The NICU Experience | An Initiation into Medically-Complex Parenting (rebroadcast)




Request Transcript

For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant.

Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are.

In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced.

This is a rebroadcast of Ep. 26 of Season 2.

Episode Transcript

Hello, you're listening to The Rare Life. I'm your host Madeline Cheney. In this solo episode, I decided to talk a bit about the NICU. When I was trying to decide what to talk about for this solo episode, it seemed like a perfect topic for season two as we're talking about our evolution as parents because of our children. The NICU seemed all too appropriate because the NICU really is an initiation into medically complex parenting for so many people and it certainly was for us. And while the ultrasound--when that is the time that people find out that something is wrong with their child's body--separates their before and after from life, The NICU really is the time that many parents become thrust into this medically complex world. So in sharing this episode, I hope that others that have not been to the NICU as a parent can have an idea of what it is like, and for others that have been through the NICU, I hope you feel seen. And Kimball's NICU experience was 22 days. And so I am very keenly aware that many people listening were in the NICU a lot longer than that--months and some even years. And so, as I record this, I have you in mind and a special place in my heart.


So the NICU is an acronym, and it stands for neonatal intensive care unit. So it's the ICU for newborns. It is a sad truth that newborns need the ICU. But it's a wonderful truth because it means there's something to save them; all these babies that would have died in years past without our modern technology are in the NICU and many of them are saved when they would not have been otherwise, and Kimball is no exception to that. I have a soft spot in my heart for the NICU, and for all the doctors there and the nurses and these people that give their hearts to these tiny little newborns.


So I remember sitting in a nutrition class in college and the teacher kept talking about the NICU, and how she'd been a dietitian in the NICU. I was like, "What is the NICU??" And finally she explained, and that is when I first learned what that was, when I was in college. And so it's just a whole different world. It's a whole different world that if you haven't been through or know someone close to you that has been through it, you've just--it's impossible to understand. So in preparation for this episode, I went on social media and asked NICU parents both previous and current, to give me one word to sum up their NICU experience. So each of these words I'm about to read off are parents' number one word. It's hard to pick one word for such a huge experience like that with so many emotions, but these parents did it. As I read and collected each of these words, my heart was pounding and I was feeling it and I was like, "Oh, these explain it so well." And I just love the community that I'm a part of, with NICU parents, I'm proud to be part of that community because we go through really tough things.


So I would like to read those words to you: "Miraculous, perseverance, unfathomable, unexpected, humbling, traumatic, amazing, resilience. exhausting, unexplainable, unprepared, unimaginable, indescribable, hard, anxiety, overwhelmed, draining, terrifying, rollercoaster, emotional, isolating, confusing, stressful, sterile, unpredictable, surreal, challenging, eye-opening, life-changing, transformative, rough, heartbreaking, alarms, depression, dissociative, heartache, inspiring, hopeful, blessed, trying, life-lessons, lonely, and lost."


It was kind of an emotional time to read these words that parents were summing up their experience in the NICU with. I'm grateful for their honesty, and I can relate.


So Kimball's NICU experience is kind of a puzzle piece that fits in with my other solo episodes. In my preface episode I shared all about when Kimball was first diagnosed-- We found issues when he was in utero at 20 weeks--and my pregnancy, and then I end with his birth, so this is kind of picking up from that spot. And other episodes, I've alluded to parts of his NICU experience. And so you may recognize little parts of it.


So in gearing up for Kimball's birth, I knew it would be very hard. I'm really grateful that I had the heads up he would be in the NICU. We knew that he needed to go to the NICU to have a chance to live. So I was one of those lucky parents that had the heads up. In those weeks before he was born, I remember thinking about when Wendy was born. And that brought all its own challenges. She's totally typical, but we really struggled adjusting to having a child at all. And it took me several months before I really was taking care of myself. I gave everything to Wendy and I felt it; I felt terrible. And so I was thinking about that I was like, "I can't do that this time. There's a lot expected of me there's gonna be a lot needed of me, I still need to be there for Wendy and this new child that will have a lot of needs and will be at the NICU and so," I remember thinking, "I need to take care of myself this time." And so I told myself, I will take advantage of his being in the NICU. I will get ready for the day when it might have been harder with a newborn at home, I will shower I'll do my makeup every day, I will feed myself, I'll eat, I'll still clean up the house because I feel lousy when it's messy. And I'll do those things that I need to to take care of myself. And I'm really grateful that I had that inspiration to do that. Because I really believe that that made the whole experience a lot easier, because there was a lot asked of us and of me.


