Trials, tubes and tribulations

When Stella began to stop eating, so did I. Not intentionally, mind you. I just couldn’t. My appetite had left the building. Anxiety made it impossible to keep food down. I had to use juice, and the mantra “For Stella!”, to swallow anything. Besides, with dairy out of the picture, my go-to comfort foods were literally off the table. Stella and I were on disasterous parallel paths. As her weight gain slowed down, my weight plummeted. I wasn’t eating, and with all the pumping, I was burning hundreds and hundreds of extra calories. My lips were cracked and bloody and my skin rebelled. Of course, my declining health did not bode well for Stella. As one doctor put it, we are “a unit.” I needed to be strong and healthy for her and me.

So, on mornings like today when there is one tube-related fiasco after another, I think back to the days before the tube, and how terrified and helpless I was in the face of her eating refusal. At least now, with the tube, we can be sure that she is getting the nutrition she needs to thrive. Another important benefit  of the tube is that it takes the fight out of bottle feeding. As our occupational therapist explained, Stella has been trying to tell us something. And she felt like she wasn’t being heard. Despite her protests, we kept trying to feed her. We had to. But it was leading nowhere. The more we fought with her, the less she wanted to eat. With the tube, we can offer the bottle with less pressure and stress. We can allow her to eat comfortably for as long or as little as she wants, without having to force the issue. Each positive experience teaches her that eating is enjoyable. On our fridge, I’ve posted a quote by our occupational therapist: “If eating is fun, the volume will come.”

As I’ve explained, except for a couple feedings at night which we administer by pump while Stella is asleep, we always offer Stella a bottle before resorting to the NG tube. What exactly is involved with tube feeding? Before any formula can be delivered in the tube, we must check the tube’s location–to make sure that it is indeed in her tummy and not in a lung or otherwise out of place (scary, I know). We do this by attaching a small syringe to the end of the tube and squirting a cc or two of air into the tube while listening to Stella’s tummy with a stethascope. When we hear the whoosh of air, we know we’re clear. We pull the air back out into the syringe to help minimize gas. Stomach contents (watery-looking formula) usually come back out with it–while unsavory, this is actually okay and just another way to confirm that the tube is in the right place.

After confirming placement, we use the pump or “gravity” to provide Stella with the remainder of her feeding. The gravity method simply involves attaching a fat 60-ml syringe to the end of her tube, filling it with the formula and holding up the syringe as it slowly flows down the tube. Holding it up higher makes the formula flow faster, and holding it lower slows down the flow.

We usually choose the gravity method when Stella takes at least half of her bottle. When there is more than half of a feeding left, we go with the pump, and there’s more legwork involved. We have to fill a feeding bag (which unfortunately makes it sound like we are taking care of livestock and not a precious baby girl) with formula, “prime” the bag and its attached tubing to eliminate all air, hook up the bag’s tubing loop to the pump, program the pump so that the rate of flow and dosage are set, connect the bag’s tube to Stella’s tube, then hit “run” on the pump. It’s imperative that we stay with Stella during the pumping, for safety reasons. When a pump or gravity feeding is finished, we then flush Stella’s NG tube with a couple cc’s of water to keep it clear and clean. From start to finish, a feeding takes 45 minutes. We do this seven or eight times a day.

We had a tough morning today, and the tube felt like our enemy. Stella took only 5 mls from her first bottle. The pump malfunctioned twice, so she didn’t get her full amount of formula at two feedings. A feeding bag leaked all over the place. Stella threw up. And worst of all, Stella sneezed out her NG tube.

This means that I had to put a new tube back in. Frankly, this is something that no parent should have to do to their child. But I do it, because it’s less traumatic and disruptive than taking her to the emergency room where we wait around in a room full of sick kids until a strange person in a not-so-cozy environment shoves a tube into her nose as Stella lies on a flat hard bed under harsh hospital lights.

I wait until Stella is asleep. I measure and mark the tube so that it will sit right at the base of her sternum at the entrance to her little tummy. I dip the end of the new tube in both lubricating gel and water to make it extra slippery. I tear off pieces of pink medical tape and have them at the ready, for securing the tube to her chubby cheek as soon as  the tube is in. I take a few deep breaths, try not to cry, and do one of the hardest things I’ve ever had to do.

She wakes up a second or two after I begin inserting the tube, but I have a few more seconds before she realizes what’s going on. Then she starts crying. Really, really crying. I give her a pacifier, which calms her and helps the tube go down due to the swallowing action. Within seconds, the tube is in, and I can simply hold, rock and comfort my sweet Stella Bella. She only cries for a couple of minutes before, amazingly, I get a smile. I tell her that she is so strong. That she and I will get through this and be just fine. That I love her more than words can say. And that I could not be more proud to be her mom.

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About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in The tube and tagged , , , . Bookmark the permalink.

4 Responses to Trials, tubes and tribulations

  1. frankie's mom says:

    thank you for your story. we are in the same situation, just had ng tube installed last week because frankie (7 mo baby boy w/ gerd ) refused to eat. we were very sad at the begining, felt like we’ve failed as parents. but now, we are so relieved knowing that he will get the full bottle no matter what. no more trying to get him to sleep and feed him in the closet, no more crying and pulling out hair.

    just wanted to say hi. hope stella gets bettter soon and so will frankie. take care.

    • Tiffany says:

      I Just came across this blog and feel I can totally relate to everything Amber is feeling. My little boy Has been having issues gagging with the bottle, then refusing the bottle and reflux. He seems to be in pain when he swallows. We still don’t know exactly what is causing all this . He was recently hospitalized and they placed an NG tube in. I would love to hear how Frankie ended up doing?

  2. amberhj says:

    I’m sorry you are going through this also! Hang in there. Frankie and Stella can do it! Thanks for stopping by our blog. Sounds like you had the same feelings about the tube as we did (and still do but to a lesser degree). Stay in touch. I’d love to hear how Frankie progresses.

  3. Lesley G says:

    Hi, just wanted to say I have just very recently came across your blog and that I am so pleased to have found it! Our 3 month old baby has very recently got a tube. I have so many mixed emotions about it and it is really helping to be able to read your experiences, I can relate a lot to what you say. The fact that you manged to wean Stella from the tube is inspirational to me. I hope we will be able to do the same with our little one!

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