Speaker 1 0:10

Hey guys, welcome back to Preview Alliance Podcast. This is Sarah and Whitney, and we're back. You guys heard her story earlier. We love her, morgan. We know her as the triplet mom too. Hello, that's your that's. That's always going to be a thing, but today's a very special episode. It's close to my heart, it's close to your heart. I think it has to experience working in the hospital with this world prematurity awareness. You know we are talking about when babies are born before they say term, which remind me what's term now.

Speaker 3 0:40

What needs. Technically they changed it to 39 weeks is full term. 37 is what they consider kind of like late preterm, but 36 and under you are a preemie.

Speaker 1 0:53

And then what's interesting is if you're a preemie mom or if you went into this and there's different categories, right, like I knew I was not making it 40 weeks, you knew that was not happening, so carrying that through your pregnancy of knowing I'm going to walk this journey, but you really don't know what this journey is as hard.

Speaker 1 1:10

And then you have the moms who it just kind of happened out of nowhere, and both is equally hard. But one thing that I didn't know about is what the road after birth looks like, and no one really fully prepared me. And it's scary because during our pregnancies we've talked about this is we were told okay, so if your baby comes at this week, this is what to be expected.

Speaker 2 1:36

This week this week?

Speaker 1 1:38

That's all just kind of rowing it at the wall. We don't know for sure. I don't think what people talk about when we call prematurity awareness days and stuff is that it is not just a day, it is every day thing we live with and for our new listeners, share when your three wonderful boys? What week were they born with?

Speaker 2 1:59

So I have triplet boys that were born at 27 weeks and four days.

Speaker 1 2:04

So when this 27 weeks they were in the NICU for different amounts of time the shortest was three months in the longest was four and during that time you had to kind of exactly just take it week by week and day by day, hour by hour.

Speaker 3 2:25

Yeah, yeah, they were considered micro premies, weren't?

Speaker 2 2:28

they. Yeah, yeah, some days, especially in the beginning, was definitely hour by hour, but yeah. So two were born, one was two pounds four ounces, one was two pounds two ounces and one was one pound 13 ounces. And so they were, I think, technically considered micro premies and there's under 28 weeks and then there's after 28 weeks and that's kind of a big which. We were obviously made it close to that 28 weeks. But when the babies are born before 28 weeks, they do this thing called a golden week and you're not allowed to hold them for the first week and basically it's like as minimal movement and stimulation as possible and the goal of this is ultimately to prevent brain bleeds, because they are so at risk for brain bleeds that I mean even the smallest movement. And so, yes, that is actually something that UAB has created and I think it's they've had really good outcomes Totally, and the NICU experience.

Speaker 1 3:34

I know from me. Mine was 10 days of Will and two days of James, but I don't feel like people talk about it. You know it's going to be hard, you know, but it's very difficult as a mom to see your baby or babies and you can do nothing to make it better.

Speaker 3 3:54

You're already going through a very vulnerable time, having gone through a delivery that's early, so most likely an unplanned emergency section I was going to say, I think anybody in the NICU.

Speaker 1 4:05

you cannot tell me that there wasn't trauma involved in that birth.

Speaker 3 4:08

Right, something happened and it's not always an emergency section. I would say probably 80%. I could probably safely say, especially when we're looking at preemies kind of thing Not your full term where they're checking blood sugars and things like you could have a very smooth routine delivery with that, and blood sugars are off.

Speaker 2 4:26

So babies in NICU. We're drawn this now. Yeah, yeah All drawn this babies.

Speaker 1 4:30

Go for the HUNCU.

Speaker 3 4:31

And then maintaining their temperature. My oldest nearly went to NICU because she her temp kept dropping after delivery and she was at 39 weaker kind of thing. So when we're looking more at preemie babies, then we're really we have to understand that trauma occurred in delivery, Whether it was a stat emergency section or it was a vaginal delivery that progressed very, very rapidly. There was a lot that was out of mom's control with that, so that's already vulnerable. You have a lot of pain that is going on because of delivery. You've got those physical limitations with that and then come into the NICU setting where they don't really get to call the shots for their baby.

Speaker 1 5:14

No.

Speaker 3 5:15

Because you don't know what's best for your baby. Medically Some may, if you have a nursing background you might, but I would say the majority of us don't know what's best for our babies in NICU, and that exacerbates that vulnerability and that helpless feeling.

Speaker 1 5:29

I'll never forget the enrolled in post-will I was. I mean the picture. I'll put it on our social, for when we do this I look like death because I had base, me too, I mean, you know. So, even this is. I still remember I'm like that was my first photo, because then you compare in your head to like everybody's and I had a hard time looking at how tiny it was and it was just like literally skin on bone and no one prepared me for that either.

Speaker 1 5:59

And then there's tubes. It's like this little incubator. Visually it's a lot overwhelming because in its sensory the lights, the smells, the people everything, everything, information overload. They're coming at you. Hi, I'm so, and so this is this.

