Karlie has been feeding tube dependent her entire life. I was never given the opportunity to breast or bottle feed her because she had a breathing tube in her mouth from day one. Pumping was my only option and with a lot of hard work I was able to build a strong milk supply. Thankfully she was able to get some colostrum in the early days through her feeding tube and tolerated it well. They didn’t want to push her feeds too much until her breathing was under control. She tolerated her feeds for a little while but then unfortunately her body was fighting and working so hard to breathe that she began vomiting. They decided to stop her feeds once she started vomiting stomach bile. That was a clear sign that she was not digesting the milk because her body was putting all its energy towards breathing. Karlie received only IV nutrition for almost 2 months before they attempted feeds again. 2 months of pumping without her consuming any of it meant my freezer stash was huge!

The main reason we were never able to breast or bottle feed Karlie was the risk of aspiration. She required a lot of support from the ventilator so if she were to swallow milk it could be blown into her lungs. That was not a risk anyone was willing to take so an ng tube was the only option. I would have loved to have been able to breastfeed Karlie but it just wasn’t possible. It was upsetting but I did my best to focus on what I could do for her rather than what I couldn’t.

Unfortunately Karlie couldn’t get a g-tube because of her omphalocele. A g-tube is surgically inserted into the abdomen directly into the stomach. Because Karlie’s anatomy was a bit different, they weren’t entirely sure where her stomach was inside her body. Karlie became very skilled at pulling her ng tube out the second you looked away from her. We’ve gotten pretty crafty with tape through trial and error so thankfully it’s been a while since she’s pulled it out herself. Teaching Karlie how to eat has been one of our biggest challenges but we are slowly making progress. Most babies start eating right away and learn to swallow and that’s that. Karlie never got that opportunity so that makes our job even harder.

It’s very common for babies who have been intubated to develop an oral aversion. Having a breathing tube placed into your mouth and throat can’t be a pleasant experience so they often develop a negative association with anything going near their mouth. Thankfully Karlie never developed an oral aversion! We were so afraid of it because she had been intubated for such a long time. We always did our best to make anything oral a positive experience for her. We had to be careful even when offering her a pacifier. Instead of just putting it in her mouth we would offer it to her and see if she wanted it. If she did, we gave it to her and if not we took it away. We were able to give her tastes of milk on a swab, pacifier, or a gloved finger and I believe that helped keep things positive as well. We still have a long ways to go in terms of eating but all we can do is keep trying and take things one day at a time.