Journey of Hope Podcast - Episode Twenty

For parents of medically fragile children, navigating a complex medical journey can feel overwhelming and isolating. In this episode of Journeys of Hope, host Rebecca Solomon sits down with Justine Mohr who shares her personal journey as the mother of James, whose medical challenges began at birth, and the lessons she learned along the way. Justine also discusses how her experiences as a parent inspired her to help shape Blythedale’s Parent and Family Education (PFE) Program. Through Justine’s story, we explore the importance of parent perspective, education, and support in helping families navigate the challenges of caring for a medically fragile child.

You can also listen to this episode on Apple Podcasts, Spotify, and YouTube.

TRANSCRIPT

Rebecca Solomon (00:05)
Hello and welcome to Journeys of Hope, a podcast from Blythedale Children's Hospital inspired by the strength, resilience, and unshakable spirit of medically fragile children. My name is Rebecca Solomon. Today we're joined by Justine Moore, who knows firsthand how critical parent and family education can be. In 2019, her son, James, was admitted to Blythedale as a baby with highly specialized needs.

high PEEP support requiring both a trach and a feeding tube. James was able to go home with around the clock care. And inspired by that experience, Justine and her husband Bobby helped create and shape Blythedale's Parent Family Education Program, improving how families are prepared to bring their medically complex children home. Justine, this is such an important topic. Thank you for being here.

Justine (00:59)
Thank you for having me.

Rebecca Solomon (01:01)
So can you take us back to the beginning? Tell us a little bit about James's earliest days and what brought you to the hospital first to Mount Sinai then to Blythedale

Justine (01:11)
James was born at 24 weeks and I think three days and he was born in our apartment in Brooklyn unexpectedly. And so from there he was taken emergently to the hospital closest to us at the time, which was in Fort Greene. And it really was a community hospital. So, you know, had a level three NICU,

it wasn't an equivalent to Mount Sinai, but it was the closest hospital that they could take him to. And while we were there, you know, I think we have another son too, who now is nine, but then was three. And with my first pregnancy, we had never been in NICU. So we just really didn't know what we were walking into in addition to the fact that

It was just so unexpected. It wasn't a part of our pregnancy plan. there just, it hadn't been flagged that this would happen. And so it was really just a shock to be there. And honestly, like an extremely scary experience to have him taken from our apartment, emergently separate from us and in different ambulance to this community hospital where we spent the night kind of not knowing if he had made it.

and too scared to ask, to be honest. And like honestly, couldn't even imagine what, how big he was, what he would look like. You know, it's just nothing that we had ever known and we hadn't known anyone to have experienced it. So just that whole night of not knowing and just being scared of what was happening was extremely scary. But my husband found out when they did rounds in the morning, they invited him up. I was still like in the bed.

and he saw James for the first time and he was a pound, a little over a pound. And he was the size of an elf on the shelf. Like someone saying that is true. Like those babies, the babies at that age are really like the equivalent of an elf on the shelf. So really tiny. His skin was still transparent because it hadn't, you know, it hadn't changed, um, being so early. And he was in a, an incubator with like all of the equipment. And so my husband had taken pictures and shown them to

which were really, in all honesty, scary. I never seen anything like that. I really wasn't sure what that meant. And the days following were quite scary because...

you just didn't he was so fragile and he you know had fought so hard to make it from a non-hospital setting to survive and be in the hospital setting was already a feat in of itself. But we spent the next two to three months there just hoping he would stabilize like really learning as fast as we could the situation we were in and kind of better understanding what James's challenges were related to kind of

getting out of the hospital. You know, I think when things like that first happened, people are always like, it'll be okay. Like it'll be a couple of weeks. It'll be a couple of months. And then the timeline kept extending and he kept not getting better. And so at some point we realized that this hospital wasn't sufficient for his care and he needed to go to a hospital that better understood like a longer term strategy for a child who needed a ventilator. And so we toured different New York hospitals and ultimately chose Mount Sinai because they had

I had a doctor there that a pulmonologist that like understood the longer term plan. We transferred there again, not thinking we would be there for that much longer. But then once we got there, he was diagnosed with tracheal malasia, which is when your trachea kind of collapses on breathing. And that with in combination with his weak lungs from prematurely made it impossible for him to breathe. So they then told us that he would likely need a trach, but they kind of posed it like it was a

decision which we then realized that it actually wasn't a decision it was something that he just like needed to have but I think they understood that for parents it was something that's like very hard to absorb the idea that your baby would have a hole in his their throat and that he would be connected to a ventilator via like a tube it's just a lot to think about if you've never thought about it before but ultimately because of the time he would need to be ventilated if he wasn't if he didn't get a trach he wouldn't be able to move

you know, he would be receiving ventilation through his mouth, which would mean he would need to be stabilized, which wouldn't allow mobility, which is obviously important to development. So, you know, kind of at their...

recommendation at four months he got a trach and at that time he got a gtube placed also which we also didn't understand because he was interested in eating by mouth but they were you know they kind of informed us that this was it kind of goes hand in hand like if you have a trach it's very hard to digest the volume of food you need to grow so he did that we did that that was an adjustment and then we were there at mount sinai for another

seven months, so by the time...

