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Welcome to The NICU Translated Podcast, where we break down the complex world of the NICU into clear, relatable insights for families and the professionals who support them. Hosted by Mary Farrelly—a certified NICU nurse, doula, and educator—this podcast is your go-to resource for navigating the NICU with confidence and compassion.
Whether you’re a doula looking to better support NICU families, a healthcare professional seeking deeper understanding, or a parent preparing for or living through a NICU journey, you’ll find actionable tips, evidence-based guidance, and heartfelt stories to inspire and empower you.
Each week, we’ll explore topics like:
-NICU 101: Terms, diagnoses, and medical equipment explained.
-Preemie care basics and developmental milestones.
-How to advocate for your NICU baby with confidence.
-Emotional and trauma-informed support for NICU families.
-Insights from NICU professionals and families who’ve been there.
With episodes featuring expert advice, list-style guides, and real-life interviews, The NICU Translated Podcast is here to equip you with the tools and knowledge to make the NICU journey less overwhelming and more empowering.
Subscribe now and join our community dedicated to bringing more joy and less trauma to the NICU experience—because the NICU is only the beginning.
Let’s navigate this journey together.
Michele Salmons (00:00)
it became very apparent very, very quickly that there was very little to no hope that this team had for our child. I remember the person who said to me, you should just be happy he's alive. I responded with, well, for you that might be enough, but that's for me only where it begins. So he's alive right now. Like, what are we going to do to continue to help him live?
Mary Farrelly (01:00)
Hi everybody and welcome back to this week's episode of the NICU Translated Podcast. This week is extra special. I have one of my former NICU Doula clients, Michele Sammons and her son Harvey here with us today. And I'm so excited for you to meet Michele and hear her story and her incredibly powerful perspective and really her experience navigating a NICU stay, early discharge and now that
Harvey is almost two, which is wild, navigating the first two years at home too. And Harvey is joining us. You're gonna hear some of his beautiful voice also as part of our podcast guest. He'll get full credit on our podcast. So Michele, welcome to the show.
Michele Salmons (01:38)
Thank
Thank you for having us. Thanks for having
Mary Farrelly (01:45)
So let's kind of start at the beginning so people can hear a little bit about your story and even how we were connected too. So let's take it back to those early days. What do you remember most about his birth and even those first moments in the NICU?
Michele Salmons (01:59)
Yeah, so I'm
going to back it up a little bit further too just for the sake of context for those who are listening. So Harvey is our second child and Harvey has an older brother named Jack who is 13 months older than Harvey.
And we had a C-section with Jack because Jack was breech. And when we got pregnant with Harvey ⁓ four months postpartum, we kind of expected that we would have a C-section again. And very naive me expected that Harvey was going to be Jack 2.0 and everything was going to be exactly the same as it was the first birth.
Harvey was not breech, which was the first time I realized, ⁓ Harvey is his own person, okay. And then I started getting questions of, well if he's not breech, do you want to have a C-section? And it had never really dawned on me that we would do anything differently, but I was always intrigued by the women who have these beautiful vaginal unmedicated births, and they talk about it truly as being magical.
my first c-section was just not that. ⁓ And so I was really enticed by this idea of, maybe I could have a totally different birth experience and maybe I will entertain this idea.
We talked in depth with my doctor about the risks of having a VBAC, especially so soon. But because I had a really healthy pregnancy, I was told in quotes that I was a perfect candidate to try. So we decided, OK, we will schedule a C-section. And if we get to that day, we'll have a C-section because I like planning. I like the organization that comes along with that.
But if I go into labor sooner, we're going to try to have a VBAC And I really left it up to the universe to kind of lead us down the path that was meant for us. Sure enough, five days before my C-section was scheduled, my body went into labor. And I thought, all right, we're going to do this. We're having a vaginal birth. And I wanted to be unmedicated. I wanted to be in the tub. All of these things that people had shared had made their own experiences magical.
⁓ We get to the hospital and shortly after we get to the hospital my uterus ruptures and ⁓ the truth is and unfortunately that was not identified by the medical team or myself. I didn't really know what happened. I I jumped ⁓ practically into the midwives arms.
said, holy shit, I'm sorry for my language, but I said, holy shit, he just kicked me. And I felt this really intense pain in my lower right part of my uterus. And I kept asking like, is this normal? This can't be right. I feel like I'm dying. Like it was just, it got really bad really quickly. And I kept being told, yeah, this could be normal, blah, blah.
Mary Farrelly (04:39)
if
Michele Salmons (05:01)
I'll kind of like spare a lot of the following details, but we ended up having a emergency C-section, of course. Harvey was born not breathing, no heart rate. ⁓ He had an Apgar score of one. And during this whole... ⁓
moment of birthing, like I guess I'm totally knocked out and I'm in the OR. Harvey is being born, honestly like practically dead, and a nurse goes in and tells my husband that neither me or my baby is going to make it. And so he is just left in the room that we were in for labor and delivery being told like your wife's gonna die and your baby's gonna die and sorry about it.
Mary Farrelly (05:39)
Hmm.
Michele Salmons (05:46)
So that was pretty terrible for him. And then it turns out that your wife's gonna be okay and she's coming out of surgery and then you know your baby is maybe gonna be okay but they're gonna go right to the NICU So that was...
experience of the birth and the first idea we really had ever had about the NICU. I mean, we had never thought about a NICU stay. I never thought that it was something we would need. I never dreamed that that was going to be what was our story. ⁓ I woke up, of course, after the C-section and I remember looking at Jake, my husband, and saying, where is my baby? Like I had no clue what had happened.
⁓ He said to me, Harvey's not doing very well and he's in the NICU and I just wanted to see him. Like, okay, but get me there now. And of course that's not really how hospitals work. So I didn't get there now. I got there several hours later, wheeled down the hallway in my bed and I could see him from my bed through the window laying on this, you know, the tables. All these wires hooked up to him. He looks...
very lifeless. ⁓ And that was my very first experience in the NICU of being rolled down the hallway thinking what just happened to me. No one's really giving me any information about my child other than he's not doing very well and I can't even see him, touch him, anything. So that was my very first entry to the NICU world.
Mary Farrelly (07:29)
Yeah, it's so not common to talk about the NICU prenatally. So, so many families when it is part of their story, it feels so overwhelming because there's no frame of reference whatsoever that anyone's pulling from. feel like a lot of even sometimes not with an emergency C-section, but sometimes with the C-section people have like a vague idea of what that might look like. But when it comes to the NICU, the sounds, the sensations, the
images that you see are just so out of context for anything. So it really adds to the overwhelm, which is one reason why I always encourage people who are pregnant in our doulas to talk about the Niki as part of their story beforehand. But most of the time it's not. As a Niki nurse, most families come to me and are overwhelmed and no one told me this was.
a possibility or any type of reference for it. ⁓ that is incredibly overwhelming. to go from this is this is my story this morning when I woke up, we're going to this vaginal delivery. Everything's going to be just fine. You know, this is a new story of us do it versus an entirely different ending. it's this new role as a parent of a child going through a NICU experience while still recovering physically from your own
surgery and experience too. So now you're in the NICU and you're navigating recovery, what did
next, what did the next day look like for you?
