#302 - 👶 Tracheostomy in the NICU | Shakeema’s Journey as a “Trach Mama”

Hello friends 👋

Leah and Shakeema Smiley discuss the challenges and triumphs of navigating life with a child in the NICU, particularly focusing on the experience of having a tracheostomy. Shakeema shares her personal journey with her daughter Lori, who was born prematurely and required extensive medical care. The conversation highlights the emotional and practical aspects of caring for a child with special needs, the importance of advocacy, and the power of hope and community support.

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Chapters

00:00 Introduction to NICU Breathing Challenges

02:43 Shakeema's Journey: From NICU to Home

05:48 Understanding Tracheostomy Decisions

08:22 Navigating the Emotional Landscape of NICU Life

11:17 The Role of Family and Support Systems

14:28 Life After NICU: Transitioning Home

17:27 Empowerment Through Knowledge and Advocacy

20:26 Challenges in Home Care: A Mother's Perspective

24:49 Navigating Home Care After the NICU

27:28 Life Beyond the NICU: Development and Play

32:38 Lori's Journey: From NICU to Thriving

35:25 Transforming Experience into Advocacy

39:45 The Power of Hope and Support

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The transcript of today's episode can be found below 👇

Leah (00:04.3)

Welcome everyone to Beyond the Beeps. Whether you're joining us in your ears on our podcast or in full video through YouTube, we are so glad you are here. Today we have a very special topic to share with you about breathing in the NICU and a very special type of breathing that happens with a ventilator and through something called a tracheostomy tube. Many of us have heard of ventilators or trachs and I'm using trachs and air quotes as they are called in the adult world.but this is something that quite a few of our NICU babies also have to receive. We have a very special NICU mother, a trach mama, as she would say, here to talk with us about her experience. Also joining us throughout the show today to provide us with medical insights and perspectives on tracheostomies will be Dr. Ben Courchia, who is a neonatologist and co-founder of the NICU, excuse me, of the Incubator Network. A little bit about Shakeema, our special guest.Shakima Smiley was born and raised in Miami and earned her bachelor's degree in criminal justice from Florida AMU. Shakima's area of expertise is public service. She worked with the Department of Juvenile Justice for 10 years and later with adult offenders in the South Florida justice system. Shakima currently solves white collar crimes and has been working as an investigator to solve healthcare fraud since 2022. In July 2019, Shakima's life as she knew it suddenly took a turn after she was rushed into an emergency C-section to an unexpected placental abruption, which is a life-threatening emergency. Shakeema was just six months pregnant when she delivered her beautiful, amazing daughter, Lori, at just 24 weeks. Lori required pretty immediate transfer, as many of our babies do, in order to get her to the care that she needed in a level three NICU. Shakeema and I met through ICU baby.and we were so fortunate to be able to be part of her journey. It was a challenging one. Lori was in the NICU for 261 days and Shakeema had to drive 20 miles back and forth to the NICU that Lori needed to be in for all of those 261 days.Lori's stay was that long because she was born with very underdeveloped lungs and was diagnosed with chronic lung disease. She required a ventilator in order to breathe and became respirator dependent, which subsequently led to Lori receiving a tracheostomy for breathing and a gastrostomy tube for feeding. Shakeema was also balancing being the mother of an extraordinary nine-year-old daughter, and she had to work.manage her career responsibilities, her finances, and life with daily responsibilities of a child in critical need. And she is here today to discuss with us how she did it and how she is advocating for NICU families and children with special needs for the Frankie Lemon Foundation in North Carolina now. We are so excited to have you here today. Shakeema, welcome to Beyond the Beeps.

Shakeema Smiley (03:21.388)

Thank you. I'm excited to be here.

Leah (03:24.746)

Yes, this is a long time coming and Shakeem and I have spoken many times and said, gosh, what would we like to talk about here? And what are things that are really important to share with our families? Because we could talk forever about so many things. And as those of you out there who have long term stays in the NICU, you really touch so many different parts of the NICU experience. But I really did want to hone in on something thatShakeema Smiley (03:27.768)Yes it is.

Shakeema Smiley (03:39.704)You

Leah (03:52.672)

Shakima, you have done an amazing job continuing supporting families who are in the NICU now who are facing this question of a tracheostomy. But before we get there, can you give us a little bit about the course of Lori's stay in the NICU?

