#190 | Babies in the NICU: Three Mothers' Stories

December 7, 2022

No matter how beautiful, long, short or difficult your birth experience is, nothing compares to  the agony of your brand new baby being whisked out of your arms and admitted to the Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SPC). Mothers in this position often experience less autonomy and authority over the decision-making and informed consent process than they did in their own birth experiences.  

Today, we share the individual stories of three women whose babies ended up in the NICU or SPC with one common thread: Informed consent was insufficient or lacking altogether, interventions were performed without permission, and timely diagnoses for their babies were neglected. 

Meet Cameron, whose home birth plans were derailed when she went into labor spontaneously at 34 weeks; Nicole,  a mother of five and birth doula whose baby was grossly misdiagnosed until a year of age; and Erin, a mother of three who successfully insisted on breast-feeding in the NICU and followed her instincts to fight for her baby to get an early release from an unnecessarily prolonged stay in the NICU. 

Each mother shares her story and her battle to feed, hold, comfort and mother her baby within the confines of NICU and SCN procedures and policies. And even though these three moms never met, they each came to the same individual conclusion when it comes to the advice they have for all parents: Know your rights, your breastfeeding expectations and your values, and use your instinct to defend all three relentlessly through your NICU experience.


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View Episode Transcript

I'm Cynthia Overgard, owner of HypnoBirthing of Connecticut, childbirth advocate and postpartum support specialist. And I'm Trisha Ludwig, certified nurse midwife and international board certified lactation consultant. And this is the Down To Birth Podcast. Childbirth is something we're made to do. But how do we have our safest and most satisfying experience in today's medical culture? Let's dispel the myths and get down to birth.

So my name is Cammie. This is about my son, Benjamin. He was born at 34 + 4. And we had a planned home birth. And that did not happen. So my water broke in the middle of the night. Sensation I'll never forget, never have felt anything like it. I'm a first time mother. So I'm also very in tune with my body. So when I felt it, I was like, oh my goodness, I think that's what happened. We drove to the nearest hospital, which is about 45 minutes away. They wanted to do a cervical check, I denied it. And they checked her presence and amniotic fluid confirmed. And they wanted to Medflight us to Johns Hopkins, which was an hour and a half ish drive from the current hospital we were at. And they wanted that because they weren't sure they had the level of NICU that Benjamin would need. Because we had no idea how he would come out. Behind closed doors are wonderful nurse that we were dealing with kind of told us to just sign off and do the drive. They said it might take up to four hours to procure the helicopter. We just thought it was absurd. And also, we're still in a state of shock. So anywho, we drove to Baltimore, I had started contracting about five minutes after my water broke, but nothing too intense. I had obviously planned, like I said a home birth. So I wasn't planning on any intervention as best as possible. So none of that was even in my mind. Still. We didn't know Hopkins was a high risk hospital. So that's where that comes in. So upon arriving to Hopkins, they said Pitocin or C section. And we were like whoa, we literally just got here. They did the cervical check. I didn't want any cervical checks. Like I said, I didn't want any intervention. But a lot of my birth plan had to go out the window and I had to try and gain control of what I could manage at the time. So did the check I was I think two centimeters and 80% of face. They said pet or C section said neither. My one of my midwives came in and acted as our doula throughout the process which was really really helpful to have despite how informed I am I still felt immense pressure throughout the whole laboring process from so many different people coming at me from every different angle. It was a 41 hour labor so 41 hours of saying no thank you. No thank you and then eventually not so nicely saying I don't want that.

Oh, what's my what's important is that you were polite.

Right? I just say no students please no students, I don't want anything and I kid you not there at least I want to say accurately 20 people in the room when I gave birth.

That's unbelievable. And it is it is that you had to say it so many times. And you know it's possible. We found out that like shift change meetings that were happening I was like the problem child and we had nurses battling the doctors in meetings over letting me progress naturally. Like it was cervical check after cervical check. I denied Pitts and I picked and I picked my contractions stopped. They said I needed to be on Pitocin but then left the room and texted our nurse and said oh, why doesn't she try pumping while pumping brought my contractions back of course. And so I did eventually have to given to Pitocin. But on my terms I said I wanted in increments of 10. And I want you to check me every half hour. And that's that. And so we didn't go up high at all, but they did come on strong. And those contractions are way different than a normal contraction, as you know, as everyone who is any well versed within that notes. So when you said check me every half hour, are you talking about checking on the Pitocin, or checking your cervix?