You know, they deemed that he was ready to transfer. He was around 10 months old. And it was COVID, which I feel like it was COVID before people realized it was COVID. So it was February, 2020. He was finally, you know, they agreed that he was ready to be transferred out. He actually got accepted to another hospital first, another hospital like Blythedale called Specialized in New Jersey, and then ultimately got rejected because they were afraid

to take him on because his needs were still quite high. And Blythedale thankfully agreed to take him. But he came to Blythedale I think with one of the higher supports that they would allow, which I think at the time, I can't even remember, I think his peep was like 15. It was still very high where I think the, and I don't want to misspeak, but I feel like usually they wanted a peep of like 10 or lower and I feel like James was like well over that.

And yeah, and so after 10 months, he transferred to Blythedale and that's where he was for another eight months.

Rebecca Solomon (07:26)
What a wild story. I mean,

it's almost the last thing any new parent, I know you had a child already, but any parent of a baby would ever imagine, right? I mean, as if from delivery to labor to, I mean, everything you just painted for us is really unbelievable. thankfully for what it's worth, and we'll get into that, Blythedale ended up being...

that place for you

Justine (07:56)
Yeah.

Rebecca Solomon (07:57)
you. I think everything does happen for a reason. And in many ways, although it was a unique case, as you mentioned, unique in a sense for Blythedale we're so glad that you are now part of that Blythedale family and that Blythedale was able to give you and your family.

essentially what you guys needed for for James. So thank you. We're glad to glad to have you. Whenever that was right. So

Justine (08:25)
Yeah, exactly.

Rebecca Solomon (08:29)
you're at Blythedale you know, your son is now 10 months old. Pandemic is getting ready to take off. my gosh. Okay. So

Justine (08:37)
Yeah, I think we transferred March 1st, 2020 into Blythedale. yeah, truly, like

think the first week, I remember reading the newspaper of the Westchester man that like, I don't know if you remember this, but like he was in Midtown and yeah, exactly. So I feel like that was

Rebecca Solomon (08:51)
I remember everything. Yeah. Yeah.

Justine (08:54)
the first week and then following that, know, Mount Sinai became like kind of like COVID central and we were just so grateful that we were.

Rebecca Solomon (08:59)
Okay.

Justine (09:02)
We happened to get out before that happened

Rebecca Solomon (09:04)
Yeah.

Justine (09:05)
because that would have been a really hard environment to be in.

Rebecca Solomon (09:09)
Aside from COVID,

Justine (09:11)
Yeah.

Rebecca Solomon (09:11)
unless that's your main challenge, but what would you say were some of those biggest challenges that you and your husband Bobby faced while learning to care for your son in the hospital?

Justine (09:22)
Yeah, I mean I think a NICU environment is really different than what Blythedale provides.

when you have a child on a ventilator and you are not a doctor and you've never experienced that before.

it's obviously very frightening. You don't feel until you really understand what it is and kind of accept that this is like the status of like how you will care for your child. It's still a foreign concept, you know? So like in the NICU...

You know, your child is always like attached to like a million probes and often has like a, you know, an IV in his arm and like, there's just so many additional attachments to their body that make it really hard to even like pick up your child. And like, you would need like a nurse to kind of help you position your child on you and like just holding him and like touching him and being with him. There felt like there were so many barriers to it in addition to just being

in an environment that felt very like, I mean, it was a NICU. So it wasn't like a warm environment and we

Rebecca Solomon (10:24)
Right. Warm. Right.

Justine (10:28)
never made it to like the healthy side of the NICU. Like I've actually in my life still have never seen the healthy side of the NICU, but like he was on the sick side of the NICU. So there were constantly alarms going, there were constantly like codes and like just things that just make it an environment that doesn't feel comfortable and one that is constantly reminding you of how fragile your child is.

you

just naturally just like don't get the chance to experience parenthood in the way that you normally would.

so moving to Blythedale was like a big difference in that there was like, there were windows, for example, like, you know, the city hospital has like very few windows. It's always dark. there were windows, there was daylight, you know, you were encouraged to like learn how to care for your own child, which I feel like in the NICU was very much like the nurse is caring for your child and you were there, you know, to love your child from a distance kind of. and so I think Blythedale had.

you know, that was its main goal is to like create a new type of relationship for you and your child even though they were medically fragile. And I remember the first bath we gave.

by ourselves was like extremely scary because he had a trach which can't go underwater and like we'd never done it by ourselves all by ourselves like in the NICU we did it a couple of times but with like heavy assistance and like he had so many things attached to him in the NICU it was like almost impossible to give him a bath.