Shakeema Smiley (04:09.452)

Wow, well, it was very long, of course, as you mentioned, 261 days. I've experienced many holidays and many different changes along the way as I saw families come in and out and always wondered when our time would come. One thing that I always mention when I talk about that long stint that we spent there wasyou know, I had no idea that it would have lasted that long. I think that's kind of what helped me along the way because my, was just driven about what's coming next, you know, would it be next month or would it be the following month? I never had a deadline in my head and I think that helped me kind of go along with what was needed.But one of the most unfortunate things about being in the NICU that long is, again, seeing many different families that don't leave with their babies. And it's just very hard to see and witness and try and stay dear to your baby because you don't know if that would be the circumstances or the outcome.

Leah (05:18.477)

Yeah.

Shakeema Smiley (05:34.604)

just to sympathize with those parents who, you know, came in so desperate, just like I did. And unfortunately, they were not able to take their babies home. But one of the most pleasant things about being in the NICU that long was the staff and my baby became their baby. And I always

Leah (06:00.972)

Yeah.

Shakeema Smiley (06:04.022)

tell people, Laurie came in the NICU needing a tracheostomy and this was a very long time that this NICU had had a baby in their NICU who needed a tracheostomy. So Laurie changed everyone's life around her. She initiated training that needed to be done, skills that, you know, needed to be inherited in order to make this thing work.and all hands were on deck and including myself. They really included me into this and it made me feel a part of the team. And I think I was most blessed in that area when it came to this because it could have been very scary. I could have felt like, hey, is this gonna work? Do they know what they're doing? There's been a very long time, been years since.

Leah (06:38.371)Mm.

Leah (06:42.136)

Yeah.amazing.

Leah (06:58.286)Mmm.

Shakeema Smiley (07:01.548)

kid with these respiratory issues have come through here, but it turned out to be great for all of us, honestly.Leah (07:05.069)Right.

Leah (07:10.382)

Amazing. So before we go to like kind of unpacking that whole experience, I'm just going to invite, let's take a quick pause and.We talk a little bit more about Lori's experience with tracheostomy and life after the procedure. We want to talk about sort of that whole experience. We're going to hear from Dr. Courchia And in this conversation, Dr. Courchia, I really want to know how is the decision made to proceed with a tracheostomy and who are the people who are involved in making this decision? 

Ben Courchia, MDThank you, Leah. My name is Dr. Ben Corsha. I'm the medical director of the NICU at HCA Florida University Hospital in Davie, Florida. And I am the creator and co-host of the incubator podcast. Thank you for your question. It's an excellent one. The decision to proceed with a tracheostomy in a baby in the NICU is never made lightly. It's a complex, multidisciplinary conversation that unfolds over time, not in a single moment. In my unit, we've learned the value of anticipation. We start evaluating infants around 36 weeks post menstrual age, and we recognize that the true window for decision making often lies probably between 40 and 52 weeks. This isn't just a matter of intuition. We've actually developed a tracheostomy assessment tool, which is a structured scoring system for infants with severe BPD. It evaluates respiratory support, it evaluates growth, developmental progress, and other clinical parameters. And based on a monthly score, Infants fall in a variety of different zones ranging from low risk to likely candidate for tracheostomy. This has helped us bring objectivity to a historically subjective process. More importantly, it has improved consistency across our team and facilitated meaningful conversation with families. The decision tree itself, well, clinical is also holistic. It involves not only neonatology, but also our subspecialists, including our ENT docs, pulmonologists, cardiologists, and importantly, our therapy team, respiratory therapists, speech and language pathologists, and physical and occupational therapists. What we ask ourselves is how is the current respiratory support affecting this baby's overall trajectory? Many of these infants remain intubated for weeks. We look at how that affects brain development, feeding ability, and physical growth. Are they able to participate in therapy? Are they tolerating nutrition? Is their growth, especially linear and head circumference growth, being compromised? We also wonder, is liberation from respiratory support likely in the near future? previous episodes of the podcast, Daphna and I have talked about how understanding the baby's trajectory can help set realistic expectations. If ongoing invasive ventilation seems inevitable, tracheostomy can open new doors to allow for more natural developmental care, for better therapy engagement, and gives parents a more active role in the care, thinking of things like... holding their baby freely, changing diapers, taking them for a stroll. These are huge milestones for families and should not be underestimated. Of course, one of the biggest questions families ask is when is the right time? And while the literature hasn't given us a definitive answer, there is data to suggest that tracheostomy done before 120 days of life may be associated with improved mental outcomes. Delaying it too long, however, may carry its own consequences. So in our practice, we try to make the decision thoughtfully. but not hesitantly balancing medical readiness with family preparedness. Ultimately, tracheostomy is not a failure. It's a step forward done at the right time for the right reason. It offers an opportunity for infants to heal and grow not in isolation, but in the arms of their parents and in the comfort of home. I hope this answers your question. Listen to more episodes of the incubator podcast for the latest research in neonatology. Thank you, Leah. I'm turning it back over to you.

