"WE WEREN'T READY... The Reality of Life After NICU"

Ciao ragazzi!So today it is 14 days that we are with Lorenzo at home and now we're gonna show you our routine and then how it's going with Lorenzo.

I can't believe it's already been that long that he's been home.Two weeks.What the heck.

And now we tell you the craziness.Now do you want to show everybody how our setup house here?

So this is how uh to try to oh my okay to see the temperature my one craziness is his temperature because in the NICU they made it very um clear that he cannot get too cold and he cannot get too hot so I try and monitor the temperature constantly we're 72 for the house at the maximum right now I think my fingers on the sensors too but um 72 at the most we fluctuate between 70 -72.I personally am always cold so for me this is freezing.I like the house really warm.

I know but it's good.

Alessio loves it because you're hot natured but yeah we need it for him so we know exactly what clothing to dress him in what layers to put him in and whatever.

Yes toys for Lorenzo pretty much this it is for teaching because they're looking black and white.

Focusing.His favorite is the mirror.But he loves these and then we have little toys and so when he's awake we'll play with him or sing to him or read him a story or do his little things.or hold him on our chest so he can practice his uh head yeah control you want to show where we change uh lorenzo so this is basically like position where you feed him yes this is the because you have to holding your arm you have a great thing to support you to support him if you need yes because we have to hold him up for a pretty long amount of time because he's spinning up a lot yes so we have to keep him elevated so this is likezone number one from the couch okay and then you can put your feet up yeah it works great stage two from the couch the best advice i've ever gotten was from my sister she told me bye thousands of rags because she will need more than you expect and she was right so if you were putting on your registry put hundreds of burp cloth swaddles muslin rags you need shout out to my sister for that because yes this is his diaper not too far right no so we've got his diaper we just changed his diaper so we put this here so he has his little head elevated his diaper changing things we are switching these out right we don't have a like changing pad or anything right now just because i don't know it's just we don't know where we're gonna be later on we just wanted something exactly the true it is we know we're prepared for that and then we said oh we're gonna change it all on the ground on the in the couch but then the ground was too much rough there it was perfect can i can i tell a story come here i want to say too my all my cousins said they changed their babies on the couch so it works okay okay i need to tell you the story because it was the story from last night so in the night you're a little bit zombie i was here oh by the way this is the place where we have clothes oh yeah we were keeping all of his clothes we are nice we are nice right now we remove the bag this is not instagram or or youtuber house this is not aesthetic it's not aesthetic because you know all that people making everything nice and clean this is survival this is the real life this is the bag where we put the diaper and then we have a trash can on the trash can because until tomorrow the day after so when i take the bag

you know, I was like this.

But go down in position so I can get the full.

Actually, I was like this.

You were standing?I think so.

I'm standing like this.I do like this.So I move the diaper.The gun was pointing me.And then he shot the pee.Last night.

Oh, I did like a ninja, like.like that i close the diaper immediately and then i stay like this waiting waiting the pee coming down you know because oh i shot like i did waiting i don't see nothing i said they go to pee in my chart.

What's funny is in the NICU, the nurses they chart everything that they do and then they write it on a piece of paper and they plug it into the computer so they know when he ate, took his medicine, whatever.and then they have report when they shift change Alessio and I started doing that here because I'm using the little app to track everything but right now we don't have time to sit there and plug it into the app we write it down we put it on there so when we change shifts the other person can see oh this is when he last ate this is when his last diaper was whatever I walk in in the morning and I see like I don't know two o 'clock in the morning peed in the sky What the hell is pee in the sky mean?So I asked you and this was pee in the sky.

Because they never come down.

We have no idea.

I feel like they go into my hair.

It's looking extra shiny.Yes.We don't know where the pee went.It's probably soaked into the carpet.

No, it's impossible.It was a straight line, guys, straight line.It was supposed to become there, here, and it was nothing.I changed it anyway.By the way.