Speaker 3 6:15

This is what's going on with your baby and you're going, okay, okay okay, and then you don't know how long you're going to be there.

Speaker 1 6:20

That's the thing I remember. I started playing this guessing game, okay, so what's the average?

Speaker 2 6:25

And they were like he's a white boy.

Speaker 3 6:28

So he's a wimpy white boy.

Speaker 1 6:30

And they're like he's going to be in way longer than a girl.

Speaker 3 6:34

Yes, Someone, a person of color, person of color, and I'm like why? And they're like because he's a white boy, yeah, white boy syndrome I mean it's so real.

Speaker 1 6:43

And I'm like it's very real, and so didn't you get a doctor and like all these like okay, there's medical words and there's like also like NICU language right. Like you got to learn what the respiratory therapists do here.

Speaker 2 6:54

What does this person do?

Speaker 1 6:55

here we were at academic universities, so we were meeting multiple people on the team. Hey a med student they may say this, but let me tell you something in the day they ain't making that decision.

Speaker 2 7:06

That's the attending, yeah.

Speaker 3 7:08

Right, you don't know that Right, and I try like well.

Speaker 1 7:10

Who says what?

Speaker 3 7:11

Well, and if they're a med student, you're like well, you have more knowledge than I do, so I'm just going to take your word for it.

Speaker 1 7:15

Oh my God, the nurse in me was like okay, next See me in a medical social worker I'm like.

Speaker 3 7:20

I beg to differ, sir Go on.

Speaker 1 7:23

So essentially, you're put into a world that you don't know. There's no way for you to know. And now you have this baby that's supposed to be still inside you, that's in this world, right, and I had this experience. I'm sure you did. People don't know what to say to you when you have a premium baby. They say inappropriate things yeah Well, at least they're out and everything's okay, right now, they're alive.

Speaker 3 7:47

They're alive, yeah, they're alive, right.

Speaker 1 7:50

So that's not prescription of what a day in the NICU is like Exactly. That's a big one right there. They think you're going to respond to their text messages is like normal. You're going to continue your life like normal. They don't understand that you may not be able to update because you don't even know what's going on and it's rapidly changed.

Speaker 3 8:11

Right, it changes hour by hour. So often with these babies it's hard.

Speaker 1 8:16

And I felt like people and granted, they should live their life. I felt like I was in this hole and living this tunnel of like well, what's next? What's the next? Like oh, he desoldered here, or this was his heart rate, and like they were living their life.

Speaker 3 8:30

It couldn't understand what I couldn't catch up.

Speaker 1 8:32

But it was this no one, none of my friends, that had NICU babies before Right and I couldn't even explain what I needed or what I need to feel, seen Right, and it was just a really hard, lonely road.

Speaker 3 8:46

It's very isolating.

Speaker 2 8:49

And I think it's very isolating, like you were saying, because most people haven't been there and have no idea what you're going through or kind of even what goes on in there.

Speaker 2 9:02

And, sunny, you said that that was actually something that kind of I was talking about recently. That almost is hard for me to grasp and wrap my head around. Like we talked about in the previous episode, I was admitted while I was still pregnant and then delivered about two and a half weeks later but stayed in the hospital for about seven weeks total and then my boys were in the hospital for several more months after that, and that is something it's like your life stops and everybody else's continues and it's a hard thing to like, even process.

Speaker 2 9:38

I remember I had been in the hospital for seven weeks and the day that I got discharged on the way home from the hospital it was such an overwhelming feeling like I just started crying on the way home and I remember my husband be like what's wrong and I was like just looking around, like driving on the interstate, like I haven't heard the radio in almost two months. I have not been in a car in almost two months.

Speaker 2 10:05

It's very surreal it is, and it's like I've been inside of these four walls, have not. I was allowed to go outside of the courtyard a couple of times and then I got that privilege taken away, but it was. It was so surreal and it was very overwhelming to just see. I'm like all these people's lives, like they've just kept going.

Challenges and Misunderstandings in the NICU

Speaker 1 10:26

If mine has work every day like literally, you stand still.

Speaker 2 10:29

And then that continued in the NICU because I mean, my husband was going to work a lot of days but like I was there for you know, I went home and slept and then I got up and I got to the NICU and then I typically left like after dinner time.

Speaker 1 10:42

Yeah.

Speaker 2 10:43

Sometimes we were there very late, but again it's like everyone else's lives are continuing. And you're sitting in this room we had no windows and it's like this was our life and it is. It's a very surreal feeling of I don't know, just to know that everyone else is going about their normal day.

Speaker 1 11:06

Yeah.

Speaker 2 11:06

Like and like. Nothing's wrong.

Speaker 1 11:08

And you're like but everything is wrong, everything's wrong, your whole world, and friendships like you don't know how to navigate that with friendships. They don't know how to be there for you, you don't know how to let them be with a resentful for people that had easy bursts and got to take their kids home and wasn't 100%.