Leah

Thank you so much, Dr. Courchia. Going back to Lori's experience and your experience, Shakeema, in the NICU, when I love hearing from beginning to end that this was a decision that was really hard, but you were happy that you made it. What was done in the beginning, how was it presented to you? but we have to do something about this.

Shakeema Smiley (08:27.32)

Well, one of the factors that helped me come to terms with, you know, even accepting the fact that she needed a tracheostomy was she, Lori had a very huge episode in November. It was the day before Thanksgiving. And she was just very air-hungry and struggling. Something happened.through the course of that day, I'm not sure if she started to feel sick or something, but she was struggling tremendously and going down very quickly to the point where during my visit, the team rushed in to help her and it was right in front of me. They didn't even have a chance to put me out. And it was extremely scary and nerve-racking. And I remember just being on autopilot.You know, I couldn't think straight. I couldn't even tell the numbers to contact my family to tell them what was going on. And of course, after this, they were able to get her, you know, back on her feet and she was OK. But that episode caused her to be intubated again. And through the course of our NICU journey, Lori was, you know, intubated.

Leah (09:27.736)

Yeah.

Shakeema Smiley (09:52.406)

And then she received the cannula, which goes across the nose. And then she'll start, you know, trying, but then she'll regress. And by the time that last big episode happened, the tracheostomy was introduced to me by the team in December. And this was around the holidays. So can you imagine it was very emotional time for me? You know, here it is another holiday that my daughter's not home.

Leah (10:00.514)

Right.

Leah (10:11.341)

Mm-hmm.

Leah (10:17.324)Yeah.

Shakeema Smiley (10:21.844)

And, you know, it was it was very emotional. So to be going through that and hearing, hey, let's sit down and meet. We want to talk about this other option for you. It was it was a lot to take in, but I understood that she so desperately needed it based off of the last episode that she had. I think being there helped me to understand.

Leah (10:36.002)

Yeah, that's heavy.

Shakeema Smiley (10:48.79)

you know how hard this was on her, you know, it's it is hard to breathe on your own when you need that much assistance. Right. And I was watching it in real time. So by the time we had the meeting, of course, there was a lot of unknown. But I knew that this was something that she absolutely needed, like every other option that was was on the table.

Leah (11:00.493)

Yeah.

Shakeema Smiley (11:17.752)

It couldn't be done anymore. We tried it all.

Leah (11:19.958)

Yeah. Yeah. So they presented this to you and then was, you know, it's all brand new. It's all Latin words. Was anything done to help ease your concerns, answer your questions? What was that decision process for you? Obviously, you decided this seems like something we need to do, but that's not as simple as saying, go. You have to make some understandings. What was done for you or how did you navigate that process?

Shakeema Smiley (11:49.282)

Well, during the introduction of it, again, I had a meeting with the whole medical team in the NICU, all of her primary nurses, the doctors, the respiratory team. I had my family there and I also had a representative from ICU Baby, which was incredible because again, that is a testament to how they're always there to support parents. But in the process of that, theytook their time to explain what this surgery is and why is it necessary. to give me a visual of what they're going to do the best way they could. They didn't have a live or a real baby to show me, but they tried to explain it and display it the best way that they could. And they also showed me what a trachlook like, you know, they put it in my face. Hey, this is what it looks like. This is what a G tube looks like. And of course, this was like all going over my head because you really don't know what purpose it actually serves until you see it on your baby or what it's doing for your baby. So I can honestly say the day of, although I had all of this information, I still

Leah (12:58.637)

Yeah.

Shakeema Smiley (13:15.98)

didn't know what was before me. Although they've done everything that they could to explain it, it was nothing like actually going through it and seeing it. Yeah.

Leah (13:18.787)

Hmm.