Checking, not cervical checks, but just that I was progressing and that, you know, things are moving along because it was a long labor, they were concerned about infection they were I hit 10 centimeters, finally, and I was like, Great, I'm done. Like you can go and I can do this on my own. No, they gave me a timeline for a C section at 10 centimeters if he wasn't coming out by a certain time. So really, just really, really hard for me. But like I said, being that he was so early, I didn't know what I could say yes and no to like, I hadn't done my DVS test. I had to have four rounds of penicillin. By the end. I've been off of antibiotics for five years, I've healed my gut from years of antibiotics as a child. So four rounds of penicillin. You can imagine what that did to my gut and my son's gut. You know, it was just crazy. But they live yours antibiotics kami. Because they didn't know if you had GPS. Correct. It was just totally prophylactic.

Yep. Remember, the membranes test. They did the test and it was negative, but I didn't get those results for you know, they weren't going to come back.

quick enough. You didn't know. So you were unknown and you had preterm remember the risk of GBS infection with preterm babies is it's much more severe and significant. So and my path was scheduled for the following week, of course, but that's neither here nor there. That was one of the things that, you know, came into play and I have to be okay with it. I am thankful he got his steroids when he had two rounds of steroids in utero while I was laboring for so long. So he came out screaming, he came out healthy. We had nursery in the room, nursery team NICU team, the OB that was on while I was almost about to deliver, we did not like each other and it was obvious. It was mutual. So a nurse midwife, luckily was on at the time she birth my son, I had my one of my midwives with me, my husband, the two nurses that were there, I gave her my back. Never imagine that didn't want it. But Mike Roberts style. He came out, he came out screaming, I requested that they use my blanket for him initially. So they did aggressively rub him on my chest. They did his testing, I probably within two minutes was told he wouldn't need the NICU but then he would need the nursery. And then we did skin to skin they only let me do two minutes of the cord. I wanted it to run dry, of course. But I felt very painful, at least for that he did receive vitamin K, which was not my intention. But again being being so early. They were saying he was at risk. So I had to give into that. We do not have the. And yeah, he was taken away from us. We were taken to the postpartum room. And we had him for every three hours for a half an hour for a week. We're in there.

Can you explain what? Why he was in the nursery for?

We weren't really given any reasoning, I guess. I mean, he was so early that they wanted to monitor his oxygen. They wanted to monitor mostly his regulation of temperature was that the thing? So he was an inoculant in the nursery and an isolette. And that's why he couldn't be with you. Yes. He could have been in an isolette in your room, maybe.

Believe me, I was asking around the world, around the world. Kangaroo cares the treatment, not putting babies in isolettes and they thrive. And you get bored and believe me, terrible. So I pumped during labor, I had all this lovely colostrum for him. I had not antenatally collected like I had intended, I had planned to start doing that and then went into labor. That was his first seed, no one communicated to us what they were requiring for his milliliters for these seeds. So I thought he was good to go with what he had I planned on nursing him when I had him. When he was brought to us the first time we were informed that they had supplemented him with formula which I had vehemently said please no formula, he has to be only nursed or breastfed, pumped, whatever. I was irate. I didn't want that in his gut. You know right away but anyways, they said 15 milliliters was the the push, which is a lot for a brand new baby that is way too much. So he's seven months now we're seeing a feeding specialist who still has an array of eating issues. And I really do think it's all related to his first weeks of life.

So, with preterm babies, we No, it's especially important that they get breast milk especially important. So they were basically telling you that the formula was superior to your breast milk because you didn't have enough breast milk or because it was just easier for them to feed the baby formula.

Higher caloric value is what they express me.

This is always what happens. And so basically, they were pushing for 15 milliliters. But Trisha, That's not. That's a lot, right? For the early days, a half an ounce for 34. week old baby is a lot. I mean, when we're talking about even full term babies breastfeeding with colostrum in the first few or a few, first few days, it's it's 10 to 15 milliliters maybe, but this wasn't even a full term baby.

Yeah, on that. On that note, though, I mean, you are waiting for your milk to come in. So like what I have to provide is what I have to provide and that's not 50 milliliters so I was a machine on the hospital pump trying to produce so that they would not give him formula again. I have multiple lactation consultants throughout our say come into the room and say formula was the way to go. Eventually, they told me to stop trying to latch because I was expending too many of his calories trying to nourish versus just giving him a bottle. So I have to let that go, which was really hard. He was on a five one nipple, which I was very upset about. I wasn't prepped with preemie nipples. So he's had feeding issues from that from the get go. So essentially, they said, we'll bring a bottle in every time we bring him in, you just feed him that way. You have that bond, what was the only thing that I really felt happy about, like they were allowing us to do the feedings? Because they did express when they were trying to do the feedings themselves. They're like, Oh, he really didn't want it. So we really had to push it. And I even had one of the nurses say like, we get it in one way or another. And I was like, What are you doing to him?

He really didn't want it. So we really had to push it because he was most likely being overfed.

