Dr. Deborah Tom moderated a panel discussion among parents of infants with BPD to explore how providers can better assess the needs of individual families and work within care teams to improve care delivery.
Good afternoon and welcome to our patient panel. Um My name is Doctor Tom Deborah Tom. I am a neonatologist and a member of the Neonatology VPD team here at Pink Children's Hospital. And um we have had many excellent presentations by people that are very, very passionate about taking care of babies that have BPD. We are fortunate to have four families that have graciously agreed to come and share their stories about their baby with us today. Um I would say that this is a great way to end the conference because seeing your babies, I mean, this is exactly why we do what we do. And so thank you very, very much for coming. Um We um have asked these families to share both their hospitalization and also their time after hospitalization. So we're looking forward to hearing all about your stories. We have, I don't think they can see it on the camera, but we have all the families lined up in the front row and I would like to introduce each one of them. Um First, we have going Mr Tommy Bar Bonner and Miss Margaret Olson and their little baby girl, Eleanor. Second, we have Mr and Mrs to um Tommy and Paula Piccola with their little daughter Layla. And then we have Miss Andrea White and her daughter Sara. And last we have Mr um Ryan Weaver and Miss Hazel um Patel. She was not able to be here with us today. She is with her daughter Aah at AA at home. Right? Ok. Perfect. So, um I think without wasting any more time, we'll get right into talking to our first family, Mr Tommy Barner and Mrs Margaret Olson. Would you like to come up and share your slides? Share your story. Um All right. Take it away. Well, thank you very much. We appreciate your time and uh the opportunity to share our story with you. Um as she said, Doctor Tom, my name is Tommy Bonner and this is my wife Margaret and our daughter, her name is Eleanor and we had the adventure of going through the NU and going through VPD. Uh I'm the type I like to give analogies, but I could not think of an analogy that goes with this situation because every situation is unique and different. I remember our very first week there, there was a couple right next to us and um unfortunately, their son did not make it and I had no idea going into this what was gonna happen. And when that didn't make it, that when he didn't make it, that made all of this a reality for us because a little bit about our story is Eleanor. Her due date was April 8th, 2023 and she was born December 28th, 2022. She's born at 25 weeks, weighing 640 g, which is about £1.06 ounces. She spent 100 and 20 days in the N in the NICU. And when she left though, she was about 3061.4748 g, which is about £6.12 ounces for us non medical professionals. And she left the NICU on April. April 27th, 2023. So I think just recently, she has been out of the hospital longer than she was in the hospital. And it's been quite an adventure and quite a journey. So instead of giving an analogy, I wanted to share our story with you and start by saying thank you to all of you that helped doctor Brown and doctor Williams. They were literally helping my daughter and I know many of you helped and have provided help for many, many others. But wanted to say thank you to our medical family or Niki family as we call them for helping us get to this point. So our Nicky journey started on July 1st 2022 and we got married, we were a little bit older, getting married. I'm in my forties and I will not say how old my wife is, but we were a little older and it was amazing come to find out that honeymoon babies are a real thing. So when my wife told me she passed the test, I'm like, I've never passed the test in my whole life. I'm excited for this moment and it was amazing because all of my friends, I'm in my forties and all my wife's siblings and friends. They've all had babies. I've experienced their journey through them. So I knew what it was gonna be like being a dad. I knew what it was gonna be like having a baby until December 24th, 2022. We were supposed to fly to Illinois to be with my family on Christmas and my wife who is a nurse, took her blood pressure and it was way higher than it was supposed to be. And go Tommy. I think I have preeclampsia. I think we need to go to the hospital. And I'm like, what the heck is preeclampsia? You're just trying to get out of going to Illinois in the cold. And ultimately she goes, I think we need to go and I'm like, ok, so Christmas Eve, we go to the hospital, find out she has preeclampsia, get transferred over to Saint Joe's. And then we find out she needs to be in the hospital until Mar March until she delivers the baby. So this is our Christmas picture. My wife still looks amazing. And you can tell I started putting on the pounds. Few days later, December 28th, our little girl was born £1.06 ounces. As you can see, 640 g. Just to give you a reference how big she is. Here's my hand and that's my daughter and that's how our NICU journey began. Now, what to expect of this journey. And this was our first family picture is we had no idea what to expect because ultimately, like I said, I've lived vicariously through all my friends and family. She has as well. We've had no other Children. So we had no idea. I didn't really know anyone. I didn't think that I had gone through this experience going through the NICU, even though everyone's experience is different. Going through the Nicky was quite the experience in another self having BPD is quite the experience of itself. And the more I started sharing, the more people like, oh, I had a sister that had a Niki baby. Oh, did you know that my daughter was in the NICU? I'm like what your daughter is like a teenager looks great. Go. I know. So we started learning quite a bit about this. Um The biggest thing that we learned is everyone's journey is different. Everyone's journey is original. And my daughters, this is how she felt and how she was gonna face it. You can see she's already flipping everyone off which told us how much of a fighter she's going to be. Mhm. Now just to give you an idea about me and my wife, we see things a little bit differently. We're a little bit different. She's a nurse, as I said, over at Saint Joe's. She's in the neuro IC U um, me, I'm in the, the finance world. That's the reason I'm dressed like this. I came straight from work. She likes the facts. She likes literal things like this and I kind of look at processes and everything else. So even though we had the Niki journey, we kind of viewed things a little bit differently as we went through that. So I'd like to take some time for my wife to kind of share her views and her experiences as we were going through this journey, then I'll kind of step back in and show you my views and my experience if that's ok. Oh, ok. So he's the entertaining one. So I'll go as fast as I can. Um, like he said, I'm a nurse. So when I did this experience I do everything was, was what I knew about nursing about people about intubation and things like that was what I related to from people in the, in the neuro IC U. So when she was born, she did that whole honeymoon phase where she's actually really good. She came out, she was crying. It's like, oh, she's a, she can be great and then start with the tears. I'll just take over for you too. Doing I know. But anyways it was hard, said it. So she's really good though. That first week, um, then after the first week she, of course, she kind of crump a little bit. She needed a, all that oxygen and in the information to it just went up really fast. Yeah, I haven't talked about this for a while, apparently. Right. Hm. She's doing awesome. So, she's amazing. But this first, like, month and a half was so hard. She was sitting on the oscillator. Yeah, I had a lot of night for good, like three weeks. That's what people die on that. I'm used to just coming from COVID. You know, everybody's on night, everybody's on nix, everybody's on their faces and that's what my baby is doing. I'm like, this is not cool, but eventually she did get better. We got like a few doses of, of dart, you know, and first couple doses did nothing. It wasn't until like the third round that she finally, like, responded to it. She finally started getting a little bit better and, uh, she got off of the sticking ventilator and then we could hold her every day and it was, it was amazing, you know, um, because I, I remember she had like a pretty bad pulmonary hypertension too when she was in there. And I remember getting an echo about a month later and it was like the PP A, you know, the, the hypertension was gone and I was like, well then she should be better by now. And it was really confusing why she wasn't getting better and then I realized it because she has PPD and she's just not gonna get better. But, uh, she did amaze you. She had to just eat more food to get her to go home. But she was discharged about, you know, a few weeks after her due date was, uh, she was sent home on like an eighth of a liter of oxygen. Um, she did awesome on that. She, she pretty much rocked it. Oh, yeah. The nurses are thinking amazing. They had like a little spa days on her. That was like the first spot that she had, she had a little bath. It was Tom and I both have that as our pictures on our phone still today, we haven't found one to replace that one yet. But, uh, she is as for our lives, um, since