Life on oxygen

Kd&J

I know I shouldnt have done this but I took Keira out yesterday for a mini shopping trip. I know how bad it is so please dont yell at me but we needed diapers and genie refills. Anyway... I was disgusted by peoples reactions to her. I had at least 3 women come peek around the stroller I had her in and say "Oh shes so pret...wait, what's wrong with her" meanwhile recoiling in horror. Yeah she's on oxygen but she doesnt have the plague. They most likely do. I was so upset when i got home. I was so excited to get out and be a normal mommy and daughter duo, but no. Nothing is normal for us preemie moms huh?

TriciaJoy

I'm sorry people are just assholes.

 

BTW, I see you're St. Louis.. what hospital was she in? Robbie was at St. John's..

 

Kd&J

St. Johns for 88 days. Were you North or South?

TriciaJoy

Both. The new south opened up 2 days after Robbie was born. But he was intubated for 5 weeks (and CPAP for another 3) so we spent a LONG time in North.
Then we were in Room 1 for about a week or so (Not sure if you even know what that is. They shut it down a little bit ago when they started opened more pods) and then finally we were in the Elephant Pod. Robbie was in for 96 days total..

We were actually just out there today.. had a GI appt and we stopped by the NICU to say howdy.

 

Kd&J

Really?! We were in North for a month and Christmas Eve she was moved to the Butterfly pod. Then later we moved to the Giraffe pod. I think it was heaven compared to North. Being able to be alone with my baby was huge for me. Plus the nurses seemed so much more laid back (in a good way) in South. How is your baby doing? Who was your primary? Did you encounter Joan or Theresa?

preemieparent

Olivia gets stared at whenever we go places.   When we went to Disneyland last year at least three people RAN into things while staring at her.  I often have kids (like 8 or 9) walk up and just stand in front of her and look.   The worst are the pity smiles.

People are just idiots.  Honestly, I don't mind when people ask questions about her but not when they are rude like that.

Take care - you'll get used to some of it and learn to ignore the rest of it.

TriciaJoy

Oh God, yeah..

Only the Elephant pod was open when we were there, so the rooms weren't private yet.. The first room we were in was set up for multiples, so there were 3 of us in there. Then Robbie had to have surgery and had to go back to North for recovery (that was HELL, finally getting out of there only to have to go back. UGH.) and took 3 days to wake up and they gave our spot away. When we finally got moved back down, we were in a regular room so we just had 2 of us in there.

Our day primary was Dara, and we had Mindy at night. Joan was AWESOME. She primaried for another family we were friendly with.. everyone loves her.
Theresa-- is it Thereasa (spelled funny?) kinda older, been there forever? That's the only one I can place.. Loved her, too.. but didn't know she primaried. She was was one of the first nurses who ever took care of Robbie.

As for Robbie- he's doing really well. He was born with a diaphragm deformity (rare and nothing to do with being a preemie) that has caused us a hellacious lot of stomach problems, and that has, in turn, caused some motor delays (no tummy time= motor issues. *sigh*) but hopefully now that they've fixed his stomach (again. He had surgery for a 2nd time 2 weeks ago) hopefully things will improve. But overall, he's doing great.
We actually live over in Illinois (Fairview Heights) and Robbie autoqualified for EI so we started therapy even before he showed any delays at all.. Right now we just have OT, hopefully starting PT pretty soon (waiting on the paperwork to process.)

How's your baby doin'. Obviously on the O2.. but otherwise? 

mcdev

The first time I took my Keira to the pediatrician the waiting room was full. ?We came in with the carseat, o2, apnea monitor, diaper bag....quite an entourage! ?After finally settling down everyone wanted to peak at the new baby. ?It broke my heart watching their faces. ?No one said anything except the kids and they were so LOUD and then went running to their parents to LOUDLY tell them that that baby has something on it's face. (the cannula) Of course no one meant any harm, but it really hurt my heart. ?I dreaded going anywhere for a little while after that. ?What really bothered me too was wondering if I had ever done that to someone unknowingly. ?It's only human nature to want to look, but I will forever be more conscious of how my actions can affect others.

lstaylor73

No judgment here!  We have been trying to take the boys out early and to places we don't think will have anyone so we can get out of the house.  We're all only human and need to get out. 

Early after we brought the boys home we were in the mall on a Sunday afternoon (it was summer and the doctors all told us that would be okay) and a teenager said to my DH "what's wrong with that one?"  And we got all the same looks too.  And now that we have the "Please wash your hands before touching mine." sign on their stroller handles people say "what's wrong with them".  I take it as a great thing because it tells people to back off and I don't care if they think something is wrong because at least they don't get to close anymore.

 Things will get normal.  This is one of my topics on my blog.  I call it Adventures in Preemie Outings because things are just different for us younger preemie and special needs moms.

Mrs. Destructo

Uuuugggh, people can be so cruel