There are long-term consequences to malnutrition. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need.
For my girls the situation boils down to that without their feeding tubes they would not get enough food to live. Both of them started life out nursing and then when they didn't have enough energy to nurse we added bottles for easy calories but still for both of them they could not get in the amount of food they need to live. We tried some crazy feeding schedules with both of them (for a while with Lydia we were trying to feed her every hour) but eating takes too much energy for them.
On top of it you add the aspiration issue. I lost track of the amount of times Jillian has had aspiration pneumonia and you could tell by the way Lydia's lungs sounded she was headed into that as well when we put her NPO (NPO means she eats nothing by mouth). Jillian has turned blue before from aspirating. It was very scary.
So without their tubes the reality is that they would be malnourished and have constant lung infections and they would be drowning in their own food.
So we are so grateful for their tubes because they are able to eat in the way that is safest for them. They are able to get the food in that they need to fuel their bodies and it protects their lungs.
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| This is a picture from Jillian's first time at Children's. This picture was exactly 4 years ago today, while Jilli has struggled since the day she was born this is the day that we began the quest to figure out what was causing it all. That first 24hours in the hospital was scary. They thought she had a brain tumor but the tests came back fine for that. She screamed in pain and by the looks on the dr face I could tell they were worried. That was the trip that when we were being discharged the dr look at me and said she was really grateful that we were able to take our baby back home because she didn't think that was happening. Looking at this picture stirs up a lot of memories and honestly pain, but now I am able to look at this picture and see how far our little girl has come. Right now she is sitting on the floor doing math puzzles. |
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| This is Lydia's first hospital admission picture. She too was so frail. The second time around I knew more of how to handle things and how to fight for what she needed. At the same time there is something to be said for ignorance being bliss because I knew what a fight it was going to be, but a fight I do every day for my girls. |
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| My girls now. My kind, loving, cuddly, sweet girls! |
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| Happy Feeding Tube Awareness week from 4 tubies! Nate and Caroline each have different reasons for their need for a tube but I am so grateful for each of these children's feeding tubes because they make it so that each one of them can be kids and play together and be silly! These four have such a strong bond with each other and they understand it other in ways the rest of us can't. They are a group of amazing sweet kids and I am blessed to know each of them. (Jilli would also like to note that this picture is missing her other favorite tubie Jake, she keeps looking at it and saying those are my tubies but it is missing Jake) |
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