Michele Salmons (09:01)
Yeah, so ⁓ it
was like three in the morning that they rolled me down the hallway and ⁓ they moved me up to the postpartum unit from labor and delivery. Harvey is still in NICU and they told me if I want to go see him I need to walk. This is like 9 a.m. so.
very shortly after, ⁓ and I was hell bent to see my child, so I said, okay, let's go. Thankfully, they ended up bringing me a wheelchair to get me most of the way, but they parked the wheelchair outside of Harvey's room. I walked in and I was so overwhelmed, like you're talking about by the...
lack of expectation I had of the experience we were then going through, but then also at how lifeless my child looked. We had really healthy pregnancies. ⁓ I haven't been around a lot of sick children or even sick individuals, and so to see my baby just laying there
tubes everywhere, monitors beeping, he was in a low stimulation room so it was very much dark. ⁓ It was just terrible. I mean it felt like it felt like there was this blanket of death just over us thinking and being told like if your child lives three hours that's great you should just be a lot happy he's alive for now. ⁓ So we really didn't know what to expect for Harvey. We
unfortunately weren't met with a ton of extreme greatness or communication or even compassion it felt and so we were very scared we were very shocked we were you're in shock and terrified
Mary Farrelly (10:55)
It's really the initial step into a NICU really puts your body into that true fight or flight. Like you go into full adrenaline, that idea that a bear's coming at you in the NICU, it really is. It really is sometimes life or death. Like the response that your body has as a parent to stepping into that role is there's a lot of truth and validity to it also. And then...
It is important also when you're listening to this, if you're listening as a care professional, understanding the potential impact that your words and your language even that you use around speaking to families, especially in these very early, most intense vulnerable moments where there are so many unknowns, are those words are always going to be remembered. They're foundational to that family and that baby's story. And the potential long-term impact is
We don't we don't appreciate it always as medical providers that that's where the power is sometimes as you know in the NICU stay at after a certain point there tends to be more of like a rhythm to it and almost like okay I kind of know who's who I know the flow in those early days there's there's no framework for it and you're navigating this new environment and these new people and sensations and and you're still trying to parent your child too so I know one of the things that you have
Michele Salmons (12:04)
Thanks.
Yes.
Mary Farrelly (12:20)
really stepped into, especially even in those early days, knowing your story and then throughout is really into that role as an advocate for Harvey and for his unique needs and his unique story versus protocols and statistics. So what did that look like for you in the NICU in those first kind of days, hours and early time together?
Michele Salmons (12:23)
Thank
We knew nothing. mean, I
am not a medical professional. I have no experience being a nurse or a caretaker for anyone who's ill. And so we knew nothing. And at the time, we were very much just trusting our team because they have the credentials that we believed were the right credentials.
And it became very apparent very, very quickly that there was very little to no hope that this team had for our child. I remember the person who said to me, you should just be happy he's alive. I responded with, well, for you that might be enough, but that's for me only where it begins. So he's alive right now. Like, what are we going to do to continue to help him live?
and help him live well. ⁓ There were a different, a number of different things that occurred that we felt like were probably not the best decisions for our child. One of them was coming off of a really severe seizure medication without any weaning and this was really early in his life. I think it was day six. But it's my understanding that once you're on a pretty severe dose of a seizure medication, the right thing is to do to have a weaning plan.
maybe it was the right thing for them to do, but we didn't align with that in the moment. ⁓ Our child was taken off of breathing support. I think it was more or less like ⁓ a trial episode. And we saw our child really struggling to breathe, convulsing, seizing in our arms. And we were being told things like, this is just going to be his life with a brain injury. And again, like,
for us like that's not gonna work. Like this isn't just gonna be his life. I think that you could maybe put him back on some breathing support or we could do something to stop his seizures. And so yes, like I want my kid living and I want my kid living better than this right now. And I think that there are things that we might be able to do to see if that would help. And we were met with so much resistance. It felt very much like, it felt very much
like they being the team at the first NICU had no plans for us to leave there with our child. It continued to be this idea of like, you know, at first we were told maybe three hours and then it was like well maybe a couple days or like, you know, it was very short-term expectations and Jake and I just continued to say like no, I we need to be with people right now that have hope. ⁓
It's okay if that's not what it is. Of course, we didn't want that to be the case and it really wouldn't have been okay, but it was kind of an out of our control thing. But we knew that we did have the control to find people that...
We're willing to hear us, willing to share in our hope for Harvey. ⁓ And we're willing to say like, yeah, okay, maybe we don't expect your child to live, but we're not going to give up. We're not just going to hand them to you in this state and say, sorry, we're not gonna do anything. This is just how it will be.
So ⁓ we really had to start questioning and frankly it felt like we were fighting and when day six rolled around, day seven I guess, rolled around ⁓ it was so apparent that these people were not on our side that we actually arranged a transfer for Harvey to go to a different NICU ⁓ in the same city and when we told the doctors at the first NICU that we were going to
make this decision. ⁓ Gratefully, we had already had this plan kind of going on in the background. We had contacted the hospital and the new NICU and they were incredibly helpful with us. ⁓ But that first NICU said to us, there's nothing they'll do for you that we haven't. And I just looked at her and I was like, I don't believe that.
And so we left against doctor's orders. So you can imagine the snafu that caused with insurance. That was probably our first moment of realizing like, all right, we're going to do whatever it takes in this lifetime to get our kid the absolute best that we can, because this doesn't feel like that is the best. Like what we're experiencing now just doesn't feel like the best. So we're going to seek it. I remember telling my husband, and this was probably something I should have asked, you know, a month
prior as we were working through the transfer details. Should I go tour the new NICU? And he looked at me and he said, Michele, we don't have time. This isn't college. Like, we're going to send Harvey and it will be fine. No, you're not going to tour it first. Again, I was like, yeah, I probably should have toured NICU when I was six months pregnant. But I didn't. And that would be a piece of advice for all pregnant moms. It's just...
Mary Farrelly (17:45)
I love that.
Michele Salmons (17:52)
Go take a tour of the NICU. Hopefully you don't need it. But if you do, you don't ask that same silly question I did. ⁓ But anyways, the transfer team from the new hospital comes and the transport nurse says to me as she walks in the room,
Harvey's brain heals and I just lost it because this was the very first person to use the word healing in the first week of his life. No one else had talked about any plan to heal, any path to get us there, or even that it was a possibility. And so her saying that was like the magic I needed just to know like these people believe in my child and healing might not be for us and okay if it's not.
Mary Farrelly (18:21)
Mm.
Michele Salmons (18:37)
but like someone believes that maybe there's a chance. Like I want to be on her team. So we left and I never looked back.
Mary Farrelly (18:48)
that is, there's so much to take away from that when you're listening to this and hearing your story because one of the things I wanted to share too is that, as you said, a lot of Nikus have different cultures and they have different skillsets and they have different places that they shine in different areas where they're not as strong in. ⁓ And as a medical writer, I feel like it's essential to maintain a level of humbleness and awareness in your potential.
