eekk everyone has germs!


August 2016


Katie has never played or seen bubbles before and I wasn’t sure what her reaction would be. I thought maybe she would be scared of them but she delighted us all by absolutely finding them hilarious! This is what keeps me going and keeps me upbeat everyday! This little girl is just pure joy.


Friendships sometimes have expiration dates…..

Maybe it’s just me or maybe it’s how I was raised, moving from place to place and being in 13 different schools before graduating, but I have a hard time making and keeping friends. They all have expiration dates. The only friend I don’t feel that way about is someone I’ve had the pleasure of knowing for over 20 years. Somehow through all the moves and distant we’ve been able to always be there for each other and I am thankful for that.

Being isolated as I am, with a toddler on a ventilator (which she’s really really close to being off of it full time), I have lost more friends and gained a few but no one I can really connect with yet. When she was in the NICU there were so many people that swore up and down they would be there for us but by the time she came home that quickly and distressingly changed. Since I’m a stay at home mom and Katie still have to be in germ free areas, I barely get out and see anyone. Yes I see all her doctors, therapists, and nurses but it’s not the same. I don’t see my friends very often unless I go to them and most of the time it’s damn near impossible to get a hold of them. It makes it really hard for me to cope sometimes because I’ll be honest I feel lonely. My husband can only amuse me so much and he’s wrapped up in his own stuff which I imagine will take him a long time to come back to himself, so even when we are in the same room I’m still alone. I know with time he will get better and we can actually be like a normal couple again but for the time being it’s just me and Katie.

I wish most of my friends didn’t live so far away or were able to answer their phones when I call because sometimes I feel like if I don’t talk to someone I’m going to lose my mind. I think that’s the main reason I started blogging. I could no longer stand just talking to myself in my head. At least I don’t answer back yet so that’s a plus. But to get to the point of this post is this: it kills me inside to know that I have little to no one to depend upon and that I have to do all the work to maintain any relationships I have and I’m sick and tired of it. I’m angry and frustrated because at one point I was positive I would have the mental support to get through this hellish ride I’ve been on for almost two years and to find out that I was wrong is just devastating. I’m not sure how to end this post so I’ll just say this, I’m not looking for pity or anything of the sort, I just needed to get this out before I just start screaming. Sorry to leave on an unhappy note but the good thing is the next one will be full of pictures of Katie playing with bubbles for the first time. So I may be disappointed with the people in my life but at least today for the most part has been a lovely day and what more could I possibly ask for.

Poetry I haven’t written in a long time so I am totally rusty.

When they lay me down to rest

I hope and pray

They know I’ve done my best

May my soul be clean and pure

With no regrets

May my daughter know me well

Know I am with her always

As long as time can tell

When they lay me down to rest

I hope they know I tried my best

May my heart be filled with joy

May my husband go on strong

And continue to carry on

When they lay me down to rest

I know that I have done my best

So I will leave this world

With scars on my body that show my tests

And with a loving life ready to rest

Sometimes I just don’t want to do this

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!

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