10 years off my life

so i was having an average day. Isabella was doing her spelling test while i did an oral feed with Em. normal enough. Em did great tasting her bananas and i picked her up to go hook her up to the feeding pump. that is when it happened.

first of all, for those of you who don't know. em's g-tube is a hole that goes through her side and then through a hole in her stomach. there is a round valve on the outside that is held in place on the inside by a balloon filled with water or air. from there, a cord called an extension hooks the
g-tube up to the feeding pump. Em eats frequently so we leave this cord attached to the g-tube all the time because it is uncomfortable to take on and off.

i picked Em up as i was standing. i didn't realize that her cord was stuck in a crack of the high chair. i have accidentally pulled on the extension before. it really hurts her so i got really upset when i realized i had done it again. i yelled and took her over to the living room to change her out of her banana clothes. whenever i pull the extension i always put my hand on her stomach to make sure the g-tube is still there. when i did it this time i felt nothing. i felt some more, wondering if the gauze was to thick to feel it. i pulled her onesie up and all remember seeing was blood. i froze. it took me a second to register what had happened. then i saw the g-tube . it was laying on the floor with her onesie. a million thoughts popped into my head most of which are to graphic to post here. at one point though i actually thought "Megan this isn't so serious. everyone will laugh at you and say you didn't even need to go to the Dr." after considering this for a minute i decided that it was indeed a big deal and if anyone tried to tell me it wasn't they would get very very hurt! the balloon of water was still full which meant i had pulled something the size of a gumball through a hole the size of a nail head. at this point i almost threw up.

since the balloon was still filled with fluid i couldn't put it back in. i scrambled around and found a syringe. i fumbled and got the water our of the balloon. the thought of sticking anything through a hole in some one's side petrified me, much less my helpless baby, so i tried to just put it in before i thought about it to much. it didn't go in very easily so i had to twist it a bit. this just made Em scream even more. i got it in on the second try.

somewhere is the middle of everything i was apparently giving Isa instructions. she turned up with Aunt Terra and her shoes and socks on. Terra was great and held a clean burp cloth over the newly inserted g-tube because i was sure it was still gushing blood (it wasn't). i then took a few deep breaths because i realized i hadn't in awhile. em was no longer screaming. just whimpering. i gave her a chewy and she calmed down a bit more.

i then called the doctor and the emergency room. ER wouldn't give any info and wouldn't even tell me if i should brig her directly there or her Dr first. the whole Dr office was at lunch and not answering the phone so we taped down the g-tube and piled in the car to meet them at the door after lunch. Terra in the mean time had called her brother in law Jim. YAY for Jim. he just finished nursing school and is a pediatric nurse. he was great at being thorough with his questions as well as keeping us calm. i owe him a present!

i walked into the Dr office and didn't even finish my sentence of " my daughter has a g-tube and i accidentally pulled it out and the ER..............." before the nurse was taking me through the door. the Dr was in our room with in 30 seconds. we are friends and he could see that i was very frazzled. he was great as always and told me i did a great job. as stupid as it sounds that made me feel a ton better. Em was smiling at him happy as could be. until he had to take the tape off. apparently i went a little over board. in the process of examining her the g-tube cam out again since i hadn't re-filled the balloon. i totally freaked out but it ended up being a good thing because they were able to clean the little bit of blood that had come out off her stomach. ( i could have sworn there was more). she cried a bit when he put it back in but then calmed right down. she actually cried longer when she got her shots.

all in all she was cleaned up good as new. so far i can't tell anything even happened to her. she is happy smiling and using her abs just fine. poor Isabella got really scared during the whole thing. understandably so since i was freaking out and her sister was bleeding but we worked it out. i am able to keep a good eye on her emotionally since this all started. The doctor was saying how much easier it will be next time. i almost threw up again when he said that.

josh thinks it is to hard to picture what the g-tube looks like so here are some pictures. sorry they are tiny. i just couldn't bring myself to sift through all those pictures of different kinds of g-tubes pre and post surgery. not today.

this is what it looks like on Em on the outside (obviously).

this is the whole thing with the balloon inflated. that is what i found on the floor in her onesie.


A Scary Glimpse

as the time grows near that we are "cleared" to leave the house i have mixed feelings. it has been really inconvenient to be stuck at home all the time. i have only been to church like three times in the last 8 months. i can't hang out with friends and poor Isa is/has gone crazy. i can't go to the grocery store even if i wanted to. i can't pick up medicine. My only "friends" are doctors and therapists.

most people who know me are aware of my anxiety and desire to become a hermit. so in some ways this has been a dream come true. i not only got to stay inside away from everyone but the doctor said i had to. now, i know it isn't healthy to become a hermit and i usually have some things i make myself do to maintain a small desire to go out and be with people. the problem is that all those things involved actually going out. which i wasn't able to do. so i pretty much lost my drive to maintain any semblance of normality.

i think one of my huge fears is that i will have worked so hard to keep Em healthy all winter and then she will get crazy sick the first time we go out. or that everyone will think it doesn't still matter to try and keep her germ free and assume that the cold they are "getting over" wont harm her. i also fear the fact that so many people haven't been able to see her that there will be a flood of "me next" and "my turn" or "you really should". i can barley deal with parading/passing around of my kids normally but now all i want to push people down and run. why would they think they have any rights to my children?

it is weird how animalistic i feel about the whole thing. my very heart feels bruised, battered, beaten and broken. this had caused me to go into "protect my offspring" mode. this mode can be annoying, disruptive and unacceptable to some. the good thing about this mode however is that i no longer care about the passive aggressive guilt trips layed by so may. the bad part is that i just no longer care. so when a situation arises that needs real consideration i just ignore it or become hostile. i know, not so pleasant.

Maybe this should have been a journal entry? oh well.

a lot of people have told me "don't worry, Em is so little she wont remember any of this" and while i am grateful for that the problem is this. i don't want to remember it either! it is all i think about. when i am not thinking about what she needs right now to keep her out of the hospital i just can't seem to get the day they moved her into the PICU and she had every tube you can think of attached to her out of my head. or the day she turned blue during her hearing test. or the day i sat sobbing the the O. R. waiting area while they maimed my daughter's stomach forever.

when i was younger i would have horrible nightmares almost every night. it got the point that i would stay up all night for fear of falling asleep and entering the terrible worlds my brain would create. i actually live in one of those worlds now . it never ends. At least i knew when the night would end. i actually long for those nightmares now.