So the induction date came and I had Kimball and I was able to have him vaginally, which I talked about a little bit in my preface episode, but that was a miracle that I had him vaginally and that he was safe because his cervical spine was not stable. And so he was in danger of compression, which could kill him or paralyze him. And so we had that miraculous birth where he was okay. In hindsight, we should have just had a C-section, but he was okay. And I wasn't able to have an epidural because it happened so fast. They were in the middle of giving it to me and they had to just pull it out. And I think those things, in combination with Kimball being my second child, I recovered really quickly from his birth. And that was a really huge miracle because a lot of babies that are in the NICU are born via c-section because something was wrong or something was happening that wasn't supposed to happen. A lot of times those are emergency or scheduled c-sections, as Kimball should have been. And because of that quick recovery, I was able to be out of the hospital within 24 hours. And that was awesome because I could get home, sleep in our own beds, and were able to take care of ourselves easier. And so that was huge. So I remember walking into the NICU two days after I'd given birth and feeling like a total champion because I felt great. I had my makeup done and my hair done. And I was super grateful because I was able to handle everything a bit easier because I was taken care of and I wasn't recovering from this huge surgery like a lot of the other parents that were there.


So, in Kimball's NICU experience, a few things stand out. One thing being his cervical spine instability, which made it so that for the first week, we didn't know if he had that we were still waiting on neurosurgery to make that call. And so we in the meantime, were not allowed to hold him, no one was allowed to hold him or move him and rotate him on his bed. And he had to be sedated so that he wouldn't injure himself in case he did have the cervical spine instability. So Kimball was sedated for his first week of life. And he looked super cute while laying on his little hospital bed, sprawled out, totally out. But you know, it was hard to connect with him when he was completely out. He wasn't there.


After almost a week, he was no longer sedated. And his eyes opened for the first time so we could see his eyes and that was really exciting. Finally, the neurosurgeons concluded that he had an unstable cervical spine as we had been fearful of because that's associated with his syndrome. And so that was a big blow. And one of those diagnoses that was really hard to get even though we were kind of expecting it, it was hard because that's a really dangerous thing to have. And you know, he still struggles with it, he still has that unstable cervical spine and wears a collar for it. He had a custom-made cervical collar made. And we had to wait for that to be completed before we could hold him. So we were really anxious to hold him as you can imagine, we hadn't been able to do that yet. And so on day six, we were told that we would be able to get the collar and then be able to hold him. And we were so excited. We got there at the hospital right at 8am. And we waited. We waited, and we waited. And at the end of the day, they came and said, "Oh, it's not ready yet. But it'll be ready tomorrow." That was a really hard day, because we expected to be able to hold him for the first time and we couldn't and he wanted to be held so badly. He would cry and fuss and all his needs are met except for that he wasn't held. And I ached to hold him, my arms hurt because I wanted to hold him. And the next day he got his collar and we got to hold him and that was really great. But I still felt a little bit of sadness because it wasn't as it should have been, you know, right after he's born, he should have been placed on my chest and I felt a little bit of that bitterness.


Later, after Kimball left the NICU and Kimball was about nine-months old, we found out that he has vision issues, and he was essentially blind. For the first about year, he could see lights and that was about it. So we found that out later, so that that affected his NICU experience, although we didn't know about it, he couldn't really see anything. And on day eight, the day after we were able to hold him for the first time, we found out that Kimball was deaf in his left ear and severely hard of hearing his right ear. And I talked more about that in my episode about diagnoses, episode 5. And that was really, really hard, finding out he couldn't hear. So there he was, he couldn't be held for the first week, he couldn't see and he couldn't hear. How terrible is that? It was really awful.


