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#205 - 👶 Beyond The Beeps - You Are Your Baby’s Voice

Hello Friends 👋

In this intimate chat with Leah, Isabella shares her experience of her baby Lily being born prematurely at 27 weeks and being admitted to the NICU. She talks about the initial shock and the unexpected journey of having a baby in the NICU. Isabella shares her daughter Lily's journey in the NICU, from surgery to feeding challenges and extended hospital stays. She emphasizes the importance of trusting your instincts as a parent. Isabella expresses gratitude for the medical staff and the lessons she learned about patience and acceptance. She shares her hope for other NICU families and offers words of wisdom for those currently in the NICU.

To learn more about the amazing work done by the team at ICU Baby visit



Premature birth can lead to unexpected challenges and a NICU stay.

Being separated from your baby in the NICU can be emotionally difficult.

Finding strength and support from your partner and faith can help navigate the NICU journey. Positive outcomes are possible with the right medical care and support. The NICU journey is a roller coaster with unexpected challenges and setbacks.

Parents should trust their instincts and advocate for their baby's needs.

Gratitude and hope are essential in navigating the NICU experience.

The support of NICU nurses and medical staff is invaluable.


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

Leah (00:01) I was at the bedside of a NICU mother some time ago who said to me, Leah, something isn't right. My baby doesn't cry like that. I asked her what she meant and she explained what her daughter's typical affect was and how this was so different. She said her own gut instinct was telling her that her baby was in pain. I asked her if she had told anyone and she had.


and they had tried some minor adjustments, but were mostly just watching and waiting to see what this could mean. Her baby was very premature and very tiny, so intervening is a big deal at this age. This didn't sit right with this mother. She asked again later that afternoon, and again that night, because her daughter just wasn't herself. Finally, the next day, they were able to figure out that her daughter's breathing tube was misaligned.


and it was indeed causing her discomfort or pain. Mom was right.


Though many days parents feel powerless, feel like you can't do anything or you can't do enough, you are so important. Today to help us understand this and to share her own NICU story is Isabella.


And Isabella, before she even gets to her NICU story, is one of our NICU mentors and has been since the beginning of ICU Baby. She has a beautiful spirit about her.


which I hope you'll feel today when she shares. She's also the mother of two children, two beautiful teenage girls, and an entrepreneur with a fourth generation family food industry company, which is operating worldwide and takes her all around the world, meeting people everywhere. And then, in case that's not enough, she's also a world renowned, and...


sought after athlete. She has medals and awards in her age group athletics and she competes in triathlons, marathons, which she just informed me is just for training. She's on a path towards the world championships. She will be doing the Ironman Worlds this coming year.


And if you're ever out at any of these major events, you'll probably see Isabella there working really hard and putting in some amazing results. It's a joy and a pleasure to have you here today, Isabella. Welcome.


Isabella Lundeberg (02:13) Thank you so much for those words. Yeah. Very sweet.


Leah (02:15) Yeah. Well, you're wonderful and in all ways. And today I wanted to help everybody kind of catch up to your beautiful story with Lily. Tell me a little bit about her intro to the NICU. What brought her there?


Isabella Lundeberg (02:35) Well, so Lily was my first baby. I had a relatively uncomplicated pregnancy. No complications really. And I didn't prior to Lily try to be pregnant. It was really very straightforward and very easy. It wasn't the easiest thing for me as a person to be pregnant because I'm very active.


and I do a lot of sports, but nonetheless it was a very straightforward pregnancy. Until 27 weeks when I one morning I felt a few drops, just drops. And I thought, ooh, maybe she's growing. I wasn't showing very much, but you know, maybe she's pressing down on my bladder. And I went on with my day, not really thinking much of it. I went to the gym, I worked out, and I started getting cramps all of a sudden. And I thought, this is strange.


Leah (03:35) Sure.


Isabella Lundeberg (03:51) But you know because it's your first time pregnant you don't know what's normal and what isn't really So I just sort of thought okay Maybe you know, this is normal. It wasn't I have a very high pain threshold So, you know, I really didn't Pay much attention to it for most of the day the day But then at night I saw blood


Leah (03:57) Right.