I was appalled, honestly, yeah. Very disturbing. And then one time after that he was sent in with a, just like the prep formula bottle. And I was like, I thought we were past this. I literally have given you so much milk like they're labeled. They're in the room and they were like, Oh, we're so sorry. miscommunication. Just like brushed it off. Seeing him in the nurse in the nursery, seeing him screaming in his isolette. That's really hard. And I know my situation is nothing compared to to Nick use days. And I feel thankful that he was in the nursery, but just to we weren't allowed in there. Like I wasn't allowed to deal with him, except for those half an hour increments. And I've heard you talk about on the podcast before women being yelled at for being in the hallway with their baby outside of the bassinet that happens to me, like I left my room to ask them a question with him in my arms. And I was screamed at, because he wasn't I wasn't reeling him down the hallway in his bassinet, which I'm like, he's my son. Like, I know how to hold him. I need to help him.

I can't help but have thoughts of sexism here. I mean, I just always wonder, we have so many women telling us about getting like, yelled at, and it's by other women. And I just wonder like, would those same women be yelling at grown men? I just like, this culture is so weird that people think they can speak to a grown woman that way regarding her own baby.

Yeah, it was almost a weird, it is a very weird power dynamic to be in. Because there were certain times where they'd be like, We won't tell anyone, we'll give you an extra like 10 minutes. And I'd be like, Oh my God, thank you so much. But like he was like, wait a minute, you your baby for 10 more minutes. Not to mention the whole tone of We won't tell anyone. Yeah, I'm the authority. You're implying there's someone in charge of all of us that I'm supposed to be afraid of and intimidated by. We won't tell on you. You can't tell on a parent. When it comes to how their baby's going to be taken care of. It was very robotic, and every all of it felt very, very sterile, very robotic, and I wasn't prepped for it. But I was educated enough to get through it. And my husband also is very educated through me. So we felt as prepared as possible and as capable as possible. But for anyone who's lacking in any bit of education, like I can't even imagine what their experience is actually like they probably just say yes to everything, and assume that it's all in their favor and in their child's favor. But obviously not what the only thing that really felt like we had redemption from was that the OB came to our room and essentially apologized when we are in the postpartum room for practicing us and for not believing that I can do it without the intervention. She said she just did not don't often see physiological labor happen and they were scared essentially is what she said without saying it. Yeah, and the icing on the cake was that he left. No one checked our carseat when they left this little five pound baby We pop them in our car seat and drill to our home and nobody checks that he was born in there. Hi, my name is Nicola ramsI. I live in Lafayette, Indiana. I have five children. I'm a practicing birth doula. Now, my first was a home birth, planned home birth, beautiful labor. But as soon as my son was born, he started exhibiting issues, breathing problems right away, the midwife removed him from my chest, worked in an RP and we called an ambulance. I was taken we were taken to a local hospital. And he spent three weeks in the NICU there. Still not breathing, not eating nobody really sure why. One thing that we noticed immediately was the attitude from staff was pretty patronizing and condescending until my mother loudly announced in conversations. Well, when Nicole graduated from university or when Nicole did this, the assumption was because I was a fairly low, toned, traumatized mother, I mean, being I delivered my placenta on an ambulance. And I went from a homebirth, to NICU situation. And it's very hard to be assertive and loud in these situations, or not loud, but even to know what you want. And it was clear that their first assumption was I must not have been very educated and homebirth transfer Mom, what does she know? I knew quite a bit, but the neonatologist commented he said, Oh, your mom said that you went to Purdue. I didn't know that like, Well, no, because you didn't talk to me about anything about me. They were just they just like they didn't know how to handle this situation at all. For the most part, this was a local NICU, smaller rooms, individual rooms, and for the most part, many of the staff were wonderful. There were some severe issues about consent. As soon as we arrived at the hospital, they put my son on an antibiotic without like discussing reasons for it. There was one thing on an ultrasound that looked problematic, but he didn't have a fever and there were no they all the skins, they tests were negative for any sort of infection. And this neonatologist said he's going to be on an antibiotic for the rest of his life based on what I'm seeing from this. No discussion about it whatsoever. That's yes, that it was. So you're saying because you're traumatized?

That doesn't even make sense. I mean, it's what it doesn't make sense. But you're saying that your son was put on an antibiotic without anybody asking if that was okay with you.

That he was checked in and they started the antibiotic. And the tone was this is what is happening not?