Was it Blythedale was more possible, but like you definitely like still were getting comfortable with the idea of like, how do you have water next to a trach and all of those things. So being in Blythedale was like very transformative in our ability to like care for our child in a way that felt more normal, you know, in a way that you wanted to, but still not enough, but that's, you know, equipment kind of separated you from being able to do it in the way that you like we did for our first child, obviously.

Rebecca Solomon (12:27)
such a clear difference between the

two places and almost such a way up Blythedale to set you up for that success.

Justine (12:36)
Mm-hmm.

Rebecca Solomon (12:38)
Anything from being able to hold your child and nurture them. But also, like you said, like giving them a bath, that's something you do. And like, you can't be scared to give your child a bath, right?

Justine (12:49)
Yeah.

Rebecca Solomon (12:49)
And then obviously some of the more complex things.

At that time, once you transitioned to Blythedale and you were in it, did you feel prepared to eventually bring him home? mean, you knew that was the ultimate goal, was to bring him home. Did you feel like you would be able to do that? Why or why not?

Justine (13:11)
I mean, I think that a parent that's been in it, or parent going through, a parent that's been in a situation we've been in, I think you start to learn that.

the prognosis for home is not very clear. know, and I think it, in our case, it continued to extend and like new discoveries were found about like why he couldn't go home or why he wouldn't go home yet. You know, his peep would go up, his peep would go down. I feel like...

In all honesty, when we got to Blythedale, we weren't even really sure when that would be. Well, you know what I mean? Like there wasn't like a clear like, it will be in two months, it will be in three months, it'll be in a year. It just like was very...

vague. mean, I think our goal was to bring him home, but I feel like the actuality of when that could happen was not clear. He wasn't even on a portable vent. You know, he was still on like a standing vent. He still had a peep that was like a double digit, like he wasn't stable. And so, you know, I think that we, we really kind of started to approach it more day to day and not think, overthink like what the future was, because I think it

you had already, we had experienced so many disappointments related to what we thought was going to happen versus what was happening. And so I think it was more a matter of like figuring out how to make it, how to survive the day to day and learn what we could and you know, like do the best we could for James and help him grow within the environment that he was in. And because of COVID at that point, we could only have one parent at the bedside. Our son couldn't be there. So it was a very fragmented.

environment.

And yeah, we were just kind of living this very daily life that was

Rebecca Solomon (14:58)
See you my day.

Justine (15:02)
strange to be in because I feel like that's not normally how you live your life, you know, like, I feel like you're always kind of thinking about what's next. But like, yes, we had that goal, but it just wasn't apparent, like when that would happen.

Rebecca Solomon (15:14)
Yeah.

And were you both able to be in the hospital with him during COVID or just one of you?

Justine (15:18)
Well, no, because

we, you know, during COVID, we then had to move to like my in-laws who lived an hour away. We had another son, we have another son. And we could only, the hospital would only let you have one person at a time.

Rebecca Solomon (15:31)
Right.

Justine (15:31)
So I feel like it was mostly me. And, you know, we, on the weekends, we would kind of try to figure it out, but it's...

It was hard and we didn't, you know, I feel a lot of guilt because we didn't spend the night because we had another child and it was COVID. It's just like, there are so many things that are.

difficult in that situation for any family

Rebecca Solomon (15:52)
yes.

Justine (15:53)
that I think it's like in every family situation is really unique. So I think it's more a matter of like, how do you kind of maintain optimism without being certainty of what the what you're optimistic about? And how do you try to do what's best for your child and your family in those moments kind of at the daily on the daily basis, you know?

Rebecca Solomon (16:15)
Absolutely. Yeah, COVID did not make anything easy for anyone. It just made

Justine (16:20)
No.

Rebecca Solomon (16:21)
an already difficult, challenging situation even more challenging and something else.

Justine (16:26)
Yeah, very isolate. I mean,

it's already an isolating situation. It was just more isolating, you know.

Rebecca Solomon (16:31)
Yep,

yeah. So turning a little to Blythedale's PFE program, right?

Blithale

Justine (16:36)
and

Rebecca Solomon (16:37)
offers tailored education and training from the support of many disciplines, so families feel competent and confident bringing their medically fragile child home. Justine, how did you first get involved in helping shape our parent-family education program?

Justine (16:53)
there was this idea that there should be a training program, which, know, obviously training for home was always a focus at Blythedale, but maybe formalizing some of the programming around it.

wasn't the same, you know? And I think that it's incredible. I mean, I've only been back a couple of times since to see like what it has manifested into, but like it's a much more robust situation than I had when I left. But I think it was really like, it was amazing to kind of work one-on-one with Angela to think through.

the question, you I had questions and I'm also like kind of an A type person. So like I also like created my own booklet of like a care guide that, you know, I used to like make sure that I felt comfortable with everything he needed. That then I shared with Angela who kind of gave me feedback and like I think I shared it with her after and I don't know what's happened to it since, but it was like a guide that I made for James to make sure that I could.

understand everything that he needed and make sure that like I could communicate it to anyone that was part of his care team. But yeah, I mean, I think it's kind of the same like for us it was survival, you know, for her it was like the creation of a program and I think that the happenstance that they happened at the same time it's like I think I am also the type of personality where it like made sense for like me to like work with her because I was thinking in that kind of programic way because that's like the way I think.