Leah (13:26.784)

experiencing it. Yeah. Do you think there were any, like now, thinking just that post time, is there a question that you're like, I should have asked this question, or I wish I had known this element? there anything, you know, I know you're very thorough and your presence is really obvious. You're very present with your life and with your children and yourself. But if there was something you're like, that was it, I should have asked this.Or if I had known this, I could have felt a little more reassured. Noah's a financier, of course.

Shakeema Smiley (14:02.86)

Well, mean, and this may sound funny, know, but I honestly felt like they gave me everything that I needed because although I had that meeting with them and then, you know, Lori received her surgery, the information didn't stop there. You know, they really took their time to train me on how to, you know, change her trach, how to give her feedings through her G-tube.I spent countless nights there, you know, just knowing how that works, you know, being able to get up and do these things throughout the night and how to suction. mean, these were things that they couldn't explain to me. Like I will have to do it in order to know. So now that I'm looking back at it, I honestly feel like they had given me everything that I could know.

Leah (14:50.083)

Right?

Shakeema Smiley (15:00.096)

in order to be a success at home. And the only way that I realized how much knowledge I had was when I actually got home and I'm like, I know how to do this. I'm actually telling the home nurse how to do this. it was shocking, but it gave me a lot of courage. It gave me a lot of strength through that, like knowing that I'm educated in this and not feeling.

Leah (15:02.861)

Mm-hmm.

Leah (15:18.647)

Yeah.

Shakeema Smiley (15:30.528)

as though I was lost. So the answer to that question is, you know, now that I look back at it, they answered all of the questions. I just had to execute it, you know.

Leah (15:32.418)

Yeah.

Leah (15:41.998)

Yeah, you were, it sounds very much like you were there and you were like, okay, this is a little new and this is scary, but let me learn and very hands on. Would you say that being there, being physically there to learn, like you just said, of it's empowered you to say, no, wait a minute, I can do this. Like I can learn being there, sleeping overnight. So that is also very difficult was what gave you that confidence.Shakeema Smiley (16:09.61)absolutely. And I think just being diligent, you know, just being determined and see anyone seeing your child in that critical state, it puts a lot of fire under you and wanting to get it right. And even if you don't, it's just at least you're trying. Right. And and that's how I felt. I was very determined because

Leah (16:11.214)

Mm-hmm.Leah (16:18.029)Mm-hmm.

Leah (16:29.441)

Mm-hmm.

Leah (16:34.285)

Yeah.Yeah.

Shakeema Smiley (16:39.04)

in my head, I had waited for this baby for eight months. And now that I have her home, I want to make sure that she stay home. And that is a great segue to a lot of the conversations that the medical staff had with me prior to leaving. And one of those things were, hey, you know, be very,

Leah (16:44.247)

Yes.

Leah (16:50.018)

Yeah.

Leah (16:59.649)Yes.

Shakeema Smiley (17:07.05)

aware that children like this often come back and forth to the hospital. You know, don't don't get discouraged about it. It'll be fine if you have to come back. And Leah, after spending eight months in the hospital, I was like, we are not going back. You know, I was like, I am going to get this right. And, you know, it was a scary time.

Leah (17:14.958)

Hmm.

Leah (17:24.622)

Yeah, yeah.

Leah (17:35.918)

care.

Shakeema Smiley (17:36.116)

Lori came home at the start of the pandemic. And I know we haven't spoke about time, a timeline yet, but yes, that was the height of it, you know. And it was a scary time. had no idea that I would have been hoping that she stayed. You know, at this time I was like, is it safe to take her home at this time? You know, we don't know.

Leah (17:42.966)

Yeah, but this is helpful to talk about for sure. Yeah.

Leah (17:59.318)

Yeah.

Leah (18:04.098)

Right.

Shakeema Smiley (18:04.714)

all this airborne stuff. And, you know, looking back at it, it was the best decision that we could have made because true healing started at home.

Leah (18:07.117)

Yeah.

Leah (18:17.73)

That is beautiful. True healing started at home. I want to back up a little bit is because again, the other part of when, you know, as parents, they're presented, we're presented with, okay, we need to do this for your baby. And you were, you know, like, okay, I'm on board. But a lot of the, there's normal fear. You have baby who has to go through surgery. That's scary. But there's this fear of the unknown, the fear of what the future looks like, right?What does it mean for me when I go home? What am I going to have to do at home? What is my baby going to be able to do? What does their, are they going to have a typical life? Is this going to be the same? And this is something that I think you really have a gift for is helping us to understand that. And I think if folks can hear a little bit more about what that looks like, you know, what is the day, kind of the day to day.in that transition going home, you mentioned somebody coming from home health. What was that like? Maybe let's do the first few days, the first weeks. What does our daily life look like when we have to bring a baby home who is on a tracheostomy?

