A year ago today marks the first time Talynn got a NG Tube (Feeding Tube in the nose). A year ago I was scared, didn’t like the idea, hesitant, and any other afraid feelings you can think of. But what my husband and I did not realize was this was the way our child was going to survive. She had lost 6oz in 4 days and was dehydrated. She could not eat her total volume by mouth and she was also silently aspirating some of her food. We had many mixed feelings especially since her tube was the kind that covered either the right or left side of her face with tape. Once she got this tube it wasn’t even a month later that Talynn was rolling over, more alert, and happy! It made me realize that this was something that she needed and I should had pushed for it sooner.
In December 2014, Talynn got a G Tube (Feeding Tube in the stomach). This was also a hard decision to make because it seemed to be more permanent. But what we did not realize is that if one day she is able to eat all of her nutrients by mouth then we can just take it out and the hole will close up. All I have wanted was my child to be as close to “normal” as she can so YES I would love for my child to eat by mouth but lets take in consideration these things…
… Talynn has the chance of aspirating her food which can lead to pneumonia and that happens to be the leading cause of death (respiratory infections) for Bohring-Opitz Syndrome Children.
… Talynn has hypotonia. This means that she is very LOW tone. She doesn’t have the muscle tone that a typical 19 month old has. It is much harder for her to hold her head, use her hands, her feet, etc so what makes us think that her mouth muscles are any more advance?
…Eating should be something we enjoy. For Talynn it is something that makes her extremely tired after less than an ounce of feeding. We continue to work with her with feeding but we know that in God’s time it will come.
… Talynn is getting fed. She is growing. She is developing. So isn’t it okay that she is tube fed if that is what works for her.
The reason I post these things is because I am constantly asked the question “Will she have the tube for the rest of her life?” and I can’t honestly answer that question but if this is what works for now does it really matter? Now that doesn’t mean that we do not try. I am the first to let you know that you are to push Talynn so she can become the best she can be. We do not disable her by not trying. We are here to encourage and help her.
Ultimately, what matters to me is that she is happy, healthy, and here with us; the rest of it is small things that we have learned really don’t matter. Yes, those small things still break my heart (and I cry as I write this) because I just want my Little Girl to be able to eat her food and make a mess, say MaMa or DaDa, tell us when something is wrong, walk around and destroy our house with all of her toys but I constantly have to remind myself that God has a plan for Talynn and each and every one of us. Rather we know that plan now or we figure it out later down the road we have to trust that God’s Plan is the right one and that he will bless us no matter what.
So for all the moms out there who are struggling with trying to have a “normal” life know that your life is normal maybe not how everyone’s is but how God planned for it to be. For those whose child can’t eat or walk or talk be thankful because there are some parents whose children are no longer here with them (yes I know it is hard but God has a plan). For those who get upset when you see another mother feeding their little one know that you are still feeding yours and your little one is thankful and happy no matter which way their belly gets full. This is what we all need to remind ourselves to do:
Trust in the LORD with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.
Proverbs 3:5-6 NLT
Mommy of BOS ❤