we've been home it's keeping her away from a lot of groups of people and it's a little different because Tommy likes to go and do things. I'm kind of more of a homebody than he is, but he would love to go to games. Let's go to like sports games and things like that. Anyway, that knew him in the hospital. They ask you who, who's your team, you know. And, uh, but it's been, it's been a, she's been a blessing to us, no doubt. Um, we feel really blessed that we've, we have had to be readmitted to the hospital. Uh When she started to get better, she just got better. Her eyes improved, her lungs improved. She started eating by herself better. It just everything just progressed the way it should progress and we feel very blessed to have her and you can hear Tommy's point of view. It's fine. My wife is amazing and she, she's very nervous to do this. So please say how great she was. Maybe we can get her to come out and publicly speak more often. Thank you. Thank you. Thank you. Um But as you said, we had some amazing people help us through this journey. I'll let you know about a typical day for us in our life. After our daughter went to the hospital, I would wake up every morning and I try to get to the hospital between eight and 10 because shift change starts at seven and rounds started right around eight and they would come anywhere between 8 to 10. So I wanted to be there for the rounds, my wife at home recovering or she started going back to work at Saint Joe's. So she tried to sneak over when she could, I would then need to be at work by 10 and I work out in Gilbert. So I'd drive back to Gilbert. My wife would then come back to the hospital between 10 and 11. Try to be there throughout the day and then we'd meet for dinner, I'd leave work about seven and then we'd come back after work to spend the rest of the evening till sometimes midnight or one at the hospital and then start the whole day over the next day. So that's all I can say. Like I said, I'm a process guy. Give me in a process, get me in a zone. We had amazing doctors. He was one of our nurses. Uh She was great, gave her bath. That's the one who dressed her up quite a bit. Um But as we went through this journey, we realize that everyone's journey is different and everyone has different things to do. From my perspective. The biggest thing is I just got married a little over a year ago is communication. Communication is key in everything. The biggest obstacle I saw when it came to BPD and doctors and everything is we had our primary nurses, but our doctors and our nurse practitioners, our providers switched so often that I remember one time we get around on Monday and the doctors go, we're gonna gonna kind of rest for now. Let's see what, how she's doing. And the very next day a nurse practitioner came in and goes, let's adjust this, this or this. Like, well, yesterday they said we need to stick with this. She goes and the response go was um I haven't seen the notes. I apologize. I'll look at and kind of make up for it. And I'm like, ok, let's do the communications, let's communicate, nurses, doctors providers, everyone else. And I think that was something I learned and that wasn't the only experience that we had in there talking to some of the other parents. Like, yeah, something similar happened to us as well. And I learned communication is key, not only for a marriage, but when it came to my daughter's providers and things like that. And I don't think, I hope you're not trying to take this as me throwing anyone under the bus because I really, really am not. I share it to hopefully help others when the situation comes that we were in because like I said, we had amazing doctors, amazing nurses. We call them family to this day. That was one of the nurses who gave her a bubble bath. We reach out and we talk to some of our doctors and nurses and nurse practitioners to this day, they are our family. That was her 100 day March. One of the nurses decided to make us think she had a cupcake. Uh something that we found when we did get home is when she went home on oxygen, she had a tank but she had the big oxygen at the house as well. Well, we ran out of oxygen on the tank. So as far as going home, any obstacles we had when we called to get a refill on the tank oxygen. Like, oh, it'll take 3 to 5 days. I'm like, well, she needs this to live. Can we get it any sooner than 3 to 5 days? Well, you have the option for the house, don't you? I guess we'll never leave the house for 3 to 5 days. I guess we're not going to the doctor if she needs to or anything else. So, it literally took 3 to 5 days for us to get the tank oxygen. And so that was our biggest issue with medication because that was our, our daughter's only really big medication was the tank. When we went home. My daughter is a fighter. My wife is a fighter and I'm glad they allowed me to come on for the ride because ultimately, I could not have gone through this journey without them. I like to be a very um in my job, the emotions I try to keep out of it and the numbers and fact based, but this is an exhausting journey. My wife would fall asleep. I would fall asleep. And this is a very emotional journey. And I thank you for being the voice of reason because I would wanna make emotional decisions during this time where the providers and you as the medical professionals helped be the voice of reason. You guys are the reason I have a daughter at home today. And we wanted to say thank you for that. My daughter eventually went home. Peace out big U and I hope this can play. This is the video. Can this? It's coming cold moving in with your parents. This is us leaving the NICU. I sh you have to go. Ok, great. Ok, I wouldn't think so. Bye guys. Bye you. Ok, check. Yeah, keep us updated. That was my daughter when she was born and that was when she left the NICU. She wakes up in the morning, she smiles, she's happy. She goes to bed and she's cranky. We call her baby Hulk. She changes colors. Mhm But this is the difference because of the great work you do and helping people like us to get to that. So we wanted to say thank you again. You guys are fantastic. You guys are wonderful. And if you don't have a y why you do this, please let this be an example of your why? Because you guys are amazing. And we just wanted to say thank you again. Thank you very much. That was wonderful. All right. So we have Miss Andrea White coming to talk about your beautiful baby Soraya who actually is here with us today and grandma and her nurse. Oh, right. OK. Um So just push this button here. Is she waving? OK. So just push this button here and that should. All right. All right, y'all. Well, so this little slide that I, that I gave her was like last minute and I made a cut of one. But I just let her go ahead and use this. So our Nicky journey 348 348 days we spent in the new Year. I did not leave the ***. Everybody didn't know everybody here probably know me cause I slept here. Wash my clothes. Yeah, I ain't go nowhere. But the last she was born February 11th, she was supposed to come May 16th. Um I was in the hospital one month to the day at Saint Girls before I had her. I was convinced, hey, we're gonna be here today. So, but she was £1 4.5 ounces. So this is to show how little she was in teen time. She got intubated like, you know, she was so little. Um And actually the second night of life this girl pulled up brings us out. Yeah, I already buy snatching stuff out and she still snatches stuff to this day. So everything was good. I'm a new mom, you know, a single mom. So I'm going through this journey pretty much alone, you know. Um and then everything like I said was going good. And then the second week of her life, she called infection right here to show you how tiny she was. So compared to my hand, I got a new man. So um but she called an affection in her blood. Um and nobody knew where it came from or anything. It was just like, you know, it was at Saint Joe's a bunch of great nurses and stuff like that, but nobody knew when it just kept growing back, kept growing back and it seemed like forever. And at that point I was stressed out. I'm like, ok. Um, but pretty much the doctors automatically started on antibiotics and everything and got it all situated. This is another picture. Teen tiny. So, um, and I think what happened was, unfortunately, we needed a pick line, but I think that actually came from the pick line so that, you know, became the issue. So that's part of her when she was sick. Um She was, she hit over 300 g in a day. So which they didn't think she was gonna make it, you know. Um And like I said, I was stressed out, I was just like, I didn't know what to do with my mom just like trying to keep me cool. But, you know, everybody knows, we know that I'm chill but that was just like a lot. Um And they also indicated to me that, you know, she had um a PD A. So before all this happened, they were treating her PD A with Tylenol and it was actually helping clothes. But after that, um when she got sick, they decided to stop the treatment. So they said actually they need to, you know, to let it heal the stuff or whatever like that and just let her go through with the sickness. And so when she got that infection, she was on a jet, um, they put her on, um, nitric and everything and her, like her stats and everything was just, it was horrible. Oxygen was like up to almost 100%. So this is another picture that is not doing so well. And that's when I actually got the odor in my hands for the first time. And