Speaker 1 11:25

Was I like not want to talk about it or was I upset that you didn't know about something? Yeah, I mean, I remember somebody called like the day after and what was having a really bad day in the NICU as a family member and call my mom, and it's like she was like, oh, is everything okay, I'm in the NICU, blah, blah blah, and she was like oh yeah, I just was going to ask can you like see if you can get me a job?

Speaker 3 11:50

Stop it Hard stop.

Speaker 2 11:51

I was just like I had a situation about and it's still to this day.

Speaker 1 11:56

Stop it. I cannot be. I've tried to forgive this person but, like I heard my mother say, I am in the NICU with Sarah and will, like this person, knew I had almost died two days ago and you asked my mom for a job that I still and I'm like do people not know what the NICU is? Do people not know what?

Speaker 3 12:24

Do they not understand the severity of this?

Speaker 1 12:26

I like we mentioned clearly not over it, right, clearly not.

Speaker 2 12:31

I'm still not over this, it's still like in survival mode and I just can't help you right now.

Speaker 3 12:36

Well, and you know, let's be real, there's a spectrum of severity. In the NICU, like we mentioned, you could have a baby like my oldest, whose temperature was dropping. Let's be real, that's not severe. Just being honest, like if she had gone to the NICU it would have been a few hours. You know blood sugar, okay.

Speaker 1 12:53

You want to talk about babies fighting for their lives.

Speaker 3 12:55

We're talking severe Uh-huh, they're fighting for their trying to.

Speaker 1 13:00

I mean, it's just a whole different thing, like it's like the ICU for adults, like no one ever questions, if you're like, oh, my husband's in the ICU. They're like, oh my gosh, what do you happen, and then sometimes it comes to babies and they're like well, what do you mean?

Speaker 2 13:11

Yeah, yeah, I mean I kind of hear NICU, but it's like no, that is the ICU.

Speaker 3 13:17

Exactly Neonatal ICU.

Leaving NICU With a Preemie

Speaker 2 13:19

We are literally like hour by hour day by day right now on survival yes, and like all their vital organs and yeah, I had a situation similar, but it was before the babies were born, when I was extremely sick in the hospital and I got a call. I won't share much on it, but it was very similar to yours and to this day I'm like I just still can't believe that they continued to have a 30 minute conversation with me about uh-huh yeah.

Speaker 3 13:53

See, and this is why we talk about boundaries people, they just like if someone is in the hospital, you're not asking them for favors. Oh, it was. No, let's just be real. If someone is admitted in the hospital, if someone's child, if anybody has any loved one in the hospital.

Speaker 1 14:07

Start that conversation.

Speaker 3 14:08

That's not the time to be asking for favors.

Speaker 1 14:11

You just need to say I'm sorry.

Speaker 3 14:12

I'm so sorry. Do I have any money for doordash?

Speaker 2 14:16

That is like you have all the passes my child's in the hospital. I'm sorry, yeah.

Speaker 3 14:21

Okay, we'll talk about this later. Yeah, we'll save this for another day, right?

Speaker 1 14:25

We'll circle back and I just realized, to this day I don't think they did anything wrong and doesn't understand. I think it's probably a mute point. I don't think they're going to get it.

Speaker 2 14:34

So we're just going to let that one go.

Speaker 1 14:37

And I think that point is is people that same point they did to me in the hospital? You in the hospital? When we leave the NICU, what do you want people to know about leaving the NICU with a preemie?

Speaker 2 14:49

Oh goodness, and this is a loaded question. Yeah, this is actually something I just kind of talked about in therapy this week. There's a lot that comes with leaving the hospital with a pre-meet, I think, to a lot of people they're like, oh, they're home Every time he's crying.

Speaker 1 15:10

She left the hospital with them Check them out. Oh, they got to go home.

Speaker 2 15:13

Great, oh no, it was almost like that was just starting a whole different round of this. So for a little background, all three of my boys came home on oxygen around the clock and stayed on it for several months. So basically they reached a point in the NICU where they just kind of couldn't get over that hump and we were just going to sit in the NICU for months on half a liter of oxygen, when that's something you can do at home, and so we were basically running a hospital.

Speaker 2 15:46

I remember my pediatrician saying you basically are running a hospital from your house and it's basically just like what you can do at home in order to keep them out of actually needing to be admitted. Like you can do a certain point at home and then, if they need more than they have, to go back. And I remember him saying we're asking you to be so many things. We're literally asking you to be their doctor, to be their respiratory therapist, to be their physical therapist to do all these things, like you know you have so much to think thrown at you just walking out the door and I think too, like just because they came home being a micro-premie, they were still very sick.

Speaker 2 16:33

And that was one of the things that we really, you know, that kind of caused some issues and some tension with people is we had to be so incredibly careful because their lungs were still a fraction of what it's a full-term baby's point. Just because they got to go home.

