My face when I started typing

Having a preemie is wonderful and terrible at the same time. You have a little one that you are doing your best to get healthy and continue to thrive. They can be such a joy just like every other baby. Full term or otherwise and then there are just days when you want to throw your hands up and say screw this.

Today is kind of one of those days. She’s on the mist collar now for her naps and instead of napping while the thing is on she decided to use it as a hat, which was cute and frustrating at the same time. She happens to hate the collar and is terrified of the air compressor so we have to leave the compressor and the vent in her room and then run a 30 ft tube from her room through the entry way into the living room to her neck. It works but it’s just a pain in the ass because she doesn’t want to nap on it so it’s on her for hours before she’ll go to sleep. Finally she did after 3 hours on the collar she took like a 30 minute nap and didn’t really take a nap until her g-tube feed.

Currently I’m keeping her on her vent during the feeds because she pukes when she’s off the vent. Then she was cool and was out for 2 hours lol. It’s incredibly frustrating, however she kept her entire feed down for her mid day feed. So I feed her at 4:45pm today and she proceeds to vomit all over herself me and the floor and I’m just like dammit. My poor carpet.

This is why we can’t have nice things

Mainly I’m just venting I guess because I really don’t have many people to talk to that will listen instead of interrupting me to tell me how I should do things when none of them have had a kid with a g-tube or know what this life is like. I struggle daily to make sure she gets all her calories in. On days where she pukes I have to replace the calories she lost via g-tube. So oils have become my best friend. Avocado, coconut, peanut, walnut, olive oils almost all of them are 120 calories per 15mls. Thank god for oils! Luckily she keeps gaining because somehow I’m able to fit all her g-tube feeds in plus 2 oral feeds a day. I’m tired and a bit worn down and sometimes I just don’t want to have to do this anymore. Then I look at her and I stop thinking like that.

I look at her and see a thriving, healthy, happy baby that loves to beat the crap out of her toys or strangle her lovie (slightly disturbing btw). I look at the potential she has and how far she’s come and realize that all this stress, all this inner frustration and anger is completely totally 100 percent worth it.

Funny thing is I started off writing this to vent and instead made myself feel better. She’s babbling nonsense while chewing on her fingers and blowing raspberries at Mickey Mouse.

So worth it!