so she got better right here. Still tt still feisty. Um So after she got Will and Saint Joe's, they tried to, they gave her um a course well, while she was sick, they gave her a course of d and it seems to help. Um And then they want to try to excavate her, but apparently she can't get excavated, but they said her lungs will still not develop enough. Um So, and then her PD A was causing the problem. So that's why we had to come on over here to PC H and I had real big trust issues. I ain't trust nobody. I'm like, look, look, look, look. Um So after that, um she, she started to get better. She got her PT A closed. Um The first week was horrible but horrible. Um But when she got her PD A closed, she started to get better and then she got sick again and when SIA got sick again, um she ended up catching mercy somehow and, you know, with Mesa, anytime you get sick it makes the, the sickness 10 times worse. So she's fighting that with the PD A and everything. Um But we, like I said, we eventually got better and so it was time to try to excavate her again or for the first time. And this was right before she got excavated. Um They gave her a round of steroids and everything like that and this of them extubate her and that's her ex, you know, excavated first time breathing on her own. Um It was a little rough for her at first because she was used to, you know, the breathing, you know, the breathing machine and stuff like that. So, Soraya, you know, she was a real tip and type of card and for people who don't know, see, I learned this to y'all, you know, and I didn't know none of this, but um she was like pretty much her heart was beating fast and she was breathing fast. So they decided to give her another round of steroids. Um And she did pretty good and then once again, there you go, there you go. Um um But then she got sick again. Um And when she got sick again, she just kept getting sick, you know. Um And everybody kept saying, oh, what about a tra and I'm like, show me no tre what I was talking about. Um So the fact that the doctor didn't even want to mention to me because I am like, No, no, no, don't even, like, give her a fighting chance. And at one point I felt like people wasn't giving her a chance and I was suggested like, ok, she gonna need, um, but so because she was actually doing really good, she even skipped steps, you know. Um, but then, like I said, she got sick again, but this is our left. Um, so then, uh, when I started again, the mommy probably made looks. Um But then Soraya end up, oh, she kept going up and she wasn't a py baby. Um And something wasn't sitting right with me, but they was thinking that she can hardly be excavated and she only been, you know, reintubated once. And so once she got, once she got, um when she was excavated, they decided to, you know, say it wasn't working, they tried everything, they tried to put the trunk on her. She wasn't having that, that, that she was too big at the time and she was used to breathing on her home, like with just a little nasal cannula. So it wasn't working out and they end up, you know, reintubated her. Um and one of the doctors who did reintubate her and he, he's, he's a really good doctor, but it took him three tries to reintubate her. So I'm sitting there like that's my baby. Yeah. Yeah. But I didn't want her to get reinstated, you know, but, you know, end up coming out that she was sick and she had pneumonia and nobody knew it came out the next day, um, because she ended up, you know, school started to change colors and then the next day her secretion that night. And so the next day it got real rough. Um, she ended up coding and staff assisting 20 times in two days, she was on 100% oxygen and it was like nowhere to go. So the most I could do was just bad, you know, and, you know, at that, at that point, I was just like, all I can do is trust in God and hope that he trusted the doctors and help them. Um And so we end up getting through that. Um They put her back on nitrate and that, that helped. So see, I knew I had a better slab in this. Ok. Ok. There we go. Um And so after that, you know, she did good. Eventually she got excavated again. Um She was doing quite well and she just couldn't keep, you know, she just kept getting sick, she kept getting sick and we had the doctors all had a discussion and they came together and they agreed that new doctors was coming on that, you know, if her oxygen requirements go above a certain, you know, level again, that reintubation was the only, you know, choice and I'm like my baby get reintubated like, so I'll, I'll give trade before I give her that And so what happened was something happened again, oxygen requirements coming up. And I was like, you know what, I'm gonna give her a trait because I rather her have a tra and not need it than not having a need, you know, so I had to put all everything I felt aside and so she did good. She did good. And I'm thinking like, ok, yeah, finally we're gonna get out here in about 4 to 6 weeks. They saying, like, once we get the church, we good. Well, guess what tr they tell you about that. I'm like, ah, there we go again. So, kept getting sick. But like I said, the merchant, the Mercer is attached. So, finally, you know, we was getting good and down to a certain point like this was six months later, um, when we got the track, like I said, energy too and they end up treating her with different, um, antibiotics and stuff like that, um, and steroids and it seems to help. And so, like I said, we was getting down to a good, good point. It was like, ok, we're gonna try to get her on to, we want to try to get her on to the home event. So we started finally talking about home, you know what I mean? So, I was like, oh, you know, that never even came up, like none of the time I thought we've been here. And so every time we mentioned anything different. It goes tori she wanna act up. So you mentioned home, you mentioned V she just said, so we just stopped saying we stopped talking about it. We whispered about it and everything. So we getting good and she's getting, you know, well, and then all of a sudden here goes something else. The unthinkable happened in the I ain't gonna show you a picture of that because I don't wanna see that but something that normally doesn't happen, she prolapse and if y'all don't know what that is, her butt, her anus, everything came out and it was that, that was pretty. Um So the fact that they had the, they gave her Ativan morphine, none of that stuff works. Um They end up rocking her so I could have paralyzed her to get it back in. And I was determined, I said, but they had nothing else to do. So I was determined that if I got to hold her bunch of shes together to keep that thing in, that's exactly what I wanna do. And everybody know I was squeezing on t, I ain't care what she did because I'm not gonna go through this. We always going through enough. That's her that's still before she got the train. I little happy. So and then we got the train. So she was able to actually, when she did get the trade, I felt like it was the right decision because I was able to do things with my baby for her. I was able to, like, hold her and play with her. You know, some of the therapist was stressing her out but they helped her. They are. Yeah, I see that. Uh, but, uh, you know, it was definitely good and I wish we could have them on the outside. That's how it, um, but yeah, so she was just much happy and much comfortable when she wasn't getting sick. The last time she got sick, um, they end up deciding to give her a round of Toby because they were so against it. But when they gave her that to Mycin, there was two rounds of treatment. It helped, it helped tremendously and she did not get sick again. And so we started talking about to go home again, but we didn't say home. We call the peace part. Everybody knows you cannot stay home because soon as you say home it's something different. So why it's gonna get sick? So we didn't do that. So even the doctors from in the crane that everybody was called it a peace party. Like so y'all made it to the peace party, huh? So, yeah. Um so we finally made it to the peace party. Uh We made it, we left home January 25th. So it's been about, what, eight months now, I think January 25th. Um And now we're home, she's been great. She came back to the hospital one month when she left. Um, exactly one month of the day, but that was that she had some type of stomach bug. So we stayed a couple of days. Um, and then she was fine and she pretty much been home ever since progression. Um, she actually weaned off her event, I mean, not weaned off, she's not off yet, but she weaned down to the fact that, um, one of the doctors, Doctor Whitburn, he was surprised he, he called it the, what do you say? We on the accelerated plan, uh plan or something like that? Because when we came back to him recently, he wasn't expecting us to be aspired, but we kind of let her do what she want to do because she knows she don't. Um And Soraya is now sprinting, she's off the vent unless she sleep. So she's not even really, she don't, she don't have oxygen no more or anything. So she doesn't need none of that. And she's been doing tremendous with her therapies, um, and everything and we still stop by the Nicky from time to time and they go my little baby right there now, say hello. And we want to say thank you to everybody like the journey. It's been long, it's been long it stress but, you know, we made it through about with the good doctor, the