Isabella Lundeberg (04:20) Not at night, maybe like at 5 p.m. I saw blood and I thought, okay, this is not good. I called my obstetrician, I called my husband and we immediately went to the hospital. And basically my water had broken and I was six centimeter dilated. So right on.


right on track to having very unpreparedly having a little girl.


Leah (04:56) Yeah, she was on her way.


Isabella Lundeberg (04:58) She was definitely on her way. When you've never come, you know, I don't know how many people think about having their child end up in the NICU. I can tell you it never crossed my mind. I didn't even consider it as an option really.


Isabella Lundeberg (05:28) Um, nor did I have a pregnancy that I would have, you know, been a high risk or would have had any indication that I would end up in the NICU. And, um, I think I was a little shocked to be honest. Then they said, okay, we're going to give you steroid shots and you, you need to keep her in, do whatever you need to do, but you cannot give birth for the next 12 hours.


because the steroid shot needs 12 hours to work.


Leah (06:04) I always find this a funny conversation though, that when they say do everything you can do, you would have been doing that all along, right? We hear it from all the families, do what you need to do, as if we have this incredible control. We didn't cause this to happen, so we're not going to cause the next thing to happen. Okay, so.


Isabella Lundeberg (06:09)


Of course, I didn't know this, but I found out very quickly. We were living in London at the time, and there's basically two hospitals which are private. One is only private but doesn't have a NICU, and the other one is connected to a public hospital and has a NICU. Little did I know when I made the choice of hospital, I selected the hospital with a NICU, which 18 years ago meant that she was guaranteed a place in that NICU because Great Britain at that point did not have that many, I think it was level four NICUs that I needed. And she could have ended up anywhere in the country, wherever there was room, if I would have given birth at the other hospital. So it ended up that I actually couldn't stay in the private part of the hospital. I was put on the normal ward. I had no bag. I had nothing ready. No room ready. Nothing. And I held out 12 hours. Exactly 12 hours. But then it went so quick that I could get no epidural, nothing. She was born in 15 minutes.


Leah (08:09) Wow.


Isabella Lundeberg (08:13) My husband didn't make it on time from home to the hospital. because no one called him that, you know, it was too fast.


Leah (08:22) Sure, it was too fast.


What do you remember about those first moments when you saw her? Were you able to see her? She didn't cry.


Isabella Lundeberg (08:34) She didn't cry. I was worried, but I was also in a lot of pain. A lot of pain that I don't…really, and it was a mixture of trying to hold it together for myself, you know, the pain and everything was going on and being worried about her and being quite frankly overwhelmed with the situation.


Leah (09:03) Yeah. Did anybody tell you anything at that point?


Isabella Lundeberg (09:08) Nothing. Mark came in when she was out, Leah (09:13) Your husband.


Isabella my husband, and I sent him with her to the NICU. So he went off to the NICU. They did tell me she's okay. They did tell me she's okay. But you don't really know at that point in time.


Leah (09:36) Yeah. How long was it before you were able to go? Because most, we know our mamas sometimes, you had a vaginal delivery, so some people wait.


Isabella Lundeberg (09:45) No, they had me walking immediately. I went, they sent me after birth to shower and I could go down. I went home the same day. I gave birth to her at seven o'clock in the morning and at four I was discharged from the hospital.


Leah (09:51) Okay.


Oh wow.


That's a little different here in the United States. Okay, so did you go to see her before you went home? Yeah, and what do you remember about that first time? Since you said before you hadn't, you didn't know the NICU, most people don't.


Isabella Lundeberg (10:03) Yeah, yeah, for sure.


Nothing. I didn't. So initially, because she was extremely stable when she was born, she didn't need to be intubated. She was actually in what we classify in the B section. She wasn't even in A, her level two. Surprisingly, she was really, her lungs were good. She was good. Her weight was decent. She was doing really well. Her


Leah (10:23) Mm-hmm.