Rebecca Solomon (18:26)
Yeah.

Justine (18:27)
And yeah, mean, I think it's amazing what they've created. And I'm like really happy to always be connected to families if they like need to, you know, understand better what's coming on the other side, which is honestly like an overwhelming thing. Like there's no way to say that it's not, it is, you know? And so

Rebecca Solomon (18:48)
yeah. Right.

Justine (18:50)
I think it's like,

kind of understanding that that's the case. It just is. And so you just really need to have support, community, and education to help yourself feel equipped. And then just know that when you get home, you have what you need, but it will always be scary. It will never not be scary.

Rebecca Solomon (19:11)
Right,

right. You mentioned Angela and I just want to let our listeners know who she is. Angela Larkin

she helps these families.

basically do what Justine is talking about, right? Getting the tools and the resources and the education that they need, they learn at the hospital while their child is literally there. And so when it's time for them to go home, they're able to continue to care for their child. And in many cases, as Angela has said over the past, these families are able to...

in the event of an emergency from home, they're able to respond more effectively and quicker and

it's just that you don't learn it overnight. It's something you learn while you're there. Now, Justine, as you said,

There always has been sort of a system in place to get the families the education they need. But what gaps did you notice in the system that families like yours were experiencing?

Justine (20:12)
I mean, I think that you would, I'm trying to remember like what it was and what it, and I'm not exactly sure exactly like what it is, but I think that like, you know, even a trach change, you would, I think you would have to do it a certain number of times and kind of then you would be qualified. But I feel like even changing a trach is a very scary thing for.

a family member to do, like a family to do, because it's like, you're just a person that's never had any medical interest and now you're responsible for changing their airway, you know? And so I think even having like a setup to like where you have, you know, like, I don't know what they call them, like a model, you know, what are they called? Like a dummy? I don't know what, like a mannequin.

Rebecca Solomon (20:57)
yeah, a mannequin,

Justine (20:59)
Yeah, like a mannequin to

Rebecca Solomon (20:59)
dummy, yeah.

Justine (21:00)
practice on in an environment that's not just like a random table, you know, like I

Rebecca Solomon (21:04)
Right.

Justine (21:04)
feel like kind of recreating what the situation actually would look like without the stakes being your child's and or like kind of in a very abstract environment, like.

that was like a gap. Like I think the the current training at the time was like you do it on your child and then you have this like mannequin baby but you're on it at a table in an office room. You know like it's a very different non-realistic experience or the stakes are very high and you're with your child and it's like very scary so you can't like it's like your emotions are heightened. Where I think they create they recreated like what it might look like at home to have you know a bed and all of these things like so that you can imagine.

what it's like to be at home, which I think is honestly like the biggest thing that was missing is like what does it look like to be at home? Like yes, you have a ventilator in the hospital. Yes, you have alarms. Like what does that look like when you bring it home? Like how do the alarms look? How do you have your Gtube bag? And like for me, the way I like was able to visualize is connecting through families on Instagram who had kids with trachs. But without that, there was really no model. You know, it's not like you

and call your friend and be like, what did you do when you brought home your baby with a drink? And so the creation of this environment in the hospital, I think is really good to know the equipment you need, like to know practically what you need, you know, instead of just being like, well, you need a cart. Like what kind of cart, what model cart, like all of those things are.

They're small questions, but like when you're really trying to recreate like an environment that supports a child like James, you need that information. And I think they've now been able to create that. I remember actually now I'm remembering Angela came and visited us after James came home to see like what our environment was like. Because I think it's, you just don't know. I mean, even Angela wouldn't have known until you go to a home, you know, like you don't know until you know. And I think it's like having visual representation.

understanding before you go home like really helps like it feel less scary and it helps you be prepared.

Rebecca Solomon (23:14)
Yeah,

definitely. So was there a specific moment for you where you realized, okay, this needs to change, you know? Or I guess you probably didn't maybe realize it at the time, but maybe when you brought him home, you were like, okay, that should have, we should have had that there. I mean, other than what you just mentioned, was there a specific moment for you guys changing of the trach or something specific?

Justine (23:37)
I mean, honestly, like, I think we were, it's like, I don't even think I could have intellectualized it because we were just trying to like survive it. You know, like, I think

Rebecca Solomon (23:45)
Yeah. Yeah.

