"Babies will eat what they want, when they need it"

We hear some variant of this a lot. It's one piece of advice that people are quick to give us whenever they hear about or see us putting what Eliza didn't eat down her feeding tube. I know that it is meant with the best of intentions and in the majority of cases it's true, but not for Eliza. Feeding is hard for most preemies and especially 24 week micro preemies. Only spending 6 instead of 10 months in utero makes a big difference when it comes to oral skills.

For a very long time no one knew that Eliza had a feeding problem. While she had the ostomy she had to receive all of her nutrition by IV, since the amount of small intestine she had available was not enough to absorb the calories and nutrients she needed to grow. During this time we made sure to let her bottle feed whatever she felt like taking, just to help her develop her oral skills. She really liked to suck on the bottle and paci, but she was very ineffective and never took more than an ounce. Everyone thought her motivation would increase once off IV. And it did. After her surgery, she was clearly eating better, and plans were made for a quick discharge.

A few days before we were to leave, though, it became clear something just wasn't quite right. She had an increase in heart rate dips while she ate, she seemed to get sloppier and slower, and just in general unhappy. On further evaluation, the volume she was taking wasn't actually as much as they wanted her to, and pushing her only made it worse. This led to the nasal gastric (NG) feeding tube to supplement her eating. While her skills didn't seem to be improving, she was eventually discharged with the hope that the consistency of being at home would help, and with practice and weight gain that she would soon be able to ditch the feeding tube completely.

Eight weeks after leaving the hospital, after many many many (!!!) feedings and much experimentation with different positions, different scheduling, and different environmental stimuli or lack thereof, she just hasn't shown any real progress with her eating. For a little while she was doing better (as I mentioned in my last post), averaging as much as two ounces per meal and occasionally taking the whole bottle, but since then she's been backsliding and is once again at the point where she usually takes less than an ounce per feeding by bottle. She clearly won't be graduating from the NG tube any time soon at this rate.

Because the NG tube was always a short-term plan, and never intended for long-term use, it means we really need a plan B at this point. So far it looks like that'll have to be a gastric (G) tube, which means surgery to implant one. We have spent what seems like every conscious moment over the last couple weeks agonizing over this decision, talking to all of our doctors and therapists numerous times, changing our minds just as many times, and canceling surgery dates as well. But the bottom line is, she needs a G-tube, we are sure of that now. Of course we still hope that at some point she will be able to take all of her bottles, and if so then the G-tube can come out. If she never masters a bottle, that's ok too - it is after all a skill that she will eventually outgrow the need for. The important thing is that eventually she is able to, and has a desire, to eat solids and drink from a cup. We need to be sure that what we're doing for her in the short term (like trying to stay with the NG tube for a longer time) isn't sabotaging that long-term goal.

So now Eliza is on the surgery schedule for this coming Tuesday. If we don't freak out and change our minds yet again, she'll get her G tube placed and will probably need to stay in the hospital through the end of the week while she recovers, starts to heal, and gets her digestive system ramped back up. She'll keep the full G-tube, which will be fairly bulky, for at least six weeks or so while her body heals around it, then we'll have the option to replace it with a low-profile "button" that will be less bulky and easier to hide under her clothes when not in use.