Shakeema Smiley (19:29.836)

Well, there's a lot of initial help that is set up by the discharge nurse when you're coming from the NICU. And they set up the, you know, the DME company for your supplies and you kind of have all your prescriptions for your medications and your home health agency, you know, the home nurse who will come and help and your respiratory therapist.

Leah (19:33.72)Mm-hmm.

Shakeema Smiley (19:59.542)

We'll also be on board. Like all of these things were already put in place prior to us coming home, which was phenomenal. Yes. Yes. So. Right. And so that was great because I didn't have to worry about coordinating all these things. And they also coordinate the transport to get you home. As you stated, it was 20 miles to get to my house from the hospital. And so.

Leah (20:06.85)

by the hospital. That's the hospital sort of helps with that. Discharge coordinator.

Leah (20:27.403)

Yeah.

Shakeema Smiley (20:29.312)

when a child is that respiratory dependent, you're going home and going to your appointments and medical transport, which is much like the ambulance pretty much. They're making sure that they have all their oxygen and everything just in case. But once we got home, all these beautiful services that the discharge nurse set up, now it was time for these providers to deliver.

Leah (20:39.203)

Hmm.Sure.

Shakeema Smiley (20:58.616)

And it was just not going the way that I expected it to go. Yeah, we were highly disappointed with the home nursing agency. The first night we did not have a nurse at all. And the day nurse who had met us, you know, she was there to welcome Lori when she came in. She

Leah (21:05.217)

Hmm, say more.

Shakeema Smiley (21:28.104)

literally stayed until the next day because she knew how important it was for this kid to have, you know, support there. It was my first night. She wasn't feeling comfortable with leaving me by myself on the first night, you know. And,

Leah (21:40.098)

Yeah.

Leah (21:48.374)

Wow. So she was a human who showed up.

Shakeema Smiley (21:52.982)

my God, yes. wow. You know, I was so fortunate. You know, what if she was a nurse to say, listen, my shift this up, I can't stay, I'm exhausted, you're gonna have to do this, right? But she was reliable when the second nurse didn't come through, which helped me a lot. The next thing that I wanted to talk about was

Leah (21:55.755)

Look for those helpers in the world. Wow.

Okay.Leah (22:05.549)

Yeah.

Leah (22:09.453)

Right?

Shakeema Smiley (22:22.444)

the respiratory therapist, the person who you're going to depend on the most. You guys are like partners in this. Why? Because Lori's whole issue was respiratory dependent. This person is supposed to come in with so much knowledge and help. And unfortunately, again, I was teaching them a lot about her traits.

Leah (22:49.966)

Mmm.

Shakeema Smiley (22:51.34)

the size of her trach, why just any kind of trach couldn't be used, why it's important to know the brand, the size, the, you know, all these things, how often it needs to be changed. These were things that the respiratory therapist did not review prior to coming to my house. And, you know, unfortunately the gentleman was completely lost. He changed her trach to a size that was not

Leah (23:01.334)

Yeah.Right.

Shakeema Smiley (23:21.25)

hers, not even the same brand. And my daughter literally started shaking. She could not keep that trick in to the point where I grabbed his hand and moved it out. And I said, no, we're going to put that, the trick that she had prior to this back in because she's not well. And he says, well, this is the one they gave me. said, that's incorrect.

Leah (23:24.408)

Hmm.

Leah (23:30.254)Wow.

Shakeema Smiley (23:48.268)

Did you read her order? Did you read the doctor's orders? What, you know, this should be. And those things early on in that first week let me know how much I needed to know and the things that I needed to be more, you know, present in the moment.

Leah (24:09.26)

Yes, you needed to continue doing all of the advocating you were doing for her in the NICU. You had your practice skills and now they were doubling down now. You were still her primary care provider. You knew the most about her.

Shakeema Smiley (24:13.004)

Yes. Yes.

Shakeema Smiley (24:18.366)

yes, Absolutely. It made me understand that because I think there's a big misconception that some parents feel as though, my child is going to come home. I'll have the medical help and then I can go back to work because I'm so desperate. I need to pay my bills and I need to provide for my family. But during that first few weeks, that was not the case for me.

Leah (24:49.059)

Yeah.

