- Will you consider this?

Social media takes a lot of hits for negatively affecting people.

I'm Christine Zak-Edmonds.

However, just the opposite occurred for my next guest.

(bright music) A teeny-tiny baby was born locally.

Little Remi, was fighting for his life and the fretful mom was looking for answers of any kind.

Welcome Brittney Sier, who will share all that she has learned and how to have a lifesaver come through on social media.

Welcome Brittney.

- Hello.

- So you are the mom of Little Remi, Remington?

- [Brittney] Yes, yes.

- He's a fighter.

He's a six-shooter.

- Yeah, absolutely.

- Or something, right.

Well, he's gonna be four.

- [Brittney] Four.

- And what happened?

How early was he?

- He was born at 24 weeks gestation, so about 16 weeks early.

He was one pound, one ounce.

It was very unexpected and gave us quite a scare.

They gave him a 60% chance to survive the birth.

They rushed him straight to the NICU, got to work on him, and he was intubated for the first two months of life.

And then we spent basically over the whole span of things, 517 days here at OSF Children's Hospital.

- Just the first year, 500 days.

So almost like a year and a half I guess?

- Year and a half, yes.

- Right.

- Yep.

- But he's kind of a miracle baby.

He's got a lot of spirit.

Were you put on bedrest when things were starting to happen or how did that occur?

- I was actually admitted 10 days before he was born.

It was kind of just a wait and see up on labor and delivery for when he was gonna come.

We knew he was gonna be early.

I didn't really have to do anything special afterwards.

I did have to do a little bit of physical therapy, learning how to walk again a little bit and that kind of thing.

But yeah, I mean, it was more of just focusing on him, not me so much.

- Well, you were visiting the NICU quite often then.

What were his biggest struggles?

I mean, a one pound, one ounce baby is how big?

- Basically size of your hand, if not a little bit longer.

His hands were the size of your fingernail.

Just super teeny-tiny.

- And those little blood pressure cuffs?

- Yes, yes.

- They'd fit around your little finger?

- Yes, yep.

Super tiny, they actually let us keep one to take home as a memento.

(Brittney laughing) Yeah, it's unreal, the amount of what it takes to keep those babies alive up there.

They actually have the small baby unit at OSF, just for micro preemies babies that are born 27 weeks gestation or less.

- And that's pretty full a lot of the time?

- Usually it seems like it, yeah.

It seems like a lot more births that are happening nowadays are- - [Christine] Premature?

- Premature, yeah.

- So what were his challenges in the very beginning?

- Challenges, keeping up oxygen saturations, just keeping him breathing, keeping him pink and healthy, getting him to grow.

I mean, it's a very long road as far as growth goes.

It took several months just to get him to a three-pound mark.

He was so tiny for the longest time.

And even today, we still have...

He's healthy, he's a good weight, but it's still just, it takes a long time when you're born so early to get up to where you need to be.

- Well, you started...

I mean, you'd visit the hospital probably every day.

- [Brittney] Every day.

- So you started a Facebook page, Love for Remi.

- [Brittney] Yes.

- And just kind of let people know what was going on.

And then how did you end up getting people from all over the world sort of pay attention?

- Well, I mean, we started the page just to keep everybody informed, mainly family and friend-wise.

And then it kind of just, everybody started sharing the information that they had seen.

And not a lot of people know a lot about micro preemies, so it was a very interesting topic, it was spreading awareness.

It ended up where another family who was at Texas Children's Hospital, they had a little girl, named Remi, and she was friends with another mom from Oklahoma.

And that mom from Oklahoma reached out to the other mom in Oregon who actually ended up helping us with Remi.

- Right, so tell me about that.

Wow, that's a long story.

- It is, it's a big yeah.

- But networking and social media, social networking.

So tell me what happened then?

You heard from this person, this mom in Oregon.

- Mm-hmm.

- [Christine] And what did you hear from her?

- Basically she sent me a message and she said, "Hey, Brittney.

My name is Tara.

I've been where you are.

My son is the exact same way.

