JRob’s NICU Journey and Beyond

12/04/2025

You are enough 💜

12/04/2025

Eye Day Complete ✅

Not the update we were hoping for, but still staying positive.

JRob didn’t make any progress these last two weeks—he’s still right in the middle of Zone 3. His vessels didn’t move at all. The ophthalmologist reminded us this is very normal for babies with BPD like JRob. Being on the ventilator and oxygen for so long can slow down retina blood vessel growth.

He also said that the big jump he made last time followed by no progress could mean his vessels may be done growing on their own. There’s a high possibility that we won’t see much change in these last couple of appointments and may need to move forward with laser eye surgery. We’re preparing our hearts just in case.

Now for the good news ❤️

On Monday, JRob had his monthly weight check with his pediatrician and he is growing right on track for his adjusted age! He’s now 14 lbs 1.8 oz and 23 inches long — landing in the 50th percentile for weight and 15th for height. He used to grow only half an inch every two weeks, but now he’s finally catching up and growing even more than that!
We also got the green light to start purées when he turns 4 months adjusted, as long as he meets all his readiness milestones.

The signs we’ll be watching for are:

• Good head and neck control

• Able to sit with support

• Showing interest in food (watching us eat, reaching for food, opening his mouth)

• Losing the tongue-thrust reflex

• Able to move food to the back of his mouth and swallow

We’re so proud of our little fighter and grateful for every bit of progress he makes — big or small. 💙👶🏼🫶🏼

11/24/2025

Got our sneak peaks from our Christmas photoshoot 🙌🎄 our photographer truly out did herself, these are amazing! ❤️

11/20/2025

Eye appointment day complete! ✅

We’re one step closer to finishing ROP eye exams — only 2–3 more visits and we should be done! JRob made huge progress today. Two weeks ago he had just made it into Zone 3 (literally right on the border), and now he’s already almost halfway through Zone 3, which is the final zone! 👏💜

This is amazing news because it means his chances of needing laser eye surgery have gone down. We still won’t know for sure until the beginning of January. He turns 60 weeks on January 5th, and since the ROP clinic is only open on Thursdays, we’re not sure yet if his final exam will be Jan 1st or Jan 8th — totally depends on the ophthalmologist.

If JRob does end up needing laser surgery, the plan is to do everything at once: his eye laser, his circumcision, and a hydrocelectomy (an issue he’s had since shortly after birth). That way he only has to go under general anesthesia one time. If we’re lucky and laser surgery comes off the table, he’ll have the other procedures done in April instead.

And since y’all know I love a good educational moment… 👩‍🏫💙

What is a hydrocele + hydrocelectomy?

A hydrocele is a pouch of fluid that collects around a baby boy’s testicle. It usually happens because the sac that drops the testicles into the sc***um before birth doesn’t fully close — so fluid gets trapped. It’s actually super common in infant boys, but most people never hear about it unless their own child has one.

Most hydroceles go away on their own during the first year of life, but when they don’t, doctors sometimes recommend a hydrocelectomy, which is a small surgery to drain the fluid and close the opening so it doesn’t return. It’s a straightforward procedure, but it makes a big difference in preventing future swelling or discomfort.

So that’s your JRob update for today! Our boy is making big strides, and we’re praying these last few ROP exams keep trending in the right direction. 💜👶🏼✨

11/19/2025

Crochet octopuses are used in many NICUs for micro preemies because the curly tentacles feel like the umbilical cord. For babies born way too early, that familiar feeling helps them feel safe and calm. The tentacles give their little hands something to grab onto, which can actually keep them from pulling out their tubes and lines. It helps them focus their energy on resting, breathing, and growing — exactly what JRob needed when he was fighting so hard in those early days.

I’m sharing a picture of JRob with his octopus from when he was first born and one of him now… just to show how far our tiny warrior has come. From a baby smaller than his octopus to the strong little man he is today 🥹💙

Forever grateful for the small things that made a big difference in his journey.

11/19/2025

Hey everybody! Our favorite photographer is having a contest — please go like or react to JRob’s newborn photo in the comments to vote for us! 💙📸

This one is for all my people 🙂

Post your favorite photo I’ve taken this
Year and the photo with the most likes by
Thanksgiving will win a Canvas Print !

On your mark ! Get set ! GOOOOO!!!!!
😄😄😄😄😄

11/18/2025

The United States has earned a D+ grade in the 2025 March of Dimes Report Card for preterm births, marking the fourth consecutive year at this historically low national grade. The national preterm birth rate remains high at 10.4%, meaning approximately 1 in 10 babies is born too soon.

11/18/2025

It's not overprotective. It's a deep love that comes from almost losing your child, and doing anything in your power to never make either of you go through that again.

11/18/2025

Finally got a decent person at Social Security today for JRob’s appointment so they can update his benefits since his discharge. 🙌 I’ve heard other preemie parents say it’s taken them over a YEAR to get their child’s benefits fixed — which is crazy, because Social Security keeps sending the in-hospital payments and then parents end up having to pay them back if the baby doesn’t qualify anymore. The system really needs to do better for NICU families.

💡 Fun fact most people don’t know:

Preemies who meet “low birth weight” criteria automatically qualify for SSI benefits and Medicaid at birth. This isn’t based on the parents’ income at first — it’s because extremely low birth weight is considered a medical disability until proven otherwise.

The Social Security Administration uses specific weight cutoffs based on gestational age, for example:

Babies 2,000 grams (4 lb 6 oz) or less born at 37–40 weeks

Babies 1,250 grams (2 lb 12 oz) or less born at 32 weeks

There are additional cutoffs for younger gestational ages too, which is why so many micro-preemies qualify automatically.

Most of the time the hospital social worker or case manager sets this up for you right after birth, but it’s still one more thing preemie parents have to juggle on top of endless appointments, follow-ups, and trying to adjust to life outside the NICU.

Sharing this in case it helps another preemie parent out there. 💜👶🏼

11/18/2025

Half-birthday photos are here! JRob wasn’t giving smiles AT ALL and was in his grumpy boy era, but our photographer still captured the sweetest shots 💚🤣

11/17/2025

Now one thing I’m NOT going to tolerate on this page is people thinking it’s okay to take my posts about my child and use them to bash me or my parenting decisions.

( dont think I didnt see the shares jump on my post about his circumcision consult 👌)

I share updates about JRob because they help other preemie moms, and because he has so many people who genuinely love him and cheer him on. I don’t have to share anything — I choose to because his journey gives hope.

If anyone has a problem with any decision I make for my child, feel free to unfollow or block this page. And if you don’t, I’ll gladly do it myself as people show their true colors.

This space is for support, love, and positivity — nothing else. 💜👶✨