He also had huge difficulty with being poked. He was a really hard stick they told us, I mean, the phlebotomists in the NICU that were used to NICU babies that are tiny and sickly, they said he was an especially hard poke. And so he got poked a lot. And he had IVs for the first two weeks, and they were constantly blowing out. It was so sad. It felt like every other day we'd come back to the hospital in the morning, and they'd tell us that he blew out his last IV and so they had the IV in a different place. Luckily, that didn't often happen while we were there. I think one time, they had to replace his IV while we were there and he was screaming and he was bleeding and it was awful. No baby should have to go through that. It's terrible. And they even attempted a PICC line, which goes through your artery into your heart, because those are usually more stable so he wouldn't have to be blowing out IVs all the time, because apparently that's really painful to blow out and IV. And they did that while we were gone one night. And the next morning they told us that they had tried for two hours, and it failed. And I cringe to picture what those two hours were like, this poor little baby.


And one thing that came to mind as I was reflecting for this episode, too, is just, I have this bitterness still in my heart, and I hope this it'll eventually fade. I have this bitterness every time a baby is born of a friend or a family member that doesn't have to go through things like that. And I'm like, "It's just not fair." It's not fair that they're just born and they are happy and then they go home and they are snuggled by their family and adored by their siblings and even sometimes born at their own home with a midwife and they never even go to the hospital. It's not fair. Kimball went through so much. These babies go through so much. It truly isn't fair. But I hope that at some point I will come to the conclusion that isn't fair. And that that's okay. And kind of be at peace with that. But I still struggle every time a baby's born of someone that I know. Because it's kind of like a knife in my heart just remembering all the hard things that Kimball and babies like him have to go through when these other babies skip off unscathed. And Kimball was poked more times in his first week of life than I had ever been poked. He's been through a lot. These babies have been through a lot.


So there were a few perks of Kimball's being in the NICU. One of them was that I had a few weeks before I needed to adjust to taking care of a newborn. And because of my negative experience with Wendy, I was actually kind of happy about that. And I felt pretty guilty that I felt happy about it. But it was nice to have a few weeks to kind of prepare to bring him home. And we had what they called "the most expensive babysitters that are you'll ever have". We had "babysitters" taking care of him while we went home. And for the most part, we could really trust them. And so that was, that was amazing. And there was always this ache when we would leave him at the hospital because it felt very strange and foreign to leave your baby at the hospital. And I had the excitement of seeing Wendy when we got home. So I think we had that advantage over parents that have NICU babies for their first babies. But I also got to have this huge thrill the next morning when we'd come to the hospital and we'd pull up and we'd grab our badges and walk in through those hospital doors and go up to the third floor to the NICU and scrub up our hands and go in and see our sweet little baby there. And it was just so exciting. It was like a mini Christmas every day of being able to go see our baby. Like, "We're gonna go visit our child!" It was just really cool. It almost like when you go to the doctor before they're born and you get to see them on ultrasound and you're like, "Ooh, I get to see my baby!" It was kind of like that, but obviously more intense. But that was really--that was kind of just a fun thing to feel that thrill of being able to go visit your baby. As weird as it was to.


During those those weeks that he was in the hospital, a well-meaning close, trusted friend seemed kind of peeved that I was spending so much time away from our daughter. We were there for six to nine hours a day, at the hospital for the first two weeks, and she was like, "Why are you spending so much time there? He doesn't even know whether you're there or not, it doesn't make any difference to him." And that stung. That hurt so badly and it made me mad. I was like, "He knows!" Even though we found out later that he was blind and deaf, and you know, all that, but I still stand behind the fact that he knew. All these babies know when their parents are there, and they need their parents there. And I needed to feel needed by him. Because it was hard to feel bonded with him otherwise, because other people were taking care of him. And I think she was in the well meant, but it was really hurtful. It was confusing, but I was like, "No, he knows I'm there. It's okay that she doesn't think that he still needs me."


