Feeding Tube?

Mark and I are wrestling with whether or not to give Ruby a feeding tube.  Her eating has been an issue since we brought her home when she was five months old.  The muscles she needs to use to eat are weak so she has little control over anything that is placed in her mouth.  Although she has stayed healthy, swallow studies continue to show silent aspiration or penetration, which means liquid has the potential to be inhaled into her lungs.

We have done several rounds of feeding therapy with her over the last couple of years. There was a time when we had to lay her on her side and give her a bottle a sip at a time. We have thickened all her liquids, tried several bottle nipples and different cups, work with therapists to strengthen her jaw and encourage her tongue to move around more.  I have spent hours with her in outpatient therapy at Mary Free Bed trying to get her to close her lips around a spoon or a straw or chew Cheetos through netting (so she wouldn't choke on the pieces).

Last spring, during feeding therapy, we finally did get Ruby to drink out of a sippy cup. I was so excited that I cried! It seemed like we were finally getting somewhere.  Over the summer she seemed to be doing well; we experimented with "chunky" purees and small bites of peanut butter and jelly sandwiches. Feeding her still took forever, but I thought she was holding her own.

In December, Ruby had another swallow study. I requested it; I thought she was doing so well and I wanted to prove that she could tolerate thinner liquids.  To my surprise, the swallow study showed that she silently aspirated on almost everything we gave her.  The therapist recommended we go back to giving her smooth purees and thicken her milk even more. I felt defeated.

We now thicken her milk to the consistency of a thick milk shake (honey plus for you special needs moms who use Simply Thick). It is so thick sometimes she has a hard time sucking out of her sippy cup. We puree casseroles for her and I am constantly looking for recipes that she might like. She doesn't seem to enjoy eating and a meals take about 45 minutes. Her meds taste horrible and it can be tough to get her to swallow them.

Monday I met with the Neuro-Development Pediatrician who oversees Ruby's care.  She discussed the possibility of a giving Ruby a feeding tube.  She did not push AT ALL which I appreciated and she said Ruby's case is not an easy decision. On the one hand, Ruby is staying healthy and her weight is fine (50th percentile!) On the other hand, since she is silently aspirating she has the potential to get really sick very quickly, she is not getting enough liquids and meals take so long.

We are leaning towards moving forward with the feeding tube, yet a part of me is really struggling with whether this is the right decision.  It would make meal times enjoyable; we could feed Ruby a few bites of something she likes and then give her the rest of her nutrition through the tube. We would have to fight her to eat or to swallow her meds.  We would have more time for therapy or play with her and with our other kids. It would also be easier to teach someone else to feed her with the tube; now feeding her is more of an art than a science.  Maybe she would be less lethargic and tired if she was always getting all the hydration she needs.

That being said, I am still struggling with this decision. I have spent so much of the past three years fighting for Ruby to eat;  it feels like giving her a feeding tube is throwing in the towel.  Right now she is "tube free" and I always felt glad that she could eat because she doesn't have a lot of other skills. Getting a feeding tube makes her condition seem so much worse.

We are praying for clarity and wisdom......I hate these tough decisions.