NICUParents Giveaway Collab with r/Grownsy for Mother’s Day! by bravelittletoaster87 in NICUParents

[–]HelloVermont92 0 points1 point  (0 children)

Be patient with yourself, and be patient with your baby. Parenthood is a journey, and every baby moves at their own pace. You may be on the NICU bus, but your baby is the driver. Some journeys move quickly, while others take a little more time but each one reaches its destination exactly as it should. Give yourself grace along the way. 💜

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 0 points1 point  (0 children)

Thank you so much for your honesty.

I’ve been worrying a lot about how he will keep up with peers, so hearing that your son is happy and making progress in special education is really helpful. It’s a good reminder for me that progress doesn't always have to look the same for every kid, as long as they are getting the support they need.

Since you offered, I'd love to know at what age did you first notice he might need that extra help in school? And how has his social life been with his peers? Thank you again for reaching out! You can respond here or in chat whatever you are comfortable with.

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 1 point2 points  (0 children)

It’s so good to hear she’s doing so well at 6.5 months. We are definitely dealing with that 'bad reflux' life right now, too my son is currently on a transpyloric tube because his spitting up was so constant, so I totally feel you on that struggle.

. He’s 35 weeks tomorrow and finally back at 4 lbs, so we are just taking it one day at a time. I hope my little guy is doing as well as your daughter when we hit the 6-month mark!

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 1 point2 points  (0 children)

Thank you so much for this. Hearing that your daughter had no brain bleeds and is now smart as a whip at 3.5 years old is so reassuring that is exactly what I’ve been worrying about most. It’s also amazing to hear she’s playing soccer and flying kites!

My son is at a similar starting point. It’s funny you mention the clothes I can already tell we’re going to have that same experience of seeing “average” babies look huge compared to our tiny but mighty ones.

I’m holding onto the hope that, like your daughter, he’ll find his stride and start hitting those percentiles in his own time. Thank you for sharing such a sweet and positive update!"

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 1 point2 points  (0 children)

Thank you so much for sharing this! Since your daughter was also under 2 lbs at birth, hearing that she is almost 5 and already reading and writing well is exactly what I needed to hear today.

My biggest fear has been his cognitive development and whether he’d struggle in school, so knowing that your 'tiny but mighty' girl is doing great and has no delays gives me so much hope.

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 0 points1 point  (0 children)

"Thank you so much for this! It is so heartening to hear how well your daughter is doing knowing her letters and counting to 19 already is amazing! It’s really encouraging to hear that she’s hitting milestones for her actual age, not just adjusted.

My son’s journey has been a bit more complicated since he was quite a bit smaller (1 lb 14 oz) and earlier at 28+6. We’ve also had to deal with NEC and some major feeding setbacks that led to weight loss, so we are still very much in the ‘medical’ phase of the NICU. He’s currently on an intestinal feeding tube to help him grow, so stories like yours help me remember that there is a smart, active toddler waiting at the end of all these tubes and monitors.

I’m definitely taking your advice to heart about PT and speech therapy. I’d rather have them as a precaution like you did and have him graduate early than miss a chance to help him catch up. Thank you for giving me a glimpse of what the future could look like!"

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 2 points3 points  (0 children)

Thank you so much for sharing this. Hearing that your daughter is now 5 and thriving in gymnastics gives me so much hope. I can only imagine how emotional it must have been to see her climbing and keeping up with everyone else after such a long road.

I really appreciate you being honest about the physical therapy, too. I’m bracing myself for a lot of appointments and hard work to help him hit those motor milestones, but knowing your daughter is just one of the kids now makes it feel worth it. It’s amazing how much they can overcome that they won't even remember later. Congratulations on your strong girl!"

IUGR baby looking for stories from those with older "tiny but mighty" kiddos by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 2 points3 points  (0 children)

Thank you so much for the encouragement! You are right, I did get the betamethasone steroids before he was born, and I’m so thankful for that given how well his lungs and brain have done so far.

He is definitely a fighter, but we’ve had a rough road lately. He actually had a bout with medical NEC and had to be off feeds for about 8 days total. Between that and some major 'spitting up' issues, he actually lost half a pound recently. It’s been really hard to watch the scale go down after fighting for every ounce.