grace of God. My mom helped, you know, and now we got good nurses on the outside and everything. So it definitely makes a difference, especially because I got trust issues and she do too so I can do that. But, all right, that's it. Thank you guys. Those are some months she went viral. Kind of the PC H were T Yeah. All right. OK. Thank you, MS Rich. And now we have the Beco family and M le are you gonna come up and help us to transfer slides? All right. So all you gotta do is push the little arrow. Ok. You're not gonna say that. Ok. Hi. So we're the poor family. This is Leila. She is nine. Now. Um she was born at 24 weeks. She weighed £1.06 ounces. She um was on a vent for over 60 days. She had a grade four and a grade two gravely. She had mild cerebral palsy. Um She had a PD a ligated at 18 days. Um she went home aspirating um fluids. So we were always on thickens. Um So to be here today is a big uh I remember the first time I spoke in public about, I was a hot stinking mass. I couldn't get through without crying, shaking, almost wanting to vomit. So I promised it gets better. And the more pe more parents that we can help that are like us because it is very overwhelming. Is it, it will get much better. I mean, you wanna turn that push? Ok. So we, I have a little presentation. I don't know. Can I just click on it? How do I um we do a lot of volunteer work for um March of Dimes and for um a lot of people at ST Joe's. So um uh so we created this video a long time ago but so this is a video of her journey spiel. Not true was of yes and say feels cold that insult sire. And so and these slices want some to, to look and soon so that flyers so start last. So, so really true. Always. You. All right. Well, we can start talking since then. So, um we was nine now. So I would say more of our stuff is more, it's very far from, removed from these ladies experiences. So I, I we did go through a lot when she was there. I had a bunch of bunch of, bunch of hurdles. She liked to excavate herself too. I think she self excavated. No lie 10 times because I kept writing them down. Um We did like they said, 100 and 15 days in the NICU. Um I took a leave of absence from work and spent I was that mom that was there every single day too, but I was there during the day because we have a, we had uh she was nine and eight at the time, an eight year old and I would spend the evenings with her and the days with her because the other one was in school. He, my husband was deployed when we had our first child. So he just thought that this was all like a normal experience. Um, he never was around with our first one. So he's like, oh, that's ok. Um, do you wanna um, you'll tell your dad? Ok, it's been a very, very, very, very long journey. Um I won't say it gets much easier as to where. Um, I don't have to worry if I'm gonna come in tomorrow and she's not gonna be there. Um It's like, what's the next hurdle for us? So about eight months in when you saw her with that feeding tube, um Leila decided that she was just gonna stop eating completely. She was still aspirating. So we still have a lot of lung issues going on. Um So she went from not knowing how to eat, I mean, knowing how to eat, to waking up the next morning and not eating at all and aspi in everything she liked to eat. Um So that was the, the difficult part of our journey is um she's nine now and we just recently um this school actually was in the last school year, got released to have no restrictions like she can have pe she can have recess. She doesn't have to wear a mask this year before it was, we never went to school. And what did you say? What was the role from Doctor Williams that you had to wear a mask. So we just started that and she's doing phenomenal. Um but our journey didn't just end after the NICU. And if we want to talk about um for us anyway, since we're so far removed from the NICU experience is um what could be most bene beneficial to us is probably having that support once we leave, I'm a nurse as well and I could tell you that I didn't know anything about babies when I went home. And I'm like, what do you mean she had 24 hour care? Now, you want me to do this? When am I supposed to sleep? You know, it, it's like very, very, very, very overwhelming. You feel completely isolated, completely alone. Um, you went from having this great family because we have our NICU family. Um, in fact, Leo was the flower girl in her NICU nurse's wedding a year ago. Um, so we have this giant over family, but that family doesn't come home with you. That's the scary part. Um I would say the most helpful part for us now is that, um, Doctor Williams and her team is always available to us. I can't tell you how many times that I've emailed her. Um, and then within 24 hours of less than 24 hours, someone from her team will call us and tell us this is what we can do. Let's try this. I try to do everything to keep her out of the hospital. Um, if we could do it from home, we did it, I would say the best part, she still has a G two because she doesn't like water because, you know, she aspirated since birth. And, um, now that she can have water, she is like, you know, not gonna do that. Um, so eventually, as soon as she can logically realize that she needs to eat and drink, then we should have more hurdles to get over. Um But that's where we're at with that. Um But the great part is like I said, um let me show you this next slide. This is one of my favorites. Oh, there she is. We went through um vital stem therapy. Um That was amazing. I call it shock therapy. Your therapist don't like to call it shock therapy. But um we spent a lot of time here after um A PC H after um the NICU with all of our therapies and, and like this family said prior, if it wasn't for all of you out there and the things that you guys do, our, our child wouldn't be here. And I've always said to you doctor, I can't tell you how many times I've gone to her office, just crying, overwhelmed, crying, not knowing what to do. And I would always say that doctor Williams was the rational one in our relationship. If she would prescribe a bubble, oh, we'd be in it and we would never leave it before COVID. You don't know what quarantine is. We quarantine when we got COVID and then COVID hit and they're like, oh my God, our gonna get COVID and she's gonna die and that's all you could think of. And then she got COVID and we did fine. And we've had COVID twice since then. We're doing fine. I think it's our, just our daily, it just doesn't stop. Nine years later, nine years later, we're still getting through that. We went on our first airplane ride without oxygen. Um, so we can finally do that. Um, and then we're gonna try and go to see her grandmother who lives in altitude and hopefully we don't need oxygen then and then we can completely get rid of oxygen. Hopefully, hopefully. Right. Um Other than that, I mean, like I said, if it wasn't for the team that doctor Williams has and us just being able to, um, call her or email at any time, um, we probably wouldn't be where we're at today. So we're very grateful and we know that our daughter is here because of all of you guys. I just have a quick dad story. Um, and that you said different journeys, different situations, but they're kind of eerily similar. Um, I'm an air traffic controller. She's a nurse. I have no clue. I really, there's a lot of stuff that I don't even remember from the whole like or whatever Paul says I'm good with that. Um, but there's certain things that are just burned into my mind of the morning she was born, I'm playing Xbox with my daughter. It's the weekend she comes down she says I, I'm sick. I don't feel good. I'm really playing Xbox. It's the weekend I need to go to the hospital again. Come on, whatever. But who's gonna take? I've already called my friend. She's coming to get her, we're going to the hospital. All right, let's go. And then it's her hospital that she works at. So they put her in a room. I hear she's coming. Like, who's coming? I, no clue. And they start putting her feet up and doing all this. I'm sitting right there on the couch next to her. No clue what's going on. And I finally asked to go. Is this going down right now? So how comes Leila, um neonatal team comes in? That was the night there was a giant monsoon storm rolling in from the east side of town. They said if we don't get her on the helicopter, they couldn't intubate her if we don't get her on the helicopter. Now, we're gonna have to take her by the ground and she's probably not gonna make it still. I don't know what's going on. Like we just, she's fine. She's sitting right over there. Um, they finally get her in the helicopter, send her over to Saint Joe's. She's taken a, what do you call it? A propofol nap. Um, so I go to the hospital. I remember walking into Saint Joe's into the NICU and one of the nurses goes, are you all right? You look like you're about to pass out. I, I still don't know what's going on right now, but my daughter's here apparently. Um, so from my point of view, from the beginning, it was, well, I don't know what's going on. You just talked to her. Um, but the nurses and doctors were so good about being an advocate and explaining everything to us, regardless of she knew what they were talking about. And I didn't to where again, I don't handle all the things. What do you, what do you think? What do you want to do and let's do that. Um, but everything was explained to us and, you know, I was always looking at like a, I wanna know the process. Is