Michele Salmons (19:01)
you
Right.
Mary Farrelly (19:17)
weaker spots but not everybody has that and knowing that there is always options. mean that's that's easier said than done. Some places it's harder because there are fewer nicus, there are fewer choices depending on where you are in the country or in the world but it's easy to just assume that because someone has a credential that they're they know best, that they have the answer. There's no other
Michele Salmons (19:21)
you
you
Mary Farrelly (19:44)
There's no other possibility. It's what this one person says and I see that happen not just in the NICU but in general I know I have a lot of family members who are very different to what a Doctor says about their care even if in their gut and as they're speaking about it They're realizing this doesn't quite feel like me because like they're speaking in generalities and statistics and they're not speaking about me or my child and One of the things that we talk about
especially with navigating big medical decisions is using that BRAIN module, right? Like the, what are the benefits, risks, what are alternatives? But then the I is intuition. Like what does your gut say about the care that you're receiving? Because especially as a parent, you're probably right. Like your gut and that kind of inner knowing is just as important as the medical degree that the person that you're dealing with has. And their insight and their expertise is important. And, you know, as
Michele Salmons (20:16)
you
Mary Farrelly (20:43)
people who don't have that level, it is important to hear different perspectives, but it isn't the only piece of the puzzle. knowing that your voice is just as important, even, and especially in those early days when you as a parent are learning the NICU language and your own child's diagnosis and what medications are and being able to advocate within those like early knowledge that you're building constantly, but being able to stand up and do that, that's.
Michele Salmons (20:46)
you
Mary Farrelly (21:10)
Being in a place where you feel seen, heard, and safe is where everyone's going to have the best possible outcomes.
Michele Salmons (21:14)
It's a level of mutual respect. ⁓
I didn't mention this, but Harvey's overarching diagnosis is HIE. So he has a severe brain injury from lack of oxygen, both while he was still ⁓ in my body once my uterus ruptured, but then it took them quite a while to resuscitate him after he was born. And so right now, Harvey's primarily a neurological patient. Of course, we have lots of additional diagnoses, unfortunately, but we prioritize
Mary Farrelly (21:20)
Mm-hmm.
Michele Salmons (21:44)
⁓ Finding our neurology team to be like the right best neurology team Obviously, we want the right GI team Harvey has a g-tube all of that, but his g-tube is really well managed
we really need to put our eggs in the basket of like, do we have the right neurology team? And unfortunately, we haven't in the past. And so I say all of that just because I am not a neurologist. I know very little about neurology. However, I know a whole heck of a lot about Harvey and Harvey specific brain injury and how Harvey is impacted by his brain injury. And what I'm always seeking when we do go to either find a new doctor or someone new comes in the room.
I need you to know that I'm an expert on Harvey. You might be the neurology expert and I need that because I don't have those skills. But I also need you to know that you will never know Harvey the way I do. And so I think that it's seeking that mutual level of respect to say what you bring to the table is what I don't have and what I need and vice versa.
Mary Farrelly (22:33)
Mm-hmm.
I love that and the the care professionals that you are going to find those the magic and the collaboration and the progress are when it's very clear upfront that they are there to listen to you and to treat you in that respecting role as true expert and
an integral part of the care team. If you don't have that layer of understanding and knowledge of his full story and his unique responses to things, you're not gonna be able to do your job as a medical professional in the way that you would even want to. And the outcomes are just not going to be the same. So I love that perspective starting early in the NICU and knowing that it's going to continue. So let's fast-forward a little bit through your in your new NICU.
And I know that there is progression at the point being able to have a safe plan to discharge home with some a little extra medical equipment, but let's talk a little bit about I know we were talking about before like how much little you actually do remember of those early days that we home because it's a bit of a blur, but let's touch on a little bit that transition to home what was what went well what you wish you knew even and
kind of that those earliest really oftentimes those first zero to eight weeks home. What did that look like for you?
Michele Salmons (24:08)
Yeah, so as you mentioned, I
am the first one to say like, I don't remember a whole lot from that period of time. We were in crisis. ⁓ The most traumatic event of our lives had just occurred. We were still in shock. ⁓ We also had a one year old at home who, thank God, our moms had been taken care of 24 hours a day so we could really focus on Harvey.
But we were just really in over our heads. And so I remember the morning that we were planning to discharge from the hospital. ⁓ Harvey was in the NICU for 35 days and we ended up leaving the NICU on December 20th. And I continued to pray throughout our journey there that we would be able to bring Harvey home for Christmas. And so this wish was coming true and the nurse walked into our room that morning, Harvey's room.
7 a.m. to 7 p.m. every single day and she says she looks at us
she looks at us and she says, so are you ready to go home? And I just stuttered saying like, I don't think I know what I'm doing. And Jake is kicking my leg practically like under the table. And as soon as this nurse leaves, he says, stop saying that because we can't let them keep him any longer. If they're willing to let him go, we have to take him and run. And I thought, but I don't know what to do. Like I'm so underprepared. He was like, we'll figure
Mary Farrelly (25:15)
It's ruined.
Michele Salmons (25:41)
it out, we just have to take a vignette. I was like, all right, I guess, I guess we will. So yeah, so ⁓ we leave that evening and it's dark out because we got discharged really late and we get home and I am trying to set up Harvey's feeding pump, which you know, they asked me to practice a couple times in the NICU with supervision and when someone's looking over your shoulder and someone's an expert in this, like you feel a lot of confidence.
Mary Farrelly (25:44)
Mm-hmm.
We're doing this.
Michele Salmons (26:11)
like, okay, I can do this and you're right here to help if I mess up. As soon as that nurse was not looking over my shoulder and there was no one in the room who had more confidence than I did, I just fumbled. I didn't really know how to turn on the pump. I couldn't figure out the rate. I just, I was clueless.
and I thought we're never going to be able to feed our kid because I don't know how to turn on the pump. So ⁓ it was a lot of trial and error, a lot of figuring it out on our own as we go.
There's a saying that I've like kind of held on to because it's so true in situations, no matter like the situation it is, but in a moment like that, you feel like you're building a plane while you're flying it and like you're in the middle of it. You've got to figure out, you've got to figure it out. You've got to feed your kid and also figure out the pump at the same time. So ⁓ it felt like a lot of like cluelessness.
I remember having a skilled nurse coming in and I was pulling meds for Harvey and she looked at me and she was like, is that how you always do that? At the time we didn't have the correct like end fit tops to our syringes or the right like tops to the med bottles. Now it's all second nature to us and we know exactly the supplies that we need but in the moment I didn't and so I was pulling meds from one syringe and then injecting the med from one syringe into another syringe to try to give it to my child.
she was like, this is not how you should be doing this. Let me help you. you know, again, you don't know what you don't know. And it was, it was a circus. We were just putting one foot in front of the other, which is still what we're doing, but we have so much more knowledge now, so much more confidence. We
we know so much more. and so i just wish that like i had someone like that skilled nurse, but it was i don't know 10 days later, who had said to me like hey you want to ask for these syringes from the pharmacy? and like here's the trick to pulling the med. um i don't know even just like a quick pamphlet of like here's the 10 steps you need to turn the pump on at 3 a.m when you are afraid you're not going ever feed your child. it was just
Mary Farrelly (28:12)
Thank
Michele Salmons (28:34)
It was kind of a circus.