Speaker 3 16:51

Doesn't mean they're out of the woods.

Speaker 2 16:52

No, doesn't mean they're out of the woods at all. And the tiniest little runny nose from us put them back in the hospital. And we've been back in the hospital numerous times and even today. Just this week all three of my boys have been sick. We've been doing highest dose breathing treatments that we can do at home. We've skirted the line of admission all day Tuesday it was we were barely there like down to the minutes, like okay, and they're two.

Speaker 2 17:22

So we did them and they're two and they just turned two years old and a lot comes with it. They do have lung disease because they were born so early, and so we still have to be careful. Once you kind of hit that age of two, you're not out of the woods, but it is kind of a big milestone to reach. We started, you know, taking them to church at two and putting them in the nursery. We went to McWayne Center for the first time. They started Mother's Day out at two.

Speaker 2 17:46

You really can't do any of those things unless you know I was able to stay home with them, so they didn't have to go to daycare, and even from the time they were in the NICU, it was like, if at all possible, they do not need to go anywhere because it can be detrimental to them, and it's crazy how quickly they would turn corners. And so, yeah, I think bringing them home was just I don't know, I think people don't realize, you know, kind of like we were saying the complications and maybe the severity of it.

Speaker 2 18:18

There still is, and that first year was just straight doctors appointments and so yeah, anyways. But it also kind of what I was talking to my therapist about earlier this week is we had been in the NICU for over a hundred days. I think our last one was there for about 130 days. Wow, and so you're with these people and this kind of security blanket for four months and the doctors and the nurses help us steps from your door. Yeah, and they just became family to us. There was a spike in COVID when we were in the NICU and so we then, like we were because we had triplets, we kind of fought to have extra help because Right, I'm actually doing it alone.

Speaker 2 19:03

Because you've well, most people probably haven't seen this, but like they were hooked up to so many wires and there were three beds in the room but like one baby couldn't reach the other bed with their wires, so like I couldn't even physically hold two at a time because they didn't reach and so it had gotten to where just my husband and I were allowed to be there, when my husband was back at work and I was there with all three, which we could talk about that for a little while, because I don't think that was what was best for the babies but it wasn't in our control, but anyway. So I'm trying to work on feeding all three of them and holding them and all these things, and thankfully our nurses became like family and they were godsends and they would come in there and hold the other ones for me and help me with feeding and they would come in there and hang out with me.

Speaker 2 19:54

A lot it's so lonely, because it was so lonely and I was in this room all day long by myself, and I mean truly.

Speaker 1 20:02

there's no windows Like you are just yeah, we were in dark room.

Speaker 2 20:05

It's a box, it's a box.

Speaker 1 20:07

And they keep it kind of like dark at two for, like the kids the babies Right, and it is. But it's just like it's so isolating.

Speaker 3 20:16

It's truly a whole other world.

Speaker 1 20:17

It's a world and you feel so bad, Like I don't know. I always felt like I wasn't doing enough just for one. So I can't imagine just multiplying how you felt and like you physically can't.

Speaker 2 20:28

Like when she's talking about the wires and stuff.

Speaker 1 20:29

It is like I would be like please help me, and like you have to set you up and you're watching this monitor, I still have triggers to beeps and you just like watch their heart rate go down. Are you here like the oxygen? Go low and the alarms and, like you panic, I feel myself getting in hot talk. You panic, yeah, and you're just like oh my God, and then they can rushing in, or like you're so helpless you are.

Speaker 2 20:54

And for the longest time I couldn't even go in there and pick them up myself.

Speaker 1 20:58

No, no, no.

Speaker 2 20:58

You have to ask somebody to ask your nurse to come get the baby out. And eventually, once they got moved to open air cribs, like I, you know, could go in there and kind of pick them up on my own, but, like you were saying the alarms, like you know, but you had a comfort blanket, they were just steps away, like your help was they run in as there were times that I would be holding them and they would all of a sudden their oxygen sat would just plummet and they would have to be bad.

Speaker 1 21:25

Yeah.

Speaker 2 21:27

And like they're in my arms not breathing and you know, you know it's not good when they come running in and they flip the red switch.

Speaker 3 21:33

Yeah, You've never been in a hospital room and there's this like red emergency switch.

Speaker 2 21:38

Yes, it's all the bright lights on.

Speaker 1 21:39

Right.

Speaker 2 21:40

And it is like something out of like, truly like a graceful episode or something. And it's like, take this baby from me, make them breathe.

Speaker 1 21:49

Fix it, fix it. It's not natural Like that is something like I had to learn therapy, like that response of like I can't do anything to save my baby, like take my baby from me and save them that, like I'm trusting you to save them, To watch that and so kind of like you were asking, leaving the NICU was.

Speaker 2 22:07

I was just kind of talking about how weird of a feeling and kind of concept this is, that yes, we had been waiting to take them home.

