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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.
Mary Farrelly (00:00)
Discharge day is supposed to feel like the finish line, but for many NICU families, it's actually the beginning of a whole new learning curve. My guest today, Christine Herndon, knows this reality well. After spending 10 years navigating infertility, Christine welcomed identical twin girls born at 32 weeks following a high-risk modi pregnancy. When her daughters finally came home, they didn't come home alone.
They came with oxygen, feeding tubes, pulse oximeters, and a house suddenly filled with medical equipment. In this episode, Christine shares what it was really like to bring the NICU home. The fear, the logistics, the insurance hurdles, and the system she built to not just survive, but find confidence and rhythm in caring for medically complex babies at home.
Mary Farrelly (01:10)
Hi everybody, welcome to this week's episode of the NICU Translated Podcast. I'm so excited to have Christine on the show today. Welcome Christine. So today we're gonna kind of touch on the reality of bringing home kiddos from the NICU that have extra treasures coming home with them, extra tubes, wires, gear. So not only does the lived reality of your memories and your experiences of the NICU follow you home, but you have pieces of actual equipment that come home with you too.
Christine (01:18)
Thank you.
Mary Farrelly (01:38)
Welcome Christine and let's just start at the beginning. Tell us a little bit about who you are and maybe kind of a little bit of how your NICU journey began.
Christine (01:46)
Sure, so I am a mother to three now. Ava, my oldest, is almost five and the twins are now 15 months who were in the NICU. My journey to motherhood was a long one, about 10 years altogether front to back in the making. Got married in 2013, a little older in life at 33. Started our initial evaluations for infertility in 2014 and started IUIs in 2015.
After four IUIs, we moved to IVF ultimately in 2017 and did a couple IVFs, had some ups and downs with that, but ultimately got one euploid embryo. I did have a natural pregnancy in the middle, which put the hold on IVF and transferring that embryo, and I lost that baby at 17 weeks as it was not a viable pregnancy.
So ultimately transferred my girl Ava Rose, who might make a cameo here. In June 2020, she was scheduled to be transferred in March 2020, but all elective procedures were shut down during COVID. Transferred her in June and she took and every week she was still there and she was born on February 24, 2021. it was overall a very.
basic pregnancy with all the things, illness, vomiting, all the kind of stuff that comes with it. But being my age, I was carefully watched. So I had a lot of extra ultrasounds and whatnot. But overall, it was uneventful. It developed some hypertension, potential preeclampsia at the end, which brought her a couple days sooner than they wanted. But all in all, I was healthy. She was healthy. I was healthy. Everyone was healthy, which was great. So after that experience, we thought we were finished with IVF.
from the emotional, financial, we became adoptive parents, approved adoptive parents, waited for a couple of years, had a few placements fall through. I wasn't getting any younger. And so we went back to our IVF doc and said, all right, what do you think? Did some blood work and he said, let's try. So we did four more IVFs back to back. Unfortunately did not yield any euploid embryos. So we went to donor eggs, which is something that a lot of ⁓ older women do and some younger women, something that
It's getting more more talked about, but not as much as probably it should. And we chose a donor, went through IVF with her, and she did not produce any euploid embryos. So we went with another donor. so that was quite the emotional journey as well to say, have a funeral for my eggs and choose another for only to fail. But we chose a second donor that was successful, generated three euploid embryos.
We transferred one in May-ish 2024, and it split into two, which I found out at my eight-week appointment, which was a surprise. ⁓ So they first thought they were Mo-mo twins, ultimately saw the membrane, so Mono-di twins, which was a lot less scary. And they wound up coming at 32 weeks after multiple stays in the hospital previously.
They finally at 32 weeks said we got to these babies out. We can do more for them on the outside than the inside. So I went from all the emotions of donor eggs and am I going to feel the same about these babies as I do about my existing daughter to fighting for their lives in the NICU. So it was quite a transition and I didn't even question once if they were my babies. I went straight from that delivery into the NICU and
their lives. So that's the very long 10-year story short of how I got to these three amazing babies.
Mary Farrelly (05:16)
Wow, what an incredible journey. feel like one of the things that we don't always appreciate working with families in the NICU is the story that it took to get there. And everyone's story is different, but there's often so many chapters that have already been written before the NICU chapter even starts. So.
Christine (05:33)
Absolutely,
Mary Farrelly (05:34)
There's already so
Christine (05:34)
absolutely.
Mary Farrelly (05:34)
many lived emotions and traumas and joys and everything in between. So working with the NICU family is always especially important to be mindful of everything that has come before. So now you're in the NICU, you have these two new beautiful babies, you have an older daughter at home too, and you're navigating all the logistics. So what did your NICU stay feel like to you? ⁓
Christine (05:46)
Absolutely.
Yeah, yeah.
Mary Farrelly (05:58)
what were some roses and thorns is what I always like to say. What were the joys and what were those pieces that were like, wow, looking back on it, I wish this played out differently or this was really hard.
Christine (06:07)
You know,
I was so grateful to have such a support system through my infertility journey, through my donor egg journey. I found a group online, a couple groups, and I just was so grateful to have that support. But you know, it was tough at first because I was healing too. I had some trauma during the C-section placenta accreta. And so I was not well physically and also trying to figure out.
How do I get down to the NICU ASAP, advocate for these babies, await my three-year-old at home with my parents? How do I make sure she knows I still love her? And so that first 48 hours was a lot. Hyper emotional. I was so grateful to have a place for my, I tear up thinking about it, for my three-year-old to be, why my husband stayed with me as I was, there was just a lot going on, physically, emotionally, all the things.
It was difficult to go down there that first time. Now, I was grateful. My emergency C-section was late in the day. So when I was able to see them before they got whisked away, they told me that may not happen. But they rolled me in into the holding room. I forget the technical medical term for the holding room there in the middle of the ORs. And I was able to see them before. But see them with their CPAPs, right? So I couldn't see the little faces. So those big machines on them, all the wires.
all the things and that was hard not to be able to see their little faces. But I got to hold their little hands. One was three pounds, one was three pounds nine ounces, which as I learned in the NICU was a big baby as opposed to these micro preemies that we almost had when they almost took me at 28 weeks. So I was grateful they were three pounds. so it was twins and they had just opened some new twin rooms and they tried to keep twins together.
Mary Farrelly (07:31)
Thank ⁓
Christine (07:43)
and they put us in this room and ⁓ it was overwhelming. Each one had their own critical care nurse. Amazing. But the first thing when I came down they had little handmade hats on and I said, where do those come from? And they said, our donors knit these and they all want to make sure every family gets a hat for their babies when they come in and a quilt. And it was just those little things that I learned in this beautiful NICU community that how people give back because they want parents to not.
to be as comfortable as possible. So the start was difficult, but they stabilized within 48 hours. So the NICU, like a lot of NICUs, was at capacity. So they moved us to an overflow floor. And I learned later that they only moved their stable babies to the overflow. And that made me feel good. Nobody told me that downstairs. I wish somebody would have told me that downstairs before I went upstairs, but it was a much bigger room.