Sure, like a level two. Sure.


Isabella Lundeberg (10:46) Her eyes were still closed. She had not opened her eyes and she had jaundice. But besides that, she was actually pretty good. I mean, she was long, she was skinny and the size of my husband's hand.


Isabella Lundeberg (11:13) So.


I don't think you can imagine how tiny babies are, even at 27 weeks. I mean, you and I see babies much smaller than that every week, but. They're really tiny.


Leah (11:28) That's tiny though. The size, then it's something, you know, and it's a thing that I know they do sometimes is to take your, you know, sterilize a wedding band and put it on your baby's leg for that idea of how big they are, that the comparison, and you have your husband's hand. It's, yeah, wow, okay.


Isabella Lundeberg (11:46) You can't imagine. Yeah.




Leah (11:54) So because you had chosen this hospital, were you nearby? Were you living nearby the hospital? Okay.


Isabella Lundeberg (11:58) About 15 minutes? Yeah, 15 minutes. It was not, you know, London traffic depending, but it was relatively close to home and easy to reach and easy to go to. So that was no constraint, luckily. But had I not chosen, you know, little do you know sometimes the choices you make and what big consequences they can have.


Leah (12:07) Hmm.


Thank goodness, right?


Right? Right. Yeah, we're hearing that more and more, the more people we talk to even here is that. And how did the beginning of Lily's course go? Like what was she? Was she working on it at the beginning? You said she was pretty stable.


Isabella Lundeberg (12:42) Well, blue light, we were able to hold her very quickly. I remember the second day being able to do kangaroo care. I mean, that's, you know, for a 27-weeker, that's very quick. She was doing really, really well. Obviously she was connected to, to machines and there was constant beeps and, you know, she had desats, but nothing.


Isabella Lundeberg (13:12) Nothing concerning at all. Nothing concerning. Nothing where you would think we would be heading down the path we went down.


Leah (13:14) Yeah.




Isabella Lundeberg (13:29) So, yes.


Leah (13:29) Let's talk about that path. Yeah, we'll take our time with it.


Isabella Lundeberg (13:34) Yeah, so we had about four good days.


She was on antibiotics, which is preventative. And she, because she was doing so well, they took her off the antibiotics.


Leah (14:01) Mm-hmm. She was feeding at that point. They had started breast milk or formula.


Isabella Lundeberg (14:03) And she was eating at that point. I immediately got, yes, only breast milk. I immediately got a pump, put myself on a schedule, was immediately successful, had no issues. So she was feeding at that point, obviously, through a cannula, through the nose, no?


Isabella Lundeberg (14:32) And then by day five, she was desading a lot. A lot.


Leah (14:37) Hmm.


Isabella Lundeberg (14:43) And I remember thinking, this is strange. She's not like that.


And then came day six and it got worse. And I remember the doctors telling me, you know, it's normal. NICU babies have, you know, ups and downs. Don't worry. It was to be expected. And there were almost...


Oh, I guess they were trying to calm me down, but I clearly knew that something was going on. I don't know how, but I guess you have that initial instinct with your baby that you know if something's going on. I knew that something was wrong. And it took a little bit of convincing, actually, to...


get everyone to listen to me, to be honest. And I'm not the type of person who's, you know, I'm very calm and collected even in such a situation. You know, I didn't know any better. I needed to believe the doctors that she was okay.


Leah (15:46) Yeah.




Isabella Lundeberg (16:06) So we went home on day six in the evening. I would spend most days from morning to night, and my husband would come at night to the hospital after work. We got a call at about 4 a.m. that we needed to come to the hospital immediately, that things had taken a turn for the worst. We didn't know what that meant at first. So we arrived.


She was at that point in NICU A (level 3) There were about eight, nine people on her, around her. She was intubated.


they were putting in a line.


and we were told very quickly. She looked completely deformed, so she had completely inflated. Her tummy was completely, like she had a balloon inside of her. And they said, so she's full of gas. We need to get the gas out. She's on full life support. We cannot do more for her than we are doing. You need to go to the family room.


and we will keep you updated. And we were sent away. Leah (17:57) Another painful separation to watch your baby fighting.