this gonna be all these meds she's gonna be on? Is it gonna be a long term problem? Is it, you know, is she gonna grow out of it? Um, another thing that's burned into my mind is when we went down the hall and we were talking to the neurologist and he said, talked about her brain bleeds and he gave us the option of if she's going to be a burden to your family and you can take her off life support or keep going. Those were the exact words she can have nothing wrong with you, with her or she can be a burden on your family is what they told her. And this was day two and just certain things are burned into my mind. But they were, everyone was so good and like she said, we're still friends to this day with several of the nurses and doctors. Um, but they were so good about explaining to the idiots who don't know what's going on. And we were lucky enough to have, you know, that knowledge. A lot of families aren't and we met so many families with the same situation and our nurse even introduced us to her previous family that had um, a preemie. And then right after Lela went home, we helped out a family afterwards. So it was kind of like a, a forward, you just keep passing it forward in that knowledge of what we went through. But like I said, the team were so good about explaining everything and then we've gone back and forth. Dr Williams knows this, but back and forth on. Well, I don't wanna do that. Let's do that. What's best for. It's like, all right, I usually cave but um, again, it was so nice to have the explanation and the uh the doctors and the nurses be such a great advocate and what was good, what they recommended, what they didn't recommend. So I can't thank you enough for all that. And if I could uh put forth any advice to, like helping the parents. That would be it just to explain everything that, you know, would help whether medical professional or not. It really helped us more me. But, well, it helps me too. I can say I'm a nurse but I don't, I'm not a NICU nurse so I can take care of a pregnant woman. I know nothing about this. So I want you to talk to me like, I don't know what I'm doing because I really don't, I mean, I could probably run a level two in my house now but um nothing more than a level two. and I can do NRP like it. No, everybody's business now. And I'm not afraid of babies, but that was because I was labor delivery nurse prior and then before I had her, you would have a baby coating. I'd be like where is nursery? They need to come right now. I'm like, oh, we can get that fat kid to breathe. No problem. So, you know, I would like you to explain it to me in the terms that I don't know anything either because when it's your own child, you're not, you're not the, I'm not the rational one. She can tell you that I'm not, I wanted a bubble. I wanted to live in it. I didn't want her to go to school. I want her to stay home. Only reason why she's in public school is my husband said he would divorce me if I didn't let her go be around other people. Um but she if I had my choice, she would still be at home with me. But we thank you very much for everything that you guys have all done. Um Thank you very much for that. Wonderful. Now we do know that these slides actually work, right? So we have Mister Patel coming and his beautiful sorry Mr Weaver and his wife, his wife, Miss Patel was not able to be here, but he's going to talk about their beautiful baby girl. A thank you. Awesome. Um Really awesome to follow all the other parents today. Um You know, it's funny the things you don't think of when you're putting these things together and then you hear others kind of explain their journey and their story and it just kind of comes all back. Um You'll see, we don't talk about infections at all. Um but we had tons of infections and like, I it just was not even, you know, as a part of our journey at Saint Joe's, that was over a year ago. So we just didn't even trying to think of everything we went through and hearing your story kind of brought it all back, communication, trust, seeing where you guys are now. Um Just really incredible, so, really appreciate it. Um Also those that know me and my wife are gonna find it funny when I pull up a text from her because she is really the brains of the operation and I am just a manchurian candidate. But, oh, ok. And I did this a lot in our family meetings, but he said at the end, make sure that you tell them. Thank you. And we made lifelong friends and met some amazing people. So I figured I'd start with that and then we can kind of go into it. So, uh, introducing my wife and I um and our three dogs. Um, actually, and I have no, sorry, everyone. So my wife and I delivered or um in June of 2022. 00, wait, I this, there you go in June of 2022. Uh at Saint Joe's. Uh she was 27 weeks old when we delivered her, um a little about a pound and seven ounces. Um She spent over 10 months in the NCU 2.5 of those months was at Saint Joe's and the rest of that time was here at PC H. Um for those of you that don't know, um You know, we did kind of have a pregnancy journey before this that we did lose and you'll see how that kind of plays in to kind of the overall, you know, how we approach things at Saint Joe's and PC H. Um Also, as you can tell my wife and daughter are not here with me today. That's because she got her first gold. So, and I know, I should be upset about that. Uh, but actually, you know, the, the nice thing is we haven't had to go back on settings. We haven't had to really, we're, we're not readmitting. Um, we're handling at home and everything's going really well. So, um, so, yeah, kind of, kind of happy about our first cold, which seems strange with a cold and this is kind of an anecdote. But what that meant is in the last two weeks, we've had one weekend call to our pediatrician, two impromptu visits, had to cancel six therapy sessions. Um My wife is messaging all of our physicians. Um, every specialty um constantly we did an a an additional steroid treatment at one of our p visits. We've gone up on our breathing treatments twice as many a day. Um She's getting better at that. Uh We had two sick parents. Um Hence I'm still wearing a mask just to kinda respect everybody. Um We had one ear infection dermatitis at a track site, uh 10 days of amoxicillin. Now we're doing 10 days of topical antibiotic. Um And then actually before I could update these slides, we're also getting Ciprodex for her tr so some tracheitis going on. So, um yeah, that's kind of just two weeks of our journey at home. I thought it was an interesting anecdote to see all the stuff we kind of went through within a two week period. Um Yeah, and also those that don't know, or haven't taken amoxicillin in a while. It has an adverse effect, which meant lots of dirty diapers more than you can imagine. Uh, so we've had gone through a lot of dirty diapers, but she's doing well. We're still at home. Um, everything's going as good as it could be. So, I shared a few kind of metrics or numbers. Um, but there's a lot that can't be quantified. Um, my wife would have done an amazing job on this. Um You know, the things you feel and I'm sure it's very similar for like other parents and, you know, all situations. But um you know, we were a little guilty. We've been kind of going a little bit easier doing more therapy, treat like in person therapy sessions. We want her to kind of develop and kind of make some wins on some of her developmental delays. Um But we felt guilty because she got sick. We don't know where it happened. None of our family is sick. Um It just happened so we're not sure where it came from. Um kind of lost control. We don't know how to prevent it in the future. Like we don't want her to get sick again. Fortunately, it's not COVID, it's not RSV and it's not the flu. So it's just some other viral cold going around. Um But yeah, we feel out of control. Um Yeah, we don't know how to prevent it. Do we stop therapy is that truly what's good for her? You know, those types of things are coming into question, uh, lost sleep and then the fear, um, are we gonna go back on the progress we've made? Um, you know, are we gonna need to be readmitted? Is it gonna get worse? And, you know, are we gonna lose ar rea, you know, she's doing well at home, but you always feel like you're just a sickness away from her lungs, kinda just for not being able to handle things at home, getting readmitted and then things happen very fast in the NICU. So uh it's definitely still here of ours taking you back to kind of our, our, our journey. Um like I mentioned, we spend about 2.5 months at Saint Joe's. Um honestly, if you were to ask me when we received our BPD diagnosis, I have no idea. My wife says it's somewhere around 37 weeks. I, I think that was just because she was still in support at that time. I don't know if we ever actually had that conversation. Um I could tell you all the events carry diagnosis of her getting pie, which is like um emphysema from, I think it's from some of the support she was on and just it, you know, it kind of was the initial thing, totally forgot we had all kinds of infections during this whole time. So, um I really look at our time at Joe's as like a emergency room because it felt like they were there to stabilize her. Um And then in hindsight, looking at our move to PC H, I think that's where it truly became less about her getting to a point where we felt comfortable that it's a question of when we're going home rather than if and then once we got to PC H, it became