And we maintained that struggle of trying to keep the balance between Wendy and Kimball and taking care of them. And that was a really hard thing to adjust to having two children where I went from having Wendy and just taking care of her, to having two children to take care of. But having two children in two different buildings, we had one 30 minutes away from the other. And so it was this like, pick and choose. And we were all sick when Kimball was born. We all had runny noses and colds, and you technically aren't supposed to go to the NICU when you have a cold. But we didn't dare tell anyone because we were like, "Would they really not let us go visit our son?" And the question was too scary for us to ask because we were afraid of the answer. So we washed up and we were really careful, but we went, we went with colds. But Wendy had a cold too, I think worse than us. And so she wasn't allowed to come to the NICU for the first two weeks. And so it really was this balance of driving back and forth, and Wendy was with my mom who was taking care of her. And that was a huge struggle trying to figure out how to take care of the two children that weren't even together.


As I mentioned in my Feeding Tube Adventures, episode 13, Kimball was tube-fed because of his airway issue because he had no nose bone, he couldn't breathe to bottle feed and he had low muscle tone too. So he would fatigue. So he was tube-fed (a tube going down his throat into stomach), as a lot of NICU babies are, and I would pump for him. And so in imagining a parent just going home after they had a baby and someone else taking care of it, you know, that sounds great, you get to sleep through the night,  recover from childbirth...except if you are pumping for your child, as many NICU moms do. And so I was pumping for Kimball every two to three hours during the night. My alarm would go off, instead of a baby crying, my alarm would go off, and I would get out of bed and hook up to my breast pump and pump milk for Kimball. And as I mentioned in my feeding tube episode, it was really bonding. And I felt really needed for him to be able to do that. So that was really a cool experience, even though it was a huge sacrifice, it was hard, I appreciated that part. And every morning when we'd go visit Kimball, we would grab all the bottles of labeled breast milk that I had pumped that night or while we had been gone, and we'd bring it to the hospital with us. And I felt so proud, and I'd bring that into the mother's milk bank, which is a room dedicated to receiving breast milk for babies in the hospital. And they would process it and send it up to the NICU for him to eat. And when we went home from the NICU, we were sent home with a bunch of frozen milk because Kimball hardly ate anything while he was in the NICU. He had digestive issues while he was there. And so they'd be like, "Oh, we need to stop his feeds for 24 hours", which is code for "starve him for 24 hours", and he wouldn't get any food. In those days we visited him he was really grumpy understandably, because he was really hungry. That was terrible.


About two weeks after Kimball was in the NICU, we went to this parent lunch for NICU parents. It was in the hospital, it was done by the hospital. And it was about meditation, which I wish I would have actually done. But it was great to be there with all these parents and to look around the room and be like, Oh my gosh, they have babies in the NICU. They're going through really similar things as us. And that was really cool. That was our first really exposure to any sense of community, that there were other people in the world that understood what we were going through. We did see the parents in the NICU with their babies too. But just sitting there around a table with these other parents was really cool to feel part of like this club or this team of people who understood. And we each went around and said how long our babies had been in the NICU as part of our introductions. And these parents were like, "Nine months", and "13 months." And so when it got to our turn I was like, "14 days." And it had never entered into my mind that someone could stay in the NICU for months and months. Because we anticipated the max day we'd be there was three months, so hearing that someone was there for nine months, and then after that experience I heard about the people who've been in the NICU for years and that have their child celebrate their second birthday or their third birthday in the NICU, having never gone home. That was just unfathomable to me--it still is. Those parents are amazing. Those babies are amazing.