Mary Farrelly (08:25)
Mm-hmm.
Christine (08:32)
and we moved to that overflow floor where we spent the remaining of the 62 days in the NICU. I think the, when you talk about highs and lows of it, you know, that first week, CPAP, no CPAP, no CPAP, Brady Dsats all the beeping, you don't learn until you've been in there a long time what beeps to stop having heart attacks over.
Mary Farrelly (08:52)
you
Christine (08:52)
what wants
to have heart attacks. My technical background is environmental and safety. And I would always joke if I was on a job site, if I saw the safety guy running, I would follow them. And so if the nurse wasn't worried, I always looked at my nurse and I thought, well, if she's still sitting down, I can stay seated. And so I use that as my litmus test in the NICU is that if she could hear the beeps and she was sitting down, then everything was okay. And that was really helpful for me to remember.
Mary Farrelly (09:04)
Thank
Christine (09:20)
And I also had many times they did not stay sitting down and they came running in to do a stim and maybe even do the puffer to get them back. that was probably just learning kind of the pulse in the NICU, when rounds happen, how nursing shifts change. know, sometimes there's 12 hours, sometimes you get eight. They're short nurses. They swing between units.
So getting into that flow was difficult, but once we got into that flow, I settled a little bit. I was healing physically and I was able to get into a bit of a rhythm with taking notes during rounds, all that kind of stuff. So I could keep going, but I'll stop there for the at least initial.
Mary Farrelly (09:59)
Yeah, it really is. The NICU is it's almost
like you're entering a foreign country. Like you have to learn a whole new language, a whole new dynamic and flow and culture and food. There's so much to learn. as a question that I have, as we're kind of thinking that they're like going through pregnancy and being high risk through a good chunk of it, having twins and having different things going on.
Christine (10:10)
Yeah, yeah.
Yep.
Mary Farrelly (10:23)
Did
you have any ability to do any NICU prep prior to your delivery or did that not really kind of come up? is it like for you?
Christine (10:29)
You know, it's funny, it's
a great question. At first it was so new just realizing that this embryo had split and then understanding that we had a growth restricted baby, baby A did not have a direct placental connection, baby B did. And we had that constant size difference during the pregnancy. I mean, I was in the hospital twice a week for ultrasounds, for NSTs. And so so much early on was just
understanding what the protocol would be for early intervention. They were looking, see it's been a year now, it's been 15 months. What's the common thing with twins that can happen that they can intervene? Twin to twin Yes, yes, yes, yes. So that was, we were always, I was always on for that. So then finally, as we got closer to viability, I said to the doctor, wait a minute, what?
Mary Farrelly (11:03)
Twin to Twin Transfusion.
Christine (11:14)
if these she said at this point you wouldn't even do anything for twin to twin we just have them you know and they started giving me the statistics between 24 weekers 26 weekers and how much that two weeks makes a difference i was at university michigan which is a teaching hospital academics they have all these these studies and stuff they say and and so as i learned how that viability could change so dramatically between 24 26 28 i started saying okay wait a minute what what happens if they start if they come at these marks what you know what does this nick you look like so they just set me up
Mary Farrelly (11:40)
Mm-hmm.
Christine (11:45)
for maybe doing a NICU tour. I had been admitted a few times after my NSTs, because they just kept losing sight of the heartbeats. And at 28 weeks, they started giving me the lung shots. And I had a friend there, a friend of a friend that was a labor and delivery nurse. And she said, did anyone tell you what these shots mean? And I said, no. She goes, they don't give them to you unless they're going have these babies soon. And I said, I haven't even seen the NICU yet. Like, it's just, I can't. Like, wait, you know?
Mary Farrelly (12:10)
Really?
Christine (12:11)
And so they did. I there was more about getting me out of there. And so I wish in hindsight, knowing even at the beginning of the pregnancy that I was going to I was going to have some NICU time. I wish I I wish somebody would have said earlier, why don't we walk you through or just tell you what you're going to see? It's terrifying. These are all these little babies under the alarms going off everywhere. There's nurses running constantly. And so I didn't get to what did happen is when I went back in at 30.
Mary Farrelly (12:26)
them.
Christine (12:38)
I went back in at 30, then 32, the doctor there, one of my favorite MFM doctors, she said I'm gonna have the NICU nurse come up. And she came up and talked to me and said, this is what's gonna happen. I don't know if they're coming today. If they come today, let me walk you through it. And that was so valuable. She told me, you may not see them in the OR. We have to get you out. Where do want your husband to go? Do you want him to stay with you? Do you want him to go see the babies?
And that was just such a valuable conversation, even though I didn't lay my eyes on the NICU, that would have been a valuable conversation to have sooner. I'm fortunate I had it before it happened, so I wasn't scared that they had taken the babies away. I'm not going to hear them cry. All the things that you watch on TV and movies, all these beautiful things that you're not going to have. But somebody had said, just remember, this is normal. This is what's going to happen. So I did get that, but a little bit because they had no choice.
Mary Farrelly (13:09)
Mm-hmm.
Christine (13:33)
⁓ that was happening, right? So I would recommend anybody to say, you know, how can I get smarter about what's going to happen at delivery? And if I do come in here for emergency c-section, or I am kept after an NST and this becomes an emergency delivery, walk me through what could happen. And especially because I had emergencies too, physically. I personally was being called with all different code colors that I didn't know what they meant. So that would have been.
Mary Farrelly (13:34)
like a crash course.
Christine (13:58)
That would have been something that I wish I would have advocated for. That in the spirit of what you do, had I had a doula that understood the NICU and a high risk pregnancy, that I would have advocated for my client, my patient to get that information as soon as possible.
Mary Farrelly (14:14)
Yeah, one of the reflections that I had as I started doing more NICU dual work, looking back on my experience as a NICU nurse is like so many families would come to me so overwhelmed by the environment. what, all the, a lot of the trauma comes from lack of understanding and fear of the NICU. And so there's so much potential, especially with families that are in antepartum, are there having these conversations, bringing in more NICU knowledge and awareness. As you said, just a simple conversation of here's,
Christine (14:29)
Yeah, yeah.
Mary Farrelly (14:43)
what it might look like can decrease the fear. if you don't know what you don't know, right? As someone who's never set foot in the NICU before, as a NICU nurse, we normalize it. Like, oh, it's very normal that they're going to go on. Exactly. But we don't, we sometimes forget that that is not normal. Like our world is not, not reality to a certain extent. And so one of the key pieces where I'm trying to have NICU Doulas be placed is in
Christine (14:53)
That's a Brady dsat no big deal. The lead's loose, no big deal. No big deal, just a loose lead. Yeah.
