A lady at Target made a snide remark to me about being on my phone and not hearing her when she said excuse me, after I sincerely apologized after realizing I was blocking her way through the aisle. So I said "Fuck you" to her face and then came back after I got off the phone to tell her off for being a bitch. (That's not exactly like me.) And then after I checked out I cried in my car for about 20 minutes because I just feel overwhelmed by everything.
She particularly hit a nerve because you know what, most of my phone conversations are a whole hell of a lot more important than her errands at Target bc I have regular phone conferences with the GI doc, surgeon, nutritionist, pharmacist, nursing co., etc., and those happen when it's convenient for the doctors and nurses, not when it's convenient for me or some bitch at the store. I am so fucking tired of being on the phone and updating the same info to half a dozen different sets of people who don't communicate with each other. Even my home isn't private space anymore because the home health co has decided if I don't return a call within half an hour they can just show up on the doorstep all put out that I didn't answer (my baby was napping on me and it's only 9am, twatwad). I think it's pretty clear that Lucas is my top priority, but I am perfectly in control of his care and I'm fucking sick of multiple healthcare providers taking up all my time so they can cover their asses with unnecessary paperwork and repeat pointless "assessments" that don't actually do jack shit.
Also, we're trying to work out a regular nurse for M-W when I have to be on campus (we have home health nurses for that bc regular daycare won't take him with the IV) but our scheduler is terrible. While we're waiting for them to find a permanent person we never know from day to day if we're going to have a nurse or not, and she has a habit of letting me know someone is coming half an hour *after* they arrive (when I should know at least the night before). So Wednesday she texted me (yes texted, because we're all super professional here) at 8am, when our nurses usually arrive at 8am, to let me know someone was coming for the day but would be late. When it's someone new it's almost more work for me to explain everything to them than to just be home by myself, and I'm not leaving him alone with someone I just met anyway, so I told her we had already left to go somewhere and then hid upstairs while the nurse knocked on the door. Bc I'm done dealing with anybody's shit except Lucas's.
All of this on top of the stress of not having done jack shit toward the dissertation I'm supposed to be writing, bc our home nursing is inconsistent and we keep ending up back in the hospital so I'm pretty much failing at everything that's not Lucas-related (and I feel like I'm failing at a lot of the Lucas-related stuff too, bc there's just no right answer for a lot of the daily judgment calls).
DH assured me that if I've made it this far and am just starting to crack I'm doing pretty damn good. But our health issues aren't going to resolve themselves any time soon, and I can't let myself turn into a bitter old hag before I even hit 30. I'm kind of afraid of where I'm headed.
And on top of all this, since Luke is eating more during the day my good sleeper is waking up irately hungry 3-5x/night, but if we feed him much at all during the night he Lukesuviuses everywhere. His nursery is seriously covered in vomit that I can't see to clean up in the MOTN - walls, curtains, glider, toss pillow, rug, drawers of his dresser, everything has spots of puke on it. His gut just slows up at night and can't empty his stomach fast enough, but he's still getting hungry. So I don't know what to do for him, and I'm exhausted.
I'm not really looking for another round of sympathy from you all - lord knows you've given me enough already. I think I wouldn't know what to say if I were you, so I won't be offended if you don't comment. If anyone has even finished reading this whole thing, bless you. I just needed to get this out. Everyone thinks I'm handling this so well, but in reality I feel like I'm barely hanging on.
FKA mimi4347: diaper rash magician and unofficial expert on excrement


This kid may not have a lot of bowel, but he has plenty of guts!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
Re: I think I'm starting to crack. (A Mimi Meltdown)
And big hugs to everything else!
You were given an awful situation and are dealing with it as best as you can. To me your're doing fantastic (weirdo internet stranger's opinion). Can not imagine being in your shoes.
Please rant more if needed! We're here - use us. I'll be thinking of you guys
Big hugs and t&p's being sent your way!
I feel so badly that you had to cry it out alone in the car, but I'm glad you let yourself vent the pressure. You have to vent. We're here for you.
One of my friends put it so well when she said, "sometimes you are just one cup of coffee away from collapsing from exhaustion" - I know that's true for me with the things that I'm dealing with and if I feel this way, you must feel it a thousand times more with all that you have to deal with. It's okay to take some time to cry, scream, yell, and vent at the royal bitch of unfairness that your sweet baby Luke's situation is.
He's a fighter. It's obvious. And he obviously got his fighter strength from his super strong mommy and daddy. You are doing a great job and you are the best mommy that Luke could have.