It has to be somewhere.Anyway, I was going to say, so we started out by firstkeeping all of his little clothes in his room, in his drawers.They were all folded so nicely.And then I realized it's too much time to run back and forth and get a new onesie every time he pees in it or he...

Oh, because we change three times a day.

Three times a feed, basically.So now we have our little bins here.These are all of his burp cloths and his swaddles and rags.And then we've got his outfits.They're terribly organized again.It goes, why fold it?

Why fold it?Wait, two seconds later, you're gonna have to pull it out.It doesn't make sense to fold it.So it goes in here.

Grab what you need and move on.People are gonna say, guys, you are terrible organization.Look at that.This is..

.Okay, this is another example, okay?We did the laundry.We've never done so much laundry in our lives.That is one thing.

The water is going to go crazy.We never spent so much water in our life.

Because we're changing his sheets.Hold on.

He's breathing, he's breathing.Does he panic?

I used to scare him all the time.Yeah, we do his laundry, but then again, I was folding it.What's the point of folding it when five minutes later you kind of pull it out and switch it?So now it's just in our pile.So it's working, okay?Then we have his bath stuff.

I don't know why the bath stuff is here.Why don't we put it in the bathroom?We're doing his bath in the bathroom because we're making it really warm.

We just figured out that we can put that in the bathroom.Then we have the humidifier.

The pump.Then we have his diaper stash.

Diapers.

Okay, it's finished.Extra rags.Then, this is the laundry station, okay?This is why all the onesies are hanging up here to dry.So when they're done drying, we throw them in that basket.Again, the first night I was sitting here folding

everything perfectly no that is the the this is his laundry bed so this is where all of his pp and spit up clothes go when when you feel out we do laundry this is a beautiful laundry basket okay yeah it is it is then we have here in the kitchen we have i mean guys it is like crazy oh we're not clean here we just ate okay oh ragazzi no rag oh yeah now you can see why because there's a big reflection yes okay So this is his bottle station where all of his stuff comes after it's been cleaned.

And this is constantly working.Like now it's just finished.In the beginning you can hear, now it's finished.

Because I have my pump stuff too.We're washing the bottles and the pumps.and yeah so yeah let me stay here so i give an eye okay this is constantly rolling constantly constantly so this is where we make his bottles usually this is nice and clean don't hold this against us this is his medicines and his formula that we have never likes noise from each other i guess for the kidney disease she needs a little bit help yeah then here's the drying rack and then this is where we clean our stuff yeah So yeah, this is our kitchen setup.

It is where we're living right now.Kitchen here, cleaning, and back there.

Yeah, we basically just hop back and forth here.So in the night, when one of us takes a nap, the other ones, boom, boom.

Cleaning, cleaning.

Yeah.And it's working.

For now, it's working.It is not perfect because, I mean, we need a clarified thing, OK?We come back here, even if we're sleeping, we always feel, oh, then we have the, a lot of people said about the noises.We have the noises.We have a...we have this his favorite i think is number three right is the the storm always red light they say i know this is the heart and make me all right i hate that too it's just your favorite i like the birds that she hated the birds stress me out all right all right all right so um what i would try to uh tell you ah i want to show last thing right here at this station okay it is like the actually the night i put the lorenzo here oh yeah it's gonna be here so i like this you know and watching him and then so if I zombie area sometimes because he fall asleep and I'm like like this fall asleep but when he's like waking up like this it's easy for me to check what is happening you know if I see sounds or if I need to put a hand I usually put a hand for calm down but it's easy to come out so this station came even a sleepy station.

Do you want to see where I watch this?So it's like this and like this so when i watch so and so i'm like this so you you're doing some push -ups yes me no i'm too lazy i want my fat to stay i need fat for survival so yeah So this is delirious for us after 14 days.But I feel like we got better.I mean, I don't care about the mess in the house.I feel like we are really sufficient.

It's realistic, I think, you know.If you tell me to do it, I'll do it.was spotless in this moment, I'm not gonna believe it.