Justine (23:47)
that like, there were definitely like things where you're like, okay, nursing is a problem. What will I do in an emergency? Like, how will I know that the people around me know what to do? Like, you were trying to answer all these questions about like the potentialities of something you've never lived. And so I think we tried to prepare

the best we could, but like, yes, if someone could have helped us do that instead of us kind of like individually sourcing information and figuring it out.

that would have been really helpful because I feel like it's tricky. you know, and on one hand, every child is unique and the needs of every child are different. But Blythedale is a community of like unique babies and they experienced enough of a certain type to be able to give that information. So I think the providing of that information now in a more clear manner, I think is like probably the biggest gap that we were trying to kind of fill for ourselves as we were like living it, you know.

Rebecca Solomon (24:46)
Yeah, well, and then things slowly but surely changed. Talk about that collaboration that you had with the hospital team. What did it look like when building a better program, a better PFE program?

Justine (25:02)
I mean, yeah, I mean, honestly, like I think when we left the hospital, it was still at the very beginning, you know? Like I think that they had just created a room. Yeah, like I think that it was, I don't think we, I don't think I would have said I understood I was like helping build it, because I was just trying to do what we needed for us. And then working with Angela to like...

better understand. Like she was kind of, and I know you would know this, what her background was, but like

she was able to explain to me certain things that like questions I would have like, okay, well what happens when his trach size changes or like how many of these types of things we need. was kind of, it was more like an organic, it's not like I was like in an, you know, understood the project. I was just like doing what we needed. So I feel like it was more.

Rebecca Solomon (25:50)
Right. Right. You weren't like, this is going

to be the how PFE looks. This is what we need to do. I want to help. was more inorganic building, which helped them

Justine (25:57)
Yeah, no, it was more like these are my emergent questions, like I'm worried about things.

Rebecca Solomon (26:03)
figure it out and learn what

Justine (26:04)
Yeah, so I think

Angela was able to take the questions I had or like the information I was gathering and like the things I needed and say like, okay, this is actually something that other people might need. You know, like, I

Rebecca Solomon (26:16)
Yeah.

Justine (26:16)
think that's more the way the process was. It was like, I was like under duress being like, okay, how do I figure this out? These are my questions. And because I think I was like really trying to be organized about it on my side, I think.

I think every parent does it, like the way I was doing was probably just very direct and specific in a way that like might not have been as clear with other parents just because I was like literally putting together a PowerPoint document. You know what mean? Like, so I was kind of going through an agenda

Rebecca Solomon (26:43)
Yeah.

Justine (26:45)
that I was filling in. Yeah.

Rebecca Solomon (26:47)
That's really cool because I think in the moment you may have been concerned or had questions or didn't feel like you knew what you were doing maybe at times, but actually it was, that's how PFE works. It's building.

that collaboration between a family, the caregivers and the educators, the nurse educators at Blythedale and having those questions and getting those answers and from Angela's side, seeing what your home looked like and what the setup would be like, that helps them learn it. So it really does go hand in hand.

Justine (27:25)
Yeah, and I mean, I think it's so lovely to hear that it was so helpful to her, because I feel like for me, was just really like, she was just helping me answer my question. But

Rebecca Solomon (27:37)
Yeah.

Justine (27:38)
I think because it was early days, it probably was impactful in a certain way that I didn't even understand, because I was just trying to make sure we were ready.

Rebecca Solomon (27:48)
Yeah, yeah,

that's cool. So your son was discharged home with high PEEP. That's that ventilator setting. Usually it's used in severe respiratory failure for someone who may not know that. So what did that transition feel like for you and your family when you found out, you're going home and then when you get home, tell us about that.

Justine (28:14)
Yeah, mean, it was kind of, I mean, like he got discharged December 23rd, so two days before Christmas.

Rebecca Solomon (28:22)
Okay.

Justine (28:23)
And I think, you know, in the month prior, we'd been trying to fill nursing, but it was COVID and nursing is never easy as everyone who...

Everyone knows going home. Finding nursing because you need 24-7 care, it's just like it's impossible to find like a fully staffed thing. So it's not like you go home and you're like, have nursing set. Like you don't.

And that's just the reality of going home. But I think that, you know, for us having another child at home, feeling separated all the time, I feel like the holidays are really hard.

It felt so amazing to have him in our house.

And it was like the best Christmas gift we could have asked for to have him home.

But it was scary. It's like, I think ironically, like it was the best day and also the scariest day to be like, okay, now I'm taking on full ownership of like making sure that we know we can support him, you know, and like there is no choice in the matter. Like you just have to do it.

we felt ready, but we were also, we had never done it for 24 hours a day in a non-hospital environment, you know, like I think we would have

felt very comfortable being like we're the sole caregivers without nurses in Blythedale because you like know that there's always something just like right next to you but like being in a home it's a totally different feeling where you're like okay if there is a medical emergency that requires someone special like besides us like who is it going to be it's just us you know

Rebecca Solomon (29:53)
there.