Shakeema Smiley (24:50.09)

I really had to make sure that they understood what her needs were before I ever thought about going back to work full time.

Leah (24:59.564)

Yeah, that makes sense. That helps with these expectations. The same thing that the doctors and nurses are trying to do for you in the NICU is expect that you might have to come back. This, I think, helps us to understand, expect that you need, it's a big transition. You need time to feel comfortable at home. It's not just like a switch where you're home and now it's over. Does that sound fair?

Shakeema Smiley (25:21.188)

absolutely not. And there's a lot of foot traffic that comes through there, too. You know, have a company that's coming to check her the ventilator and check, you know, all these different things to make sure that it's OK. And, you know, I don't want to give off the impression that there were things that I did not learn while we were out of the hospital. There were some providers that really did teach me things.

Leah (25:28.504)

Yeah.

Leah (25:37.484)

Right.

Shakeema Smiley (25:50.486)

but it wasn't very often. Every now and then I'll have a home nurse to come in and really show me something that I probably didn't know before. But I really want parents and medical staff to understand that it's not just a switch. I got this information and I'm ready to go. There are just truly things that providers on the outside

Leah (25:53.144)

Hmm.

Leah (26:00.846)

Mm-hmm.

Shakeema Smiley (26:19.4)

are expected to know that they do not know about NICU babies or critical babies in particular. And one may argue, well, that's not their specialty, that this is not something that they encounter all the time. I understand that. But in the hospital, there's this, when you go home, we set these things up for you. You'll be able to continue to have this support.

Leah (26:23.022)

Hmm.

Leah (26:46.691)Right.

Shakeema Smiley (26:49.366)

That may not be the case.

Leah (26:51.31)

Sure. Yeah, that's really, that's helpful information to share. And so that's from the medical side, like what's going on? What did it look like for Lori's development and her playtime and, you know, thinking about how we're imagining, you know, what does a day look like for Lori and mama? Like, what does that look like for you guys?

Shakeema Smiley (27:16.258)

Aside from the medical stuff, Lori was living the good life.

Leah (27:21.633)

Yeah.

Shakeema Smiley (27:23.522)

think she realized very quickly that she was home again and, you know, in an environment where she was able to be comfortable and loved and, you know, having on clothes, something as simple as that, right? Like having on clothes and me being able to bathe her, her hair. She looked and behaved very comfortably, you know, aside from her trach. I mean,

Leah (27:28.557)

Mm-hmm.Leah (27:39.853)

Yeah.Leah (27:49.902)

That's wonderful. Yeah. Sure.

Shakeema Smiley (27:53.352)

she had lots of laughs and giggles and you know she was living the life that she should live.

Leah (28:01.55)

Was there anything that really, think a lot of understandably folks are like, well, this is a tube sticking out of your neck. And if you're listening to us, it's at the bottom of your throat, your neck. That's where it goes usually. We're going to share, everybody who's listening out there, we're going to share some photos of Lori in our show notes of her doing a lot of these things. she was sitting, she crawled, she learned to walk.I think, tell us a little more about that. Like, it's understandable to think, oh my God, you have this tube here. You can't be a typical baby. Like, you can't move around. I'm going to have to, how am going to hold my baby down all the time? Because that's what happens in the NICU. We have to have them pretty stable and not moving. But when you're home, how does that change?

Shakeema Smiley (31:57.868)

Well, Lori's initial transition home was very much like her time in the NICU where she did have to be stable until I learned how to kind of navigate with her trach and the ventilator on her, right? And that's during that time, dressing, of the above, feedings, all the above. But I had this period of time where I was a little afraid to do anything

Leah (32:15.779)

Mm-hmm.

Leah (32:21.73)

Mm-hmm.

Shakeema Smiley (32:27.584)

with her, like literally to take her outside of the room. And this kind of goes back to what I was telling you about some providers I was able to learn so much from because one of my home nurses, she said, you're able to do a lot more with her than you think. And I said, well, how can I, you know, cause we had spent so much time in her room every day. That's, that was her place. And she said, you can take her out on the porch to get fresh air.

Leah (32:31.512)

Sure.

Leah (32:38.936)

Mm-hmm.

Shakeema Smiley (32:57.164)

And I'm like, how? It was like a light bulb went on on top of my head. And sure enough, she let me hold Lori and she packed all her stuff up with her ventilator, which was on a post that had wheels on the bottom of it. So it can be moved around. But again, remember, I'm thinking NICU, I'm fresh out of the NICU. So I was thinking.