Isabella Lundeberg (18:08) It came very unexpected. You know, it came... You know, you have that initial wake-up call when you deliver and they tell you and she ends up in the NICU. But then everything went well, you know, we were like, okay, we might need to wait for her to grow and to be ready, but we didn't expect, you know… to have a hiccup like we did.


Leah (18:37) Yeah.


Isabella Lundeberg (18:44) It was hard. It was very hard.


Leah (18:47) and they told you, go to this room and what?


Isabella Lundeberg (18:50) And we sat there and we talked amongst each other and we tried to.


be there for each other. Luckily, we have an ability or that when one is very low, the other one is strong and vice versa. So we were able to


Leah (18:58) Yeah.


Isabella Lundeberg (19:13) accompany each other and find, you know.some sort of.


common denominator that whatever's meant to happen will happen. In the sense, you know, it's in God's hand. We turned to our faith in that second consciously, I think for the first time in our lives.


Leah (19:51) I think that's a very...


There's nothing more spiritual, I think, than birth and then being on the edge of what they're offering to you, which would be death, you know.


Isabella Lundeberg (20:08) They had, by the time we arrived to the hospital, had resuscitated her twice. So she had coded twice. And the first update after the hour, they had to resuscitate her in that time. One more time. So, I mean, we knew it was a question of life and death.


So the 80% I was given as the day I walked into the hospital of survival rate didn't look so 80% any longer.


Leah (21:01) Yeah.


the I can only imagine the minutes feeling like years sitting there.


Isabella Lundeberg (21:18) You lose complete consciousness of time. You think a minute is an hour. It's a very weird state.


Leah (21:31) And when someone finally was able to come to you, were they explaining what's going on with Lily? What? Why is this happening?


Isabella Lundeberg (21:38) So I think the first more in depth update was about three hours after we arrived to the hospital. They had put in at that point drains on each side of the stomach to get the gas out. So they then assumed


Leah (21:56) Mm-hmm.


Isabella Lundeberg (22:07) that she had a perforation of her stomach.


Leah (22:12) Mm-hmm.


Isabella Lundeberg (22:16) But they told us they would need to go in to see the damage.


Leah (22:24) into her like stomach abdominal area to see where it was. Okay.


Isabella Lundeberg (22:27) Exactly. But they would not be able to do that unless she was stable enough.


Leah (22:35) Oh, wow. What does stable enough mean? Did they give you like what she had to be able to? Isabella Lundeberg (22:44) I honestly, I don't, I know there were parameters given to us. I mean, she was at that point on full oxygen support. And they said to us, she would not survive the anesthesia.


Leah (22:49) Mm-hmm.




Sure, yeah.


Isabella Lundeberg (23:03) Um, so it was a question of just kind of, you know, finding a


a good moment to go in.


and it took two days.


Leah (23:25) What were those two days like for you? Do you even, did they feel like two days or was one massive week long of two days?


Isabella Lundeberg (23:33) It feels like one massive, because we were already told that they didn't know how big the damage was inside of her. And they could not tell us whether it was repairable. They were very clear with us.


Leah (23:49) Mm-hmm.


Isabella Lundeberg (24:03) They did not, you know, they didn't soften the truth. They told us straight out that they cannot tell us an answer on her prognosis until they've gone in.


And then the question is whether she even survives surgery.


Leah (24:26) levels of uncertainty and not like, oh we're not uncertain, but like you said, life and death uncertainty is, it's just unparalleled for you and for Mark and obviously for Lily. And then two days passed and they said, okay we can go.


Isabella Lundeberg (24:49) We can go. And we were able to see her. We were able to take her down, go down with her to the operation room. Leah (25:01) Mm-hmm.


Isabella Lundeberg (25:03) But because it was going to be several hours, we left the hospital and we went to the park.


And we kind of made peace with the situation, accepting that whatever the outcome is, and I'm sorry, I'm getting emotional.