Justine (29:54)
so I think Blythedale like made you feel like you were ready to like you know

you know, give him oxygen and do all these things that like, you know, we practice like many times, but it's like a very different thing like when he's home, you know, to be like, now it's really just on us. And like...

Rebecca Solomon (30:12)
I

mean, probably when he got home, those first few days and weeks, you probably really then learned almost just so much more, even though you had that knowledge, but you really

Justine (30:25)
Yeah.

Rebecca Solomon (30:26)
was doing it hands on, literally, that gave you the even more confidence that you could ever have.

Justine (30:32)
Yeah, you get

more confidence as time goes on because you experience more things. You understand better like what it actually is. Like what is what you thought was scary is not scary. What you know might be what you might not have thought about something is something like, but you learn, you know, I think ultimately by the time that you're discharged from Blythedale like any family knows their child the best. Like, you

Rebecca Solomon (30:54)
Mm.

Justine (30:55)
know, like every nuance of his peep setting, every like thing that like

a random doctor might not be able to understand about your son or child right away. Like you are the medical professional and I think over time, especially the time we were in the hospital, that amount of time, you realize you are a medical professional of your child, you know, and there's no one actually more qualified. And so once you kind of transition that in your head that like the doctor is not the expert of your child, you are.

like that gives you the confidence to know that you can like better understand like what the warning signs are for a desaturation or like what the things you need to do you know like what position you need to be in to do x like i think that's just like a process that happens to you when you're in the hospital for a long time and i think by the time you graduate kind of with the tools that you're being trained on at Blythedale you do feel ready to a sort but you're still scared because that's just like it's a scary thing to like sign on to you

But the trade-off is, you know, way worth it. You know, there's nothing like having your family all together after being separated for like over a year and a half. And that's something that, you know, we're forever grateful for.

Rebecca Solomon (32:14)
Great. And so I assume I know the answer to the next question, but there wasn't a specific kind of support or education that made the biggest difference in helping you feel confident at home. It was kind of like, from what I'm gathering, a combination of all of the above.

Justine (32:28)
Yeah, because I think it's like a process. It's like an identity

Rebecca Solomon (32:30)
Right.

Justine (32:31)
process as a parent to be like, I'm not just a parent, I'm a medical parent. Yeah, you kind of realize it over time.

Rebecca Solomon (32:35)
like switching that in your brain to be, yeah.

Justine (32:39)
Like, yes, my job is to parent my child, but I'm also their medical provider. You know, like I think kind of as adopting that as part of your identity, like.

is something that happens over time and like information gathering and like being trained on things like happens over time. And so I feel like it's yeah, it's like an accumulation of things as opposed to one single thing. For me at least, like I'm sure some people might have had a specific moment, but for me it was like many, many

Rebecca Solomon (33:07)
aha moment. was, yeah.

Justine (33:10)
things that kind of led to that moment that like, okay, this is like, you know, this is what we, this is we're ready.

Rebecca Solomon (33:19)
Well, a lot has happened since you left the hospital. James is now six years old,

Justine (33:25)
Mm-hmm.

Rebecca Solomon (33:26)
six years old, and he has reached incredible milestones coming out the G-tube, being decannulated. Now he's skiing and swimming, which is wild. What have

Justine (33:35)
Yeah, I know.

Rebecca Solomon (33:37)
those moments meant to you?

Justine (33:39)
I mean, honestly, like I was thinking about this, like.

You know, your world is really small when you're in the hospital. You're just like, you drive to the hospital, you go to the hospital, you go to that one room, you do this like two things, you go home, you do it again. And then you go to Blythedale and it's like, you go to the hospital, you're maybe able to bring them on a mat, you're able to hold them. Like your world slowly expands a little by little. And then when you get home, even when we were home.

for very long time, my husband and I were scared to be in different parts of our house. He basically was either in our living room or he was in his bedroom. But we never were on the opposite end of the house in case an emergency happened. So the first time we took him from the living room to the kitchen was like a freeing experience. You're kind of like, oh, I'm in another room with him, which is something you totally take for granted when you have a well child. You're just carrying him everywhere, doing whatever.

So then each moment like that, so like kind of going from the living room to the kitchen, then eventually like, you know, we were able to go into the community with the portable vent. Like we took him to the library, we took him to the playground, we took him to the pool.

then when he was decannulated, you know, like we took him on a walk, actually taking him on a stroller walk was like a big moment. each thing that we took for granted with our first child was like such a milestone for James. Like it, like being outside in the winter versus

being outside in the summer, like his ability to tolerate that type of pressure. So yeah, each thing I think was like a celebration and it was like a real milestone for us going to a restaurant, like you know, all of these things. And then I think that like, you know, two years ago when we sat on a chairlift with him skiing, that was something we just like never imagined. We kind of thought to ourselves that that wouldn't happen, you know?