Okay, you're gonna hear sometimes Lorenza in the background.It is here, in his basinet.How was the first days, day one?

So, day one rocked our world.

Yes.

Because we had expected Lorenzo to come home sort of on his NICU schedule because in the NICU he had care times every three hours.Every care time he would have his diaper changed, he would get his temperature taken, and eat.And then he would be awake a little bit and then he would go to sleep and then this continued every three hours.We were thinking he was going to come home on that similar schedule because they said a lot of babies stay on that schedule.Not him.I think that he recognized immediately that he was in a new environment with new smells, his new bed, like the bassinet is different than what he was sleeping in with the NICU.

It's a little bit harder for his bed than the NICU.NICU was so soft.

Because in the NICU they can elevate everything, they have these cushy like containers because the babies are on monitors and they can do that.Here obviously has to follow safe sleep so he's on this flat hard surface and he's probably like what the heck is this i don't like it so i think he was um needing extra comfort and he was waking up very often for eating and he wanted to be in our arms constantly because i think he was adjusting you know i would i would feel the same way so the first night i don't really even remember much about it because we were awake the whole the first night we decide error number one me and jesse we will try to stay together in the night and then maybe take a nap here one take a nap

there, one, but we stayed all night.

Also because we were so excited to have him home.

Yes, we were so excited.

We were staring at him the whole time.

And both, we don't sleep at all because we don't prepare for the fact that he was eating every two hours.warm up the milk we know we're prepared pumping in between feeding so it was like a nightmare second night we did better third night we started to go even more better i think i want to ask you two questions that you're going to answer one it is uh how is mitcha with this adjustment and second question it is why we are in the living room why lorenzo is not uh in her bedroom can because he's matching with mitcha can you explain yes so mitcha Rita is adjusting.

I think that she was very surprised when we brought him home.She was thinking, what is this?and why is my routine disrupted because she has her little routine.We've gotten her in that way so that she can do well with her kidney disease.We always take her outside so she's active.We feed her and give her like cuddles and stuff and that routine was very much disrupted so she was very on edge the first two days.

She wasn't scared of him.She just kind of like kept her distance, and she would watch, and then she would leave.Our bedroom is her safe, cozy spot.It's where she loves to sleep and snuggle during the day.So we didn't feel like it was a good idea to put his bassinet in there and totally take away her little safe zone.So we have him in the living room.

So Lester and I, like you said, have been taking turns staying in the living room.And one of us will go take a nap in the bedroom, and then we'll switch.And then during the day, we're both here anyway so it makes sense but she's doing so much better and now she's like she'll fully come upin our lap while we're holding him and Sit next to us and snuggle with him.

So I think it's only gonna get better and better Now a little bit about Lorenzo's Lorenzo have two different pediatric.Do you want to explain what happened for?Visits plus II Lorenzo have I doctor exam again.Can you explain the steps the Lorenzo?

So a couple days after discharge we had our first pediatrician appointment, which is important when you're leaving the NICU to make sure the baby's stable and everything is good after transitioning home.We had a pediatrician appointment.We searched them, great reviews online, not a great experience in person.I have to say both Alessio and I, like after the appointment, I looked at Alessio and I said, do you have the same feeling that I am feeling?And he agreed.It's not that the doctor wasn't nice.

Everybody there was fine, but we felt like He didn't really study Lorenzo's chart at all.and one of the things that his NICU doctors wanted to do was to have follow -up blood work to check his anemia levels and the doctor didn't even know that he needed to do that.

It wasn't right in the papers.

It was right there on the discharge paper.

Discharge, like follow -up immediately with blood because they need to know.

Exactly, so we need to check his levels so they didn't say anything about that.We didn't find that out until the second pediatrician, so several days later which I was not happy about.And then For example, they didn't know anything about his PDA and the fact that we still need to follow up with a cardiologist.It was just a lot of like...

Red flags, especially when the NICU called them and talked with them.