Mary Farrelly (28:41)
Yeah, it's often that people are so anxious to get home like you and your husband that you're like, you have the mentality of like, I will figure this out at home. And you do. Families always do figure it out. And I remember once after we started having sessions together, looking back and being like, you're going to be this like, kind of, for lack of better term, like a badass by the end of next year. Like when you look back at yourself now,
Michele Salmons (28:49)
Thank
Mary Farrelly (29:09)
You have to give yourself so much grace in the moment because you truly, you just learned how to be a NICU parent and now you're learning how to be a parent of two children, which is a huge transition in general. And now trying to figure out medical equipment and a new rhythm and a new routine. then like on top of that, you just, don't even know still what you don't know. You don't know to ask for the correct syringe module. And oftentimes even at discharge teaching, people assume someone taught you one way.
Michele Salmons (29:27)
Thanks.
Thank
Mary Farrelly (29:39)
or lot of times people in the NICU do not really understand the logistics of reality of pulling up syringes when you don't have an entire stock room in Pixis to choose your supplies from. It's very different when you're navigating home health care and home health equipment and all of the kind of map and logistics of that as well too. So giving like your, your fresh
Michele Salmons (29:53)
next
Mary Farrelly (30:02)
Home discharge self, some grace in the moment is so hard to do because it's funny now but in the moment I'm sure you were like I literally cannot feed my child and that is my one job as a parent is to feed my baby and the pressure that we put on ourselves too as parents ⁓ to kind of navigate those early days home and it does come with time but having someone and people alongside you who can offer some
whether it's emotional, practical, logistical, medical, is going to make that journey feel less isolating and alone. It is a journey.
Michele Salmons (30:35)
Yeah, yeah. And that's the key, having grace in the moment, which is always harder, know,
harder to do than it is to say, but it is. It's just one foot in front of the other. You will figure it out. And I hope that everyone after me has the right support system to give them the tips, the tricks, and the help, and just the love.
Mary Farrelly (30:59)
Right, that extra layer of love.
Let's talk a little bit about the logistics of home health nursing, because this is not the part of everybody's post discharge story, but it is more common because a lot of times our babies are going home with different medical equipment and follow up that's needed. And I also remember when we were talking about how in the logistics of integrating a different, a whole nother person into your home, like it's one thing to have these appointments or these touch points.
Michele Salmons (31:57)
you
Mary Farrelly (32:23)
but entirely another one to find the right people to really trust and bring into your safe space. And I know this is an ongoing journey, ⁓ but what kind of insight or I guess suggestions do you have for families navigating home health and skilled nursing care at home?
Michele Salmons (32:40)
Yeah, so ⁓ when we first
were discharged, we received skilled nursing. I believe that this nurse was coming three times a week and she was taking vitals. She was offering that type of like help and tips, tricks, all of the things.
⁓ that we needed in the moment. And at the time I was still working and I was on maternity leave. But my maternity leave, we spent a whole month in the NICU, was, the end of it was approaching. And it wasn't approaching quickly, but it was on the horizon. It was something that was kind of hanging over my head.
Michele Salmons (33:15)
And she started to offer the idea of private duty nursing.
But, ⁓ Harvey qualifies for 56 hours a week of private nursing. And as I started to like, ponder that, ⁓ it was really something I wasn't interested in to be frank. I had this idea of like, but I'm Harvey's mom and I want to be his mom and we have another child and we don't need 56 hours of help with him. So why would I need that type of help with Harvey?
he was very much a baby, obviously, and so we didn't really understand like the depth of his needs and such at the time. So we really like hesitated with working through private duty nursing. ⁓ But we also quickly learned that not everyone is comfortable feeding a child with a G-tube, and so while we were working, ⁓ the care that we have for our other son
wasn't going to be the same and right care that Harvey needed for the sake of has to eat during the eight hours of our work day. ⁓ And it's whole different game to feed someone via G-tube than it is to feed a baby via bottle. So we started to give the idea a chance. We started part-time and then trying to manage Harvey while working and that was not really ever gonna work.
And then we ended up filling our schedule to have full-time nursing. ⁓ And now we're in a boat where we actually don't have any nursing. So it very much is a journey. ⁓ But if people are interested in that, like there seems to be, and this is just my perspective and understanding, two camps of parents who are either feeling like we qualify for this help and this help is very helpful and beneficial.
and they lean into it. And then there's other parents who, rightfully so, are not willing to lean into it. And ⁓ there's a lot of reasons for that. I think it's hard to, one, bring someone into your home. It's very invasive, to be honest. ⁓ It feels almost like you're constantly hosting. ⁓ Having someone in your home all the time, they see the best and worst sides of you. ⁓
Mary Farrelly (35:33)
you
Michele Salmons (35:34)
So that's really tough. But also, know, trusting someone else to care for your child is very difficult, especially when your child's life feels so incredibly fragile. So ⁓ we probably will get back to nursing at some point in the future, but right now we're in a place where I like this time. I like the opportunity to care for Harvey in the ways that
I'm called to. ⁓ There's definitely pros and
Mary Farrelly (36:10)
Yeah, and your point in that you don't have to make a decision and stick to it for the rest of your lives either. If you say yes now, it doesn't mean it's a yes forever. If you say no now, it doesn't mean you never have the option to re-explore that because in parenting any child, you're going to have a different child every week. know, like they're growing and they're changing and their needs are perpetually changing and the needs of your family and your personal life and other things are going on. It's never stagnant. It's, it's...
For better or for worse, it's always evolving. And so know that, I feel like oftentimes I can feel when you're at discharge, you have to make all these decisions and they can feel very permanent sometimes. And like if I don't say yes to it now, it'll never be there. And I love that you also, sure you it's unique to your family. Even if you have to, find someone else on some other part of the world that has a story that's very similar to yours, you're still incredibly.
unique and what works for them doesn't necessarily work for you. It's helpful to take different pieces of their story and perspective, but know that there's ⁓ always options and there's always flexibility in that too. it is, are just like with the BRAIN model, there are benefits and there are risks and there are alternative plans too. And sometimes it just involves a little bit of moments to think and kind of pause and be like, this what we need right now? And if not, that's okay.
Michele Salmons (37:35)
Yeah.
Well, and our needs have changed dramatically since we kind of said yes to nursing. As I mentioned, I was returning to work from maternity leave. I stayed with my role for, I would say, nine months out of that year until we came to the decision that it was best for our family for me to step away from work for the time being. Nursing is incredibly helpful, and the company that we work with right now does not allow nurses to drive the patient to any therapies or appointments.