What do you think about this? What was the diagnosis? They don't know, at this stage, they you would think by the time they're administering medication that's suitable for a bacterial infection, you'd think they actually I will slight slight spoiler alert, the real diagnosis did not happen until he was one year old. The doctor suspected a rare genetic form of dwarfism, that occurs in one one and every 100,000 births, 100,000 births, I'm sorry. But there was no real test for it. And that was based on his observation of somebody else in another hospital years before. We spent three weeks there at that first hospital where he thought that was the diagnosis. I was pumping. I had a background, a family background that was extremely supportive of breastfeeding and breast milk. I was doing my best pumping often we had one nurse that could be problematic. They wanted him on a higher calorie formula to gain weight faster. And one day I fed, I gave her my milk all day long, because he was too fed. And we hadn't learned how to do that quite yet. And at the end of the day, she told me by the way, I've just been putting the milk you've been pumping in the fridge and I've been giving him the formula all day because your the formula is already made up and it's not going to stay fresh as long as your milk where you asked if your baby could be on formula.

No, it will. So here's No, this is how they get it. I think that day the nurse did not talk to me about that until the end of the day when she said this is what I've done. We had had some discussions about adding some high calorie formula to help him gain weight faster. But going completely to formula all day long because it was already made in the fridge when all of our preferences were breast milk and mom is providing breast milk.

Not to mention a discussion isn't consent and it's not implied consent.

One thing that we see of course all the time in birth is that mothers are not properly informed about their choices and are not given true informed consent about their own bodies and birth but it's a whole nother level. When we are talking about babies it seems the hospitals are just going to make the decisions for them and the mother Those are even further removed. That, yes, we were operating on this one diagnosis, but nobody knew for certain indications where we think you can go home soon, we think you can go home soon. And then one day it was actually we're going to send you to the Children's Hospital an hour away. And that we want to do that soon. And there was no discussion leading up to it. It was the right decision. But there was no engagement with this idea beforehand. Like, we don't we want to run these tests, we were concerned about this. So sending into the bigger Children's Hospital at this stage, they had 10 babies in a room. They don't anymore, they have transitioned. But the feeling I got consistently was that I was an accessory who was supposed to pump when I could pump milk. And otherwise they were going to take care of everything and do everything. And a parent who had problems with that was something they did not know how to handle. The first morning I walked in, I couldn't because it was 10 babies in the room. I couldn't stay in his room with him. And the first morning I walked into the room, he wasn't in his bed. And I was like, Oh, my goodness was my baby. And they said, Oh, we took him for such and such a test. I asked the nurse how he was doing if I should talk to him. And she's like, Oh, he seems really great at self soothing. And in retrospect, I was like, no, actually, he needed me to suit him. This came up more than once. The attitude was, why aren't you stepping back and letting us do everything until we tell you to do something. They were settling him in his bed and I was standing in the room singing to him, I was far away from their equipment. So I was not in the way and a nurse went, you know, parents usually wait in the waiting room. While this is happening. I said well, but I want to be right here. And so she kind of just looked at me and went back to her business. And two minutes later, she said, it is really customary for parents to be in the waiting room while we're doing this. And I said, but I want to be right here. I'm singing to my baby, my four week old baby who just came out of anesthesia and is crying. I'm going to be here. And a few minutes later, the neonatologist came into the room and the nurse said, I think we need some heavy duty painkiller for this baby. And I will forever be grateful for this doctor because he said, actually what his mom is doing is what he needs. They did take him off the Children's Hospital took him off the antibiotic immediately when he was admitted. They said we don't know why he's on that. He doesn't need to be on it. So that's still three weeks of antibiotic treatment, he did not need to be to have more of like this is called throwing darts and adopt that later. Later. If there is litigation. It's like well, we tried this. We tried that we took care of that in case that was going on. How did they transfer it might not be relevant. But how did you transfer from one hospital to the other who drove the baby or?

Oh, yes, all of that. That was he was sent in an ambulance. And I was not allowed on the ambulance. My husband was working a job as a temp and my mother drove me down so I could pump along the way. Yes. And there was no reason I could not have been on the ambulance with him. But that is what happened.

You were you were marginalized?

Yes, yes, we get near the end of our hospital staying and because he has multiple special needs. They want us to do a weekend of solo care in the hospital just to make sure we can do take care of him feeding to everything.

This instance. This is the second hospital.

Yes, yeah. So we're getting ready for this weekend of the care and the doctor comes up to me and goes, I just would hate to not be able to sign those release papers if your baby has not gained enough weight on Monday. And I know you don't like the high calorie formula, but I just would really hate to not sign those papers. And manipulative. It was awful. I felt because I really felt like my son did not do well on it. That was a threat. That was such a it was a threat. It was a threat. And I said we did it. We did it the whole weekend. I was like whatever it takes to get out of here. We're doing it we got out I spent the next year doing looking for a lot of donor breast milk. I pumped some but again, you're talking about a high stress situation. So donor breast milk, all of that at a year. They said you know what? We don't really think this diagnosis makes sense. So we're gonna run bloodwork again, and he came, he came back, the bloodwork came back, he had hypercalcemia. His calcium, his blood level, calcium was insanely high. The normal is supposed to be in the eight to 10 and a half ish range, vaguely and when he they went back and looked at old bloodwork, and when he was born, it was over 13 It was 13 or 14 when they checked him at a year. They readmitted him to the hospital because they thought Go ahead, so that was missed when he was born. For him, it was completely missed. And he had every hallmark symptom of hypercalcemia. And I feel like they probably ought to have checked it because he was born at 38 weeks and hypocalcemia. low calcium seems something that can happen more often with younger babies. So surely they looked at his calcium except apparently not. And they would not have seen low calcium at all. It was off the charts high. So they spent a week in the hospital a second time, trying to lower it. And it never lowered, they fought a tumor, and then they did genetic tests. And he does have a different extremely rare, more rare than the first condition.

