Lost Sox Mom

19/06/2026

This is something so important to us, as we live in a very small town with very little resources for children with disabilities. My hope is that Halle will empower us to make change for the better, but we need the support from those higher up who make the decisions!

17/06/2026

Preemie moms! When did you start introducing solids? I’m assuming to base it off of adjusted age? I didn’t think too hard into it with my 33 and 34 week babies, but baby Halle was 31 weeks with developmental delays. She is almost 5 months now.

Side note: we’ve been adding baby oatmeal cereal to her bottles since about 2.5 months for reflux per her high risk doctor

13/06/2026

Why June 12th?

Today is Lamb Shaffer Awareness Day because it is on chromosome 12 where the SOX5 gene is deleted.

The SOX5 gene essentially tells certain brain cells how to function.

A fun fact is that we’ve gotten all of our girls Jellycat stuffed animals from the hospital gift shop. When Halle’s sisters came to meet her when she was just a few days old, they picked a little lamb.

When Halle was one month old and still in the NICU, we found out that she was diagnosed with Lamb Shaffer Syndrome.

To me, this was a sign that Halle is a gift to us and she will fulfill a great purpose 💛

02/06/2026

I swear they hear the crunch from rooms away. Next thing you know, 6 little hands from 3 little people are stealing my croutons.

I’ve seriously thought about buying them in bulk for snacks

27/05/2026

Normally time is measured after a diagnosis.

For us, 30 days was all we got to soak up the perfect image of life after the NICU.

Before Halle’s diagnosis she was just a little preemie baby. All of our difficulties were attributed to being born early.

We only had 30 days before the shift to wondering “maybe it’s not because she was early” happened.

At 30 days, my constant day to day to do lists consisted of coordinating care, setting up at home feeding supplies, getting approved for every type of therapies, wondering how I can go back to work and overly stressing about finding ways to help Halle’s brain make new pathways.

I grieve the time that I should have had to take in all the snuggles, baby coos, and smiles that I hold onto hope each day that they will start soon.

27/05/2026

Halle is blessed to have 4 big sisters that never stop talking 🥰

25/05/2026

I used to think I needed the Cadillac of all strollers with having 4 kids so close in age

Holding back on splurging, I realized I wouldn’t replace this for anything 🩷

24/05/2026

An absent nasal bone is considered a ‘soft marker’ during pregnancy — but soft markers alone don’t always mean something is wrong.

At least that’s what they told us. They said “it’s usually fine. Especially since your NIPTS test came back low risk. With that, it’s essentially not a concern.”

Every baby’s story is different, and this is ours. 🤍

23/05/2026

23/05/2026

God knows what you need and when you need it most