Mary Farrelly (15:11)
Antepartum settings so that they can go in with families and have those conversations and and game plan a little bit too Even what to do with the sibling how to introduce it. So there's so much potential there
Christine (15:20)
That was a big thing too, that the sibling piece I can't talk enough
about. And the one thing I'll add to what you said is that I have a background in, I mean, I have a science degree and whatnot, but I also through various family member situations have always been the delegate advocate. So I'm very comfortable in a hospital. I'm very comfortable going in and asking doctors questions. I think that helped me tremendously. That'd be another thing I would say to NICU doula is,
Is your is your patient is your your client there? What is their comfort level of hospitals? Have they ever been in a hospital? Have they ever been in a critical care unit? You know what? What is their experience? Because I think that gave me a comfort that I didn't mind asking the questions I didn't mind having the attending in the room and asking them to stay or asking them to come back. I felt very confident in in bringing them to the room and I think that's a big piece too is how much does the expecting mother how much they've been exposed to a hospital and critical care.
in a hospital and because of things in my life, have significant exposure. So the room didn't scare me as much as, you know, learning about what it means for my babies here, but I felt very comfortable being in a hospital setting and not all people can even walk into a hospital to visit somebody and feel comfortable. So that's a huge piece too, I think, in preparing for potential, especially if you know there's likely a NICU stay. I know some people have no concept they're going to have a NICU stay. It's perfectly healthy until the 11th hour.
Mary Farrelly (16:29)
here.
Okay.
Christine (16:48)
So, but that's something I'd always consider a doula to say, you know, to learn about their customer of, tell me about your experience with the doctors in the hospital, you know, and things like that. I think it's a big piece.
Mary Farrelly (16:54)
Mm-hmm. Yeah, because some people are bringing
very real trauma into experiences that they've had.
Christine (17:01)
Lots of
trauma, terrified, unknown, all the things. The hospitals, the one where people die, you know, all the things, all the things. Yeah, for sure.
Mary Farrelly (17:07)
Yep. There's so many
layers. One of the big things we talk about as you're saying in becoming a certified NICU doula is learning to grow your ability to improve your client advocacy skills, like empower them to.
Christine (17:18)
Yeah.
Mary Farrelly (17:22)
take care of their baby. We take care of the family so that the family can take care of their baby and advocate and learn. But it's two pieces. It's building the advocacy muscle and also having the context and the education and the understanding of the environment to ask those questions. You might have a concept of it, but being able to then have that additional layer of understanding to then be like, I'm really honing in on the question I want to ask. So that's a great point and really doesn't stop at discharge too. So now we've gotten to the point where your kiddos have gone through their NICU stay.
Christine (17:46)
No, no, no.
Mary Farrelly (17:50)
⁓ and you're preparing to go home. So what did your discharge prep look like? And maybe even a little bit about those first like hours to days at home. How did that transition?
Christine (18:00)
Sure, sure. So
through the 62 days, just to give some context, we were very fortunate. We didn't have any emergency surgeries. We ⁓ had blood transfusions, which was terrifying. So I can only imagine how I felt for the blood transfusion, how other parents may feel if their child had had surgery. had ROP, Brooklyn had the ROP, and some other things that go with it, lots of stims, some scary moments. But overall, as I've learned, we were very fortunate in perspective to other
NICU babies of what we experienced there. I think more the reason that as we got to the point that we plateaued and I become friends with so many nurses, we had so many primaries. When you nurses go into your room in the morning and duke out who gets what room, I heard I was very popular. And a lot of people would fight over me. then nurses would pass me like, you got her today. You know, have fun. So I tried to keep it fun. know, nurses are listen, everyone's understaffed. Everyone's working these insane shifts.
And everyone's tired. And I want to know that when I go home, that those nurses are caring for my babies and having a relationship with them was very important to me. So I did befriend a lot of them. And so we were there for the holidays, right? So they were born on November 8th. We left on January 8th, which was the day they were due. And it was sometime after Christmas.
you know, where they needed a stim in a week, and I forget the protocol, it was either one week or two weeks or maybe 10 days, I forget, where the doctor just, once there's a stem, the whole count starts over again of when you can leave, yeah. And my nighttime nurse, my favorite primary nighttime nurse, had to stim them, and she said, Christine, these babies aren't ready to go home, and I said, oh, I trust you, you're here with them, you know? And so, but we started talking about...
Mary Farrelly (19:28)
countdown.
Christine (19:45)
we're just not making progress. We've plateaued. And a couple of nurses said to me, you know, we see when these babies go home and they're being held by the same couple of people, they don't have the negative touch of the hourly four hour temp checks, you know, all these things that they really thrive. And are you comfortable going home on a feeding tube and oxygen? And at first my immediate reaction was absolutely not. No, I'm staying here.
Mary Farrelly (20:12)
Thank
Christine (20:14)
until these babies can eat and breathe on their own. That was my immediate reaction. And I'm very comfortable, like I said, I have a science background, environmental, my previous company ran occupational health clinics, I'm comfortable in a medical setting and I was like, no, these babies are going to be thriving when I walk out of this hospital. then, maybe that was probably before Christmas actually, then we had the STEM, and then I was really starting to get NICU fatigue at that point because they
we're not making progress, I just wanted to get them home. And honestly what happened was, right before Christmas, one of my nurses said, I think they're gonna get out of here in the next couple weeks. Do you have everything ready at home? That's actually really, when I think back, what really facilitated me wanting
later, you know, within days or weeks later wanting to bring them home. So I said, I think so, you know, I, but I haven't, I've been so focused on the NICU. I haven't thought about, do we have everything? So I spent a day at home and I set everything up as if they were coming home the next day. Bouncers, this, that, I realized, my gosh, I made a $800 Amazon order that night because I realized I actually didn't have half the things I thought I had ready to go, especially coming home with twins.
And I was on Marketplace, I didn't want to buy swings new. I had everything from my first, I was trying to, what do I need doubles, what do I not? And I really realized I hadn't really thought about it because they'd come early and I'd been in the NICU. Once I did that and the house was ready for them, emotionally I was a wreck. Because I wanted them in their bouncers. I kept staring at the bouncers every night we'd open the NICU and I'm like, want them home. And when we didn't make any more progress, January hit, the holidays are over.
you know, no one's bringing, you know, donuts and stuff to the NICU. And Santa's not coming through with balloons and blankets anymore. And I thought, all right, I said to my, I'd gone through the full cycle of neonatologist. And so the one that I started with came back and I said to him, I said, what do you think? I said, I think I can do it. And he was one of the really, you know, everyone's different. All doctors are different. He was really like the.