So that was like a real milestone for us because that's like such a family activity for us that we just never thought was like in the cards for us, you know? And so feeling that like literal freedom of like being on a chairlift, know, tens of feet above the ground, off the ventilator, off whatever. him being like well enough to be in the mountain skiing is like...

I mean, yeah, that was a, and I remember we had a nurse that was kind of like made fun of the idea, cause you know, skiing is kind of dangerous, which it is.

Being like, I can't, like she was making fun of a family that does their child skiing. And I remember just being like, my God, well, this is us. Like we're finally at the place where we feel comfortable enough with him and his health that.

we're able to do this as a family and not feel like we're risking things, you know, like this is like just an activity that we're doing as a family, I think was really special.

Rebecca Solomon (36:29)
Did he, did he love it?

Justine (36:31)
Yeah. and he loves skiing. I mean, he, we've since gone like multiple times and he loves he, do an adaptive ski, like we've then started to find these adaptive ski programs and he really doesn't need physical support, but he needs attention support. So he needs like a one-to-one teacher, but

Rebecca Solomon (36:47)
Okay. Okay.

Justine (36:49)
he loves skiing. And so it's like amazing.

to see him love something like that and you know we've gone to Colorado to go ski like he's skied a lot of places he loves it so much and it just like is so special to us and like something we just really never thought would happen and then

Rebecca Solomon (37:08)
There's something very

symbolic to that, kind of how you said, like you're on the ski lift and you're, you know, heading up in the mountains and, you know, it's just, I don't know, such out of, out of all, out of all hobbies and activities like that, there's. Yeah.

Justine (37:22)
It's just like the most, the least practical, most crazy

thing to do. like, so far, like when, when you're in the bedside, I mean, this is for like, fans, like when you're at the bedside.

like trying to make sure that your child can breathe or like calling for a nurse because like something happened. The idea of being able to do something like skiing is like so out of the picture of like what you think is possible that when it happened for us it was like it's an incredible thing and like we you know we went to see our family in Asia which for a long time I was very scared to do a you know a very long long flight.

Just so many things where I just like really didn't think that that would be something that could happen. And then that feeling like, this is happening and it's, you know, a credit to James. think James first and foremost, like deserves the most credit because he like fought at every stage where, you know, he could have died. He like fought through it. And then obviously to like the hospitals and the medical people around him that helped him like survive.

it's crazy because we went through so much. And like now you look at him and you can't see that at all.

Rebecca Solomon (38:38)
Right.

Justine (38:38)
It's like something that we know as his history and like you don't think about it every day, but you think about it in these moments now. You're just like

Rebecca Solomon (38:48)
Yeah, yeah.

Justine (38:49)
kind of like

So grateful, you know?

Rebecca Solomon (38:53)
Yeah, sure, never take those moments for granted.

Justine (38:55)
No, no.

Rebecca Solomon (38:57)
What would you say, Justine, to other parents who are currently in the hospital, and they're feeling overwhelmed, maybe a little unsure about bringing their child home?

Justine (39:08)
Mm-hmm. I mean, I think that it's a totally normal feeling. Like, it would be insane if you didn't feel that way. You know, like, I think it's... It's...

I can't, I think you said it, you said these words at the beginning of the podcast, I can't remember, but like our NICU also gave us like this bracelet with three words that was like, I think it was like hope, resilience and belief. And it's kind of like, you just kind of always have to maintain that hope, believe in what's possible and be like resilient to like what you're going through.

Having all three of those things like on it just and take it day by day like I feel like it's like you can't see too far into the future You can't think too much about what's gonna happen even today. You know, James is not a typical child and I have like worries and things that I think about but it's like I try not to focus too much about what's what it is because you don't know what it is like a child kids are so resilient like

You You can't determine their future from what it is today. And I think if you had listened to different doctors or statistics, James wouldn't be alive, James wouldn't be talking, James wouldn't be doing all of these things. And so you kind of have to look past the biggest fears or the things that, the most negative things people have said and hope and believe in what's possible and just do what your best you can day to day.

Rebecca Solomon (40:33)
you

Justine (40:33)
And then eventually those days add up into like a week and a month and a year. And then you're kind of looking at your journey in retrospective. And that's something that you just don't think is possible when you're in it on the, you know, but it is and it happens.

Rebecca Solomon (40:49)
Yeah,

it's a great outlook, great attitude. And your family, you've remained deeply connected to the hospital and you're very involved in events like our annual BAC 5K. What

inspires you to continue giving back and what does that community mean to you now?

Justine (41:06)
Well, I mean, it's funny because when we when James was in Blythedale, we lived in Brooklyn and then at some point we weren't sure when he was going to come home. And so we started to look to rent near the hospital.

And then we ultimately ended up buying in a town nearby and we didn't realize like how important that would be, you know, because I think ultimately we were able to recruit nurses to support him. Those nurses have become like a big part of our family, you whether or not.

I hope they know it. Whether or not we talk every day, I consider them very much part of James' story and our family, and I'm forever grateful to them.

