Answering questions from others...

My DS is in the NICU and was born at 32 weeks. We receive updates daily and know he is doing fine. We've been able to Attend morning rounds with his NICU team, so they've been giving updates on his progress- even if its something really small. Progress is progress 
We have a lot support from family and friends, and many want to know how DS is doing. I don't mind providing updates but I find that most keep asking if DS is growing/gaining weight as a way to guage his progress. They don't understand why I'm not concerned about weight gain, etc. Of course I want him to gain weight, but the milestones are so different for a preemie, I've discovered. Has anyone else had some difficulty explaining preemie progress to others? It's not exactly upsetting or anything- just hard to explain that the medical team is not just looking at baby's weight to determine progress. How he manages airflow,
Tolerates feedings, how his bili levels are going- stuff like that is what are important right now. It's just kind of annoying ( not even annoying, really-can't think of a Different word!) when I get the same questions every time ( has he gained weight yet?)

How do you field questions and give updates that make sense to others that may not understand how preemies develop and grow? They truly mean well- I just don't know how to better explain things to them.

My friend's responses were things like "no weight gain but on the up side She didn;t code or set off any alarms today!" or something like that.....I would just laugh because her whole family are just a bunch of snobs who were pissy because she had pre-E and had her daughter ate 31w4d. She would just gently acknowledged the weight thing and put the important stuff out there.

For full term babies & even yours when it leaves the hospital weight gain is an important sign of growing/progress. A lot of people that haven't had to deal with a baby that's lungs aren't fully developed, bili levels, resposnsive tests, feeding tolerance, etc are not gonna know to ask about it.

<blockquote><b>Quoting Mum to a Monster:</b>" My friend's responses were things like "no weight gain but on the up side She didn;t code or set off ... [snip!] ... and had her daughter ate 31w4d. She would just gently acknowledged the weight thing and put the important stuff out there."</blockquote>


That's actually a really helpful way of putting it because that's kind of how it's been for us( the alarms, etc). But how sad your friend's family didn't get how serious pre-e was! As if it can be predicted or avoided. Thanks for the feedback.

<blockquote><b>Quoting ~The Lunar Flower~:</b>" For full term babies & even yours when it leaves the hospital weight gain is an important sign of growing/progress. ... [snip!] ... that's lungs aren't fully developed, bili levels, resposnsive tests, feeding tolerance, etc are not gonna know to ask about it."</blockquote>

That was why I posted this topic/ question... I feel that I can't expect others to know these things, so what are ways I can explain progress to them without focusing so much weight gain and other milestones commonly associated with term babies. Like I said, it's not annoying, really... It's just like " gah, stop asking me did he gain weight when he's only 4 days old on the NICU". I dunno... It's kind of hard to explain the experience I'm having.

Quoting HamHam:" <blockquote><b>Quoting Mum to a Monster:</b>" My friend's responses were things like ... [snip!] ... how sad your friend's family didn't get how serious pre-e was! As if it can be predicted or avoided. Thanks for the feedback."

Ya. I was the Surrogate "spouse" so I knew how hard it was on her so I took the general stress brunt and got to be that "If you get negative or rude near this Isolette again I will kick you out, she is stresses enough with he baby coding and having to have major surgery weighing less than your shoe so STFU if you can't be nice."

I'm that person you either love or hate to see at the hospital because I have 0 shame and have no problem getting whatever taken care of that needs to be done be it on the medical professionals end or on the family and friends end. I've had friends even call me to come visit their family or friends because all of the hospitals in this area know me and start singing a new tune about patient care and promptness when I pop up....Oops.  But I believe that no patient should sit in their own waste for hours, be left for hours without pain meds after asking, or the simple things you just don't do.

The one hospital gave my "momma"(one of my mom's best friends she was like another mom to me) a staph infection in her brain for refusing to clean her incision site every time they switched the dressing and wouldn't wash their hands and she died 3 weeks later of sepsis of the brain. She survived Breast cancer twice, and brain cancer, and could have lived but she got sepsis from them not washing their hands and cleaning her incision.

So ya after I ran off on a tangent.....I hope it gets easier for you!

Quoting HamHam:" My DS is in the NICU and was born at 32 weeks. We receive updates daily and know he is doing fine. We've ... [snip!] ... may not understand how preemies develop and grow? They truly mean well- I just don't know how to better explain things to them."

you know, i actually didn't provide any details at all.
people would ask, and i'd say "they're doing well, growing!" and that was that.
the only person i gave actual details to (about the alarms, and the changes in IV to NG, from CPAP to canula) was my sister, who thankfully knew a little more about this stuff from others she'd known with premies. and if she didn't know, i'd explain.
most people don't encounter this stuff, and don't actually need the details.
all i said was "they need to get a little stronger, so they'll be in the hospital until 36 weeks" and that was all.
but on the other extreme, i've seen people keep blogs, and add daily detailed updates. this can be helpful if it helps YOU process the day, and that way you don't have to repeat yourself.

Sorry I'm late to this. But there's not much you can do to make someone understand who hasn't been there. I had a friend due 2 weeks after me tell me she was jealous when my csection date got scheduled. I was like "jealous of what? A baby going to the nicu or a csection?" Talk about irritated.

Just simply tell them the milestones and leave it at that or just say he's doing great or what not. All the time people in my dd group ask like "how much did our LO weigh at this many weeks" and while mine has the same growth they all say crap like "oh she's so tiny" or "oh wow, I guess my milk is really working then cause mines 11 lbs". Ok well so is mine, she gained the same amt of weight as your kid, she just started 3 lbs less haha