First of all there are literally thousands of reasons that a child might be receiving tube feedings, there are several different types of tubes, and several different types of feedings that children can get. I only know what we have experienced with Anna, which is an NG tube (nasogastric...which means the tube goes from her nose to her stomach) to receive overnight supplemental feedings (meaning she does eat by mouth during the day), with a premade formula called Peptamen Jr. 1.5 (this is simply a very high calorie dairy based formula).
Since Anna had surgery in October she has no major physical reasons for not eating enough to grow. She has some minor reflux issues and motility issues, meaning her stomach works slower than ideal. She takes medication to assist with these two issues. So the bulk of Anna's problem now is behavioral. We have no idea what she felt when she ate for the first year of her life before her annular pancreas was corrected. And then she went two weeks during her surgery recovery not able to take anything by mouth. So, now she is left with aversions to food and eating and other behavioral issues around food (I apologize to anyone who has ever had a meal with her!). Because of all of this she is unable to take in, by mouth, enough food to sustain herself.
Being small, or a low weight alone is not that big of an issue. This is a big misconception and something I hear all the time. People are constantly telling me about their child or grandchild and how they only weighed this much at this or that age. The issue is if your child is unable to maintain a growth curve. If they are consistently losing ground on their curve and/or completely falling off of their curve. This is what was happening to Anna. She steadily and ever more sharply was losing any measurable curve on the growth chart.Some of the common questions we are asked:How often does her tube have to be changed and does she ever pull it out?
Technically the tube can be used for 4 weeks. We have never made it that long for various reasons (puking...she has puked up the tube, it has accidentally been pulled out, the valves that connect the tube to her feeding pump have gotten loose and leaked or blown). And she is very good about the tube. She never messes with it.
Is she being fed all the time?
No, she is fed with her tube just overnight while she is sleeping with the use of a pump that she is hooked up to. She is currently getting about 35mls of formula an hour for 10hrs a night.
When you replace the tube how do you know that you got it in her stomach?Before you insert the tube you measure it against her body to get an approximate measurement for the distance from her nose to her stomach. Once you have inserted the tube you use a syringe and pull out some fluid through the tube and test the fluid on pH paper. As long as it is in a certain range of acidity you are in the stomach and not in the lungs. Also they give you signs to look for. Obviously there would be a lot of coughing etc if it was in the lungs. We test her pH before anytime we use her tube.
How long will Anna have her feeding tube?We are not totally sure just yet. Right now she needs to reach a certain percentage of her "Ideal Body Weight" so that she will qualify for an intensive 4 week feeding therapy program at the children's hospital. The therapy will be every day for 4weeks and the goal is to retrain her to accept food. After that she will receive regular (monthly) behavioral therapy. She will have the tube throughout her therapy. She will not be weaned from the tube until she is eating enough to maintain/sustain her own weight. Her doctors estimate that it will be at least a year with the tube. We are hoping she will weigh enough to qualify for feeding therapy by early summer. She has gained about two pounds since Christmas so we are getting closer!
And the most important thing to remember about Annabella is that she is JUST LIKE any other 18M old. She is lively, vibrant, mischievous, adorable, gorgeous, smart, silly, sweet, and healthy. The only difference is she needs some help eating.
6 comments:
Oh I just learned so much! I had no idea you tested fluid to know where the tube was, but it makes perfect sense. And, I'm so happy to hear she's already up two pounds! Thank you for this post.
The point about maintaining a growth curve is key. This is the only thing that saved my son from the label of "failure to thrive". He never made it above the 5th percentile until he was 2.5. And he actually did drop his curve around 10 months, when he fell from the 3rd percentile to the 1st. But they luckily didn't label him FTT because they said it was common to drop at that age due to increasing mobility. (I still think, though, that if he had been a breastfed baby, they would have freaked out at his size and encouraged me to supplement).
You know what I like best about this? Somewhere behind it all there must be frustration and fear, and what you focus on is facts and the future. You're working with reality, and although it's not what you expected, you've accepted it. Thanks for the great example of courage.
Claire,
Ben has always been at the bottom there as well. As a friend of mine says, "Someone has to be at the bottom of the chart!" And it is true. Some kids are simply small and some are simply big and there is nothing wrong with that. I always get a chuckle out of the fact that my 3yr old weighs what my 1yr old "should" weigh!
Julia,
Thank you again for the sweet encouragement! I truly appreciate it. And I am sure you understand what accepting a "new reality" is like. Anna's tube and all that goes with it has become routine. And I am thankful for that!
Thanks for the neat blog post! I found it most fascinating to read about how you know if the tube is in her stomach or lungs. Wow, you parents have had to learn to be brave to do this stuff! I will be so interested to hear about "food camp" when Anna qualifies.
Jamie - This was a great blog post - so informative. I am glad you cleared up a lot of thoughts and questions.
Soon this will all be behind you - and you will wonder where the time went!
Always believe in the power of prayer.
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