Herbie has several each week. On average we we run about eight appointments a week that we have with Harvey and I found myself just not able to feel like what I was giving to my job was fair any longer. ⁓
sure like nursing can help throughout the day but if they can't drive my child to an appointment let's say it's an hour away which our therapy right now is an hour of therapy an hour home that's three hours out of my day that I was asking my boss to like just give me off every single day of the week so
Now that I've stepped away from working, we don't have quite as many needs as we had before. ⁓ For a very long time, we kind of just like fell into this like, well, we just are doing what we've always done with nursing. And then it really took a couple months ago.
really thought about it and realized like maybe we don't have the same needs anymore so that's why we're kind of in the boat right now of taking a break and understanding what does our family need where are our greatest needs what serves Harvey the best because I think in a way too like I have some more time than I did when I was working Harvey needs me too to the extent in which I can give it to him so needs change for sure
Mary Farrelly (39:10)
Thank
Right.
Let's talk a little bit about the logistics of appointments and equipment and just the logistics of having more in your day to day that is then maybe even you had planned for and again it's always evolving too. So what suggestions or tips do you have for those that family that's coming home and seeing that they have 20 appointments and thinking okay.
Michele Salmons (39:39)
Yeah.
Mary Farrelly (39:48)
How do I balance all of this? How do I keep track of everything? How do I make sure each team has the information that they need? What is your best advice for those families?
Michele Salmons (39:52)
them.
Yeah.
Well, I will preface all of this with like, are still figuring it out. We are still very much finding our stride. ⁓ And I'm very grateful. I have a husband who is wonderful at ⁓ keeping us organized. I am a very type A organized person until I am drowning and then I just, it all goes out the window and I can't handle anything and I'm overwhelmed and like, don't even ask me to start because I cannot, I'm paralyzed.
And so my husband is the one who kind of keeps the ball rolling on a lot of things wonderfully. ⁓ My job, so we each have our own kind of roles in keeping everything from hurting straight. Jake is very much behind the scenes and mine is very much forward-facing. So it's my responsibility to get him to therapy, do all of the therapy that we need to be doing at home. ⁓ I make his food. I do all like the nursing tasks.
And then Jake is the one who pretty much like emails the doctor if we need or emails insurance and we need to push them on something. ⁓ But logistically, that's a lot. I mean, it's, I hate to say this to a new parent who's just getting into it, but it's a full-time job. And ⁓
It's a full time job and then some and it's very, hard to handle it all and to keep it all up in the air. So I just extend some grace to someone who's feeling like, how am going to do this and work? That's a huge question and I commend those who can do that. How are we just going to do this period because we have other children or we have other needs in our family?
It isn't all the time like thinking about things. For example, today I asked my husband, is this medication getting delivered tomorrow? Because if it's not, need to email the provider today because we won't have enough to get tomorrow night's dose. So it's staying a step ahead of all the things. The equipment deliveries. ⁓ Where do we stand? And you know, is insurance... ⁓
sitting on this and do we need to push insurance or is the specialty medication pharmacy delivering the med on time because they don't give you extra. So if it doesn't get there on time, what are we going to do? The follow up of appointments right now, a lot of Harvey's appointments are at a
Mary Farrelly (42:27)
Hmm.
Michele Salmons (42:34)
centered at a hospital that's about two hours away. So where is it appropriate to make an appointment, a virtual appointment, versus taking the day off for my husband and all of us going up there? It's just a lot to manage and stay on top of. And I don't yet have a real system. It's pretty much like brain power shared between me and my husband of did we remember this? Or did you do something about this? Or I mean, I have a log. Harvey, unfortunately, last year had a
ton of fevers. And so I started logging in a notebook. Like this was the high fever, this was the date, and here's what I think it was associated with. And so I have notes on my phone, notes in the kitchen drawer on a notebook, texts between my husband and I. Every week I make myself a to-do list and a lot of that is inclusive of tasks for Harvey. So I wish I had a better answer, but right now it's kind of all over the place.
Mary Farrelly (43:31)
No, I mean.
You have an honest answer and it is, there's, it's helpful to have that role delineation to a certain extent. It's almost like you're running a company. Like you're like a CEO of a company and you're making sure you're managing the logistics and the contractors, which are your like all the different appointments and making sure that you have billing and all the things, but you're also doing it while still living a life. It's not like you can be like, Harvey, please.
Michele Salmons (43:43)
Thank
Mary Farrelly (44:01)
Everybody give me three days to map out this next calendar year. And the second you map it all out according to plan, the plan's gonna change too. ⁓ So I think just offering that perspective, you're doing an incredible job and acknowledging that it is, there are pieces of it that can feel like a job. And then there's the balancing, the joy of being a parent or an incredibly cool little person.
Michele Salmons (44:11)
Yeah.
Mary Farrelly (44:29)
still soaking in those moments as well because I feel like sometimes what I've seen with families is we can get so stuck in the, and this is not only with NICU, but especially with NICU experiences and having children with more medically complex needs is really feeling like you're managing care, like you're a case manager and a nurse versus a parent. So how do you try to find those moments of presence and bring in those like joyful?
Michele Salmons (44:48)
versus a parent.
Mary Farrelly (44:56)
connection moments. I mean, you're doing it right now. It's so amazing. For those that can't see it, Harvey is like just resting on Michele's chest and feeling just so snugly and loved. I'm having such, my chest is like having FOMO right now. Like baby snuggle FOMO. But how do you balance? I mean, there's no balance, but what are your moments that you can find presence in?
Michele Salmons (45:04)
Thank
Yeah, I mean, there are some days where I just can't do the things that I need to do. And instead I just sit and snuggle Harvey and I soaked those moments in. We try very hard to keep the perspective of like, we are the lucky ones instead of flip-flopping that, which is very easy to do when it's a very slippery slope of how lucky is the neighbor who has two healthy children? How lucky is this person that had a totally wonderful magical
birth
right? ⁓ But really like we get to know Harvey and Harvey is the coolest kid I know. He is bringing us so many lessons, so much perspective, like he has changed our life for the better and it's staying in that mindset that keeps me
glad and joyful to be his parent versus frustrated at the roles that I'm now taking on not by choice. ⁓ It's when Harvey does a really incredible thing like maybe he'll smile at you or maybe he'll bring his hand to his mouth and these are not things that we see every single day. So when you see more miracles like
When you see the miracles you just realize like wow how lucky am I that we get to do this and because we we really like put everything we have into taking Harvey to therapy we know that this is like the time where he's gonna get so much out of therapy because his brain is still growing developing all of those things that
That's what keeps me going is the like I know therapy is paying off because a year ago you were not bringing your hand to your mouth or you know it keeps me in touch with the doctors talking about how he's doing on medications XYZ because a year ago Harvey smiling was not happening so
It's like reminding yourself of those really good moments, those really good days, and also just remembering like, yeah, I probably should reach out to this doctor today, but instead, like, I just want to cuddle and read to you.
Mary Farrelly (47:33)
He just want to be present and enjoy the beautiful tiny human being that he is and it is so important to have those just kind of like pauses even in like the chaotic driving to the doctor's office standing in the waiting room and just having that moment of be like I'm here. I'm here right now. He's here right now We're together while still acknowledging that there are really hard days and not every day is going to
feel good and that's okay. You're allowed as a person, you are also a parent and you are a person. You are a person with your own needs and your own emotions and your own experience too. So that can feel as any parent, but especially when you're having your go-go going like this, you can feel like your needs don't count the same way or they don't, you're not allowed to have them and know that as a NICU parent
you are allowed to have those feelings and it might look different, you know, like you hear the buzzwords of self-care and sometimes people like it so and you're like do do I look like I have time for a bubble bath and a spa day? Like I sure don't but you still are allowed to have feelings and share and ask for like those moments of peace.