One part of Kimball's NICU experience, which was a huge part of our NICU experience was a room in the hospital, just a floor away from the NICU, called The Ronald McDonald Family Room. And so growing up when we went to McDonald's once in a while, I remember like seeing the Ronald McDonald House Charities that you could donate to, but I never knew what it was. And one thing that they do is they provide and sponsor these rooms. And we got a pass to go in there when we first were admitted. And that was really cool. They have couches in there and a TV and toys for kids to play with (for siblings to play with). They have a huge kitchen for parents and families just to go to be able to eat because when your child's in the hospital, especially for these extended stays, you can't just leave all the time to go get food. Well, you can but it'd be hard. And so they had these huge industrial fridges stocked with all this frozen and easy to grab food. So we had many a hot pocket there, and lots of yogurts. And it really was heaven sent, it was so nice to feel people helping us by sponsoring that. And they even had families that would come almost every day, and they would provide meals for us. They would cook in the Ronald McDonald Room with hair nets and being really sterile and stuff, but they would make a lunch or a dinner for us as a service activity for whatever organization or a family. And that was really humbling too. We'd walk through these lines and get our food and it was really awesome to see these people that cared about this whole other world that many people don't even know exist or don't care exist of these parents that are in these hospitals with their children. And that was really cool. I have many memories in that room, mostly eating but also just taking a moment. And they also had these awesome rooms where you could check out and they had a big bed in it that you could take a nap in. And that was ingenious and probably invented by a parent that has had a child in the hospital. So I took a few naps and those beds during Kimball's NICU stay. That was so nice. And they even had showers I used a few times and it was really just a refuge in the hospital for many different kinds of parents, not just NICU parents.


I remember seeing this little boy who was probably about three or four years old, and he was in there with his parents. And he had this IV pole hooked up but he had brought it down there with him and his shirt was undone. And he had this huge incision down his chest. He had undoubtedly just had open heart surgery. That was really chilling and really sad to see. But he was cheerful and just so tough. These kids are so tough. And there were other kids there with their heads shaven from having brain surgery and kids with cancer, and there was always someone there that I was like, "Oh, at least we don't have that. At least it's not that bad." And so I was grateful for that kind of perspective and seeing these sweet kids that I knew Kimball would grow up to be, going through these hard medical things, but being so brave, so sweet. I'll put a link in the show notes if you feel so inclined to donate to that charity, The Ronald McDonald Charities helps provide those rooms and they also provide housing for parents that are states away from home. There are parents that were out of state that had to come there and their child was in the hospital for a long time and, and there was a building close to the hospital, the Ronald McDonald House. And it provides housing for parents to stay there for weeks at a time while their children were in the hospital and so they could be close to their children. So if you feel so inclined to donate to that charity, I highly encourage it. It was life-changing for us. It was so huge, such a help. And I'll put a link to that in the show notes.


Part of our initiation to the medically complex world was all the medical lingo that was thrown at us after Kimball was born. We certainly had heard a lot of medical lingo before he was born when we went into his high-risk pregnancy appointments but after he was born, and we were in the NICU, with so many words, I was like, "What does that even mean?" I don't know why no one really bothers to explain all the words that they use that are very medical, and also just specific to the NICU. And I was too proud or too embarrassed to ask them what they meant, for the first little while. And so I just tried to learn from context and pretend like I knew what they were saying. After several weeks of being in the hospital, I started to ask them, "What does that mean?" Or "I don't know what that means." And that phrase has gotten very comfortable in my mouth. I use that all the time, when we're at the doctor's with Kimball or with therapists I say, "I don't know what that means." And then they define it for me because I think they get so used to it and they know it so well, that they don't stop to think that parents are just people that became medically complex parents, and so we have no clue what's going on automatically. We need to know. So, I made a little list of words that came to mind my thought of like what words baffled me when he first went to the NICU. There were words like "rounds", "pulse ox", "desat", "intubated", "extubated", "OG", "NG", "sideline", "PICC line", "distended", "retractions", "charting", and "residuals". And so I've learned all those words since then.