Leah (25:24) Please do. It's okay.


Isabella Lundeberg (25:27) It'll be okay. It's what's meant to be.


It was hard.


Leah (25:40) It's something that parents, these are things parents shouldn't have to live through. It's being faced in parenthood with the most challenging.


experience in your courage and compassion to say, we need to go and be in nature and sit in this park and connect. Yeah.


Isabella Lundeberg (26:04) Connect. Connect with Earth. Connect with God.


Leah (26:10) And that is something that I think we, the NICU has to be sterile, right? And it has to be so sort of devoid of the earth in a way. It's otherworldly, you know, sort of supersonic. And trusting yourself to go there, to seek that comfort is,


Isabella Lundeberg (26:29) Yeah.


Leah (26:38) that just takes so much courage to be that strong and to say I need this so I can come back for Lily.


Isabella Lundeberg (26:45) Yeah, hoping we could come back to her. We didn't know.


Leah (26:50) Yeah, hoping. Yeah. Yeah, hope.


Isabella Lundeberg (26:54) Hope, hope. You know, luckily we were two. Luckily we were able to help each other in that conversation and in those moments because we didn't have family around. It was just the two of us.


Leah (27:14) Yeah.


they call you or did you go back to the hospital?


Isabella Lundeberg (27:22) They did call us. Yeah, they did call us. And they let us know that the surgery went much better than expected. The hole was closer than expected. And they were able to realign her intestines, seal the hole, and close her up again.


Leah (27:47) Mm-hmm.


So for her they didn't have to take the intestine out, right? Sometimes they take it out and put a little bag. Right.


Isabella Lundeberg (28:00) and leave it out. So in her case, no. So in her case, they were able to seal it. And obviously the whole intestine was out because they needed to check everything. But they were actually able to put it back inside and close it and close her up.


Leah (28:10) Mm-hmm.


What do you remember about seeing her after that procedure?


Isabella Lundeberg (28:31) She was horrid. She was, I mean, she was still intubated. It was, her tummy was so extended.


Leah (28:44) Mm.


Isabella Lundeberg (28:47) And it wasn't, I mean, she was fighting for her life.


Leah (28:52) Yeah. Isabella Lundeberg (28:57) It wasn't like we had the surgery and everything…was, was normal again, or the normal we knew the first couple of days. We had now a completely different situation. Everything changed. We went from a non-intubated baby into an intubated baby that needed support. It was completely different.


Leah (29:10) Right.






Isabella Lundeberg (29:33) completely different. You know, she couldn't feed.


very different.


Leah (29:43) Yeah.


You said she wasn't feeding at first. Did she start feeding? How long did it take?


Isabella Lundeberg (29:52) They waited. So they waited quite a bit to be honest, for her to stabilize her. So they, I believe they just put in the line to put in the necessary liquids.


Leah (29:57) Yeah, the TPN.


Isabella Lundeberg (30:19) But I think it was three, yeah, it was three, four days before they tried. you know, introducing.


very little. I mean, we're talking maybe one ml.


Leah (30:30) Right.


breast milk?


Isabella Lundeberg (30:34) breast milk because, you know, we had no idea how the body was going to react. And then those moments for her, you know, waiting for that first time she poops again. Um, was something else because imagine your whole organism is thrown off.


Leah (31:05) Right? Yeah. And I'm sure they, you know, clean everything out when they're in there and, you know, make sure and


Isabella Lundeberg (31:12) Yeah, they did take, they did in the procedure actually take her appendix out as well because they needed to kind of clean and have one exit they explained to us.


Leah (31:26) Hmm. Yeah.


Isabella Lundeberg (31:30) and she continued to have the drains, obviously, on her stomach.


Leah (31:34) That's what I was gonna ask you. Did it mean that we could close up some other holes now? Or no, she was still with the trains for a while. Yeah. And that means, and I'm guessing here, so you'll tell me if I'm wrong, that now we're spending more time without being held in mama and dad's arms. Yeah. How, yeah. How long do you think it was?


