say I feel your pain. And wasting breastmilk ALWAYS feels like a sin! I think it's great that she's signing for milk and starting to associate hunger with eating; that is a HUGE step and VERY encouraging. You're doing a great job, and if you ever feel like venting about the advice people give on this or the tactical headaches of balancing feedings and meds, etc. just let me know...
Holly, your positive outlook
Holly, your positive outlook is so amazing!!!
I'm with you, I think it's fabulous that she knows she's hungry now and knows the sign for milk :)
Keep up the good work...we're all pulling for you guys from near and far! :)