Leah (32:59.768)

Right.

Leah (33:16.479)

Mm-hmm.

Shakeema Smiley (33:23.852)

this kid has to be stable and she always has to be in this one place. Well, she helped me move her out. We walked through the living room and sat on the porch and I actually have a picture of me and Lori on the porch with the ventilator for the very first time. And I will share that with you all. And it was incredible because, you know,

Leah (33:25.922)

Right.

Leah (33:41.485)

Wow.Amazing.

Shakeema Smiley (33:47.38)

Although I wasn't glammed and I looked like a NICU mama at that point, you know, it was all about the baby. I was so proud of that moment because it showed me something that I didn't think could be done. And from that point, again, Lori started to get better and Lori lung started to heal.

Leah (33:52.152)

Yeah.Leah (34:00.184)Sure.

Leah (34:11.534)

Oh, I'm trying to think if I should just mute myself. Yeah, you just keep talking, I'm gonna mute myself. You said Lori started to get better.

Shakeema Smiley (34:12.12)I don't know, it's okay.

Shakeema Smiley (34:19.774)

Lori's lungs started to heal and it gave us even more freedom to do more because I was able to have these intermittent moments where I could take her off of the ventilator and allow her to, you know, participate in physical therapy, her feeding therapy. And Lori initially started on a mat like most little babies do.playing and then she started to pull herself up. And next thing you know, she started to walk and all these great things happened during those intermittent moments where she was able to come off the ventilator. Of course, and I want parents to understand this, the doctor have to approve that, right? But if they say, hey, let's try it, you know, I feel like the baby is doing well enough to have 30 minutes off of the ventilator.or an hour, that time is so golden because you really get to see how happy your baby is to have that little bit of freedom. I can tell you this, though. We did quarantine, you know, Lori a lot during this time because it was the pandemic and keeping the home, you know, a safe space for her and not allowing to miss.too much traffic, you know, not allowing too many people over, but just allowing the providers to come really helped her to be well and stay well. So once she started to thrive, it was up from there. We didn't have a moment where we had to go back to the hospital only because she was just so ecstatic to be off of that ventilator.I saw her at her best self when we were able to take her off.

Leah (36:15.584)Wow. Amazing. Sure. Yeah, she had it. was tube free. She was able to move her body as she wanted. Tell us a little bit about Lori today.

Shakeema Smiley (36:23.297)

Yes.Yes.my God, is, Lori is a five year old who's in kindergarten. Lori has completely surpassed every single goal we have set for her. She doesn't have a tracheostomy at this moment. You know, she was able to get decannulated is what they call it. And she was.

Leah (36:44.622)

Incredible. How long was that after she was home? Or about, more or less?

Shakeema Smiley (36:57.34)

well, Lori left to come home in March of 2021. I'm sorry, 2020. And she did not get her trach out until April of 22. Yes, so just two years. And again, it happened so fast.

Leah (37:16.226)

Okay

Shakeema Smiley (37:26.11)

I was expecting her again because we heard a lot of different medical advice. We were expecting her to have her trach until she was five years old and she completely surpassed that goal. She's in school. She's doing incredibly well. Of course, I have pictures to share for you all, but she's just a strong kid. She doesn't even have a G tube anymore.

Leah (37:40.066)

Wow.

Shakeema Smiley (37:54.804)

I really want the parents out there to hear that because that is also something where children with oral aversions, you know, they struggle a lot in that area. You know, even being able to sip or drink, some kids will refuse. Well, Lori was one of those kids. Lori did not take anything by mouth. She never sucked milk from a bottle her whole entire life. So seeing her come around full circle, you know, with not needing nourishment from her G-tube anymore and actually eating at a table with her family is a dream come true. It really is. Yep.

Leah (38:38.082)

That's incredible. Wow.Yeah, she really is extraordinary. And we will share those photos of Lori. You just have a beautiful spirit. You always have that presence, that holistic approach to life and living is just, it's ever present. And I've been fortunate to know you now for all of this time. But you did something even more special. You've evolved.your experience with Lori and the NICU into passion and purpose. And I mentioned your work at the beginning of the podcast in education for children with special needs at the Frankie Lemon Foundation. And then, of course, you've been supporting families who are experiencing a trach or a G tube surgery. You do a lot of work and advocacy is basically what this comes down to. And it's very important to you. What does that work mean to you?