What does he have? What are the what what it's not a dwarfism? What is primary hyperparathyroidism?

How does that manifest in a child so your parathyroid regulates your body's calcium levels, it tucked behind your thyroid gland and it create it controls how much calcium is in your bloodstream and his body perpetually Miss reads what his body's calcium is doing and tries to autocorrect the system. It creates low muscle tone, feeding difficulties, low muscle tone, feeding difficulties, because of low muscle tone, to severity, lethargy, slow. He was in physical therapy and occupational therapy. For three years. He, once they knew what the problem was, they found a medication that could treat it.

He is almost 12. And he is doing great on this medication. Before we go on quickly, I want to say when I took him to the endocrinologist for his follow up, like we've had a real diagnosis this made fit all the boxes. There was a blood test that matched it. I said this is the formula they've been wanting him to have. And she said oh my goodness, he should never have been on that formula. This is I won't if you need something I will order a low calcium formula that he can have. And I wanted so badly and maybe I should have walked over same hospital to the NICU Ward and said by the way it can I speak to all the neonatologist here I was not crazy when I said this was not good for him.

I just want to point out that you mentioned that once he got the correct diagnosis and was on the right medication, he did really well and his diagnosis was missed at birth, and he could have been treated.

We could have avoided so much trauma if calcium had been noticed at the beginning.

Hi, I'm Erin at My mom was three. My youngest is 10 weeks old and he had a NICU experience that I'm sharing today. So my birth was everything I could dream of. It was everything that my other breasts weren't and everything I hoped for and more. The birth was the labor was less than three hours long. And my body started pushing in the car. We almost didn't make it to the birth center, which was two hours from our home. And when we arrived to the birth center, I climbed into the tub and I birth my baby. And it was beautiful and amazing and a dream. And he was perfect. When he was born, his Apgar scores were perfect. We climbed out of the tub, I delivered my placenta without issue. And we went to go breastfeed for the first time. And he started breathing rapidly started showing signs of labored breathing. And at that point, my midwife started watching a little closer, and I noticed she was hovering a little closer. And eventually, they took him over to the little area to work on him that he sounded gunky in his lungs. And I know that they started suctioning him. And they worked on him for about an hour, he was still his color was perfect. He had a great heart rate, but His breathing was labored and his oxygen levels were not where they should be. So at that point, they decided to call the ambulance to go to the to the hospital, which was just five minutes away. I remember just laying in that beautiful bed in the birth center, and watching my baby, and just, I don't even think I had emotions, it was just shock. It was nothing that I expected would ever happen for my 41 week old baby. He was huge, just like my other babies. And he was beautiful. And he was perfect at first and still was perfect. But he wasn't breathing like he should. I couldn't really think, let alone process how I was feeling about it. And in order to go with him, of course, I had to gather myself up, I had to go to the bathroom with my midwife, she walked with me. And I had to make sure that I was okay enough to go with him in the ambulance. And I'm so grateful I had a really ideal postpartum recovery, I didn't care. But I still just delivered a baby. And I still felt really weak and overwhelmed physically as well. But despite that, I I walked out with my my son to the ambulance, and we transferred to the emergency room. And then we went to the ER and he was perfect again, everything was perfect. His oxygen levels were perfect, everything looked fine. And everybody was looking around the room saying well, what do we do? His lung sounds clear again, where they didn't sound clear before they were practically. And his oxygen levels were 94 and up every time they measured. So they admitted us in observation, which was just a small room attached to both the NICU and the labor and delivery unit of this hospital. And they they talked us through everything. Still totally overwhelmed. In the ER, no one even offered me a chair. You know, I was standing there, this tiny little room and it was so hot, it was full of people. And that was probably the worst I felt physically. I couldn't even focus on my baby or my emotions or any of that because I felt like I was gonna pass out.

