There are long-term consequences to malnutrition and being undernourished. 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 to live.
Both girls were tiny before their feeding tubes and loosing weight. Jilli was 3 months old when she got her NG tube and was vomiting all of the time. My "on this day" on Facebook today was a post about how Jilli at a few weeks old had vomited some much that day she had gone through 4 outfits. Lydia was three weeks old when she got her first tube because she kept loosing weight even on a crazy feeding schedule.
Lack of food effects brain growth and when kids are really young, that is when so much brain growth happens, so it is very important to step in quickly.
The reality is that without the girls tubes they would not be alive. This lungs would always be full of fluid and their bodies would not get the nutrition they need to grow and that would effect their brain. I am fully aware that if my children were born in a different time period or in a different part of the world they likely would not be alive right now and the weight of that hits my heart deep and I cry for other mommas around the world. When the hospital in Syria was bombed I cried for days, heartbroken, knowing if we lived there that could have been our kids, we are just lucky we were born where we were, but it was not the choice of those children to be born there. This is why I am so passionate about fighting for better healthcare in our country and improved healthcare around the world.
I am so thankful for the girls tubes because it gives me more time with them. It gives me snuggles, and giggles. I am thankful for the person who invented feeding tubes, I am thankful for the companies that make them, and our doctors who put them in and manage them. The weight of all of that is not lost on me, and my perspectives on life and living for today have changed a lot in the past 5 years.
Our girls are fed Elecare Jr. through their tube. It is an amaino acid based formula. It is broken down making it easier for their body to digest and is free of milk since both girls struggled when I had dairy when they were on breast milk. Yes both girls were breast fed and it failed for both of them. Jilli got breast milk in her tube until she was 1 year and Lydia got breast milk in her tube for 5 weeks. I often see critisum of parents of kids with tubes that they should have just breast fed, but the reality is that for these kids there are medical reasons why that is not safe either. Some kids get breast milk in their tubes and some kids need formula to survive. Some kids even get blended up food in their tube, although at this point that is not something that will work for the girl, so we are thankful for the formula that helps them to grow.
Some people see feeding tubes as a curse... I see them as a huge blessing!
Are you interested in helping children around the world with medical and nutrition needs? World Vision is a company we have worked with many times and they do great work at helping people around the globe with hunger related needs. To learn more about them click HERE
Are you interested in helping with advocacy work here in the US to help work to fix the issues in our healthcare system. Little Lobbyists is a group of parents who work hard to fight for all children. They are not partisan. This is not a big money pack, but real parents going to meetings and helping try to find solutions to problems. You can find out more about there HERE
Are you a singer or song writer interested in making kids smile? If you don't have musical talent, are you interested in helping with funding for a really cool project that turns stories of kids going through hard things in life into a song? Sing Me a Story is a Wisconsin based project that is awesome! You can find out more about them HERE
I try most years to make a video of the girls to tell the story of their medical journey. This year I used a different program so it is a little different, but I included a mix of hospital and fun pictures. I made Brent play guess which kid for each picture lol Click HERE to see the video
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