Do you have any advice or insight for how to retain a sense of your own self and your own needs even among caring for others with many needs in your life too? You're like no.
Michele Salmons (49:09)
My honest answer
is I don't have a good answer. ⁓ I will say though, like our now three year old, so Harvey's older brother is a completely healthy child. No, NICU stay. I mean, he goes to the doctor once a year, right? Like very, very different medical situation than Harvey. ⁓ And I still have good days and bad days and moments where I realize he too is a miracle and moments where I feel incredibly challenged and overwhelmed by the needs he has of me. And those needs
are
not medical needs, but they are maybe 3 year old toddler needs. And so the feelings of needing to prioritize yourself at times and not losing the knowing of who you are and keeping a relationship with your partner, like all of those are just as important for a NICU parent as they are for any other parent. So
I guess my piece of advice here is like don't overthink it. Just be a parent and also try to like meet your needs as well. And in terms of meeting your needs, I don't have that good answer. I've been telling my husband for days now like I need a break. I need a break. And we're talking through the idea of like, okay, what does that look like? Like what do you really need? Do you just need to go to the grocery store by yourself? Because like that break is different versus do you need like for me, I would love a spy day by myself.
know when to come with me and I want to turn my phone off but like right now that's not realistic in our lives so I will probably go for a walk in the grocery store and call that a good break. It's all relative there's times where the spa day can work out so I don't know just have some grace have some patience
Mary Farrelly (50:40)
Thank you.
Mm-hmm. ⁓
Yeah.
Michele Salmons (50:58)
speak up before you need the break. Like, I've been needing a break and so I'm talking about it now before I blow up on my husband on Saturday telling him that I'm leaving the house for five hours and not coming back.
It's almost like I'm feeling this itch. It's I'm becoming overwhelmed. I need to communicate my needs early so that we can plan for this to happen as opposed to it becoming a huge ordeal ⁓ that then therefore maybe negatively impacts my family when it should just be a positive thing.
Mary Farrelly (51:13)
Mm-hmm.
Yeah, I feel that deeply. There's this idea of emotional constipation where if you don't let it out, it will find its way out, but you need to let things out in little bursts for it to feel things to keep flowing. ⁓ Either way, as you said, if you don't build in micro breaks, whatever that might look like, it will come out in some sort of meltdown because that's just how we're only built to
to withstand so much pressure before the constipation goes the other way. My own experience with needing breaks built in from caregiving too is I try to put on a calendar, like you said, plan for it, like months out. This is my 24 hours. I usually, the last time I did this, I booked a hotel room literally five miles down the road from me and I left at 4 p.m. and I got back at 4 p.m. the next day. And I just...
Michele Salmons (52:09)
I'm.
Mary Farrelly (52:25)
read a book in bed and walked through a garden. But even knowing it was on the calendar that far out, I was like, I'm gonna be okay because I have this break built in and it's waiting for me. Whether that's putting like a penicure on a calendar or putting knowing, know, calendars can change and evolve. But sometimes it's that anticipation and knowing that it's there can sometimes feel like you have that outlet, you have that potential relief.
Michele Salmons (52:36)
Yeah. ⁓
Yeah.
Mary Farrelly (52:53)
coming up, so getting through the
Michele Salmons (52:55)
One.
Mary Farrelly (52:55)
intense.
Michele Salmons (52:56)
I've been
planning for a therapy break. So Harvey is in lots of therapy. And so like I said, we have about eight appointments a week and most of those are therapy appointments. And so ⁓ as the seasons are starting to change, I'm starting to voice to our therapists of, like, I'm taking the week of Christmas off, we're probably not going to have any therapy the week of Thanksgiving, and I'm going to need a break around the holidays. So I don't know quite yet whether that's going to be the last
weeks of December off or we take Christmas week, New Year's week, and maybe a week in January. But it's impossible to keep your foot on the gas pedal. mean, Harvey is about to turn two and we've been doing intensive therapy his whole life. And so I have found myself in the past not scheduling those therapy breaks and then saying, I just can't come. We just can't do it this week. I'm canceling because I'm
Mary Farrelly (53:27)
Mm-hmm.
Michele Salmons (53:56)
just
had enough, I just cannot. Now, year and a half in, I've gotten myself to a point where I can say, hey, I'm gonna need a break in about 90 days, so prepare for that. And I think that they're appreciating that and realizing like, well, we knew that, we knew that you need a break, but I'm glad I'm acknowledging that I'm also gonna need that break.
Mary Farrelly (54:07)
Yeah. Lights blue. There you go.
that you
know that you need to break it off. Yeah.
Michele Salmons (54:20)
If I don't
take a break, Harvey doesn't get a break and that's not fair to him. So keeping that in mind as well.
Mary Farrelly (54:28)
Thank you for bringing that up. It can always feel like, you know, what if we do a break will we lose XYZ and all the things, but that those moments are equally as important as you cannot have.
Michele Salmons (54:36)
Thank
Mary Farrelly (54:42)
growth without rest and recovery and you need it and your child needs that, your whole family and sometimes it's just having the permission to slow down that everybody needs and then you can step back into that space whether you're in the NICU now and you need permission to go home and take a nap or you're in those early trenches and days home and you need permission to have someone to like hold your baby for an hour while you take a nap. Whatever that may look like.
Michele Salmons (55:08)
Thank
Mary Farrelly (55:10)
know that you can ask for it and it does sometimes mean a little bit of proactive thinking down the road so that you don't because in the moment you are you're going to either cancel or you're have a meltdown so it's that or you build it in now sometimes it takes doing it and learning from your own mistakes to do it but if you're listening to this as you stop this episode find whatever's stressing you out and build a break-in down the road whatever that looks like logistically
Michele Salmons (55:23)
for it. Thanks.
Mary Farrelly (55:38)
It's yours and there's so many different paths I could keep talking I was like one thing I did want to shout out as I've done you is you're incredible and impeccable care of and managing Harvey's G tube and Incredible that not all I mean there was I remember you posted this his G-Tube site and I was like that is the best looking G tube I've ever seen and then navigating his feet like what goes in the tube and and advocating for what that looks like
Michele Salmons (55:40)
Thank
Ah, thank you.
Yeah.
Mary Farrelly (56:06)
So I know that this is a question that comes up for a lot of families. So I did want to see if you had any insight that you wanted to share on your journey managing a G tube on your baby and now a toddler also at home too.