I had to fly him to Nationwide Children's Hospital in Ohio to save his life because doctors don't know about this new medical protocol for babies like ours."

She said, "Hey, I know how to save him.

If your doctors don't know how, this is what you need to do."

And she sent me a picture of the protocols of what the doctors do there in Ohio.

- And interestingly, maybe the same day you got that information from her, you had been talking to the NICU nurses and you were maybe thinking about letting Remi give up the fight?

- Yup, yup.

Actually it was that week.

We were considering that next day, actually getting ready to take away life support.

Remi was at that point paralyzed, under a paralytic for close to four months.

We had tried everything we could.

His body became acidotic, it was shutting down.

It was to that point.

The doctors said, "It's time, we've got to make a decision."

And so we started funeral planning.

We started preparing ourselves and mentally already grieving, starting the grieving process.

And that was about the day before, about 24 hours that she sent that message out.

So, I mean, it was the nick of time that we saved him.

- What is that protocol that she sent you?

And where is Nationwide Children's Hospital in Ohio?

- Columbus.

- Okay.

- Yep.

Sorry, what was your first question?

(Christine laughing) - What information did she give you on the protocol?

- Yep, basically, what the protocol is, is, it is a low breathing rate with a high pressure on a ventilator for these kids.

- What were they doing?

- Doctors here actually do 180 degrees the opposite.

They do a high rate of breathing with a low pressure.

So, basically, what Nationwide has created for these micro preemie babies is the complete opposite.

And when we approached our doctors here, it just sounded crazy.

They'd never done anything like that before, they didn't see how it would work or be possible.

So that was kind of a struggle in getting them to accept this.

- Did you get them in touch with the people at Nationwide?

- We did, we did a consult.

They did a consult over the phone with the whole group of doctors and they were able to actually save Remi over the phone by telling our doctors here what to do.

- That's incredible.

- [Brittney] It really is.

- Almost when you had just given up and maybe he was going to give up.

- [Brittney] Yeah.

- So that's certainly like a out there holy kind of spirit thing.

- Yeah.

- [Christine] Yeah, great.

- Yeah, there was nothing left to do and just a nick of time.

- And you haven't met, is it Tara?

- Tara.

No, we have not personally met.

We do keep in touch a lot though.

And whenever I have questions, I go to her.

Her son is Ashton and he's five.

So he's older than Remi.

And she knows certain things that I don't.

I've learned a lot from her.

And when we want to help other kids, Parents that reach out to us, if we're questioning something, we'll talk back and forth or decide what we can say to help someone.

- Well, you've also expressed that you have, as a result, reached out to a lot of people really around the world.

What other countries?

- We have reached out to people in the United Kingdom, Norway, South America, Canada, and all around the U.S. We've helped a lot of babies.

- And so they keep in touch with you and the babies have all made it?

- Yes, every single one that has done it has.

They're either thriving currently or they've gone home and they're doing wonderful.

- Well, did you ever think you'd have to know this much medical, anything?

- No, never in my life did I think this would ever be what it is now.

- And he's doing well?

- [Brittney] Doing amazing.

- Okay, what is he doing... Now, apparently, he has some genetics that he's small for his age.

- [Brittney] Yes.

- Yes, he was born early, but also he's just a little bit behind in the growth chart.

Where does he end up on that?

- He's actually not even on the chart yet.

- [Christine] Okay.

- So yeah.

But we're making our way there.

And dieticians are happy with where we're at so far and we're making progress.

Slow but steady progress.

- What's his favorite food to eat that you can feed him and he can't stop eating?

- Well, he's technically still fed through a G-tube.

- [Christine] All right.

- In his stomach.

So he gets all the nutrients there.

We are working on doing tastes.

We'll get a sucker for him to lick or something like that.

Let's say, he loves chocolate pudding.

- [Christine] I don't blame him.

- It's probably his favorite thing to try.

(Brittney laughing) - Really, well, that's good.

And through a tube, it just wouldn't be nearly as much fun.

- [Brittney] No, no.

(Brittney laughing) - What are they saying about his future?