Shakeema Smiley (39:38.826)

It is very important to me. has become my why, right? It has become what wakes you up in the morning, what drives you, you know, what are you most passionate about? And it is that because I always think of that moment in my life of the support that I needed, the knowledge I needed and how it was one of the mostdifficult times for me emotionally. And I think of those parents all the time. It never quite goes away. And I have dedicated my life to align with not only just the needs of my daughter, but the needs of other families and with children who have similarities to my daughter. And I don't, you know, I'm proud to talk about how well Lori's doing now and the things that we've accomplished, the goals, but I want all the parents to experience that. And I want to be a sign of hope. I want people to look at me and be inspired because I always remember a time when I didn't necessarily have a parent to look at and say, hey, your child has a trait. Can I?

Leah (40:45.153)

Yeah.

Shakeema Smiley (41:03.596)

meet with you, can I sit with you for about 20 minutes to talk about this? Unfortunately, I just did not have that where I was in the NICU at that time, but it has built me to be stronger. And when I think about all the incredible things that I am doing, what I want to do, I'm mostly happy about it because my very own daughter can benefit from it.

Leah (41:32.522)

Absolutely. And many more. You've done that for, you know, you've done that for us at IC Baby when we do have families facing this. It doesn't happen a lot, but it happens enough. And you've been extraordinary for that. Extraordinary.

Shakeema Smiley (41:33.92)

I know a lot of people.

Shakeema Smiley (41:43.672)

absolutely. I think one of those things that helped me to understand this full circle too is my relationship with ICU Baby and what they were to me. I think the special thing about ICU Baby that you all may not.know what parents take away from it is that you pour into us, you kind of help us to fill our cup again. And then we're able to serve someone else with that, that same, you know, passion and support that you guys poured into us. really is reciprocity, you know, at its finest. And I want parents to understand this too. This is not something that you're, some parents are still in the thick of it.

Leah (42:27.822)

Yeah. Thank you.

Shakeema Smiley (42:37.184)

Right. And when I was in the thick of it, I was not able to help as many families as I'm helping now. You know, my daughter had to kind of come full circle for me to even have the time or the ability to now go out and do speaking engagements and things like that. Very early on, my energy was towards her.

Leah (42:55.63)

Right, yeah, yeah. Yeah, there's a time to receive and then there's a time, you know, a transition and a time to be able to give more and I really appreciate that too. I think that's really helpful. You said the word hope and we talk about hope a lot here. How would you describe hope?

Shakeema Smiley (43:12.533)

Yes.

Shakeema Smiley (43:22.008)

Just being an example of.the other side of things, you know, when things turn over, how your faith and prayer can change things around. I think it's important, no matter what your religion is, to stay close to that because it'll help you to be made whole again. There's a lot of...

Leah (43:32.11)

Mm-hmm.

Shakeema Smiley (43:59.407)

emotional strain that comes along with being in the NICU, whether you're in there for two days, two months or a year. It's very hard on parents and it's important to stay close to your faith to give you the strength to make it through it. And again, many of us don't know what the outcome will be. Some of us don't know if we're going to make it home or not with our children. And so

Leah (44:18.403)

Yeah.

Shakeema Smiley (44:27.49)

having that faith and having family support is vital. And coming out to the other side of it, making it to the shore is what I like to call it, is finally getting your foot, your feet on the ground and saying, I've made it, I made it. But also knowing that there are so many other people who still.

Shakeema Smiley (44:57.406)

who still need your help. You you've made it, but don't forget about the other parents and children who's coming through that. And I want to be hope. And I want that to be very, you know, important. I want that to be on the front line of why I do this. And it's because I want to show up as hope, but I want people to understand.

Shakeema Smiley (45:25.846)

been in the thick of it. You know, my story does not just include the pretty version of it. You know, it was a process to this.

Leah (45:34.232)

Mm-hmm. Mm-hmm. Mm-hmm.Yeah, yeah, you are the lotus blossom coming out of the mud. Yeah, yeah, indeed.

Shakeema Smiley (45:43.096)

Bye.

Leah (45:47.65)

This has been so wonderful, Shakima, and I just am so grateful. Thank you so much for being here. folks, if you're out there sitting at your baby's bedside, driving back and forth to the NICU, pumping or pacing the floors at night, Shakima and I want you to know that you are not alone. We look forward to sitting with you again next time. Take gentle care.