Michele Salmons (56:21)
I am like grinning and I feel like I'm blushing also simply because when providers tell us, and I'm not bragging when I say this, that Harvey has a beautiful G-Tube site, I always pat myself on the back, but I have no real reason to do so because I don't feel like I do anything special. ⁓ However, we had a provider one time take a picture of Harvey's G-Tube because it was going to be published in a book about G-Tube care, and I thought like, my
I'm such a good mom and no mom is a good mom just because of their like care of a g-tube and no mom is a bad mom just because of the care of the g-tube. I really feel like we hit the jackpot with the way that Harvey's g-tube has healed. However it was not always this way. So Harvey first got his g-tube and for the first couple months he got his g-tube he was one month old.
For the first four months of his life, Harvey was tolerating breast milk that I was pumping explosively. And ⁓ that was all Harvey was eating. And then we hit this point where Harvey just stopped tolerating feeds. And what I mean by that is he would scream, he would vomit. We couldn't get an entire feed in. And at the time, his feeds would last 90 minutes. And we were just like stopping the feed. He would vomit. We'd stop the feed. We'd wait. We'd feed again. He'd vomit. Blah, blah, blah, blah. Like we couldn't ever get a full feed in.
and
it was terrible and he was so unhappy. He was either always constipated or always having diarrhea. We couldn't get this like poop schedule down. We couldn't get him to tolerate the breast milk and so again having this feeling of my god I can't feed my baby. Whole like trauma response shows back up.
And we decided to put Harvey on the same formula that our other son was on ⁓ after I was pregnant with Harvey while also breastfeeding our older son. And I got to a point where that was too much for my body. So we ended up transitioning Jack to formula for a short period of time. And so we decided to try that same formula with Harvey. It worked for three weeks and then the same symptoms of not tolerating a feed started up again.
Mary Farrelly (58:32)
Thank
Michele Salmons (58:34)
decided okay let's transition to a different formula. So we tried a number of different formulas and
I'm the mom who wants an organic formula or wants the goat milk formula or reads the ingredient list and maybe doesn't like the number one or two ingredients. So I'm like, no, not that one. And some of those are kind of the most popular formulas in like the system of the hospital. And so there was a lot of friction that was being created between our family and our GI providers around Harvey not tolerating feeds,
were not choosing the formulas that they're recommending. And at this point, like Harvey, it just had stopped gaining weight So the reality was that in Harvey's first year of life, gained three pounds. He was born an eight pound baby. On his first birthday, he was 11 pounds. So that just really factually shows that he was not tolerating food. He was not.
absorbing any type of nutrients that he needed to grow in any type of healthy manner. And so things just got so so so bad that eventually I gave in, put my hands up and said fine we'll try the formula that at this point the nutritionist was recommending. The same thing happened all over again where
We were just managing like constant vomit, couldn't finish these, diarrhea, constipation, like it was not working. And I had this light bulb one day of like, how come I can't just treat Harvey like a normal kid? Because our older child around one, we were starting to introduce quite a number of purees and present what I would call real food. And I brought this idea up for providers and we were told no. And I was like, okay, well, why not?
And at the time the answer was, well, he's not one. And I remember explicitly saying, okay, but in 36 days he will be. What's the difference of now versus in 36 days where you would tell me maybe it wouldn't be okay to introduce a puree And there was no real good answer to that. And so we got home that day and I decided he's not tolerating food to begin with. I have nothing to lose. My child is pretty much ⁓ failing to thrive. He's not gaining weight. He's falling off the
chart extensively like this is a huge problem he's not going to survive unless we can get him some energy and nothing that's being recommended to us is working so I introduced blended food via puree diet and started pushing it through his g-tube and he started tolerating foods and that's what he does now and for the record he's gained ⁓
pretty sure 11 pounds he weighs 25 pounds now. So we've gained over about 15 pounds this year so far. ⁓ And I just think again that it's actually for itself.
But really your question was around like G2 care and his specific site. And so as we were navigating all these challenges with feeds not being tolerated, we also were experiencing a whole lot of redness around his site. At one point we had granulation tissue. We started having a leaky site. So like it would be lunchtime and I would have changed Harvey's clothes three times because his G2 was leaking so much that he was soaking through his own clothes. And it just looked like raw and uncomfortable.
Mary Farrelly (1:01:55)
Thank
Michele Salmons (1:01:57)
and like it hurt.
And one trick I did find because our doctors provided us all of these ⁓ Not necessarily medications that I guess I could call them ointments And then I didn't like love some of the ingredients in there So I started using beef tallow to support the skin around his g-tube and for us and I don't want to say this work for everyone but for us that was really a good answer to keep his site Kind of like keep the liquid up and off of his skin
Mary Farrelly (1:02:10)
you
Michele Salmons (1:02:29)
But now, fast forward, we've been doing purees ⁓ since he turned one, so for pretty much a year. His G-tube doesn't leak, his G-tube doesn't ever get red, we haven't had granulation tissue. It is really healthy looking. And so I think that because he's tolerating feeds, what I'm feeding him is really whole, like really valuable ⁓ nutrition, but also like
good quality ingredients, his body is just accepting his food and also like the site in which we're feeding it is also just looking much healthier.
Mary Farrelly (1:03:08)
That's interesting. mean, so often people in medical models of care, we are trained very system wise. Like you are a GI doctor, you are a cardiologist, you are a neurologist, but bodies don't care about how, they're not separated. It's all one integral being. So the idea that you're giving foods that have complete nutrition and maybe are decreasing an inflammatory state,
that that's gonna impact how his GI site, or his G-Tube site is looking and healing makes total sense. Sometimes as parents too, we have the whole picture as we mentioned before. We can see the bigger story and sometimes you just have to kind of go rogue for lack of a better word and trust your gut.
and know that yes, I've tried, I've listened, I've done all these things. These protocols might work for some children and some families and that's why they were created, but it doesn't mean it's the right answer, the only answer for me and my child. And I love the idea that he is feeding age appropriate, developmentally appropriate foods. How did you, do you have any resources for families that are hearing this and are a little bit further, you you're not gonna be feeding a two month old.
blended food, their GI system is not ready for that, but as they're getting closer to that magical, as you said, one-year-old Mark or in or around that area, how did you start building recipes and ⁓ learning about how to do this logistically with his P2?
Michele Salmons (1:04:26)
Yeah.
No.
There's a number of resources out there that I think would be really beneficial and unfortunately I didn't find them until after the fact so I really flew the plane and built it at the same time. But I really just gauged everything off of what did we do with Jack and in no way shape or form did I know what I was doing with Jack, do I think I did that right with Jack, but that was what we did, that's what I knew and so that's what we decided to try. So the very first thing we introduced to Harvey, I knew he
because he was so small and he was so sickly looking that we needed it to be high calorie. Whatever it was, Harvey needed high calorie, small volume. ⁓ And so we started out with avocado. We still to this day, eat sweet potato as our primary vegetable. ⁓ Calorie wise, it's pretty high for the volume. So if you're comparing a sweet potato to a zucchini, there's a lot less calories, a lot more water.
zucchini for the same amount of volume. ⁓ And so we've come a long way that I can introduce some of those other vegetables at this point, but for very long time Harvey
Mary Farrelly (1:05:45)
Hmm.