He's not walking quite yet, he's taking a couple of steps.

- [Brittney] Mm-hmm.

- And what are they saying about that development?

- He's currently in PT, physical therapy.

He does occupational therapy.

We're in speech.

But he's crawling all over.

He's very, very fast.

But he'll pull up to the couch.

He'll cruise along and make strides there.

But we work in a gait trainer, a walker, to get him going.

But he's getting really strong and we're hoping, I'm hoping by either the end of the year or maybe early next year that he'll be on the move.

- Well yeah, then you might be wondering why you unleashed that child.

He's a boy, right?

- Yeah.

- He's very curious.

What's his favorite thing to do right now?

- Favorite thing?

He loves puzzles.

Puzzles and books big time.

Unfortunately with the books, he likes to break them, bend them and break them, and then he likes to put the pages back together.

- That's nice.

And not necessarily in the right order?

- Well, sometimes.

He's very smart.

- [Christine] Okay, okay.

- Yeah.

- Well, that's good.

Does he come to you and indicate to you anything in particular that he wants to do?

How are those communications?

- Yeah, I mean, as far as communications, we're not saying any words yet, but he'll grab your hand, put it to what he wants.

So we've kind of learned through touch and feel and things like that what he wants from us.

So he's getting better.

We were working with actually the touch...

I'm not sure what those things are called either.

- Oh those fuzzy touch and feel books?

- Well, those yep.

But there's certain ones that will say stop, go, mom, dad.

Things where he can communicate by pushing a button.

- [Christine] Okay.

- Yep, since he can't speak yet.

So, yeah.

- Right, right.

You had a picture of him in a little skunk costume.

Will that be what he is this year?

You're a little stinker?

- Yep, my little stinker.

- And you bought that for him when?

- Two years ago.

- [Christine] All right.

- Yep.

- [Christine] But you can get some good use out of it.

- Absolutely.

- All right.

And then he is... Well, you had a scare this summer with him.

You didn't know if it was the pandemic or if it was RSV.

What happened?

- He ended up coming down with a cold, just a common cold.

He is, with his prematurity, immunocompromised.

So even a common cold can take him down.

So we have to be extremely careful.

Constantly hand sanitizing, washing our hands.

Anybody that comes into the home, we take extra precautions.

But yeah, he ended up spending a couple of days in the hospital and just getting some extra oxygen, being observed, that kind of thing.

And then he was able to come home.

But it's just scary with even something as simple as a common cold that you and I have every year or whatever it is.

- And we can get over in a couple of days.

- Right, right.

It just goes to show how fragile these kids are.

- And that will be the rest of his life?

Is that what doctors are saying, or?

- We're hoping that he'll eventually grow out of some of that.

Lungs grow until you're seven, eight years old.

He does have a lot of scar tissue and damage to the lungs from everything.

So, it just takes them a little bit longer to recover.

- And he had a trach?

- [Brittney] Yes, yep, had a trach.

- And that was finally removed?

- Finally removed in July, yep.

- So he had that from the time he was basically born?

- No, we actually got the trach when he was about eight months old.

And that's kind of when things started going downhill for him, which typically you do see that with micro preemies who have BPD or bronchopulmonary dysplasia.

It's typically around the age that the lungs kind of start to fight the body.

So doctors thought it would be best to put in a trach, help him out.

Unfortunately, with the way our doctors have been taught with ventilation and not knowing a lot about micro preemies and that area, yeah, things just kind of took a turn for the worst after the trach got put in.

- But then because of you, they learned a little something new.

- Yes, yeah.

And I'm hoping it can be the threshold for them to help other kids.

- [Christine] Right.

- Hoping so.

- What are they saying is his prognosis?

- BPD, number one, which is the bronchopulmonary dysplasia, otherwise known as chronic lung disease.

They also call it failure to thrive or respiratory disease.

He also has nephrocalcinosis of the kidneys, which is also another problem that micro preemies have.

It's just excess calcium on the kidneys.

It can create kidney stones, that kind of thing.