Isabella Lundeberg (31:40) She had drains for a while. Yes.


Yeah, for sure. I think from the day, I think three weeks.


Isabella Lundeberg (32:05) three weeks.


I mean, I was still there. They allowed me to open the incubator. I was able, you know, to touch her hand.


Leah (32:15) Mm-hmm.


Isabella Lundeberg (32:18) But yeah, until really she was extubated, we didn't hold her again.


And even when she was extubated, her values had changed. Her values, her scheme of the values, her DSATs, it was different.


Leah (32:46) Yeah. So instead of going from having just like a nasal cannula for oxygen to getting off of that, now you had to kind of progress through all the other types of breathing apparatus. Yeah.


Isabella Lundeberg (32:51) Thank you.


We went through CPAP, we went through everything.




And at a certain point, her infection values came back up again. So she was put on antibiotics again. Um, and the hospital made a decision to keep her in A (level 3)


Leah (33:13) Hmm.


So keep her at the highest level of care that they can provide.


Isabella Lundeberg (33:28) Yes, they told us she would not. She would be a baby that would go home from a...


Leah (33:35) Sure. Yeah, they couldn't take a risk by stepping her down to a lower level of care. She needed to stay where she was.


Isabella Lundeberg (33:42) No, no. Something which I found very, very powerful was she had the same nurses through all those weeks. And those nurses became my companions and they became her companions. Till this day, I have a relationship.


Leah (33:53) Hmm.


Isabella Lundeberg (34:08) to those people that cared for Lily in her first days. And because it's such a small NICU.


We saw a lot of families that didn't have the chance to take a baby home.


which is when you get pregnant and have an uncomplicated pregnancy, it is your first baby, it does not cross your mind that you might not take your baby home immediately, one, or not take it home from the NICU. I mean, that's just from a pers-


Leah (34:52) Yeah. Yeah.


Isabella Lundeberg (35:02) from a panorama in front of your eyes is just not something you consider. Maybe I was naive. Maybe I was totally naive, but my doctor didn't tell me.


Leah (35:07) Yeah.


Right? Yeah. Right? Well, yeah, like you said, you had an uncomplicated pregnancy and introducing extra fear, or reality.


Isabella Lundeberg (35:18) There was no reason to.


doesn't help either. Or reality doesn't help either.


Leah (35:34) Yeah. You said those nurses were very important to you. Was there something that someone said to you ever that stuck with you? Or perhaps not that, something you wish you had known?


Isabella Lundeberg (35:52) Yeah, I think the thing that I learned is that a NICU is not a straight line up the mountain or to the finish line. It is always, I remember Ivan telling me, it is two steps forward and three steps back.


And it really, you never know what day you're gonna walk into in the NICU. You could have left the evening before thinking, wow, now everything's good, now everything's fine. And you go in the next morning.


Leah (36:28) Hmm.


Isabella Lundeberg (36:38) And you have, you know, she had other complications, you know, with the gases that filled up the kidneys, the the, you know, it they found blood in her brain. You know, it there were so many other things. Because she was born early, because she had the complications that she had that.


Leah (36:56) Right.


Isabella Lundeberg (37:08) You know, you were on constant alert mode because of that roller coaster. You were never relaxed thinking, oh my God, okay, this is gonna be fine. Because no one can guarantee that it's gonna be fine.


Leah (37:13) Mm-hmm.


I think that's something that is so important for everyone, parents and medical teams and everyone to know, you know, because, you know, sometimes medical staff, nurses say, just relax, mom, just calm down, it's fine. Right? And there's no way, because like you said, you left Lily one way and came back and it was a whole different day. And we see that a lot.


Sometimes we say not even a whole day take it half day at a time. These babies are changing a lot


Isabella Lundeberg (38:03) Yeah.


for sure an hour, the change can come in an hour. So, you know, as a parent, your baby cannot talk. I think it's really important for parents to have a voice. I think the how is important, how you voice things. But if you have questions, if you have doubts, if you...