I've heard this before that when women and their baby have to get to the ER, I mean when they have to get to the ER after birth. It's like they're, they're only aware that there's a baby here who's being who's officially the patient. And they completely forget that this baby just emerged from a woman who just gave birth and I keep hearing this like no one gave me a chair. No one acknowledged me no one saw that I was shivering. It's shocking to me. Like how how is that even possible? You work in this field and you don't look to the mother and see how she's doing. It's just it's not shocking, Trisha for you as a homework birth midwife?

Yes. And no. I mean, it's shocking, because it's just absurd that it that it happens that way. But it's not shocking, because that's how ers operate. You weren't the patient. It's, it's terrible. It absolutely shouldn't be that way. But all their focus is on who's there with the problem. It's myopic.

Exactly. Yeah, he was three hours old when we got to the ER and thankfully, my midwife noticed she was there with us. And, yeah, just one more thing about you not being the patient. I mean, three hours after birth, you are still somebody who needs monitoring. You need your blood pressure checked, you need your fundus checked, you need your bleeding, checked. It's actually dangerous and negligent to completely ignore you.

Right. I was talking with my husband, thinking about all of this and how it was going to talk about things and how he felt course and I realized I couldn't remember a lot of components of that first day especially. I couldn't remember how we got from the NICU. To the opposite from the observation room to the NICU, I couldn't remember walking at all. Yeah, there's, there's just a lot of blank space in my memories from that first day. And I think the shock of it all was very traumatic for me. So we were, you know, letting ourselves get excited, we're going to be out of here, we're gonna go home to our other babies. And this is just going to be a little blip. We were just being careful that everything was okay. And then I started nursing him. And we could, he was on the monitors, and we just heard the little alarm bells going off. And I think anybody who's had a baby in the NICU can hear those alarms in their head, and he started falling asleep at the breast. And as he was falling asleep, it dip lower and lower and lower. And the whole NICU team came in and they said, he's being admitted to the NICU, this is what's happening. And then they went through a huge list of everything that was going to be done, they just essentially told us what was happening here, which, as somebody who really likes choice in her care, and I'm a healthcare provider, too. So I feel like very competent in these settings. I'm fortunate to feel that way. So I was able to interrupt and ask, do we need to do the CT scan? Do we need to start antibiotics right away? Do do all of these things really need to happen? Or can we wait and see, is there a standard protocol when a baby has respiratory distress, like this, apparently, is routine antibiotics, and you check the lungs, and culturing the blood as well, but they don't wait for the blood culture to come back before they start the antibiotics. So that was a big concern that we had. And gratefully they did come through the risk benefit analysis with us. But only after we asked they were just going to plow through and do it. And we ended up doing going with their plan, but it didn't feel like much of a choice yet. They carted him over to the NICU. And that was that's the part that I don't remember walking and it's 15 feet maybe. I don't remember walking those 15 feet from the observation room to the NICU. And he was admitted to the critical side of the NICU. So it's a level four trauma. So for level four NICU sorry. So higher care level, and things started, it was like a snowball, and it was moving really fast and everything was happening. And it was overwhelming. There were little babies everywhere. There were a ton of nurses, a ton of physicians at the teaching hospital. So there were residents and attendings. I know, there was a PA as well. And sometimes nurse practitioner that worked there as well. So there was a huge team. And they immediately got going with everything. So taking his blood, which was really hard. Running an IV, which was really hard. Radiology was there within it felt like within the hour. So everything just happened so fast. And we were just bearing witness, just standing back and watching.

When you said you walked down the hall for like a good 15 feet, and you have no memory of it. That is evidence that you you weren't there, you weren't present at all, you were being guided down the hall, you were walking with people or with your husband, but your mind was very far away where you were not present at all in what you were doing. And you kind of snapped back when they started doing things to your baby, because now you were present. And you were hyper vigilant and watching what was happening with your baby. But that little lapse when nothing was happening and you were going down a hall. We can only imagine how far away your mind was that that's like that's evidence that you were just you were you had such a mental overload that you don't even remember the walk.

Yeah, absolutely. The whole experience was just, it really felt surreal that first day like this isn't happening, this can't be happening. How could this happen after everything went so right? How could it go so wrong?

Did you ever imagine for the women who have completely traumatizing births, and then this happens because we've had some of those stories on this podcast and just, you can't even imagine they had they can't even begin to process their birth because, you know, because they're, they have to be present for what's going on with their baby. So now everyone's surrounded your baby, you see it all happening.