Speaker 1 22:17

You want them yes.

Speaker 2 22:20

But it was the most terrifying day of my life.

Speaker 3 22:22

I was about to say, because you're going home without the nurses to come in and flip the red switch and you'd be like save my baby, because you're like, what am I going to do?

Speaker 2 22:29

And you know they convinced me like they are ready to go home and they do make you. You know they can't have any desats or any desols or all these things within so many hours or years.

Speaker 1 22:41

Time starts over Like that's a scene it happened and you're like no, I've seen it.

Speaker 2 22:45

I know this happened, but what do I do if this is at home? And there were times we had one that was the smallest and he was definitely the sickest and he, he would do good for days and days and days and then, literally he would just quit breathing and I was like I remember telling the doctors you can't send this baby home with me. It's too much. Like how can you like I? Couldn't sleep because I had this for anxiety too, but like I'd seen it and I think that's what people like I'm like.

Speaker 1 23:13

If you were in the NICU and you have seen that? Right Like you. Don't need anything else to make you believe it could happen. Like the truce of thoughts like they're already there.

Speaker 2 23:21

Like I've already seen it. Well, the worst case scenario has already happened. I mean, they just took.

Speaker 1 23:25

They take the wires off of them and they hand them to you and they're like good job, go home and you're just like. I remember being my mom, but for like no, no no, this is not appropriate. And they're like. They wouldn't even put them in the car seat.

Speaker 3 23:35

They're like no, no, you have to.

Speaker 2 23:37

And you're just like they're tiny yeah, and so I was just kind of like telling my therapist and she was kind of talking about it being like a trauma bond, you know and you're so comfortable and these people have like become family, and it is literally like you are there every single day, all day, eat three meals there. Sometimes you're there through the night, during the night, whatever, and then it is like you leave, yeah.

Speaker 1 24:00

It's like a hard stop.

Speaker 2 24:01

There's no good, there's not a progression to that, and I remember our sweet nurse practitioner coming in when it was finally time into its very day to day, still in this, because, like we talked about, they have to meet certain criteria and if, say, their oxygen drops, then that time restart that kind of clock starts over, and so it is very day to day because you're like, okay, are they going to reach the 48 hours?

Speaker 1 24:25

Yeah, I don't know.

Balancing the NICU and Home Care

Speaker 2 24:28

And so it's like once they do, and then it's okay. I remember a nurse practitioner coming in and she was like okay, like you know, as long as nothing happens tonight, like I think they're going to be ready to go home tomorrow, are you ready to bring them home? And she and I like I think.

Speaker 2 24:43

I immediately like my eyes filled with tears. She was like if you're not like, is it? I mean we can give you like a day or two, like you know, blah, blah, blah. My husband was like no, no, no, we're ready. And I was like oh, no, no, I need more time. It's funny because we've been there a hundred days and I was like, no, I need more time.

Speaker 3 24:58

Yeah, I need to prepare. How did you juggle two of your boys being home while you had another in the NICU? How did you balance?

Speaker 2 25:06

that it was hard, and actually this day today, two years ago, we were in the middle of that, and so it's been kind of a hard. Last past weekend I believe it was like two years on the dot that we brought to home and I was talking to, I think, my husband and it was such an exciting but also terrifying day to bring them home while simultaneously starting the hardest month of our life Because, again, at that time, only my husband and I were allowed in Iqiu.

Speaker 3 25:37

So I Because that was during that Delta wave of COVID, wasn't it? I think so. Wow, and that was the one that was so hard on kids and so hard on pregnant women.

Speaker 2 25:47

There were lots of deaths, I remember that from being in the hospital.

Speaker 1 25:50

Yes, at UAV.

Speaker 3 25:51

At UAV Because we canceled my daughter's first birthday it was that weekend because it was hitting kids so hard and I was like I don't even think we can have an outside birthday party. I mean UAV lost a lot of Of San Vee did too, very healthy. It was bad news. So it was just like a very Healthy young, pregnant women. Very horrible time. Like no risk factors, like it was bad.

Speaker 2 26:12

They actually had, like they started like a whole COVID mortality committee Right Based on those of this, that wave, because there was so much, there was so much, and so I remember and there were, like, some of those babies getting brought to the NICU.

Speaker 1 26:25

Right and they survived.

Speaker 2 26:26

Yeah, the mom hadn't survived. But Right. Yeah, so I was balancing two Out of the NICU On oxygen at home.

Speaker 3 26:36

One in the NICU, plus One in the NICU, the Delta wave.

Speaker 2 26:38

Yes, and the one in the NICU was still in the NICU because he had gotten very sick. In like kind of mid into July he developed something called pulmonary hypertension, mm-hmm, which.

Speaker 2 26:51

It's super dangerous and very scary it is very dangerous and at the time I don't think I realized how serious it was.