Michele Salmons (1:05:54)
spinach for the sake of like, he was lacking iron, avocado for the sake of needing fats sweet potato for the sake of high calorie carbs. ⁓ And so we started one ingredient at a time, super small. I think I posted on Instagram that I want to say his first ever trial was maybe five or 10 mls of avocado. It was very minimal. ⁓ I always...
gave it hoping for the best, we're kind of expecting the worst. And it was not a night and day switch. We didn't switch from feeding is horrible to wow, feeding is great. It was very slow. was let's try five mls a day or 10 mls a day to let's try 10 mls a feed. And now it's his whole complete diet and we haven't had to turn on the pump or give formula.
Mary Farrelly (1:06:31)
Mm-hmm.
Michele Salmons (1:06:46)
and I can't even tell you how long. So actually, I don't even remember how to turn on the pump now, which was so wonderful and beautiful, but had you asked me right when we got home from the NICU if we would get to this point, I would have told you now.
Mary Farrelly (1:06:49)
No.
Right, yeah, it's so hard to see. Sometimes in those early days you just want to know where the road is going and you want to see the next chapter and you want to fast forward so then you can rewind and be like, this makes sense. This is what we had to learn to get to this next step or these are the people we needed to meet or the tools that we are now integrating. But some of it is just learning as you go.
Michele Salmons (1:07:04)
for sure.
Mary Farrelly (1:07:20)
than connecting with other people and other resources and other families who have walked this journey before. So you can also gain from their peer experience. And this might look like peer to peer support, NICU Doula support, and really just finding your web of resources. And that's one of the things that I know you are doing too with your work. So share a little bit about the work that you're doing with He Has Miracles and also how can people who are listening get connected with you?
Michele Salmons (1:07:45)
you
Mary Farrelly (1:07:50)
and learn about all that you're doing.
Michele Salmons (1:07:50)
Yeah.
Well, what things look like right now really stemmed from while we were in the NICU, I...
don't know if every NICU has this and if they don't they should, so if you're working in a NICU right now ⁓ this is not something that exists like please take this and run with it, but the second NICU that we were at had a library and I was reading the same books to Harvey on repeat because I couldn't do much else and one day I walked to the library just I needed new books, something different to read to Harvey and I found a book ⁓ called The Miracle Mindset by a woman named JJ Virgin and in no way is this a
book, but it was for the parents and ⁓ not to take us off track, but what her book is about is that her teenage son gets hit by a car and ⁓ has a very traumatic brain injury and he's pretty much given the same odds as Harvey, nothing, you know, had no hope. And what JJ says is that she is determined to have this experience be the best thing that ever happened to their family.
And I read that time and time and time again thinking I could never like I could never.
picture our experience being the best thing that's ever happened to our family. And I've tried that idea on and it still doesn't fit me. It still isn't the right coat for me to wear. But instead I have from the very beginning decided pretty much from reading that like maybe this isn't the best thing that's ever happened to our family, but we're going to use this for good. We're going to use our experience to help other people in some way, or form. And I didn't have any clue what that meant until many months later when I just had this vision that I needed to create
something called He Has Miracles and Harvey's name is Harvey Alexander Salmon so his initials are H.A.S. and he has truly been our miracle. ⁓ Everything about him is a miracle and so I established He Has Miracles which is very much in its infancy. Right now it exists on Instagram as a way that we share with the world some of our experience, some of our journey. I realized that
how could you understand it or how could you even know that this is what this world is like if you don't have exposure to it? And so I am trying to really gracefully share our experience for others to start to understand. And even if they can't understand, just have that awareness to say like, our family challenges look like this, your family challenges look like that, neither one of them is better or worse, but.
Mary Farrelly (1:10:12)
Mm-hmm.
Michele Salmons (1:10:32)
If you can see other people, you can have more compassion and grace and love and even like helping their children to better accept my children. So, ⁓ I don't exactly know where it will take us quite yet, but it will be something that can help other families like ours. It can help families that look nothing like ours. but if it's someone who says, Hey, my child is not tolerating feeds. I'm interested in pureed food. Like ask me whatever questions you have. I want to be.
Mary Farrelly (1:10:41)
Mm-hmm.
Michele Salmons (1:11:02)
open book about sharing this. I think the world really needs to see what this life is like.
Mary Farrelly (1:11:08)
Yeah, well, you're doing an incredible job. I remember in our one of our last sessions, like you hinting at this idea that like you wanted to find a way to continue to give back, even though in that moment you were still very much in the early stages and not knowing what that was going to look like. So I know this is the beginning of this work for you. And I think
Michele Salmons (1:11:14)
Thank
Mary Farrelly (1:11:31)
The Harvey story is going to touch so many people in as you said in so many different ways that we don't even realize Yeah, and he is just so lucky to have you as his mama truly He is ⁓
Michele Salmons (1:11:39)
Thank you.
I am,
thank him often for picking me. And one of the first episodes we did with another mom talked about spirit babies. And I resonated with that really greatly, ⁓ that our children pick us because there's something about us that they need to learn through this current lifetime. And I have no idea what I can offer Harvey because I feel so incapable of being the mother to a miracle. Every mother is a mother to a miracle, ours is just slightly different. And I thank him all the time.
Mary Farrelly (1:11:52)
Mm-hmm.
Michele Salmons (1:12:14)
for choosing me because whatever he needed from me, I needed a million times over from him.
Mary Farrelly (1:12:20)
That's beautiful.
It's true. mean, even just watching you guys connect in this way, you're one little soul together in one being and you're just beautiful to be a small piece of your story and even just to continue to listen to how ⁓ you've continued to evolve and grow. So as a final closing question, if there's a parent listening who's just in that early stage of
Michele Salmons (1:12:24)
Thank
Yeah.
you
Mary Farrelly (1:12:48)
Survival mode. What would you want them to know about hope and healing and just what comes next?
Michele Salmons (1:12:54)
you
If you're anything like me, you sadly will lose hope on a number of occasions. And that is so human of you. But what really, I mean, kept me here, what really kept me putting one foot in front of the other was my faith. And I think whether it's your faith that's wavering, and you can hold on to your hope, or it's your hope that's wavering, and you can hold on to your faith, my faith has gotten us to where we are today.
Make sure that if you're gonna release one of them, which again is so human of you and like if you feel like it's That light is dimming like it's okay. Don't Force it to stay with but just hold on to the other and know that like with time that hope will come back because for me hope was
knowing that something good would happen and I didn't always know that. I still don't always know that, but for me my faith is I trust that whatever happens, or bad, is going to be okay and that there is a bigger plan, good or bad, for us here, for Harvey too. So yeah, I mean it's totally human if the hope wakers, but hold on to your faith.
Mary Farrelly (1:14:13)
Thank you. Thank you for being here today and thank you Harvey for joining us too and being such an important voice in sharing his story. I hope he has his most snuggly little nap ever. And just thank you for being here. We're just honored to have you here and if you're listening and you want to get connected with Michele, I'll have her Instagram in the show notes below and we'll have to have you back to continue to hear more about your journey with Harvey.
Michele Salmons (1:14:16)
in this morning.
Thank
I'd love to chat more, Mary. Thank you for having us. All right, bye-bye.
Mary Farrelly (1:14:43)
Thank you.