more of how are we getting home, you know, how long are we gonna be in here? Um Yeah, we try to stay optimistic. Um Again, I don't exactly remember BPD diagnosis. Um We knew a lot changed at that moment. Um We knew time we'd be here a lot longer as well. Um At home we live in San Tan Valley. So we relocated closer. Um Work really sucked focusing on anything outside of like what you had going on at the hospital was a near impossible. Um Mental, emotional, physical, everything suffered. Um Our own personal health just kind of took a huge hit. Our dogs were neglected. They started doing wild stuff. I don't even want to tell you guys but it wasn't good. Uh The house fell apart. Um Not literally but you know, classic stuff of you not being at home started to happen. Um Yeah, and it was really hard on my entire family. Um and my wife's entire family, our entire family. Um they jumped in to help take care of the house, take care of the dogs, they didn't get to see our daughter that much. Um, yeah, and this went on for 10 months. So it was really just kind of hard. Um, yeah, like I mentioned, uh, we did suffer a lot so kind of our trust and kind of the whole system and the whole process was already a little. Um, I guess not, not there. Um, you know, during our first pregnancy we knew something was wrong. We tried to articulate that to some of the physicians that were taking care of us. Um Even suggesting things like should we be taking baby aspirin because my wife was getting like the blurry vision, uh high blood pressure stuff. So, um so, you know, it was hard. Uh second time around ar we made it two weeks longer and that was just enough time to, to be viable. So, um so yeah, it was hard. Um definitely lost trust in the system. That's fine. Again in the NICU we really struggled with trust. Um I would say that I'm really impressed with my wife and, and myself, but really my wife on advocating for our daughter. Um I don't know that it was something that she thought she had in her and I think I saw it but it's something that really came out during this whole process. Um kind of finding a voice and being able to say what you think is right? I, I actually still remember one time she taught to me quite just recently. It's probably come up a few times but she didn't realize she could say no to things to doctors. She didn't realize she could, like, tell them what she felt or like what she wanted or, you know, she really didn't realize that that was a part of, kind of this whole experience and, you know, through this whole process and this whole journey, she really did find that voice and, you know, feels much more comfortable in expressing when she doesn't think something is, um, you know, going the direction that she sees it going when we were at the most peace. Um, it's called at nights that we were able to sleep at home and, uh, not worry about rushing to the hospital. Um, you know, there was a lot of clarity, there was consistency, all of the disciplines, all the different specialties were essentially in alignment with care. I mean, and that goes from the new neo pulmonology. Um, even palliative, everybody was on the same page in those moments where we really felt, you know, at peace like we could rest. Um, and also the assigned nurse we knew, we knew who they were, we knew, they knew our daughter well. Um, it just made a huge difference having someone there that, you know, knows your daughter. Um, it, it really plays into it. So those were the nights we felt the most comfortable. Um, it was a bait and switch a couple times, you felt like it was all good and, you know, something happens still so you can't avoid it. Um Biggest thing for us was lack of trust. It was just hard. Um You know, you guys had our daughter, we couldn't do anything about it. You know, you guys literally had our daughter. Um things that really helped was consistency, you know, anecdotally. Um In our, in our time, we were one of those parents that were not up for a trick. We didn't want to have the conversation, we didn't think she needed it. She went eight weeks extubated at peace. Uh Sorry, at, at Joe's, we came here to try Nava see just if we could like optimize her support. Um Yeah, and no one even talks about BPD like we just didn't happen until we were at PC CH and then we were suddenly on the BPD team. Um But yeah, in our time at PC H, we trialed exhibition, I think three times. Um You know, and along the way, we were coached into tr the entire time and, you know, it's, it's difficult knowing that you all can see where this is going and there's nothing you can do to make this move it along a little bit faster and you see our daughter and what she could be doing, like we totally get it now, but it's almost like something that I heard it from some of the other families you just, you have to realize like you have to do everything that you feel is best and then like fully optimized in order to feel like you can make that decision. Um One of our attempts, I don't, I think they had the wrong size flexi trunk and like the wrong hat and it was just like a complete mess. Um just purely from an equipment standpoint. And, you know, after having tried that, we're like, well, that was a complete mess. Like why, you know, why did we even try that? Um Second time, I think we, we kind of went in with a game plan. Um But, you know, again, it wasn't consistent. The day of things changed a little bit. We didn't go to flexi, we went to Grand Canyon. There was a couple of different things that just like switched that, that day that we were trialing excavation. And uh you know, that too made us feel like we didn't give it our best shot. Um So it wasn't until we had a family conference. We nailed down what it meant to have like the best attempt, what steroids we were gonna use everything. We, we locked it in and we said this is what we're gonna do day. We had nurses, we know we had doctors who were in the room during the family meeting. It was literally exactly what we talked about and it went really well. She made it three days and we don't know whether she would have if it would have been successful or not. But in those three days we watched everything, we stayed there all night. Um, we didn't leave. It was either my wife or myself that was in that room. And, uh, in that three days, we, we literally watched everything. We saw everything that went on. We knew everyone was like giving 100%. Um, again, this goes back to, um, but what that did is seeing everybody give, do exactly what we said we were gonna do give the best attempt possible. Um We were able to look at our daughter and see that, you know, she was struggling, it was gonna be a fight for her. That's, that's what it came down to and, you know, increased heart rate, um breathing, you know, all that stuff like you could just see it and it wasn't coming from the care team, wasn't coming from the nurses, it wasn't coming from anybody except my wife and I were able to sit down and look at her and say this is gonna be a long road if we go this way. Um Yeah, so it was really difficult decision. It wasn't easy. Um Again, we appreciate everything you all did to help us along that path. Um It's just something that we had to, we had to keep to that conclusion. I'm sorry ourselves. So I know it's difficult to watch sometimes but getting home um you know, eventually we did go the trade route. We were there. Um, you know, after weaning medication during the whole palliative thing, um, you know, we eventually got to, to graduation and we, we made it home. Um We haven't been to the hospital since so everything's been going really well. Um Some of the struggles we have billing and insurance. I might stop by today after this to go see if I can figure anything out. Um We're still getting bills collection is really confusing. Um I don't know what to do, but we'll, we'll figure it out. Um quickly within the first week we learned plugs happen. HME is totally dry, dry out. Our daughter um did not realize that going in. We had one or two emergent uh trait changes, um which the first time we kind of did a couple of circles but found everything we needed and, and we're able to, to change it for her. We've learned to do Saline drops. We've learned um to adjust our medication and use a nebulizer rather than the inhaler. Um It just seems to add a little bit of moisture and help things out. Uh developmental delays, they're, they're gonna be there. Um But in person therapy sessions have really helped um it took us five months to find a good nurse. Uh We live again in Santan Valley, so it's not necessarily in the heart of Phoenix. Um So not to say that there's slim pickings. But, uh, it took a lot of pushing to get a nurse that could actually, um, we found a night nurse pretty, pretty early on. But, uh, our day nurse, we kind of jumped around until we found someone who really kind of worked with our family. Well, um, other things, DME companies don't ever seem to get orders. Right. So, um, we change vendors. It still happens. We just always on the phone with them. We have a ton of appointments. Um, nursing really helps out having that reliable nurse. Um We did have kind of event failure. Luckily we had a backup cords everywhere. You know, you just need time to organize. Um, and then getting the right medication. Uh It's funny when we're, you know, inpatient kind of everything gets worked out, but then as you leave, it kind of changes again and you have to go through the whole step edits and, you know, prior