It wasn’t on my Top Ten list

You know, some nights I check in on fellow heart parents’ pages and see how others are faring in the world of CHDs. Some are inpatient, others are interstage and trying to figure out what’s next, and others are dealing with feeding issues similar to what we had. Isabelle is continuing with the vomiting and I plan on making various phone calls. The GI said that she was ‘okay with one to two episodes a day’ but I am not. I am not okay with her eyes rolling back, her face becoming very flushed, and feeling her little body heave against my shoulder. I am not okay with a lot of things this CHD has given us and sometimes when I read about other peoples’ journeys, I find myself getting upset.

I would love to be the righteous person and say how happy I am that there are families out there who were successful in avoiding the feeding tube route. If I did say that I would be lying. Truth is, I am not happy. I am not happy that we are still, STILL dealing with issues after the Glenn. I am angry when I see how these people were able to get their kid to eat when I struggled in tears desperate for her to take the bottle. I tried three different types of nipples, bottles and the breast but nothing worked. Eventually we had to get the tube because she wasn’t gaining and there was a real concern about dehydration.

It wasn’t my fault. Just like her having this condition wasn’t my fault. If I see another advertisement on Facebook for a class action suit against a pharmaceutical company for causing her defect, I am going to lose it. I didn’t ask for this- getting a feeding tube wasn’t on my agenda. I wanted to breastfeed, remember? I wanted to give her a chance to be as normal as possible and was denied because of this crazy, stupid heart disease. 

Tonight I saw another post about feeding issues and once again, I see a lot of negativity about placing a tube. It makes me feel like I didn’t do enough to get her to eat on her own. Believe me, if we could have avoided  it, I would be a very happy person. I am not crazy about the looks she gets from people when they see the tube coming out the side of her clothes. I don’t like that very few people know how to run the pump in our family. I am not crazy that my living room looks like a medical supply closet. 

I know there isn’t anyone out there who thinks that I am a bad mom. But I do know human nature and I know how some people think. They may not post these thoughts, but I am sure there are people out there making judgements on whether I tried hard enough. Especially when I see posts like “My son drinks whatever ounces a day and didn’t need a feeding tube because HE ROCKS.” 

Well I guess we can’t all be rockstars, but I think Izzie is one because she didn’t have a lot of the complications that I see others have. Would I post that on a page full of people who are still in the hospital struggling, whose children didnt fare as well? It just pisses me off when I see so much crap about feeding tubes.  Listen, I did everything I could- EVERYTHING- and it still wasn’t enough. I am reminded every time I have to hook her up, every time she gags, every time her little body involuntarily presses against my shoulder.