See something that...


you know, that just causes you to, hmm, doesn't feel right, you know, it's okay to ask and it's okay to get help and it's okay to ask twice. I think it's important because you are your baby's only communicator.


Leah (38:50) something doesn't feel right.


I was wondering how that felt for you when your mother instinct was telling you, something's wrong here, something's wrong with Lily. You said to me before at other times, I was sitting by her bedside and by day four I knew her and something didn't seem right and...


Have you been able to make peace or not? Or to think about, gosh, you know, something didn't feel right that day, and it took two days. How did that resonate with you?


Isabella Lundeberg (39:55) When Lily was discharged, I had a conversation with the head pediatrician in the NICU.


And she told me that she was sorry, that she didn't initially think it was what, what would happen afterwards. And I was after that conversation, I'm at a total peace. I know that those doctors, they do the best they can and the nurses do the best they can. Not everything. you know, can be understood, picked up. It can happen in a split second. It takes time sometimes to kind of pinpoint what is causing it. You know, Lily couldn't tell them my tummy hurts or my stomach is perforated.


Leah (41:11) Mm-hmm. Yeah.


Isabella Lundeberg (41:20) they do the best they can.


Leah (41:24) Yeah, which is miracles. Yeah.


Isabella Lundeberg (41:25) Otherwise, you know, which is, they wouldn't do the job they do, which is a hard job.


Leah (41:35) really is. Day in and day out.


Isabella Lundeberg (41:37) highest of respects for those nurses taking care of those babies and for those doctors.


Leah (41:47) You mentioned, well, before people are listening in, after 13 weeks, Lily went home from the NICU, which is an incredible, incredibly short, I mean, if we're doing the math quickly from 27 weeks, she went home at 40 weeks, full term, which we know doesn't happen when you're premature. Oftentimes you end up staying a little extra time, sometimes not.


Isabella Lundeberg (41:57) Correct.




No, and yeah, Lily's big issue was the feeding. I mean, picking, you know, you have to feed a certain way in order to be able to go home. I knew though, by that time, that for her being in the hospital would make her also more skeptical to.


Leah (42:17) Um,




Isabella Lundeberg (42:46) more things happening to her. There's bacteria. People are, these babies are sick babies. And as much as you try that nothing passes between one or a baby doesn't get something, you want to be able to take your baby home.


as soon as it's safe to do so.


Leah (43:12) Right.


Isabella Lundeberg (43:14) Um, and we, at a certain point, it was just the feeding. Everything else had fallen into place. Um, and we made the decision to have care for her at home with a nurse, um, 24 hour nurse, which we needed.


Leah (43:44) Yeah.


Isabella Lundeberg (43:44) at that point still. But we were able to take her home.


Leah (43:51) So that's an opportunity that, gosh, I really wish was available for more folks. It's an incredible financial burden, right? Understandable to invest in, if you could. The only thing helped you out with that, yeah.


Isabella Lundeberg (43:53) No. Oh my god. F.




I'm very thankful to my parents who helped with that because Mark and I wouldn't have been able to afford it.


Leah (44:14) Right. I mean, when you had shared this with me, I was like, wow, how amazing. The closest thing that I could think that we have here would be a postpartum doula. But even then, that's only like a day a week or, you know, a couple of days. It's not that 24-hour nursing care that Lily needed at the time to work through her feeding. Yeah.


Isabella Lundeberg (44:32) Yeah.


Yeah. No, I couldn't have taken her home with butternut. There was no. Leah (44:44) Yeah. And was she feeding by mouth at that time or did she still have a tube?


Isabella Lundeberg (44:48) Yes. She would, was feeding it by mouth. The problem was the, it would take hours to get the milk down. And if I tell you hours, it would take hours. So you, we would then at the beginning, we would still put a line in and put the rest down and out with a line. Um,


Leah (44:58) Hmm.


So like an NG tube, you mean by a line, the little tube that goes through the nose to the tummy.


Isabella Lundeberg (45:19) Exactly, exactly, because that was the only way.