Mary Farrelly (21:57)
you.
Christine (22:08)
very patient, loving, and I said, what do you think? He said, I think you can do it. And he said, let's start. Let's start the process if you're going home. If any time you change your mind, just let us know. I said okay. So we had to immediately learn how to change feeding tubes, which is when I thought that's it. We're never leaving. I had to do it twice in front of the nurses before I was allowed to leave. I had to watch a bunch of videos. My husband and I both did. I told my husband, I said,
I had these babies. You're on feeding tube changing duty. I'm out. I did the two I was required to do, balled through the second one. The first one was great. The second one was not. But so we got through that. We learned that. And then we really started taking notes. You know, every time we'd have our nurses in there, I was taking notes on if there's an air gap in the tube and, you know, the gravity, because we're on gravity fed now, we're not on pumps. And, you know, how do you
check to make sure it's going through like all the things I've been watching but I hadn't done it so I started doing everything because usually when they fed the babies I'd go to pump so so now it's like let me you know hang the two put the food in and and everything's being fortified don't let me forget to talk about the nightmare of fortification so so I ⁓ I started doing everything and I started getting more confident started taking notes I said okay we can do this we can do this so that's that's what we did
And so we started working up through all the discharge process, the car seat checks, everything started. Everything started moving for discharge. You know, there are some lung checks they needed to do. The pulmonologist wanted to see some blood work, CO2 levels. So all those processes started and we started taking notes for discharge. And so what happened was for discharge, we were assigned a discharge planner and they walked us through
A few things, but I was just doing everything they told me to do. Again, I'm just medically savvy. was calling places, calling insurance, what do we got to do, you know, all that kind of stuff. So where would I like to change things? So I'll start from there, where the transition from hospital to home and where I really think some understanding and a NICU doula could really bring some value. So the nurses taught me how they do their job. The nurses are nurses. They do not take care of children at home.
Mary Farrelly (24:21)
Thank
Christine (24:23)
They're not home nurses. They taught me how they do their job at the hospital which included for example every time you feed the baby you get brand new supplies you open them you trash them and They stock you because the insurance company is gonna be delayed two to three days and getting the supplies to your house at a minimum So they you get bags and bags of everything you need all the tubes everything all the lines bags and bags and bags and bags so so that's
That's first. I expected to feed the babies on the lines and the tubes that we fed in the hospital. That was my first assumption. So we can return. The second one was the oxygen people come and talk to me. Apparently the regular oxygen lady was on vacation. I got a new oxygen lady. She didn't know how to work the pulse oxes. That's when I first started getting overwhelmed. And how they were, where they were triggered at pulse versus oxygen levels, what was going to alarm, what wasn't going to alarm.
Mary Farrelly (25:13)
Mm-hmm.
Christine (25:22)
That's when I started second guessing maybe this is too much, but I was listening, I was taking notes. said, okay, okay, we got this, we got this. The oxygen will be at your house tomorrow. Okay, fine. So you go through that, right? So I'll kind of skip to the oxygen coming home. There's a few other minor things, but being that the big deal, we were going home and feeding tubes and oxygen. What did that mean? So I'm home the next morning when oxygen comes.
And the guy comes in, these oxygen companies are used to bringing oxygen to elderly people, period, the end. I would like to open a pediatric oxygen company. And I told all the social workers this. I talked to two social workers at the hospital and told them what happened. And I said, how long would this would have taken to figure out that the oxygen guy at home, who's a respiratory therapist, by the way, who's setting everything up, told us we could use a 20-foot line, 30-foot line. And I said,
You know, this is a quarter liter of oxygen. I'm no respiratory therapist. Tell me how that oxygen in a 30 foot line, if there's gonna be any oxygen left. Again, I do crazy environmental work. I look at like a chlorine residual in a water line. I'm like, there's nothing left at the end of that line. There's no way my baby's getting oxygen. And he said, no, I do this all the time. Call the manufacturer. So I called the manufacturer. The manufacturer was like, absolutely not. Five feet max. He said three feet ideal.
Mary Farrelly (26:35)
Right.
Christine (26:39)
⁓ and by the way, when you bring these huge oxygen concentrators home, they can blow your circuit. So you can't have them both plugged into the same plug if you have twins or if you have two at home, two oxygen countries, whatever. They have to be in different circuits. They will blow your circuits because it takes so much power. So that and then they had a pediatric flow meter on it because big oxygen concentrators can only go down to two liters. And most babies don't need two liters, need a quarter or a half or whatever it is. So.
Mary Farrelly (26:59)
Mm-hmm.
Christine (27:04)
That was quite the thing. I also delegated that to my husband to figure out the pediatric flow meters because I was getting really overwhelmed. And he sat with the guy, figured it out. How do we know to add water? All that kind of stuff. so first and foremost, and I said to the pulmonologist, how many appointments would it have taken to realize this baby wasn't de-satting, this baby wasn't getting oxygen? And so that just blew my mind that the oxygen company was that uneducated. A respiratory therapist was that uneducated about pediatric.
Mary Farrelly (27:08)
It's there.
Mm-hmm.
Christine (27:34)
Oxygen that was recommending that you could have a line going through the whole house like my 75 year old mother does no She's on four liters You know versus a quarter liter a baby So I can't express that enough even the palm and even the social worker at pulmonology is like I'm making a note of this She said we would have taken us months to figure out this had nothing to do about the baby's lungs. It'd the baby's not getting oxygen So so that to me how many families are getting these these?
Mary Farrelly (27:40)
Mm-hmm.
And you wonder how many families that was happening to.
Christine (27:59)
Oxygen concentrators at home from people are just so accustomed. It's not their fault They're just used to giving it to the elderly population not pediatric patients So that to me was just huge huge you make sure the line is appropriate to get whatever volume of oxygen that baby's on that they can get it and call the manufacturer the pediatric flow meter if you don't know that's exactly what I did I'd open a chat window with them. It was a respiratory therapist said absolutely not I don't who's telling you that no and So that to me is just huge, but three feet is not long
So now you're on a three foot oxygen line with a pulse ox that has a longer line than the oxygen. You cannot move anywhere. So the other thing you really got to think about is where are you setting up your NICU at home? So it took us a few times to get this right. Ultimately, we had a rectangle carpet by a couch in front of a TV and we lived on this carpet for months, right? Months. Because when they were still in oxygen full time and when they transitioned to night, it changed.
different challenge, different day. But ⁓ we lived on that carpeting because we needed somewhere we could all sit comfortably, but you can't move. You can't go do dishes. You can't do anything. So the baby is there. And when they're little and they just sleep, fine. But as they grow and they're not just sleeping and you need to hold them and you want to play with them, you want to do all the things you do with your newborn baby, you don't have much of a radius. So to know that you're setting yourself somewhere up that you're comfortable.