So at that point, I remember our nurse coming over to me and and talking to me about breastfeeding and my preferences. And that's I think, really when I snapped back into, right, I'm a mom, and this is my baby and I want to parent my baby. I might be in the NICU, but I'm still his mom, and I really want to exclusively breastfeed. This is my third child and I've been so fortunate and worked so hard to be able to exclusively nurse my my other two, and that's what I want again. And it's really important to me. So that was a foundation that was laid very early on in his care that the nurses and they all knew how important it was to me and they immediately I called the lactation consultant to come over and talk to me they got a pump for me just in case. But I told them, I really did not want to pump, we're very fortunate that he was on high flow oxygen, not CPAP. So a CPAP, that covers their mouth, I believe that they're not able to nurse my mouth. But our son never needed that high level of oxygen care. So we were really fortunate with that. And they brought over brass pads for me, they brought over lots of different supplies that I didn't have with me because I didn't anticipate staying beyond three hours, let alone being admitted into a NICU. The rest of it was a blur. We stayed in the observation, the observation room had a bed for parents. So we were fortunate to be able to stay there overnight since we live two hours away. And also I want to explicitly nurse. So in order for me to be able to be there for my baby, I had to be within walking distance. And I wasn't a patient at this hospital. Luckily for us, our nurse on the second day was incredibly assertive. And she knew how important it was for us, number one to stay close to our baby because we live two hours away, and also how important it was for me to continue my nursing relationship with my baby if I could. And she knew something that I did not know that there was one bed and the entire NICU that had a bed for a parent to sleep in next to it. One, why is that not every room in the NICU? Yeah, and there was one bed.

Nikki room should have a bed for the baby in a bed for the parent every single one. That's crazy for two parents.

Yeah, yeah. So it's just one bed. It was a pullout couch. But you know, beggars can't be choosers. And she caught when that there was a baby in there, but they were being discharged that day. So we were incredibly fortunate number one that she knew about it, and that she was assertive enough to make sure that the nurse manager was going to give it to us. And not only was I told I could be there, but I was encouraged to be there. And I was told I should be asking questions. And it felt pretty receptive. Everybody introduced themselves by first name, nobody went by their titles. And usually the providers would sit next to me and talk rather than standing over it, just those little things that made it feel more respectful rather than me being told what to do with my child. One of my biggest fears, outside of healthcare is of course, my biggest fear was the safety of my child and the health of my child. But another fear was that I was transferring to this traditional teaching hospital from an out of hospital birth, I was really nervous about judgment, and being treated with respect and that my opinions had value. I really was very worried that I would immediately be judged for those decisions. And it was waterbirth, I was really worried that I was going to be blamed for my decisions. And it was never perceived like that. A number of the staff actually came up to me and said, I had a home birth and I had to transmit to the NICU and gratulations on your beautiful birth. And I have a lot of really positive things and personal stories. And that just made me feel more accepted in that setting. I think it's really natural for moms to blame themselves when the outcomes aren't what they want. I had Yeah, I had I had a lot. My first birth was a cesarean. And that was a really long labor. And there's a lot of self blame with that. So I'm really familiar with that and what was the official diagnosis because he never cultured anything, so that was really fortunate. So he did do his antibiotics, but they did a very conservative prophylactic dose. Of course, one thing that I wasn't told in the NICU was that with one of the gentamicin is the antibiotic, which is really common. ampicillin and gentamicin are the most common to antibiotics given to Neo needles. And it has a hearing loss risk, which I didn't know about my God. And they didn't mention that when they were saying they were going to put the baby on that before they even had the culture back, which ended up being now a serious is that risk of hearing loss, how much how long do they have to be on is that for penicillin, and the other one is for gentamicin only. So I think by the 24 hour, he was having his last dose of one of them I can't remember which one was a little bit longer. And because that was negative, they didn't restart the antibiotics. But if he would have cultured he would have been on antibiotics for about a week, which would have increased his risk for hearing loss. So since it was such a short dosage, his risk is pretty low. And because his initial hearing test was clear, like he passed it with flying colors. It's not as much of a risk but he does have to do a test. I think when he was seven months old, he'll go for a hearing test with an audiologist. That's incredible that they didn't tell you that. How did you learn about that risk of hearing loss? My pediatrician you were pretty good to work with overall right but that's pretty disappointing that they didn't mention that, especially when they didn't know if he had an infection, and he really could have declined.

This is what happens. They didn't know what was going on. And they throw everything at it, because in the moment, it's dire. And, yeah, it's, it's, it's one of the problems, they don't go through the whole informed consent process, because it's an emergency situation.