- Can that be treated?

- Over time, yes.

He's on medication for that daily.

Yeah, I mean, those are kind of the two biggest things that we fight right now.

- And so you get visits at home?

Well, he goes to school in the morning.

- Just started school.

- And he loves school.

- Mm-hmm.

- He loves his friends.

- [Brittney] Yup.

- All right, and he colors and play as much as- - We're not quite to the coloring stage yet, but I mean, he loves music and playing with the toys.

- All right.

- Yeah.

- Well, that's good.

This is the first time he's ever done that?

- [Brittney] Oh yeah, yeah.

- And that's probably where he caught his cold?

(Christine laughing) - Could be, very well could be.

You never know, you don't know.

- But you have nurses come who have fallen in love with Remi, go figure, and they come to your house and they'll visit with him.

- Mm-hmm, yep.

They come and help me out so I can get my errands done, or at night, we have a night nurse three nights a week so that I can get some solid sleep and help with the feedings and medications and the oxygen.

'Cause he's still on a little bit of oxygen at night.

So, yeah.

- So a machine, one of the nebulizers or?

- Yeah, yeah.

He's on a oxygen concentrator, yep.

- Okay.

- Yep.

- [Christine] And he's fine with that?

- He won't wear the nasal cannula.

Anything on the face, he doesn't want anything to do with.

So we actually, my husband rigged up a little blow-by-oxygen mask and we just kind of keep that next to his face at night so he can- - And you get up and check on him?

- [Brittney] Yeah.

- Make sure it's blowing in the right direction.

- Oh yeah, and he's always got his pulse-ox monitor on.

So if anything were to go wrong it'll alarm and let us know.

- Is that the little thing on the finger?

- [Brittney] Yep.

- Okay.

- Yep.

- Yeah, those are kind of cool.

- Mm-hmm.

- Yeah, and like I said, you probably never thought you'd know this much and really never wanted to.

- No, no, not at all.

It's really interesting to speak with these parents from other countries or from around the U.S. and help them out.

And it's... (Brittney sighing) I always kind of wanted a purpose in life and I kind of feel like this has been- - Put in your lap.

- Yeah, absolutely.

Put in my lap, yeah.

And you can't say no.

You can't say no to someone who asks for help because we've been in that situation.

And if we hadn't known what to do, Remi wouldn't be here today.

- [Christine] Well.

- [Brittney] Got to pay it forward.

- Exactly.

Some people might think maybe you're practicing without a license.

But all you're doing is reinforcing what you have heard and give them some information they can check it out themselves.

- Correct, correct.

And that's usually what we do, is, we let the parents know, "Hey, this is what you can do.

Here's the number to call Nationwide to consult with their specialists."

And that's kind of basically it.

And we kind of help them convince their doctors to do a consult that this is the new way, this can really help these kids.

- Yeah, yeah.

Well, what would you like to see for Remi's future?

- Oh gosh.

I definitely wanna see him walking, talking, just being a normal kid, happy.

I don't know, just... - But he's already a sweet little boy.

- Oh, absolutely.

- Boys give the best hugs too.

Is he a good hugger?

- Yeah, absolutely.

- [Christine] Yeah.

(Brittney laughing) - No, I just...

I want the best for him.

And I think someday he can go out and tell his story.

Or, maybe he'll even become a doctor and help little kids that went through what he did.

- Micro preemies, exactly.

- You never know.

- Well, a lot of times that happens.

- [Brittney] Yeah.

- [Christine] It does happen.

- Mm-hmm.

- And so you had a dog and they were best buddies.

- [Brittney] Yeah.

- But the dog didn't make it.

- Yep, he passed away.

- And how did Remi handle that?

Was he looking for him all the time?

- Yeah, I mean, it's, they were always next to each other, always around each other.

Chase was very protective and sweet with Remi.

But I mean, it's almost kind of like it just floated away.

Like, Remi's...

He's okay, he's okay with it.

- He's adjusted to a lot of other things.

- Yeah, he's very...

He adjust well to pretty much any situation he's come across.