Mary Farrelly (29:17)
you
Christine (29:20)
You know, you can run to the fridge quickly or bring a cooler near you or whatever you need to do to be comfortable. So you've got to find that place at home where you can be on a short line with a pulse ox with enough plugs, with enough plugs, with enough plugs, whether you need to bring surge protectors in, whatever. So there's a safety thing here. You don't want extension cords and new extension cords and extension cords. So I can't stress enough finding that place in your home, which is where think a NICU doula would be killer, is come over and say, okay.
Mary Farrelly (29:32)
Mm-hmm.
Christine (29:47)
Where do you spend most of your time? Do you have other children at home? Where do they spend most of their time? Let's find a place you guys can live as a family, at least for the next few months. So that location, I think, is so key. Now you've got the feeding tubes on top of it. Now these are NG, right? Not G tubes. So we had to find places, and we were gravity fed, so I had to find places to hang these things. And so command strips are your best friend. 3M command strips.
Mary Farrelly (29:53)
Yeah.
Christine (30:12)
And what we did is we put them on TVs, like on the back of TVs, because we didn't care if it pulled some of the paint off the TV or whatever. I'll tell you where we put them in our bedroom shortly. But where we lived all day, we had them hanging from both sides of TV. We had two plugs that were hanging here. We had two different outlets with one extension cord and power surge here, and then the pulse axis. And it was a trip hazard that my, at the time, almost four-year-old, know, thought as a fun challenge.
Mary Farrelly (30:18)
Mm-hmm.
Christine (30:40)
to how she could get through without tripping, as we all did. But having that area, knowing that you're on a proper line for oxygen, you can properly gravity feed and hang, and that you can be comfortable, I think is huge. Not a single person brought any of that up to me as part of discharge. It was almost like you're just gonna go home and there's gonna be a NICU there. In hindsight, look back like we were set up to fail.
Mary Farrelly (30:56)
Mm-hmm.
Mm-hmm.
Mm-hmm.
Christine (31:05)
from discharge,
not by the nurses, not by the nurses. We were set up to fail from a discharge planning perspective because we were not set up at home to operate the way we were trained to operate in a very short time, no medical degree, no schooling, and our short time to go home and be nurses, you little triage nurses. We were not set up to, we were trained one way and sent home a different way and we had to adapt. And by the second night at home, I was in tears when Cameron pulled her tube out.
Mary Farrelly (31:08)
Right.
Christine (31:34)
And I said, we got to go back. We're never going to make it. We're never going to make it. We didn't go back. didn't want them to have all the blood work and the septic workup and everything because I knew they were fine. But by that second night, I said, this is too much. And I felt confident leaving. And by the second night, I was overwhelmed in tears. Just we should have stayed. We never should have left. So had we been properly set up at home, that would have removed so much stress of having us set up at home.
Mary Farrelly (31:59)
that, yeah, thank you for sharing that and painting the picture so vividly because one of the biggest pieces of disconnect that I see, and especially as I've continued to work as a NICU Doula and helping with the transition to home is how little the NICU truly understands of the reality of life after discharge. is, people are expecting, and I believe it should be, that the NICU is the same ride. You never have to get off the roller coaster, right? You continue the roller coaster to home and there's
Christine (32:15)
home. Yeah, yeah, yeah.
Right, right.
Mary Farrelly (32:27)
continuity of care. But what usually happens is you have to get off the NICU ride and get on an entirely separate ride. And there's this massive gap of time in between there, where as you said, families are literally both feel and are actually set up for not having success, for being readmitted, for feeling like they're failing their child, setting them up for their own mental health experience around it. Because,
Christine (32:52)
And re-admits is tough, they told me. Re-admits
is tough. You get a full septic workup, they're getting plugged, everything, all their IVs have already been taken out, they're all getting plugged up and stuff, and nobody wants to put anybody through that. You know, these little guys through it. Right, right, you're going to a normal floor. Yes, you're going to normal floor. And so that was, and I knew that, and so that was what I was like, I'm not putting these babies through this and going to a normal floor. You know, they're not gonna be considered critical. It's just that they can't eat or whatnot.
Mary Farrelly (32:56)
Yep.
Nope.
And you're not usually going to the NICU either. You're usually going to the PNAC.
Mary Farrelly (33:22)
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Christine (34:05)
You know, the other thing too, as I assumed, again, I feel fairly educated on medical things, but like all the parts were different. So whatever my insurance company contracted with, the feeding tubes looked completely different. And I'm looking at the milliliters and stuff like that. And again, like, you know, I've been in labs and stuff, so I felt confident looking at that, like, just, I mean, for me, they look so different. And then they didn't come on time. And then when they came, they sent me like, I had to look back like five.
I'm like, I don't understand. They eat eight times a day, I said, what am I supposed to do? I'm not, oh, these are supposed to last you a week. I said, I'm sorry. What? So all of these, I'd thrown away these precious, beautiful feeding tubes for a week and I'm supposed to be washing these out. So, and washing the lines out, cause I don't want stale milk cause it's being fortified. It's not all breast milk, right? So it, know, and so we were supposed to be washing this out. had no idea.
Mary Farrelly (34:46)
Mm-hmm.
Christine (35:00)
We had no idea. it was honestly the relationships I had with the nurses, calling them, texting them, God bless their hearts. They were all like my collaborative NICU Doula together. These nurses that I had, or we would have wound up back in the hospital because I had them to text because I'd gotten to know them so well. I got their phone numbers and I was texting them constantly, you know? So having that, I mean, I called the insurance company, I called our insurance broker. I was so frustrated that we weren't getting the materials we needed to be successful with the feeding tubes. I mean,
Mary Farrelly (35:09)
Bye.
Yeah, yeah.
Christine (35:28)
And so I don't feel like you should leave, going back to the purpose of this, without knowing what is your insurance company going to give you? And how does that compare to the equipment you have at the hospital? How often is your insurance company, and we all know insurance companies are challenging, what does their magic equation say? One feeding tube is worth five days, three days, 10 days. Like, what is the expectation? Because cleaning those things is not easy. And when you are sleeping in 45-minute increments, and at 3 a.m. you've got to clean, especially with twins at home, you can't take turns.
and you're cleaning these lines, you're exhausted. You're exhausted. And so it's a lot to ask parents to reuse feeding tubes when you got to keep them. Now I did get a little trick. I don't know if this is probably not medical grade, but to put them in the fridge so you didn't have to clean them every time so that whatever was in there would stay good for the next 24 hours. But still it's a lot to track. And so if I had like a little cheat sheet, you a little table like, okay.
Mary Farrelly (36:10)
Mm-hmm.