One of those words was "rounds", which leads me to talk about rounds. So medical rounds are when the medical team goes around from patient to patient and they kind of put their heads together and share information about the patient. So you have the dietician, you have the respiratory specialist, you have the lead doctor, you have, you know, all the different doctors that are in charge of babies in the NICU. And it happened about the same time every day. We tried to be there for the rounds, because that's when you know what's going on. You can even have some kind of say sometimes and pipe up and be like, "Oh, I don't know about that", or, you know, whatever, try to be a parent. And one day we were running late. And so I called the nurse that had Kimball and I was like, "Oh, you know, we're running late. Can you see if they can skip us and come back to us?" because they have this order of who they would see, of which beds they would go to. I was like "Can you just see if they can skip us and come back to us or wait for us? We'll be there in 20 minutes." And she was like, "Oh, no, we don't do that. We can't wait for you." I was so frustrated. After I hung up, I just cried. I was like, "This is so terrible. Why won't they wait for us?" And it felt like, "Dude, I'm the parent! Wait! Who are you to tell us you won't wait for us to do this? This is for my child." And that was an awkward day with that nurse because I was like, "I don't like you." We also had this other nurse who was making all these mistakes that were quite significant. And she finally said, "I must have smoked something this morning." And Juston and I looked at each other like, "Oh, my gosh!" And leaving that day after she had said that and she was making all these mistakes, we were like, "We don't feel safe leaving Kimball here." And that was a terrible feeling. Because on other days, I felt really comfortable with the nurses that were in charge of him, and leaving the hospital that day with this nurse that kept making these mistakes and said she must have smoked something that morning, I was like, "I want to feel safe with who's taking care of Kimball when I leave, and I don't feel safe." We had many wonderful nurses that we really loved and we connected with and that was really helpful to feel connected with the person that was taking care of our son.


So one day, we were driving to the hospital and our nurse called us and she said, "Oh, we're thinking about sending Kimball home tomorrow. How do you feel about that?" And I was like, "Okay!" My heart was pounding and I was like, "What?" Tomorrow was so sudden, because we'd kind of been talking about discharge after he'd been extubated and he wasn't on oxygen anymore. And he was tolerating his feeds and stuff, but it was very sudden. And I hung up the phone with my heart pounding, like, "Oh my gosh!" It kind of felt like when you know, you think you might be going into labor and you're like, "I'm gonna meet them soon!" It was a similar feeling. I was like, "Oh my gosh, we're gonna take him home soon." And as I mentioned in his feeding tube adventures episode, we were discharged too quickly. We weren't prepared, but we quickly tried to learn everything about how to give him tube feeds and how to put on his cervical collar, this big contraption, and how to take care of them. And we were going home. We were so excited and scared, rightfully so.


So we went home, and Kimball's NICU stay racked up a bill of $198,000. He was there for 22 days. And that is much less than a lot of people leave NICU's with and we were really, really blessed to have really great insurance through Juston's work that covered all of it because we'd already reached our out of pocket maximum just from his birth. And that's a lot of money. It was so crazy to go through the list of each thing that they do--each IV they administer and two surgeries while he was there for his nose. And it's just crazy to see how much they charged for different things. And I was really grateful for insurance. The average NICU baby costs $3,000 a day in the NICU. That's just the average. Let's sink in for a second-- $3,000 a day. Some of these kids are on there for years. That's unbelievable. But they keep our children alive. And that's invaluable.


And so that is Kimball's NICU experience in an episode, with many details left out, but many important ones included. And again, I hope that this episode has helped parents who have been through NICU experiences to feel seen or to know that you're not alone in this. And I also hope it's opened eyes for people who haven't been through the NICU to kind of have an idea of what it's like-- a little bit of a window into what that is, at least what it was for us. And after preparing for this episode, and really reflecting on Kimball's NICU experience, I put him to bed tonight. (He's two and a half years old). He was singing along with me as I was singing to him before bed and he was holding on to me with his blanket and he's just so fiery and so loving and so wonderful. And he still has a lot of struggles medically that he'll have his whole life. But the contrast is so stark of how far he's come from those moments in the NICU. I've also reflected on how far I've come as a parent and as a person. I've changed so much from that first NICU stay till now.


You can follow me at the_rare_life on Instagram for updates about the podcast episodes and about our life as a family. Please share this episode with any other NICU parents that you think might be able to use it and relate to it. Join us next week for Episode 27 with Anna who shares about her son Gilbert and shares what it's like to have a medically complex and medically fragile child after she's already lost a child. She's amazing and she has good things to share. See you then.

Add new comment

Plain text

  • No HTML tags allowed.
  • Lines and paragraphs break automatically.
  • Web page addresses and email addresses turn into links automatically.
The content of this field is kept private and will not be shown publicly.
Ep. 107: Season 6 Finale episode w/ Brittany season 6 finale


Hex Code

68: Dipping My Toes into Educational Advocacy