They talked directly to the pediatrician and gave the whole breakdown.He's been in the NICU for three months.He was born at 26 weeks and five days.It's not like he was a later preemie, like born at 34 weeks or something.So there's a lot of things that they need to watch for.And we just felt like, number one,

that he didn't pay any attention to the chart or anything that Lorenzo has to follow up on.And then just in general, I felt like didn't know much about preemies, like in general.And we just, there were a lot of things that he said that didn't vibe with us.So we felt our instinct that we needed to change.Fortunately, we were able to get in touch with our nurse.from the NICU, our primary, and she recommended another pediatrician.

We got in the next day, and this one is so much better.Really happy.She first did a full assessment on him when we went in there, which they didn't really do in the first place.She was the one that said, oh yes, the NICU wants him to follow up with blood work.We were like, what?We didn't know that.

She's like, oh yeah, it's right here in the discharge paper.and she didn't talk with the NICU she was checking for the PDA she was doing that she knew everything without asking nothing because we were going there and telling her just to see the vibe and then we didn't ask nothing and she did great so i'm so glad that we got in with her because otherwise yeah there were several things that he needed to have happen soon after that would not have happened wouldn't happen so very happy with who we were with now thank goodness the eye doctor Oh, so every two weeks in the NICU, you know he's been having an eye exam to check for retinopathy of prematurity.And up until discharge, he was always stage zero, didn't have a problem, but his eyes were still premature, so we had to keep following up.His first outpatient follow -up was traumatic, first of all, for us especially, because in the NICU, they use the little clamp to open his eyes, but just for a couple seconds so they can take a picture, and then they're done.We were expecting that.know because you're at the actual eye doctor the ophthalmologist goes in and actually looks at his eyes it took it felt like forever it felt like for us i think it was five or seven minutes clock so they they open them up and they're looking they're looking studying studying moving

his eye with the little stick, switching eyes.We thought he was almost done.They're like, oh, we got to look at the other eye again.It was horrible.He screamed the entire time.

Louder, louder, louder.Louder than I've ever heard.

He did not stop crying.He didn't have a moment of calm.It was very horrible to listen to.And I know they say, oh, it doesn't hurt the babies.It just feels weird.

Yeah.

It's just hard to listen to.So basically, like Alessia was saying, she said that he has stage one ROP now, which is not a bad thing because around this time it can often develop and stage one is very mild.So she expects it to self -correct, but we have to follow up.again next week and if it's still not corrected we follow up again two weeks after that you want to explain what this disease yeah basically because they're premature their eyes don't develop like they would in utero so the retina the vessels in the retina can not grow correctly they can either not grow out as far as they need to because if you look at the eye they explain there's different zones of where they grow four zones so they could stop growing or they could like twist or just grow abnormally.So they watch to make sure that they're growing correctly.for him his aren't growing weirdly they just kind of like paused at the end of zone three so they want to go all the way out to the edge and his are almost there but they're just kind of like right there slow a little bit so we'll have to see the disease if uh go through stage one is fine stage two is fine it's fine they just looking at it yeah stage three i think is when you need to start I don't know if it's stage 3 or stage 4.

I don't know exactly when they'd make the decision but the first treatment is to inject into the eye.Second treatment islaser surgery.

Because you can, the retina can detach and cause blindness.

That's the big problem here.It's like, they want to make sure that babies don't go blind, which is very important.

It's very important.

So we have, it's like one of those things that's really horrible, but you've got to do it because the alternative is not good.So as horrible as it is for us to hear him like that, um, just to remind myself that he won't remember it.Exactly, we remember.We won't remember it, but he won't.

Okay, ragazzi, so this is our life right now after 13 days.And we love it.Beautiful.And we love it.I mean, for heart, it is.Every time I see little Lorenzo smiling or other thing, I said, it's worth it.

So thank you guys for staying with us.We'll see you in the next video.Ciao, ragazzi.Ciao.