Christine (36:21)
open feeding tube, put the tape around it, you know, 116. So you always knew the date you pulled that feeding tube and the lines out of the package. And so let's say it's supposed to work for 10 days or whatever, you know, because you're not going remember. So you're cleaning it, cleaning it. And then you know, OK, here's day 10. Oh, it's the 26. You know, I've got a little notebook. OK, change it today. Like I think a setup of a checklist for how all the
to make sure that you're not contaminating anything, right? That's the last thing you need is to get bacteria in these lines. And now you've got a preemie that's come home, and maybe not even a preemie, just a baby that needed the NICU, that's come home and gets exposure to bacteria that changes it. So I think a checklist of all the medical equipment and how long that it's good for would be huge so that you know when to change it, how to clean it out.
How long is it good in the fridge? You follow the rules of formula breast milk fortification, whatever, to make that happen. so I will say, can I move to fortification or did I jump? Sorry, I could talk all day about this. ⁓ So they gave me the milk room came up or the nutritionist came up and gave me this piece of paper about how to fortify. Look, pretty simple.
Mary Farrelly (37:22)
Absolutely, yes. No, this is so valuable.
Christine (37:37)
I'm like, okay, you know, and I don't remember now, you know, but you're like, okay, eight ounces of breast milk, okay, this many scoops of that, you know, because you're not adding water for fortification. I thought, okay, I can do that. But then I got home and I was like, wait a minute. I don't have anything that says one eighth or one 24th. Like the measurements of fortification, you do not have measuring cups or spoons or anything in your home that has the increments for fortification.
It does not exist. I had order them at Amazon. Also something that would have been nice to know that, if you're fortifying, what kind of teaspoon do you need? needed teaspoons. I don't even know what I'm going do with them. I'm never going use them baking. I have them in my drawer still. But I just, I didn't even think. I don't have spoons that have these measurements on them. So right away, I was overwhelmed with fortification. ⁓ The Dr. Brown bottle saved my life, the big bottle on Amazon.
that someone recommended to me that that saved me so I would do batches. But of course you're also considering if you're if you you if you are pumping and you are fortifying how long the batch can stay good. It's it's a lot again to have like a little square checklist saying OK I made this batch on this day at 8 a.m. because you're not sleeping you know nobody's sleeping. How long is this batch good for right because you don't want to lose it especially if people are pumping right because it's precious precious gold that you're throwing out the door.
Mary Farrelly (38:36)
Mm-hmm.
Thank
night.
Christine (39:00)
And even if it is formula, you're still fortifying formula. So even if you're not, if you were unable to pump, I pumped the whole time in the NICU. And by the time we got home, every time I would pump in the NICU, I'd have a nurse doing something. Well, when I got home, I was the nurse. So my supply started tanking. And I finally had to decide that holding them was more important than me pumping. And I started thinking, but to go from this huge supply in my freezer to tanking, it changed all the equations of the fortification.
Mary Farrelly (39:13)
Mm-hmm. ⁓
Thank
Christine (39:26)
Took us 10 days to get our first appointment with the feeding clinic. And I think a feeding clinic, what I've learned is a luxury that I had at University of Michigan. That I was, because we went home on feeding tubes, we were sent to the feeding clinic. I didn't have my first appointment though for 10 days. I would have, again, knowing what I know now, I would not have left until a feeding, appointment with the feeding clinic was on the calendar. And if you are at a hospital that doesn't have a feeding clinic, who's gonna be your feeding clinic? When you've had a milk room doing basically, you know,
Mary Farrelly (39:33)
Mm-hmm.
Christine (39:55)
a lab, you've had a lab fortifying for you for however many days, who's going to be your feeding clinic at home? Once I got into the feeding clinic, amazing. They gave me all these cheat sheets, all these things, you know, like, and send you things that were just incredible. I'm like, where was this stuff? So if you don't have that and you are fortifying, who's going to do the math for you? Because it's not easy math. Not easy math. was chat GPT ing like, okay, this much this milk for, know,
Mary Farrelly (40:09)
Mm-hmm.
No.
Christine (40:21)
And I'm assuming, of course, it's accurate, you know, which you can't always do with AI. But but it it was a lot trying to figure out, you know, the right oxygen, the pulse, ox machines. We haven't even talked about how often they beep them when they were misprogrammed. That was another issue. And then the feeding tubes realizing we were we were that and then fortification like. I could have been set up for much more success had I had the position at home, understood what I was going to have to do, have a checklist for it.
Mary Farrelly (40:44)
Mm-hmm.
Christine (40:50)
understand how good things can stay when you're fortifying all the things but I mean it's a miracle we made it at home and I don't mean that I mean it's a miracle we made it at home and that we didn't that we didn't wind back in yeah it's a miracle it's a miracle
Mary Farrelly (40:58)
Mm-hmm.
and you just hear well. Yeah, you're
bringing up so many incredibly important points. And one of which is that one of my deepest frustrations and why I ultimately like left trying to do this from the bedside first is because of how siloed medical care is, especially in the United States. But this is a common issue. like everyone works in their silo. The nutrition worm works here. Radiology works here. Pulmonology works here. Inpatient is here. Outpatient is here.
Christine (41:27)
Yes. Yes. Yes. Yes.
Mary Farrelly (41:32)
Nobody's talking to each other. And they don't want to cross-eyed. Mm-hmm.
Christine (41:33)
and they don't want to cross silos. There's this, I learned
that, and especially in an academic hospital like Michigan, where nobody wants to step on the pulmonologist's toes, nobody wants to step on the neonatologist's nose, or toes, excuse me, and I'm like, aren't we all on the same team? We need to cross some lines here, So it is, it's very, very silent, but to me, that's where the concept of discharge planning comes in. I'm not suggesting that this discharge planner was right, wrong, or indifferent.
Mary Farrelly (41:38)
Mm-hmm.
Christine (42:00)
It's all related on medical billing, right? We all know what eventually drives this ship is what is insurance going to pay for, right? So understanding, and that's where I don't expect anyone to be an insurance genius, but being able to ask those questions and to call your insurance provider, get a care, because there's going to be someone assigned to your case. Find out who's going be assigned to your case. What do you pay for? What are the, because I had two different companies I could order feeding tubes from. I finally ordered it from one because those feeding tubes are the most similar as the ones I had in the hospital.
Mary Farrelly (42:19)
Mm-hmm.
Christine (42:28)
And so, but knowing that, I could have done a little research before and really got home and I wouldn't have gone home until all of that was there. And it was all to the extent I could control from an insurance perspective. They weren't booting me out. I was making the decision to go home because I was convinced by the medical community that we would thrive at home. Now we didn't, which is probably a different podcast, but we did not thrive right away. So in addition to having all this stuff, I wasn't seeing what everyone promised me.
Mary Farrelly (42:36)
Mm-hmm. Yeah.
Mm-hmm.