off process of getting levalbuterol instead of albuterol. Um, just switching everything is just, you know, you go through the whole process again but jumping on the phone, communicating with the doctors, um to get to that point, you know, just keep going until it's resolved. See anything else. Yeah. Um All challenges aside being home is awesome. It's really amazing. Um, wouldn't have done it any differently, you know, we needed to come to that conclusion ourselves. Get a trade, having done it. Now, seeing her at home seeing her grow, seeing her develop um totally worth it. It was you know, the right decision and it it it feels right. Um And being home is amazing. We were home for Mother's Day, father's day, her birthday. Um my birthday we got my wife's birthday coming up, we got the holidays. It's gonna be awesome being home this year. So really looking forward to that um and just seeing her learn and grow. So again, thank you all. Sorry that it's just me today. My wife couldn't be here in a so thank you. Appreciate it. Ok, that was an amazing parent panel. Thank all of you parents so much for sharing. I think it was really enlightening for the medical team and invigorating to help us be a better medical team to take care of these patients with BT D. Um I do uh well, let's open up to um questions online or in the audience. Do we have any questions for the parent, the parent panel? Mhm. I think one of the takeaways that I saw was just good communication, communication between the physician, medical team and the family and um also communication between the medical team themselves as well. So that seems like a really help. One question that I have is I know somebody mentioned meeting with other families prior to did all of you find or would have appreciated meeting with other families during your journey in the hospital. So I was in when I come to the podium, I was introduced to my Nikki nurse. The one that Leila was her flower girl in her wedding. I was introduced to her previous primary, um, which is a set of twins that were 24 weeks. Um, the, oh, sorry, which was a set of twins that were 24 weeks. Her mom came and saw me, my NICU nurse asked me, would you like to talk to somebody who's been where you're at? And I'm like, ok, sure. I mean, I was at a low, low point where we didn't know what was happening and she came and spoke to us and we are, um, lifelong friends. Now. Um, she helped me at a point where I thought that there was no hope that we, uh, we weren't gonna make it through the history. And then after we left the NICU, um, that nurse asked me to come back and speak to a family who, um, is like your daughter went home on a tr um, he was born at like 23 and five. and he's had a lot of issues too as well, but I went and visited them and it's not just me telling my story because I still remember hearing this lady tell me about her kid when mine's in the NICU, her daughters. And I'm like, I don't really care about your child. I want to know if mine's gonna be ok, not yours. And it's just, just being there and telling them that there's hope, having someone come and tell you there's hope at Saint Joe's. When we first got there, there was a wall of pictures and they took those down and I remember my husband coming back to the hospital to tell me that, oh, I've seen pictures of 24 week girl. So she's gonna be fine. And then they took it down and said it was hi a and like that was our hope. I mean, if you don't know it, like you're a parent of a preemie or a micro preemie and then no one tells you and you don't know these other stories because of Hipaa. Um, then how do you know that your daughter's gonna, your child's gonna make it through? So I think sharing stories and getting families involved, you just got to get the right families involved but sharing stories. It, it's very, very helpful for, it was helpful for us. Um, my husband has another dad to talk to because dad see it differently. He can share his story with him. And, um, it's Josh and the other father, Nelly's husband, Eric. See, um, and we do March of Dimes swap with each other every single year. That's one time we all get together is for the March of Dimes walk every year and that's when we see each other. So it's, it has been having families come in and help us has been very helpful. Thank you, Pam. Do you have any questions on the, on the chat? I have, I do have one more question. Yes, I have. I have two questions. Um So one is more specific, I think, you know, there's been at least two of which, um then we talked about, um, apprehension about, made, followed by my group with a PF I'd love to hear some more detail. There are many specific things about break up that um that people that have. Sure. Um So the question from the audience here is what is the hesitancy that parents um have with uh tracheoscopy? Does anybody want to come on up? Yeah, we'd love to have MS White answer that thank you very much. So for me, my hesitancy was, I feel like they wasn't giving my baby a chance. I felt like she didn't need it. It wasn't that I was scared of anything even though I wasn't really that familiar. I only knew that adults had it, but when they asked my baby, I was like, that's fine. Yeah. Yeah. Yeah. But I wanted to let my see what my baby can do versus just training her. So it wasn't for me that it was a scary thing. It was just, it was the unknown and not like not giving her a by chance and she got some piercing eyes. She'll look at you like, so you, you know what I'm saying? So I didn't want to just do that and I felt bad. I have to pray about it and all the other things and everybody in here who witnessed us up in here, they know like they, no, I was like, nope, nope. No. And then I've had people talk to me like, what are you scared? I'm like, I'm not scared. It's just, I need her to see what she can do before. I just track her because sometimes tracking up a lot of other parents that I've seen in there, they felt like they shouldn't track that baby. But it also was a different situation. You know, my baby is not like everybody else baby. So for me that's, it's just I want her to get a chance. It wasn't that I was scared. It's just I need her to get a chance. Um I did feel like once I got it though, she kept getting trat I'm like, oh, I should have did the school stuff, but in reality she needed it, you know. So and uh she's gonna be off of it, I think pretty soon follow up question to that. So I'm a problem that I care. So what would you obviously, we, we, we try our best to put way what? Just like it, we also in a way that we don't take that life that the outpatient, we take care of these patients and we know that's all, all even now in retrospect or now if the parents is in a separate situation like you, what advice anyone of you would give it to them is which um which kind of help that through this? Sometimes we feel that because we have seen these journeys for a long time in doing this for 20 years that sometimes we feel that people have done a little sooner, which obviously is not doing it. We could have all patient with that. So for all of you, if a parent is in a similar situation, what would you tell them or will you do exactly the same what you've done? Pay attention to your child. I mean, some, some people don't have the luxury to be there all day, every day. So you don't know but pay attention to your child like me, I was a personal stalker so I knew, you know what I mean? And I did my own research. I heard y'all say y'all might not know, but I was sitting in that room all day. I, you better believe I looked it up. So pay attention to your child. You know, like I said, some kids might need it to be some might not. So like I said, my situation is definitely different, you know, that's really good. Yeah, I felt like when we need it. Yeah, on screen. Thank you. Um Was really, so when we came to PC H, we didn't um we had a conference at Saint Joe's and we said we're not going there for a drink like that. That's not something we want to talk about right now. Like that's, that's not what we're going there for. We're going to try Nava. We're gonna optimize things, we're gonna, you know, she's gonna pull through and she, again, she did really well. Um, I think pretty much the week that we got here, all that went out, Trey became kind of the conversation and they not that it was pushed on us again. I, I totally understand where you guys are coming from, having seen it trying to get it done sooner is obviously beneficial. Developmentally. Um I had to read studies. I think Doctor Griffiths shared a bunch of studies with me that I could read to kind of understand the long term effects going with the trigger without, you know, in everything developmental ways, all of it like real hardcore science stuff. Um We had a, we had to give it an optimal attempt. I don't know that anything that could have been done differently would have changed that. Um I feel like my, my wife and I were, we wouldn't have done it any differently. Um, maybe second attempt if we had kind of had that family conference and really aligned on what it is we were gonna do. Maybe we would have come to the decision a month or two sooner. But um I don't know. It's Yeah, sorry. I think what you're saying is that they have to go through that process for them. Feel that what they did for fun. Correct. Go through that and they may you regret it. Yeah. But, yeah. And I mean, let's, it's a, it's a long term investment. Like you're, it's not just, I mean, we're still