Speaker 2 26:58

So we little kind of back story in this like 24 hour period Our boys had gotten moved like kind of to the step down unit and they just weren't quite ready and did not do well in the step down unit and our smallest got very, very sick and got quickly moved back up to the NICU and that was when they realized he had pulmonary hypertension. And at the time I didn't really realize like how serious that was or really what that meant. And I will never forget being in his NICU room with one of the fellows that we loved and he was sitting there talking to me and our baby it was Harrison was so sick, laying in the bed, we weren't allowed to touch him, we weren't allowed to hold him. He was like kind of tilted on his belly, kind of like. You saw a lot of people during COVID and I'll never forget the doctor was talking to us, it was late afternoon, they were getting him all admitted and he was so close to being intubated.

Speaker 3 28:03

Like.

Speaker 2 28:03

I'll never forget. The intubation kit was sitting in his bed and they couldn't get him to sat. Couldn't get him to sat. They just kept going up, up, up, because he had been down to like maybe a leader of nasal cannula. That's why we were in the step down unit.

Speaker 2 28:17

But this happened so quickly in his poor body filled up with fluid so quickly and didn't breathe and they couldn't get him to sat and they just kept going up, kept going up. Finally they got him to sat on like 100% of CPAP, which is basically the step down from being intubated and the intubation kit I remember sat there.

Speaker 3 28:38

For a list of intubation means ventilator.

Speaker 1 28:40

Yes, so that is the tube being put in and for breathing, for yourself or your child, like this is, it's the lung life.

Speaker 3 28:47

So correct, this is the lung life, so correct.

Speaker 1 28:49

So she is staring there. You've been down this road personally.

Speaker 3 28:53

You've filmed all these things and you're seeing this.

Speaker 2 28:58

But it's still and honestly I'm thankful I look back and I'm like how did I not realize? But our nurses and our doctors, they handled it so well and were very calm and kept me calm and so I really didn't realize how serious it was, which I think now, looking back, was good. That in the moment I did not realize, and now I've seen statistics and it can be pretty fatal for premies, so again I didn't realize that at the time.

Speaker 1 29:27

But which is a good thing. Yeah, it's a good thing.

Speaker 2 29:30

It's not something you need to know when you're in the middle of it. So I remember sitting there talking to our fellow who we'd had a time we loved, and I was already fighting to get the boys back upstairs because they're just where something's happening. They were deciding a lot, they were having to be back during the night. They just they weren't ready to be on the low amount of oxygen that they were. So we were already kind of fighting that and they called a code over the intercom. No, and the fellow that I was talking to jumped up and ran and they called a code down in the step down unit.

Speaker 2 30:08

I didn't realize it was one of my other children and not until after so about 30 minutes pass, thank God, I don't know, that's one of our other babies and he comes back up and he sits down and he's like well, it's coded downstairs and we're bringing we're. I need you to. You know we're gonna bring him back up. I need you to come with me, we're gonna readmit him up here, this and that. So within about an hour I had one that was Pulmonary hypertension.

Speaker 2 30:38

Pulmonary hypertension. Close to being intubated, so close to being intubated, horrible, so sick. And then I had one that had just coded downstairs and was blue.

Speaker 2 30:49

So that was probably one of our hardest NICU days and so we got brought back up, but anyways, that was, my Harrison stayed for a month longer, so that was a huge setback, honestly, and so he had to work back to getting on that home oxygen setting. And so it was those things that, like you, saw how quickly things could change and do change in the NICU and so there is so much fear of bringing them home and I just remember I kept telling them like I can't do this at home, what do I do if something like this happens? And so yeah, and I overheard it was shift change and I overheard the night shift fellow come on and I there were, I think the UAV like NICU, the main NICU is called R&I.

Speaker 2 31:42

And I think it's 60 beds, I'm pretty sure, and I remember overhearing her say I'm most concerned with him in room, so and so making it through the night, and that's when I was like, excuse me, oh, this is bad. So that was one of the scariest times in the NICU, and so Harrison ended up staying about an extra month. He was there about 130 days.

Speaker 1 32:12

And you know, and I think it's so important, is just that backstory is like you again, we talk about world prematurity, we talk about preemie babies and they see you, they see these. I mean, they're the cutest things ever to your old boys and we talk about this day and we have the privilege of knowing your story and our listeners, but like they don't, they're like well, yeah, I mean something to her, but it really means so much to you.

Speaker 2 32:35

The road you walked and all these parents that we've.

Speaker 1 32:39

You know you saw your child. You didn't know if they would survive.

Speaker 2 32:42

You saw, them.

Speaker 1 32:43

You didn't know what to do. You've seen and heard things that parents should not have to see here. And you carry that. So this day means so much is that, yes, we celebrate our advancements and we are but that is a road that has been walked, of grief and loss, and trauma. And this day reminds us of that.

Speaker 2 33:02

It does?