So my son, he's chubby, he's a little chubby baby, and they had a really hard time getting good reads from his oxygen monitors. So sometimes they would get a bad read, the alarm would go off, and they go right back up again. And it threw off this algorithm of the percent of time if you stayed above a certain percentage of oxygen. So they wanted to see a certain percent above a number, and then no more than a certain percent below a number. And they were going to base his entire discharge decision based on this monitor that I was beside my son all the time, I almost never left aside. So I could see when they would drop. And it was only when he would move a lot and throw the the little alarm off, or when he would nurse and grab his monitor, and it would dip it down into the 80 percentile. And then it would go right back up again when you readjusted the monitor. But they were trying to keep us even longer, just because of this, this happening. And otherwise, he was doing great his oxygen as long as he was still and not messing with his monitors. His oxygen levels were above 95% all the time. So the resident came over. And she she spoke with me and said, Oh, we have to keep him at least another day because he is more than 5% below the 85% saturation rate. So we really need to keep them and make sure he's safe to go home. And I asked to speak to the attending because I didn't accept it. And they came over to me and they talked to me about the risks and benefits of him going home and talked about the algorithm talked about the monitors. And in the end, we all really felt comfortable with the discharge decision. But I really don't think that I would have felt empowered to ask that question, if it wasn't for listening to the podcast, going into the class and hearing other people's stories of their ability to do it. But I knew in my heart that he didn't need to stay another day, he was doing just fine. So I really felt empowered to ask, empowered to challenge their decisions. And we were able to bring our baby home at least two days earlier than they were intending. And he has been doing perfectly ever since. So it was the right decision for him. And I felt awesome power to trust my instincts as a mom, I think before listening to your podcasts and, and taking your course to the HypnoBirthing course I really didn't listen to my instincts all the time, I would listen to everybody else's opinions and research things to death. Use myself more. And in the end, I really listened to my instinct and feeling like my son is healthy, and he's doing beautifully.

In general, I really just think educating yourself on every possible scenario like this has changed my point of view when it comes to birth. Like I said, we were home birth or bus kind of people. I didn't put much effort and time into researching what it would be like to have a hospital say I think having education from every area from every aspect will prep you the most. And that's kind of what I've like put my passion towards currently I want anyone I know who's going to give birth soon, what their options are within the hospital setting. And to know that they have a say even when they're told that their birth plan is out the window, like you have options no matter what. And I think that's important to know because you can really feel so much immense pressure in the hospital setting to where you just break. So do your research, get your you know, do the education, don't just take the hospital birth course like find a true course where you feel confident going into your birth regardless of the environment, because it's crucial for your own health, your health postpartum and your baby's health.

It's really hard, but be pushy be feel like you have to be rude and don't come into the system antagonistic. But because they can do wonderful things. But ex back to that sometimes your values will not align with theirs, especially when it comes to breastfeeding. This has happened repeatedly breastfeeding is said it's a priority and it's just it's dropped to the bottom of the list and there are no good reasons for it and a lot of bad reasons against and also bring in somebody with you who is on your side and trust your instincts.

Something that my midwife said to me really stuck with me. Before we left the birth center she reminded me that this is your baby and You're still his mom, the Nikki doesn't change that you're still in charge of all his decisions and you're still in charge of all of his care. Just because he's attached to all of these different monitors and because you're surrounded by nurses and doctors that are telling you that they know best you're still his mom. And you still know that through all of the shock through all of the same kind of mental shutdown and the overwhelm of the NICU. That thought stuck with me the entire time and I think really led my decision making I was gonna do and lead the way that I treated my son thanks for joining us at the down to burst show. You can reach us at downriver show on Instagram or email us at contact at downriver show.com. All of Cynthia's classes and Trisha is breastfeeding services are held live online serving women and couples everywhere.

Please remember this information is made available to you for educational and informational purposes only. It is in no way a substitute for medical advice. For our full disclaimer visit down to birth show.com/disclaimer. Thanks for tuning in. And as always hear everyone and listen to yourself.

One of the challenges of this NICU was that they didn't have a bathroom within the locked unit. So every time that you had to use the bathroom, and I stayed there 24/7 You had to get buzzed in and buzzed out and it was a good, especially my postpartum state a good five minute walk to the bathroom. And I had to do all of my postpartum care. All of my postpartum firsts that everybody's so worried about, was in this public bathroom outside of the locked unit, and it was a challenge. I had a very straightforward postpartum recovery, but it probably could have been better if I didn't have to walk so far. And I was fortunate my husband was there to get my meals with me the first two days but after that I had to walk to the cafeteria as well. For all of my meals.

Thank you for joining us at the Down To Birth Show. You can reach us @downtobirthshow on Instagram or email us at Contact@DownToBirthShow.com. All of Cynthia’s classes and Trisha’s breastfeeding services are offered live online, serving women and couples everywhere. Please remember this information is made available to you for educational and informational purposes only. It is in no way a substitute for medical advice. For our full disclaimer visit downtobirthshow.com/disclaimer. Thanks for tuning in, and as always, hear everyone and listen to yourself.

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About Cynthia Overgard

Cynthia is a published writer, advocate, childbirth educator and postpartum support specialist in prenatal/postpartum healthcare and has served thousands of clients since 2007. 

About Trisha Ludwig

Trisha is a Yale-educated Certified Nurse Midwife and International Board Certified Lactation Counselor. She has worked in women's health for more than 15 years.

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