He's a pretty amazing little boy.

- He's a fighter, he's a survivor.

- [Brittney] He is, he is.

- And then back to Tara from Oregon.

So you've been in touch with her and when would you like to meet her?

How do you think that will come about- - Oh my goodness.

- If ever?

- I don't know.

We've talked about it on several occasions.

We have to meet some time.

But with our boys and their health- - [Christine] Issues.

- Issues, it might have to be sometime in the future when things are a little bit more stable, secure, and, I don't know.

She lives far away in Oregon.

So I mean, we probably have to do a plane ride here or there or somewhere.

(Brittney laughing) - It's just the craziest story that it came about.

And, social media does get a lot of bad rap.

- [Brittney] It does.

- But you can attest, this is really a good thing.

- Mm-hmm.

It really is.

I mean, and all of these parents that have reached out to us just through our followers, them getting a hold of them, I mean, it's just, we wouldn't know them if it weren't for Facebook, social media.

We wouldn't be able to help all these kids.

Remi wouldn't be here today if I hadn't started the page and Tara hadn't gotten a hold of us.

I mean, it is just mind blowing how interconnected everything is now.

- And then , how does your husband feel about all this?

'Cause he's Remi's dad.

- [Brittney] Yes.

- And he's okay with all of this, that (Christine blowing) - Well, he does tell me on occasion, "Brittney, you're getting a little ahead of yourself with this or that," 'cause I do get really intertwined with the families that get ahold of us.

And so I am on the phone quite a bit.

So it does take up some of my time, which we've talked about and whatever.

But yeah, I mean, I know he's proud of- - And he's supportive then?

- [Brittney] Yes, yes.

- He just says back off a little bit.

Let's spend a little time together.

- There's times he tells me, "You need a break."

- Men are famous for that.

- [Brittney] Yeah they are.

- All right, well, so Remy is thriving.

- [Brittney] Mm-hmm.

- And soon we'll have to catch up with you in a couple of years just to see exactly- - Absolutely.

- [Christine] What he's up to.

- Yeah.

- Will you let us know when he's walking and talking and jumping and doing everything?

- [Brittney] Mm-hmm.

- Is there anything in particular that he really likes to do right now?

Well, I saw some video.

He likes to spin in circles, 'cause that's kind of fun.

He's not attached to anything anymore.

- No, he's not.

He loves being cord-free.

And we love that he's cord-free as well.

But he loves the outdoors.

He loves being outside.

If he's not outside, he's at the window.

- [Christine] Okay.

- So, yeah.

And his new fascination is the microwave.

He likes to help with the microwave.

- [Christine] Oh.

- [Brittney] Totally random.

- So what exactly does he do with the microwave?

- He likes to open the door and we'll put in whatever we have to put in, then he'll close it and we help him push the buttons and he thinks it's just the greatest thing in the world.

- [Christine] Look at him.

- I know.

- Cooking already at an early age.

- I know he'll be like his dad.

- Yeah, yeah.

(both laughing) Well, I thank you so much for sharing those stories and I wish you all the best.

- Thank you.

- And do you think you would like to have more children or you're just gonna kind of hold off right now?

- We've kind of been told we probably shouldn't.

I think we're probably done.

- [Christine] You've got him.

- Yeah, we got him and his older brother, Hunter.

So I think we're good with our two boys and our little family.

- [Christine] Well, that's great.

- Yeah.

- Again, thank you so much for sharing the story and people can find you, Love for Remi, and you have a group?

- Yep.

- So they can go on there if they want to find out any more, because she gives updates quite often and shows all those pictures.

So he's gone from, how much did he weigh now?

- Now he is 26 pounds.

- Aha, well, that's good.

And how much is a four-year-old supposed to weigh?

About 30?

- Yeah, I think it's like 30, 31.

Something like that, yeah.

- [Christine] So he's doing all right.

- Yeah, we're getting there.

- Okay.

Well, thank you for being with me, Brittney.

- [Brittney] Yeah.

- And thank you very much for joining us.

Stay safe and healthy.