Speaker 1 33:03

it brings it back and we fight for it. But then we also fight for this whole like don't ask to come see the babies. So that's why I'm not coming to this event.

Speaker 3 33:14

Respect whatever boundaries I have in regards to health and wellness. I don't care if you think that's allergies.

Speaker 1 33:19

What if it's not?

Speaker 2 33:20

Right, oh, that was one of. We brought our boys home in the fall.

Speaker 1 33:25

So, cold flu our spring season September and October.

Speaker 2 33:28

so we were just getting into that and you know you do it. It's hard. You want people to meet your baby and you want to be able to go to these things and that was another thing when you see friends bring in their baby everywhere and doing all these things.

Speaker 3 33:43

It's a reminder that we can't do that, and that's another grief right there.

Speaker 1 33:49

It's a loss of what you want to do, and you hit holidays, I mean, you went back, back, back, so it was like a constant oh, the family's together here.

Speaker 2 33:57

Oh, we're doing this with Santa here and you're just like I can't and you just like you constantly feel like the bad guy and I think that's probably just the mom's always gonna throw up that way and you just have to remind yourself that you are doing what's best for these babies. And I think one thing for me was I was like I even to this day I have watched them fight to live from the second, they came onto this earth.

Speaker 2 34:25

And I'm gonna do everything in my power to never be in that position again. And I mean, I think you just have to remember that you have to do what's best for them you are their only advocate and they can't advocate for themselves. And it's hard and sometimes you want to be like hope will probably be fine if we just went and did this one thing, and it was two years that we really tried to minimize, and that's two years.

Speaker 1 34:54

Minimize.

Speaker 3 34:55

People need to repeat that.

Speaker 1 34:56

Two years that she had to essentially live in this bubble and like To keep her children alive Readmission to keep alive. So so sorry she didn't make that one gathering.

Speaker 2 35:07

Because you hear it and I think people hear it, but it's again. It's just one of those things that you kind of don't understand until you've been through it, but like you're running nose.

Speaker 1 35:17

Yes.

Speaker 2 35:18

And that is something you hear.

Speaker 1 35:19

I think it's just allergies. That's excuses. It gets written up so many times Well it may be allergies, but it may not. Like we, I'm sorry we can't risk it.

Speaker 3 35:28

Well, just like RSV presents as just a routine head cold for adults. It can be very, very detrimental for babies, All three of our boys were admitted for RSV and they had had the RSV vaccine.

Speaker 2 35:41

Thankfully, the RSV vaccine was huge because yes, they were admitted, but it could have been so, so, so much worse. You know they needed extra oxygen and just some extra breathing support.

Speaker 3 35:54

And for a few days Were they intubated for it. No and see, that's the thing.

Speaker 2 36:00

And kind of they say with that synergist is it's kind of they say that, like with the preemies and stuff that synergist is not necessarily to keep, obviously to keep them from getting it, because it's not necessarily how vaccines work. But you know they may still get it, but it's the difference in the ICU and just a regular hospital admission.

Speaker 3 36:20

It's just kind of how we're exposed and like oxygen support versus being intubated. It worked, I mean it worked, it did, it will got it.

Challenges and Support for Preemie Parents

Speaker 1 36:28

And that's the thing that was so difficult to explain to people at RSV is like there is not like an antibiotic you can get for.

Speaker 3 36:33

RSV.

Speaker 1 36:34

It's a virus that has dryness course, Right so like you have to literally watch it happen, and that's what was so difficult for people to understand. They're like, well, can't you just take a medicine? Well, no, and then you know I think I want to touch on too before we close this is you don't need to put on anything extra for a preemie parent of saying, well, is there going to be something wrong?

Speaker 3 36:57

I don't ask intrusive questions.

Speaker 1 37:00

What does this mean for them? You know I've been asked that. I'm sure you've been asked that it is nobody's business.

Speaker 3 37:06

Let the parents tell you what they feel is appropriate to tell you.

Speaker 2 37:12

And I mean it's nobody's business, but also you don't know.

Speaker 1 37:16

We don't know Day by day.

Speaker 2 37:17

We didn't know.

Speaker 3 37:19

Exactly, you don't know everything at birth.

Speaker 2 37:21

You don't know how they're going to develop.

Speaker 1 37:24

And we already wondered this, and we already are play worst case scenarios in our mind. Well, naturally we don't need any extra help.

Speaker 3 37:31

Yeah, don't help us. We got it on our own, yeah.

Speaker 2 37:33

I don't need you to remind me, we don't need more thoughts. Yeah, and you're already living that, like you know. Are they? You know, you see them do one funny thing and you're like oh God.

Speaker 1 37:47

Well you're going. I mean, every time they go to a pediatrician visit, you are going to be told if they're on the milestone chart or they're on the growth chart.