Christine (42:57)
They're
gonna be off the tubes, they're gonna thrive. We weren't off the tubes for weeks. There was no flip of a switch and everything was better. It would have been easier to maybe deal with some of the challenges if all of a sudden my babies were thriving, but they weren't. it was, people are working. You're still trying to work for the insurance, it's paying for things, you got other kids at home. It's a lot.
Mary Farrelly (43:10)
Mm-hmm.
Christine (43:22)
It's a lot and I think we could do a lot better for parents coming home from a NICU. Moms, dads, dads, dads, moms, moms, who's ever bringing this child home, adoptive parents, whatever it may be. I think with what you're doing, there's a lot of places we can set people up when they're coming home, even if they're coming home without equipment. But definitely if you're coming home with equipment or a fortification schedule, let's say you have no equipment, but you're expected to still fortify. mean, do it by the pitcher, Dr. Brown's all day long. Don't do it by the bottle.
Mary Farrelly (43:37)
Mm-hmm.
Christine (43:48)
Right? But just simple little things that can help people be successful for sure.
Mary Farrelly (43:52)
Well, I think that also you're highlighting a really great point for anyone that's listening to this that is in the NICU as a medical provider is spending time really as much as you can, like trying to find out what life after the NICU really looks like in your specific community. Cause every hospital is going to do this very differently also, which is another really fascinating and sometimes frustrating piece of the puzzle. But because of all these limitations for the quote system that we're in, which is really where I
Christine (44:09)
Yep, yep.
Mary Farrelly (44:21)
hope to fill these gaps with the role of the NICU Doula is someone who can follow the family's home, who speaks on behalf of the families, and who can help translate all of this. Because to go home and live in fight or flight continually, that's not thriving, right? Like, thriving is to be able to connect and relax and bond and heal together, not just go into from one survival mode to another. And so I'm sorry that that was your experience too, because that is so hard, but you clearly were
You are so meant to be these babies, mama. They're so lucky to have you on their team and advocate for them and create this environment out of pure chaos because they're 15 months out now. And so what does life look like now, now that you're out of the quote unquote weeds? Life doesn't end at discharge and the need, I'm sure, part of your lived experience. for those that are listening too, that are like in the weeds now, what does it look like?
Christine (45:03)
Yeah.
Yeah.
No, no.
Yeah.
Well, I'll say a couple things before I transition that quickly. It's one thing that you said that resonated with me is that I was so focused on being their nurse, if you will, caregiver. I I hardly call myself a nurse, but I wasn't enjoying them. I didn't have time. And the nurses were so good at the NICU. There were days they said, everything's good today. You want to just hold them? Skip a pump. Skip a pump. Who cares? Hold them. You're comfortable.
Mary Farrelly (45:19)
a year plus.
Christine (45:42)
And so I'm so grateful for those nurses and I had to remember that at home too. I was so focused on, you know, saturation rates and everything, but you have to remember, don't forget that to hold them and enjoy them. And I had to really at home make a cognizant effort of, you know, it's a quiet afternoon. I'm just going to hold them and let them sleep on my chest. They're plugged in, everything's fine. So don't forget to enjoy them through these challenging times. And I was so grateful for the nurses that constantly pushed that to me.
Mary Farrelly (46:00)
Mm-hmm.
Christine (46:10)
and I remember that at home, is not to forget to enjoy them. And so 15 months later, they're doing really great. Now they're gonna have, we had cousins that had preemie boys and they warned us, they said, first two years you're just gonna live at doctor's appointment, so just be ready for it. And that's been the truth. But the first several months were obviously the most challenging, plus it was freezing cold, so leaving the house with these little babies on all these machines in Arctic temperatures.
was difficult, but here we are at 15 months. We've slayed a lot of dragons. We slayed the ROP dragon, which was great. Fun fact, by the way, Stevie Wonder is blind because he was a preemie with ROP. Had no idea until recently. So that's interesting now that I've been educated in ROP. So we passed ROP. They passed their big baby eye exam. They're still under pulmonology care.
So I'll start with the positive and kind of backtrack a little bit of the last 15 months, but they're thriving. They're great. They're 20 and 17 pounds. They smile. They're meeting developmental milestones for their corrected age. And in some cases they're hitting it for their chronological age, which is great. And they're great, healthy babies, and they're going to be wonderful and they're going to be fine. And we're going to continue to track them. We have the early intervention services. That's another thing, you know, making sure you're working with your social worker at the hospital to immediately apply.
for those early intervention services, get those in the house as soon as possible. We've had some really great people, OT, PT, that have come to the house. We had great PT in the NICU, and I wanted that PT to continue at home. You don't think little babies need PT, but they do. So that was one piece that was really positive of the transition, I'll say, is that I had a social worker come up and immediately have a supply for the additional Medicaid insurance that they were, they qualified for as a secondary because they were admitted in the hospital for more than 30 days in the state of Michigan.
You qualify for that and immediately get the application in for early intervention. So that's also something prior to discharge with preemies. If you don't have a social worker at the hospital that has given you that information to ask for it, you know, are there state programs available to me that I'm taking kids home that are going to be behind developmentally or need additional medical care? That was great. Took care of all the co-pays, everything like that. So please don't forget about some of that type of stuff as well. But they're doing great. We had a rough, the first six months were tough.
They would get sick with the simplest of viruses. We had every virus. I used to know them all. We had COVID, we Croup had, we didn't have NORO, thank God. We had rhinovirus. We every virus possible. But these viruses that would give my four-year-old a runny nose put us in the ER. So we were, the Brady's were a thing of the past, the DSATs. And so I learned to count respiration rates in their chest, look for the protractions. So we had a lot of admittances to the hospital, a lot of breathing treatments.
chest x-rays, everything, but I got to know. I was a frequent flyer, as they call them in the ER, so ⁓ the triage nurses got to know me. But really grateful to have that, and every time the doctor said you made the right decision. So never hesitate to trust your gut there. But we got through that, and we made it through the winter without the ER, which was incredible. We made it through, no RSV anything. So we got them to a good regimen with their medications and their inhalers.
to keep their lungs able to take care of these viruses when they enter. And the last time they were just sick recently, they had good old fashion ear infections. And it was so nice to be in the doctors and be a normal kid with just an ear infection in the winter and nothing to do with their BPD, their bronchopulmonary dysplasia, which is very common for a lot of creemies, that BPD. So, but we have great pulmonologists, we're under care. They're slaying all the dragons, they're doing everything they need to, they're off oxygen, they've been off all of that for several months now.
Mary Farrelly (49:25)
you
Christine (49:42)
They were on oxygen probably the longest. The pulmonologists are usually pretty conservative. You go from day to testing to night. But ⁓ we made it through all of that. I'll say, I'm sorry, all these tidbits that come up, Mary, as I think about this, we had two oxygen concentrators at home on the first floor. They're very heavy. After carrying them up and down the stairs for four days, called the insurance company and said, can I have two more? They said, sure. I was like, great. We could have started with four of those.