Leah (45:25) Yeah.


Okay, how long were you doing that for? Do you remember?


Isabella Lundeberg (45:35) Not long, the tube not long. Pretty soon, I mean her feeding improved at home that we were able to get her to a good level of milk at home. It would take still very long, but we at least got rid of the tube. And really her feeding really only just improved.


Leah (45:53) Hmm.


Isabella Lundeberg (46:04) when we introduced solids.


She was not a not a good milk drinker.


Leah (46:13) Yeah, she struggled with it. Tummy, yeah. All along while you were doing the feeding with the tube and it was taking so long, she was still gaining weight, right, like she followed a good path.


Isabella Lundeberg (46:14) She really struggled with it.


It was every, we had to have a scale. You know, it was not like we were sent home and no longer visualized. Actually, NHS, which is the British health system, sent someone home to check her, I think, once a week or twice a week. So they would weigh her, they would look at her, they would check her on top of her, you know, normal.


checkups she still had at the hospital because she was not yet completely in aftercare yet and we still needed to follow up with a few specialists.


Leah (47:01) Yeah.


Yeah, the NICU doesn't end at discharge, you know?


Isabella Lundeberg (47:14) No, it doesn't. No, and then you have the, you know, you don't know.


if her developmental, if she's gonna have developmental issues, if she's born at 27 weeks, that, you know, she has to reach all the milestones according to timeline, otherwise you need help.


Leah (47:41) Yeah. So tell me about Lily now.


Isabella Lundeberg (47:53) Lily’s 18. She's a freshman in college, believe it or not. A healthy, happy...


successful young lady with a huge scar on her tummy.


and with many, many little scars on her hand from those times as reminder of the hospital. But that's part of her story.


Leah (48:30) Yeah.


Yeah, this is always the part that makes me teary-eyed when we talk about the big kids.


Isabella Lundeberg (48:43) Yeah.


Leah (48:48) And you talked about hope when you were at the park. You kind of mentioned in other places. What does hope mean to you?


Isabella Lundeberg (48:53) Yeah.


Hope means knowing that there's someone bigger than you that has a plan.


and accepting that and that's hope. Being thankful for what you get, no matter what it is, how hard it is. Leah (49:32) Yeah.


A lot of folks say that the NICU changes them.


Isabella Lundeberg (49:45) Yeah. Yes.


Leah (49:49) How has it changed you?


Isabella Lundeberg (49:52) Um, it was a real reality check for me.


It taught me thatyou know, death is part of life. That we have to be grateful for every day that we get. A healthy child is the biggest gift on the planet.


And we need to have awareness for that.


For me, those weeks she was in the hospital were the steepest, hardest learning curve I've ever had to master.




I jokingly always said, you know, when God handed out patience, I wasn't present. I learned what patience is.


I learned what patience is.


Leah (51:23) You shared today just.




so much love and so much wisdom and hope and


so many things with us and I'm just incredibly grateful. If you were to, if there's something you missed or something that you want to reaffirm as, you know, words of wisdom you would give someone who's sitting by their bedside, their baby's bedside now, or supporting someone who's in the NICU, what do you think that would be?


Isabella Lundeberg (52:08) You are your baby's advocate. Remember that.


Trust, trust that you know your child and it's okay to ask for help when you think something's wrong.


Leah (52:47) I can't thank you enough Isabella.


Isabella Lundeberg (52:47) and it used.


The NICU is a … a hard place. And my heart goes out to everyone that has a similar experience.


Leah (53:12) If you're one of those people who's sitting by your baby's bedside today, or in the family conference room, or driving to or from, or up late in the middle of the night pumping milk or watching a camera, or just awake pacing, because we know we do that, Isabella and I want you to know that you're not alone.


Isabella Lundeberg (53:38) Yes, for sure.


Leah (53:40) and we really look forward to sitting with you again next time. Thank you so much for listening in and thank you Isabella for joining.


Isabella Lundeberg (53:52) Thank you for having me.


Leah (53:54) Take care, everyone.


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