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Down Syndrome, VSD, ASD and an NG Tube

Esther was born with Down Syndrome (DS) and a heart defect, two of them actually.  Heart defects are very common in children with DS, as well as feeding issues, so a lot of babies/toddlers/children with DS have G-Tubes to deal with their feeding issues when they do not resolve quickly.

Esther had a large VSD and a small ASD.  She was put on a Nasogastric (NG) Tube when she was just a couple of days old as she was just not strong enough to nurse.  She kept the NG tube for 4 months.  She had to have her heart repaired before she could eat enough by mouth to not need supplementation via the NG Tube.  She was able to go without the NG Tube within 2 weeks of her heart repair!

 

Even though it has been nearly 4 years since she was born, the care and feeding of Esther is still fresh in my memory and my heart goes out to other mothers when I see their child with a feeding tube of any sort.  We used a portable pump that came with a backpack and it was actually quite easy to use, as long as nothing clogged or kinked!  I remember vividly waking up to the alarm of the empty pump bag instead of to a baby crying – it was like living in the Twilight Zone!

I remember being so anxious to get her home, that I started doing all her care as soon as they would let me (she came home when she was 5 weeks old).  Learning to put her tube back in was the biggest challenge, but I was able to do it, and ended up having to do it about once every week.  It wasn’t fun, but as a mom you do what you have to in order to avoid extra trips to the doctors office and you’ll do anything to get your baby home!

Overall, having a baby with a feeding tube wasn’t that complicated, but it did make going away from home more of a challenge, but do-able.  I just had to do more planning and once in a while I had to be creative.

Once on the way to Seattle Children’s Hospital I realized that I had left the pump at home, as well as extra formula. So I had to be creative and use a syringe to slowly feed her over the period of an hour, and ask for some formula at Children’s, which they were able to give to me to get use home and not miss any feedings – not easy when driving, but I was able to take care of her all day in Seattle without any complications.

I do remember that the tube was unusual to most people.  Children especially would ask if she was breathing through the tube.  We got so used to it that we hardly noticed it, but I was glad when she no longer needed it since it was on her face.

Even before Esther was born, I was asked to develop G-Tube Pads in my business, Snap-EZ.  Although I have never had to use one, I have heard from many of my friends/customers that they have made keeping the tube site clean/dry much easier.  I’m glad I can help them out in that small way.

To read more about Esther, go to her blog: Sweet Esther’s Story.

To check out the g-tube pads (and awesome cloth diapers- I used them for my last 6 babies!) check out: Snap-EZ.

And to read more about Ruth’s large family go here: 11blessings.

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