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Swallow: A Documentary

1 May

My sister recently sent me this short documentary about dysphagia which was produced by the National Foundation for Swallowing Disorders. It shares the story of 3 people of various ages who have different reasons for not being able to swallow.

I’ve got to say, I really relate to Elysa, the mother of 3.5 year old Rydr in this video. Hearing her talk about all of the therapy, the work of a feeding tube, the constant concern for swallow safety, and the “why did this happen to me, why did this happen to us” thoughts was like hearing someone read a page out of my diary. Parenting a little one with dysphagia is a tough road to walk, she’s 3 years ahead of me and it’s inspiring to see all of the progress they have made. Kids who have to hit all of the normal developmental milestones, and learn how to do instinctual things like swallowing are seriously tough and amazing.

 

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Feeding My Baby Barium and The Battle of The Bottle

17 Feb

It is fitting that during feeding tube awareness week, TigerOne had his first swallow study.

You see, when he had RSV a few weeks ago an x-ray was done and we discovered that he had a touch of pneumonia. It wasn’t entirely clear if the pneumonia was caused by the virus, or if he had actually inhaled some milk during one of our feeding sessions. So, to be safe oral feeds were put on hold while his lungs recuperated from the pneumonia and we could do a swallow study to see what was up.

By the time the swallow study rolled around this past Monday, TigerOne hadn’t eaten orally for a few weeks. I attempted to give him a few small feeds the two days leading up to the study so that the lab wouldn’t be his first swallow after such a long break. On Monday, I brought TigerOne to the fluoroscopy department of the hospital, where they sat him in a special seat and basically did a real-time x-ray of his mouth and throat. I put on a lead apron and fed him a bottle of chalky white apple flavored modified barium, and then we all watched where the fluid went after he swallowed it.

Scene from early today at #tigerone's swallow study. Sort of fascinating to watch. #MBS #fluoroscopy

Modifed Barium Swallow

Above is a picture of the floroscopy screen, you can see the nipple of the bottle in black on the upper left and his mouth and throat in blue. Once I got past the horror of feeding my baby barium and exposing him to all that radiation, I was actually pretty fascinated by the study. He would take a small sip, and blue drops would trickle down his throat on the screen.

We fed TigerOne two different consistencies of barium, one that emulated milk, and another that had been thickened a little to a nectar consistency, which he was able to manage a little better. The study revealed that none of the fluids are being aspirated when he swallows, which is great. But it also revealed that he isn’t doing a very good job sucking, or managing his swallows. The process of swallowing happens slower for him than it should, and he doesn’t clear all of the fluid from his throat very efficiently.

What all that means is that there is no real end to tube feeding in sight, and that we may have to seriously consider g-tube surgery at some point, because NG tubes are supposed to be for short-term use. Mostly though, it means we just need to keep up the good fight and practice, practice, practice oral feeds.

Tiny bottle for feeding therapy

Tiny Bottle of Frustration

When a baby turns 3 months old, the instinct to suck goes away and sucking becomes a learned skill. So, the fact that TigerOne is 3.5 months old and had a prolonged break from oral feeds is really bad timing. Returning to oral feeds his week has been really frusting for both of us, it been worse than starting from square one because his suck instinct is almost gone. Is there a square negative one? I put the bottle in his mouth and he just looks at me, like “what am I supposed to do with this?” He will bite on the nipple, lick it, smack his lips around it, and do pretty much anything but suck. He will taste a drop of the milk and get extremely frustrated that he can’t get more of it.

This makes me feel frustrated but mostly sad. Sad that there is something missing in his brain that means he doesn’t have the coordination to do something so basic and instinctual. Sad that there isn’t more that I can do to help him learn. We just persevere. I offer him a one ounce bottle of breast milk thickened to nectar consistency 5 times a day, and maybe two of those times I can get him to eat half of it, the other times he refuses the bottle.

Learning to suck isn’t just about eating a bottle. It’s also about conditioning his mouth to one day be able to eat solid foods, and strengthening the muscles that will affect his ability to speak. This skill is the foundation for a lot of things. So, when I sit down with him and try to coax him into sucking, we are working for much more than freedom from the feeding tube. I guess the important thing is that despite the challenges we just keep working through it, that’s all we can do.

Fall seven times, Stand up Eight.

Japanese Proverb

Feeding Tube Awareness Week 2013

10 Feb

Today kicks off Feeding Tube Awareness Week. The day he was born, TigerOne joined half a million people nation wide who, for a variety of reasons, rely on feeding tubes to sustain their lives. I’m indebted to this technology, and grateful for the support network that the Feeding Tube Awareness Foundation has created for people and families on this feeding journey. It can be a messy, scary, lonely road to walk on your own. Here is the 2013 awareness video that the foundation made, TigerOne’s picture is in it at 4:12. He’s in good company with a lot of other strong and amazing tubies.

Dear TigerOne 12/12/12

12 Dec

Dear TigerOne,

Today you are 5 weeks and 5 days old and you drank from a bottle for the first time. You had 17mls of breast milk in physical therapy & you swallowed it all like a champ. Ok, so you may have gotten a little eager once or twice and sputtered a little, but still — I am enormously proud of you. A month ago you could barely suckle a finger and look at you now! Seeing you eat with your mouth lit up a light at the end of this tunnel known as your NG tube. Keep up the fierce progress my sweet boy.
Love,
Mama
drinking