Blythedale provided extended care. So he did outpatient therapy there. We did PT and speech and...

OT for a year and a half there. So this was like all after discharge. And I think we just didn't realize like how much it would continue to support and be a part of our like family. And then yeah, like I, it was so important to us. And I feel like hospitals like like they're a rare, they're not like something that everyone knows about.

And actually, interestingly, in my other son's first grade class, like one year.

I wanted to do like a decoration project because I remember when we were at the hospital, we always wanted to decorate like by his bedside. And so I had the idea that we could do like do snowflakes or something to like print out and like, you know, put just like have the kids make them and then we could put them in the unit. And then the teacher at his first grade class actually has a think a niece or a nephew that's in the long term care facility and or had been in the long term.

care facilities. So she actually made it a fundraiser.

and so we like, you know, raise all this money to donate. And I think it's just like, it's the, you know, I didn't know that she had a soft spot for Blythedale and, you know, it's a part of the Westchester community. it's like, I think that it felt so nice to be able to give back in that way and to have James come back

we don't do as much as I imagine we could or would, but it's just like we do as much as we can. And I definitely feel like it's important and I want to whenever it's possible and as needed.

Rebecca Solomon (43:35)
Well, we appreciate that support, definitely.

Justine (43:37)
way.

Rebecca Solomon (43:38)
And looking back, what are you most proud of, not just for your son, but for the impact your family has had on improving care for families after you, so many other families?

Justine (43:51)
I mean, I don't know if I would give myself credit that way. I mean, I don't know. Like, I feel like, you

Rebecca Solomon (43:54)
No way. Yeah.

Justine (43:56)
know, I don't know if we have. I hope we have. Like, you know, I think that we, if ever a family's connected to me, I always will answer. You know, like any time I can be of help to someone, I will because I think it's a very specific journey. There's not a lot of people that have been through it. So, you know.

Honestly, like it's whenever people need I will help and answer questions because I understand how overwhelming it is. I understand how many unanswered questions there are and I understand that there's like not that many people to ask, you know, and so I think it's like for me, it's like if I can never do anything for any of the families or if Blythedale or like anything related to that, I will because.

Like that's the only way to get through it.

for the people that go through it, whatever we can do to help, would.

Rebecca Solomon (44:52)
Thank you. And I do have one more question for you. How would you describe the meaning of hope?

Justine (45:03)
like hope to me is like the possibility of something else. And it's not even necessarily better because I feel like that's just like it.

You can't like qualify. know, like I think things that you think are bad actually are okay in the end. And so I wouldn't even necessarily say it's like hope for a specific outcome, but it's like a hope that like what you're going through and the hard parts of it, that there's like a way through it. And like, I think...

To me, and like with James in my personal life, there's been a lot of things that have been uncertain or there's things that you just can't.

Like hope is the feeling to me that you can get through anything and like no matter what, you'll be okay. Whether or not like what's coming is like good or bad, like I would never qualify that because I think you can't predict that, you know? But I think that like hope to me is like a belief in yourself that you will get through it and that whatever comes after will be better or like what is meant to be, you know?

So I just

Rebecca Solomon (46:22)
You know.

Justine (46:23)
think that fluidity of feeling like there's nothing that you can't get through.

Rebecca Solomon (46:28)
Yeah, and you've done that. You've been in that own definition of hope that you just described. You have defied that. You have brought hope to your son. Your son has given you hope, and maybe Blythedale helped without your son being born with the high needs that...

you would not have known that. And so, yeah, it's interesting how it all comes together in the end,

Justine (47:02)
Yeah, I feel like, you know, I think people are like, no one would wish this. You know, like you don't wish someone to go through it, but

Rebecca Solomon (47:08)
Right.

Justine (47:10)
there's a lot that comes out of it that you can't predict, you know, and it's not all bad. And I think there's always something, you know, James is a gift and he's, he is someone really special that like, I can't imagine life without. So.

To me, that's the definition of hope. It's not like what you thought it was, and maybe it's not like what you would have classified as the best outcome for... The best outcome would be to have a well child and have no issues and have nothing, no challenges. But that's not life. Life wouldn't be as good without him the way he is.

Rebecca Solomon (47:50)
that. Thank you for sharing James's story. Thank you for sharing your story. And thank you for everything. You're wonderful,

Justine (47:57)
Yeah, of course.

Rebecca Solomon (47:58)
Justine. I appreciate this conversation.

Justine (48:01)
Same, same. Thank you for having me and thank you for everything that Blythedale does. I really appreciate it.

Rebecca Solomon (48:06)
Thank you. And we certainly hope you have enjoyed listening to this episode of Journeys of Hope. If you have ideas for future topics, we would love to hear from you. Podcast at blythedale.org. Of course, don't forget to subscribe to our podcast and like and follow us on social media. Thank you so much. We'll see you next time.