I wish we could encourage you in more ways than just words, but hopefully our words will help in some small way. Please continue to lean on us. PM me if you need to. You are doing a great job. Super hugs. Mad mad respect for the super mom that you are for baby Luke.
You are a pillar of strength and grace under pressure.
We are here for you.
I also wish I could say something more helpful.. Take care of yourself momma.
Huge hugs & all the booze/coffee/chocolate/nice things for you.
You aren't failing. You are doing your best. Keep trying. Can you talk to your advisor about an extension on your dissertation? You've got real life stuff going on.
LFAF Summer 2016 Awards:
What is it with bitches and Target? People need to get out of their own way and off their damn high horses.
Sending you (Internet) hugs and love. Cry it out when you need to. And then have a treat because you have earned it!
Sending you big hugs and hoping this nursing thing gets figured out soon.
Fuck the home nursing company. The scheduler is incompetent and should be fired.
I'm sorry the doctors don't talk that is frustrating.
You are rocking this. You, your dh and Lucas have been dealt a shitty hand... but you are playing it perfectly! Some days will be harder than others and you're more than allowed to let it out. You're not failing at anything you're doing the best you can.
Lots of hugs!
Secondly, I'm glad you sat in your car and cried. I bet you needed to. Since Lucas has been born, you probably have had exactly zero time to yourself. And dude, you need to cry. You just do. As much of a blessing as Lucas is, this is a really, really hard situation. You need to process it, so it's actually really healthy to get angry, to cry, to fall apart a little.
Mimi, you are not failing at all. You are doing an excellent job at everything. You have all of our sympathy and we will never get tired of hearing your updates. I may not always know what to say, but you are always in my thoughts.
Dude, you're pretty much super-woman. For real. And your care team needs to get their heads out of their asses and start communicating/being consistent.
L: 7/12/13
C: 5/11/15
E: 3/7/17
Due 11/10/18
And you most definitely are NOT failing.
D 2.20.2011 & Z 7.16.2013
Big huge hugs to you.
TTC since 6/2003. m/c 9/14/03 8 weeks, 5 chemical pregnancies, mmc 6/04 12 weeks, Michael born sleeping 5/25/05 at 22weeks always our angel, fought ovarian cancer and won, m/c 4/06 5.2 weeks and 7/07 6.6 weeks,Our Miracle baby girl born 4/8/10,mc 12/18/11 at 5.3 weeks, BFP 10/26/12 dating u/s on 11/8/12 showing a strong heartbeat!EDD July 4,2013. RCS on 6/27. Baby boy in NICU for 8 long and scary days before he was able to come home. We are now a happy family of 4
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Thanks everyone. Really, thanks - your kind words do always help.
I have this year and next to write my dissertation, and they're being very understanding about my progress right now, but next year is going to be hell if I don't get anything done this year, and I have done almost nothing. So it's just a lot of (kind of reasonable) pressure from myself, especially since we're likely to be dealing with all this for awhile, so next year may not be any better.
As for the nurse scheduling - I may be imagining it, but feel like if I complain she'll be a passive-aggressive child and not work to send us good people. But she's already tried to send us a smoker and the dumbest fucking person I have ever met in my life (i swear to god, she counted the months on her fingers to see if he would be a year old by next summer, after we'd talked about how he was born in May), and I'm not compromising on this - I have a right to be picky about who cares for my child. I let her know I'm frustrated, and if it doesn't get better soon I'll seek out a supervisor.
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
I lost my angels 07/2010, 04/2017, 10/2017
Meimsx no more
So many hugs to you!
The incompetent scheduler alone would drive any sane person crazy...and that's even without a sick kid.
As to the dissertation, any dissertation committee member worth his/her salt would cut some slack (and I say this as someone who's on a few such committees.) If you were a student of mine, I'd tell you that I will write to the admin personally to lobby for more time if needed. I'd also suggest it's reasonable to prioritize Lucas. Then, and only after that, I'd say that if you can carve out 15 minutes a day to do something diss related it might help you feel less stress: in 15 min you can read a few paragraphs and take some notes, or write a single sentence, or identify 2-3 must-read articles. While it will be slow going to work in 15 min intervals, it might feel like you're moving forward and not totally stalled and therefore be a tad easier gor you to get going when the situation at home becomes at least more predictable. And you'll have a kick-ass explanation for how you'll manage time in a demanding profession!
But you are in no way a failure even if you don't write a word this year.
And your my idol for telling off the woman at target. I've always wanted to do that but never had the balls! F her.
Hang in there! And spoil yourself rotten - lots of junk food for AF