So then I had two on the first floor, two on the second floor, so we weren't carrying them up and down every day. So that's another little fun fact to advocate for yourself there. But no, these girls are great. They're happy. They're smiling. We've got a great pediatrician. I think that's key, a good pediatrician that you trust with preemies. If you're not confident with them, find somebody else. But our pediatrician's incredible. And they've been followed by their specialists. They've got some neutropenia that they've still been working through.
These kids are going be great. They're going be fine. They're going be awesome. Very grateful for the medical community they do have. You know, it's hard when I feel like I was pretty negative about the discharge and the transition, but at the same time, outside of that, we made it through that how grateful we are for the specialist available to them, the medical community, the people watching them. So it's not all doom or gloom. There's a lot of positives that come out of that. But speaking of the topic for this podcast, that transition could have been a lot, lot smoother.
and a lot we learned that I'd love for other people to not.
Mary Farrelly (51:04)
Yeah, hearing from other people's perspectives and just listening to these stories can just help help families find those questions that they need to ask ahead of time, right? Like know what to ask, know how to advocate because otherwise you're just kind of creating it as you go.
Christine (51:12)
Yeah, yeah, yeah.
Secondary health insurance, mean early intervention, what's gonna be there for oxygen, pediatric flow meters, the first time they dropped them off did not have pediatric flow meters on them. What are the feeding tube supplies gonna be? How are you gonna fortify? There's a whole checklist I think, and happy to ever take a look at that for you too. A whole checklist I think NICU Doulas could...
could look at to help the parents ask the right questions, look at the coverage, look at their insurance coverage, look at their home set up, especially if that dual is gonna be helping with other things, postpartum wise. I think there's a lot that that doula could do. I would have done anything to have someone that understood that transition in my home helping me.
Mary Farrelly (51:57)
Yeah, it can feel incredibly isolating. like, you don't know, you want to build a village, but you're not quite sure who to trust because the NICU is such a unique environment and the babies are more vulnerable to a extent than a quote, well, baby is, especially around germs and other risk factors at play. having someone there that speaks NICU, quote unquote, and also can help ground you emotionally as a parent navigating all this because
Christine (52:00)
Yes.
Mary Farrelly (52:25)
At the end the day, you're still a mom and you want to, as you said, find the joy, find the babies. You're still postpartum and navigating all the different dynamics there too. So being able to feel health so that you can have those moments of joy and reconnection too. And I did also want to like bring it back to that point that like sometimes, especially when I'm working with families as a NICU Doula post discharge, we can sometimes feel like almost like running a science experiment, right? We're tweaking variables, we're having hypotheses, we're measuring, we're tweaking, we're doing all these things.
Christine (52:28)
Yeah.
percent.
Mary Farrelly (52:54)
Sometimes you just have to stop and be like, there's so little in this one moment. I'm giving both of us permission to just be here right now in this moment. Like everything else is super important, but we can make it wait for just a minute just to have soak in that moment and connect and find the joy because it should have joy.
Christine (53:03)
Yeah, right, right.
percent.
It should have joy and I think that's if I could leave with anything is you know you go home on anything You know whether it's just oxygen feeding tube g-tube and g-tube, know having those resources But just remind yourself you got this and there's no one more qualified than you and Definitely not to forget the joy Because it's easy to just feel like you're you're just going through the motions to keep everyone alive But but not to forget the joy Because it is so joyful and I look at these babies and I
I think, you know, I hold both of them now and I think these little babies fit on my chest as these little balls 15 months ago. And they're these big 20 and 17 pound 15 month olds now that holding them both is a lot of work. And I feel so grateful to have both of them to hold and have them both being thriving and eating and all the things. So it's a short time in your life, but it can be difficult, but you will get through it. You will get to the other side.
Mary Farrelly (53:53)
Bye.
Yeah, the NICU is only the beginning.
Christine (54:08)
Yes, yes, absolutely.
Mary Farrelly (54:09)
And also,
I feel like NICU parents are some of the most strongest, most resilient, most fierce people that I've ever met. So I feel like always sometimes giving yourself a moment to be like,
Damn girl, like I did this. Like I did this really hard thing. I grew these babies. Like these are like such like a manifestation of your love. Like you are doing such an amazing job and they are just so lucky to have you. And we're so lucky to have heard your story on the podcast today. So if people are like listening to you and maybe wanting to connect or maybe even troubleshoot and listen from your experience to help make better resources, is there way that people can get in touch with you that you prefer?
Christine (54:22)
Yeah. Yeah.
Thank you.
you
Sure, honestly WhatsApp has been really good for that. I've through my through my cell phone number, which happy happy to share. I like that. That's where I've kept a lot of my my groups of ladies and other parents that I've connected with over the years through these varying different challenges. But a WhatsApp to my number would be best, which is 702-271-4673. And that helps me keep it organized and not get lost in the sea of messages and DMS and all the other ways we can communicate these days.
But that'd be great. Happy to chat and just be in here. I will say it, there was an organization that I found through the social worker. I'm now an approved mentor through that organization. I think you and I have talked about it, Mary. But it is important that you find someone that you can talk to that isn't maybe your best friend, your cousin, your mom, aunt, whomever. But I think that's where that NICU doula really comes in. And then finding another parent.
that's been in the NICU. There's a lot of support groups out there to connect with other people. And I think that's important also to have that community.
Mary Farrelly (55:46)
Mm-hmm.
Yeah, there's nothing, especially when reflecting on my, did not have a NICU say, but I had other challenges throughout my life, but finding people that truly get it, that you can just be your most vulnerable self with and they, you don't have to over explain. just.
Christine (56:02)
Yeah.
Yeah.
Yeah.
Mary Farrelly (56:08)
you
and are immediately like, know, I see you and I was you and I get it and also there's more to come. So I can feel so inspiring to see people that are even like you 15 months ahead of where it's at and how quickly things can transform and how there's so many more amazing chapters left to write.
Christine (56:10)
Yep.
There's more to come.
15 months.
I know, I know.
It's very exciting and I'm excited to tell them their story one day. I want to be proud of it. I'm not ashamed that they were earlier in the NICU. I there's a lot of shame that comes with babies coming early and feeling like we didn't do something right as the mother. But I'm excited to share that story with them. It's a story of perseverance and strength and something that hopefully they can be proud of as well.
Mary Farrelly (56:51)
Well, thank you so much for joining us today to create Christine. I'm so honored that our paths crossed and that people could hear your story today.
Christine (56:56)
Thank
Awesome. Thank you, Mary.
Mary Farrelly (57:00)
Thank you.