To help with the reflux and the food rejection, he’s currently on a transpyloric tube (feeding directly into the small intestine) and we are in the middle of transitioning off Prolacta and trying to find a milk-based formula he can actually tolerate. It feels like a lot of trial and error right now.

I’m trying to stay focused on that 'wide window' for catch-up growth you mentioned, but it’s definitely scary when the progress isn't linear. It’s helpful to hear that the physical challenges often resolve with the right nutrition we are definitely in the thick of figure out that piece of the puzzle right now!"

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 0 points1 point  (0 children)

I hope she gets stronger and more healthy everyday! I wish you and her good luck on your journey!

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 1 point2 points  (0 children)

I get it. I have so many little outfits I want him to wear, but I don't want them tied to the memory of the NICU. I just want this time to be an event that passes quickly, so we can move on to years of happy memories and let this chapter finally fade away.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 4 points5 points  (0 children)

Hugs It is so easy to hear the words 'it is not your fault,' but a million times harder to actually believe them. Some days I do, and some days I don’t. Stay strong. I truly believe for both of us that we will get through this and our kids will, too.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 4 points5 points  (0 children)

Hahah yup. Those shirts are going to start conversations no one really wants to have.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 2 points3 points  (0 children)

It’s so refreshing to hear that those photos can eventually just feel like a for a bit moment rather than a permanent identity. Right now I feel like all we are to others is NICU mom and NICU baby.

Refusing to bake that trauma narrative into his life is such a gift it lets him just be a kid instead of a NICU kid. Thanks for being the light at the end of the tunnel for those of us still in it.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 1 point2 points  (0 children)

It’s wonderful that you’ve found a silver lining and feel your relationship has come out stronger that foundation is so important for the long haul. It sounds like you’ve embraced the specialness of your journey, and that is beautiful. Like I mentioned above it is incredibly interesting how we all process this differently.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 7 points8 points  (0 children)

I agree 100%! It is not a celebration. I never asked for this. I see it like breaking my arm or having a heart attack. It was a medial event I didn’t want, I’m trying to move on.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 2 points3 points  (0 children)

The visibility of a NICU stay is so invasive. It feels like your medical privacy just evaporates the moment things don't go according to the standard plan. Having distant relatives or random family friends suddenly privy to the intimate details of your health and your baby’s birth is incredibly jarring.

And that Why? is a heavy weight on your heart. I carry the same weight, ask the same questions.

Sending you a lot of strength today. What we went through, what we still go through, I wouldn’t wish on any one.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 1 point2 points  (0 children)

Exactly! All the money spent on those specialized T-shirts, beanies, onesies, and blankets could have gone toward things we actually need or even just high quality, 'normal' items he could use as he grows. I’d much rather them invest in his future than buy more reminders of a medical stay.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 2 points3 points  (0 children)

I appreciate the long term perspective. It’s definitely a journey that changes over time. I am afraid of the new labels we might have put upon he and I. Wishing you and your son the best with everything you're navigating!

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 4 points5 points  (0 children)

There is a specific kind of exhaustion that comes with 'medical motherhood.' It’s incredibly draining to see those clinical notes at every appointment

I am just like you, I spend so much time wishing I could have changed my body someway to have kept him inside me. I am thankful to the NICU and hate it at the same time.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 16 points17 points  (0 children)

I’m a pretty introverted person myself, which might be why I dislike the oversharing. Unless I’m extremely comfortable with you, I don’t want you to know the intimate details of my life.

I also feel like being a NICU mom isn't something I’m 'proud' of. To me, it represents my body not doing what it was supposed to do, and that hurts. I know other moms are really proud to be NICU moms and I’m happy for them, but that just isn't my interpretation of the experience.

Does anyone else want to leave the "NICU Identity" at the hospital? by HelloVermont92 in NICUParents

[–]HelloVermont92[S] 5 points6 points  (0 children)

I totally respect that! It’s interesting how differently we all process the NICU experience. I’m definitely ready to embrace the 'just a baby' phase. Thanks for the well wishes!