Speaker 2 37:54

You don't need any extra help. But yeah, and thankfully, our boys have done phenomenal Right and I mean they're doing amazing. Right now we are in therapies and things like that, just kind of even now, kind of more preventatively. But you know, one of ours didn't roll over until nine months old.

Speaker 3 38:21

Yeah, Well, but when you look at the adjust today, yeah. All those medical complications. That's very appropriate.

Speaker 2 38:29

But as a mom Into the outside world, they're like well, I do remember. Now I don't get it so much, obviously because they are really doing everything they should be, but that was a big thing like being out and probably you know people make comments. Even children like being at the hospital or doctor point well, how old are they? And then you tell them how old they are and they're like, and then you have to say are you sure there what?

Speaker 1 38:53

And you have to be like then you have to say, oh well, but they were born at this and this is yeah.

Speaker 2 38:57

And you feel like you have to justify, you have to explain. You know people are like oh, but they're not walking, like no, they're not.

Speaker 3 39:03

And they make very much often comments that they're surviving Right and they'll get there.

Speaker 2 39:08

But it's been eye-opening what people are comfortable asking and saying. Totally so.

Speaker 3 39:13

Here's the thing If y'all. If someone decides to ask a mom how old are your babies and you think, oh, my goodness, that nine month old looks like a four month old, your response doesn't need to be, are you sure? But why aren't they meeting such and such milestone? You tell that mom she's doing great and that baby's great.

Speaker 1 39:29

You need to tell that mom.

Speaker 3 39:30

you know what that is a wonderful stage. It is so such a sweet stage. I'm so happy for you Be positive.

Speaker 2 39:37

Because I promise they are ready, they already know, they already know they're well aware. Their child's not sitting up and, yeah, I mean they got there and I mean, my goodness, look at their start to life Like they are just like miracles, right.

Speaker 2 39:54

And so it's been amazing. We've, you know, had our fair share of all the therapies and they go to the Bell Center, which has been incredible. We love the Bell Center I can't say enough good things and all three of our boys are there now and it's just been great. One started going as an infant and then the other two started as toddlers, just kind. Of. I signed them back up for this semester actually and my husband was like what, you kept all three of them there, they're fine. And I was like I'm just not ready and that's okay.

Speaker 2 40:26

To not have like a super close set of eyes on them.

Speaker 3 40:29

Yeah, but you know what, if you have resources available to?

Speaker 2 40:32

you use them? Yeah, and we're. Yeah, I mean we've. That's been one thing like going through all of this. Gosh, we're so fortunate for what we do have here in Birmingham. I mean both for, like, the care that I went through, the babies, the NICU that they were in. I truly believe, because other people that I've met and other people that I know and seeing their outcomes, like, I truly don't believe any of our outcomes would have been what they are how do we not been here at UAB? And just all of the resources that we do have available here that you know we've learned people drive hours for they do Right Even hours.

Speaker 1 41:15

There's moms that drive over two hours.

Speaker 2 41:16

Oh, absolutely For OB care and the boys being in like outpatient physical therapy and OT and people would drive two hours there and back twice a week.

Speaker 3 41:27

Yes.

Speaker 2 41:27

For their kids therapies, and I'm like it's seven minutes from our house and so I think you know it's easy to take that for granted all that we do have here, but the NICU itself too. I mean there were babies being transported to the UAB. Nicu every single day flown in and I remember they told us when we, because MFM was that way.

Speaker 1 41:47

Yeah.

Speaker 2 41:47

Most people were not from Birmingham. They were coming from I mean basically the whole southeast.

Speaker 1 41:53

Yeah.

Speaker 2 41:54

Like a lot of them would have to get apartments and they were coming from Florida and Kentucky and Georgia and the Carolina was just to see UAB's high risk OB appointment.

Speaker 1 42:07

Well, I want to celebrate you and the sweep, that's right. Boys on this day, and but I think it's really important that, like, yes, this is a celebration, but this is awareness. This is the everyday conversation and let's not make things harder. Let's move it forward with how we're supporting the premium parents on an everyday basis. We're not asking those questions, we're making it better, but we love you.

Speaker 2 42:27

Thank you for coming back. Thank you for your vulnerability.

Speaker 1 42:30

Yes, we're going to post some super cute photos of boys this week, as I'm so, so you guys can get to know her, but follow her and follow us. But, guys, it's a special day for us, but thank you for being part of it and all right, guys, till next time and see you All right Returnal.

Speaker 1 42:46

mental health is as important as physical health. The previous podcast was created for and by moms dealing with postpartum depression in all its variables, like anxiety, anger and even athlete. Hosted by CEO founder Sarah Parkhurst and licensed clinical social worker Whitney Gay. Each episode focused on specific issues relevant to pregnancy and postpartum. Join us and hear how other moms have overcome mental health challenges, as well as access tips and suggestions on dealing with your own challenges as moms. You can also browse our podcast library and listen to previous episodes at any time. Please know you're not alone on this journey. We're here to help.