going through it. Right. Like, you know, there, there's getting home and there's the benefit of getting home. But then there's also like how different your life is gonna be once you're home for a year or two, hopefully. I mean, we're still in it. So, um, so it's different. I mean, you want to make sure that you're trying everything you're giving, you know, your child, the best attempt possible to see her pull through. Um, and this is our first daughter, um, our first child and, uh, we didn't know anything else. We saw her struggling when she was on the other forms of ventilation without the tr um, but until you see her like in a good state, like that seems normal. And so you, you're looking at that and you're like, everything's fine, she's gonna pull through, you know. Um, yeah, I don't know. It's unfortunate. I wish there was a better answer. But yeah, it's something that almost you have to come to come to yourself. Um, but it is a long term investment as far as apprehensions go. Um, also just physically you're, oh, my wife was very worried about like long term what it's gonna look like how is she gonna be different? Um yeah, there's a lot to it but we have a fighting chance to get our babies out of it too. You know what I mean? Because they're so little. It's like like I know she ain't gonna have that thing but we need to let out like, you know, so and she's showing us she's approving and she's, you know, progressing and stuff like that. So it's just like say giving your baby a fighting chance, seeing it through making sure that's the right decision for you and your family because at one point we thought she was gonna be able to get out and like she was, she skipped one step and went to CPAP. So, you know, I mean, it just, it just depends on your family and, you know, because I didn't know anything either. This is my first baby. I'm a single parent going through. It is definitely challenging. So I have to make the right decision and make sure I don't feel horrible about it, you know, because if I would have strike, I was off top, I would have felt horrible. So I was confident with the decision that I made. Yeah, I couldn't imagine it, done it as like a single parent either because like just that's all on you essentially that decision. Um You know, uh being, you know, my wife and I having talked about this a lot, like we weren't always on the same page either. So there's also just like that internal, um, you know, family dynamic of like, trying to work through, like, you know, even I would ask like, what, what do we need to see in order to, like, make this decision? Um, because my, my wife was more apprehensive than I was because I, again, I'm, I read some studies and I can be convinced. Um, you know, but there's the other piece where, you know, we both have to agree. It's not just one. So I have not, I don't want, I don't wanna take this as in depth. I it's not the question because we are 100% by who gets along, right? So I just was trying to get that you want to develop and what is the best way to reach that decision in optimum time? Yeah. So that is that the parents are also agree and you also can get a bit. Yeah. Yeah. Yeah. Yeah. You don't want to have your kid be behind. So because also I was like, if she get reintubated ain't no way they're gonna have to keep her on drugs 24 hours cause she gonna snatch everything out. Everybody know her. She's feisty. It wasn't gonna work and I didn't want her to keep being behind too. So I was like, I will take her before I read. It does not, it's not an option. You know what I mean? Because you don't want to she was probably like eight months, I think. You know. So at that point it was like, ok, something does have to be done. Yeah. And we needed a magic week where everything was going exactly as planned and then for us to see and judge how she was actually doing and that was what kind of settled in finally. Thank you. It sounds like what really came out of that is that the family don't have to work through a process and until that happens it, I think it would be difficult to um plan for that procedure. So, thank you. Those were very insightful, um insightful uh answers. Um Did you have a second question? Um My second question was gonna be here. This is a more general for all the family sounded like. Um just about everybody struggle with the condition at home or even in those cases where being at home, you know, on that found the take positive. And I'm wondering what we could do on the NICU side to help ease the transition. Absolutely. On our family. Would you like to tackle that question? Yeah. OK. Probably gonna be down with a little bit of humor here. I take it, I don't know. Ok. So, um I would say the transition was smoother. On our end, we had, like I said, we had amazing nurses. Uh One of our nurses helped set up where we, our daughter had Neo Kate coming home and she helped set up where we got like a month's worth of neo cake for free, working with the dietitian or whoever it was. So she set up the food that we didn't have to worry about for a month, which is now long gone because our baby eats a lot. Um, setting up with the oxygen. I remember our nurse actually called the oxygen people in. You're gonna go over this, you're gonna take this. If you need something, you're gonna dial this number, you're gonna talk to this. So when we had the oxygen question, we knew where to go to find the answer, even though we might not have known per se what to do, but we knew where to go to find the answer. Uh to this day. If we have questions, we reach out to our nurses and my wife text them. Hey, we have a question regarding this. What do you think should happen for me? And it goes back to the trust issue. The nurses helped with the transition going home because we trusted them and we trust them to this day, our primary nurses, they knew us, they answered questions that we had the rough conversations with them and they helped the transition going home. And to be honest, they're still helping with our transition going home. That would be my answer. Everybody else is gonna take on a transition question. OK, wonderful. Now, would you like to come on up? Uh I would say like he, he was saying that your nurses are the who, who else. But um in, in some ways, having someone like a support group or someone you can run a question by um, did your child do this or what happens when you do this? And it's all fun and, well, but when we are sent home with a child that's on an apnea, monitor, a pulse. So a feeding tube oxygen and you have all this stuff, you're just completely overwhelmed. So having somebody to support whether it's the case manager before you go home to set you up with like, ok, give you a list of people who you can call that. It can be helpful or hey, here's the resources telling parents to get into support groups because really, honestly, what helped me a lot was I would just watch this Facebook feed of these micro preemies and going through all this. I'm like, oh, ok, I didn't get on there but I would listen and see, ok, this, this is happening to them too and that's the hard part is that you just because you're in your own little bubble. Everybody thinks it's just happening here but it's not. But this is something that's common and like we all, we all have to accept this is my, not what we wanted for our child, but this is our new normal for us and having the support to go through it. This one is that the photo wall back, Saint Joe's, the photo wall is back at Saint Joe's so wonderful. And then, and the other comes from Noel and she says, well, ach may be discharged if you don't have the neonatal transition that follows up and follow the babies after the discharge. Yeah. Right. So there um we have a fetal care network at PC H and it's, it's very, very comprehensive. It includes um the neonatologist. It includes prenatal consults. It includes our um after a developmental clinic called the next clinic, which we follow typically babies there from um the time they go home until about three years of age. And um within that, we do have a T care nurse that works within that clinic to help with complex care, making sure that you need to, if you have any clinic needs or just really any need at all, they'll be able to help you with that. So thank you for, for mentioning that in a while. Um I think we are now towards the end of our time. And so I really would like to thank the parent panel that was very, very invigorating for the medical team to hear your stories and, and, and I think that this really will help us um on that our medical team with our, with our BPD babies. Um I think Doctor Griffiths has some, has some um gifts for you all, but thank you so much for coming in and getting the sliding together and it over to you. All right. So with the Q and A. So, uh just the last thing I wanna mention is that everyone who registered will get an online survey to complete and you will receive ac me request form. So make sure you fill that out either in person or online. If you're here, you can fill it out now and give it to Jamie in the back And, and then lastly, uh we have a program slide. You don't need to see that. Um But most of all, I just want to thank everyone for being here and we did have a sponsor who helped to provide some of our meals and share some information about Cacan today. And then also we wanna thank all the other speakers that um gave us some of their time today and thank you to all your parents for coming. It was really amazing. Ok.
