Tubie Troubles

When dealing with a sick baby, there are going to be highs and lows, good days and bad, and ups and downs.

We're currently dealing with more of a "down" situation in regards to Helena's eating. Her heart is fine, her cardiologist said she's doing well, but we're having some feeding issues.

Helena was on the NG tube, and we were doing great in increasing her oral feedings. She was taking almost half her feedings by mouth and doing well with it. Then reflux hit. She had all the classic, horrible reflux symptoms - gagging, coughing, spitting up, crying when we tried to orally feed and refusing the bottle. Since she needs to gain weight (her shunt is technically too big for her - they put it in assuming she'd grow into it so she needs to grow into it!), we just sort of stopped pressing the oral feeds rather than torture her (we knew it hurt her to eat by mouth) and did pretty much all NG feedings while we figured out new meds and a new formula (she's now on Nutramigen).

The reflux seems to be getting better, but Helena is still refusing any oral feedings. She's still gaining weight because we're using the NG tube, but she really needs to learn how to eat by mouth again.

We're working on it, but it's hard because she does still cough and gag when we try to use the bottle and it's so hard seeing that happen to her. I know it's awful for her too, but I also know she needs to wean off the NG tube and the longer we let her do just NG feedings the harder it will be.

We'd really rather tackle the issue ourselves after having a terrible experience with the speech therapist in the hospital. She only saw Helena three times and was dictating how she would eat. She claimed that Helena wouldn't/couldn't eat orally but that was because Helena was asleep when this chick showed up. This chick woke her up and then tried to immediately make her eat from a bottle. Of course Helena refused! This chick then assumed that meant that she couldn't do it, and recommended we only try feeding tiny amounts by mouth. How the hell do you make recommendations for a patient you've only seen three times (while we were there a month, it's not like she didn't have ample opportunities to come by) and are attempting to feed in a not normal situation? She also never called us back, and when I requested she come see us during one of our sleepovers she didn't. Her tips and tricks seemed useless and overall it was just a terrible experience.

The problem is that because Helena really needs to gain weight, we need to make sure she's getting all her calories in each day so we HAVE to use the NG tube to feed her. Well, the NG tube runs down her nose and throat and into her tummy. It keeps the pathway open for the stomach acid to gurgle up from the reflux. The NG makes the reflux worse, but we can't take the NG tube out because she won't eat without it because of the reflux. We're stuck in a horrible reflux-y cycle.

I plan on reaching out to some of her nurses for tips, but it's frustrating and hard. It sucks to see her suffer through her feedings, and not sleep well knowing she's in pain.

So we're in a valley right now. It's hard, and it sucks but we'll work through it. We have a great team of medical professionals helping us, and I am confident we'll get her eating by mouth again, it might just take some time.