Celebrating Jaylee

Christiana Whallon is the mother of three, two heart-healthy sons and Jaylee who was born with hypoplastic left heart syndrome and an intact atrial septum. She had the Norwood procedure at three days of age. 

She went into heart failure, which prevented her from being a candidate for the 2nd open-heart surgery, the bi-directional Glenn. Jaylee was listed for a heart transplant at 3 months of age and sadly she passed away at 4 months and 9 days of age.

Today Michael and Christiana talk about how her family continues to celebrate Jaylee.

Transcript

spk_1:   0:09
Welcome. Hard to hurt Michael.

spk_2:   0:11
I am your host, Michael. Even in this our second season, our theme is a celebration of life. Today's episode is called Celebrating J. Lee. On with us today is Christiana Whelan, mother of three to heart healthy sons, and J. Lee, who was born with hyper plastic left heart syndrome and an intact atrial septum. She had the Norwood procedure of three days of age. She went into heart failure, which prevented her from being candidate for the second open heart surgery. The bi directional Glenn J. Lee was listed for a heart transplant. It three months of age, and sadly, she passed away. Four months and nine days. Cristiano, welcome to heart to heart with Michael.

spk_0:   0:46
Thank you so much for having me here.

spk_2:   0:49
Not all of our listeners know exactly what hypoplastic left heart syndrome is. If you can take a couple of minutes and explain it, that would be very enlightening.

spk_0:   0:57
Yes, O. J. Lee had, um, hypoplastic left heart syndrome. Sometimes you'll see it referred to as H a late just, um And essentially, what it means is she was missing the left ventricle in her heart. Um, so obviously left ventricle is imperative. It's not one of those things that was going to correct itself, um, or grow back or anything like that. Um, she needed surgery in order to survive. So, as you mentioned, um, she also had the intact atrial septum and needed immediate intervention at birth to open that up and then had her first surgery at at three days old.

spk_2:   1:37
Tell me about her life.

spk_0:   1:38
J. Lee spent most of her life in the hospital. Thankfully, we were able to bring her home a couple different times. Um, she was home once for just a couple of days and then, um, longest period of time. She was home for one week. Most of her life was in the hospital. And we just worked around that we wanted to spend as much time together as possible, so we would just hang out in her room with her. Um, our two year old was with us and we would watch movies together, watch football together. It was football season. When she was with us. You watch football together, we'd read books and then when she was home, we just wanted toe do things as normally as possible. which was hard because we had to keep away from people. And she was on oxygen and she had a G tube. But we were able to go on a couple of walks. Is a family on? Um, yeah. So it was just really important us to be together as much as possible.

spk_2:   2:38
What's that? Like? She's in the hospital. You have other kids. How do you have a normal routine like that? Includes being home when you need to bay and being in house. But how does that work?

spk_0:   2:49
Thankfully, we had a lot of support. My family was amazing. Both our families were amazing. But my parents got us all apartment right by the hospital, and my parents and my husband and my son and I all stayed there. And so one of us was always with daily, and one of us was always with easy kill our oldest son. And we would just just do everything we could do to to make it work. Um, and it wasn't so It definitely wasn't a relaxing time, and it wasn't a time where we got much sleep, but, um, you know, our kids are a priority, and we just made it work.

spk_2:   3:31
No, you're waiting for a heart. What are the odds? What are the chance of getting a heart for someone? That's more not that young.

spk_0:   3:39
We were never given percentages. Her surgeon would always say, You're either zero or 100%. So we never got a percentage. I I didn't know that there is not a lot of donor heart for a baby her size. Um, but the team always remained hopeful, and so we always stayed really hopeful. And, um, I think at that point, we just expected her to get a heart. And we just prepared, um, and trained ourselves to know how to take care of her once she got her heart, never really letting ourselves think about the fact that she might not get one in time.

spk_2:   4:17
What kind of expectations did you have?

spk_0:   4:20
This was something we had not prepared ourselves for. Um, during my pregnancy, I researched and researched all about her condition and the typical three stage surgery. But we had not been prepared for the transplant. The biggest thing that took me off guard was the rigorous protocol they have. And so we had to meet with many different members of a team including a psychologist, a social worker, Many doctors because they wanted to make sure that, um, if Daily was to get this precious gift, um, of a donor heart, that our family would be able to take care of her and that, um, that we were qualified to take care of her. And so I really had not expected that. Um, and it was several days of them meeting with us and doing paperwork and in training before we were even approved for her to be on the transplant list.

spk_2:   5:17
You know, that was my next question. Does that actually affect your ability to to receive the heart? I mean, do they have to prove the family psychologically, that they have to determine that this family can take care of the heart before they'll even say yes,

spk_0:   5:31
Yes, yes. But he was not even listed until they went before. I don't know if it's a board or committee, but they had this big meeting, and then someone came in and let us know she had been approved and she was going to be less dead.

spk_2:   5:47
It's interesting because I know this from the other side When my daughter died, we donated okay. It always seems like such a happy arrangement because you know, somebody who has. Somebody needs it and it works out. And I think also from other families. I've known who were recipients where it didn't go well for them. People go into this thinking well, it's like it's like a car. It's like switching parts. And I've heard this from other people. I'm not. This isn't my words and you know, we'll just go have it done. It'll be over. Apparently, it's a lot more complicated than that. And when we were talking about that with my daughter, the doctor said, a transplanted heart. As good as it is, it's still a diseased heart. What you're essentially doing is you're trading up. Yeah, you have to something less life threatening. While that's going on, she's only a few months old. How do you handle that? What? What's going on in your head during those weeks?

spk_0:   6:45
I think we just wanted her to be okay. And we were going to do anything it took to make her okay. And, you know, we realized that like you signed a donor heart is a diseased heart, and she would probably if she were to survive. She would need numerous heart transplants during her life. Um, but we wanted as much time with her as possible, and we were prepared to live that lifestyle. You know, the the lifestyle she would have needed to be on multiple medications a day for the rest of her life. There are certain things she would need to avoid. We would obviously have to keep her away from germs and on our life would have looked very different. But she you know, you love your kids and you'll do anything for them.

spk_3:   7:29
And we were We were prepared for that. That was just where we were at way. Just wanted to move forward Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients. Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes amazon dot com Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects join music home tonight forever. You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com. Now back to our program,

spk_2:   8:34
Christiana and our first segment you told us about JD's heart defect. Did you find out about that? Neutral?

spk_0:   8:40
Yes, we did. Home we did. It was at about 24 weeks. I had an ultrasound of fetal ultrasounds, and that's a day I'll never forget. The doctor, um, turning off the ultra um, sound machine and the expression on his face and, um, him telling me that there was something very wrong with the baby's heart.

spk_4:   9:05
And, you know,

spk_0:   9:06
in that moment I didn't know what that meant. I didn't know if that meant she was going to survive the pregnancy. I didn't know if that meant she had a tiny hole in her heart. I had never heard of hypoplastic left heart syndrome before. So on he was a very kind, compassionate doctor. I'm forever grateful to him for for catching the defect and also for the compassion he showed us. And, um so after he gave me the news, he, um, gave me time to call my husband and my husband came over from work, and then he sat down and met with us. And, um, basically, he wanted to give us some options, but tow us even from the very beginning, there is never options. We were gonna fight for daily.

spk_2:   9:54
I think in that sense, you're very lucky because most doctors who do the ultrasounds are gynecologists. They're not heart specialists. Unless there's reason t be, they're nerds. If you have a child after a heart child and you'll get, you'll get that. And you'll also get a better level of of, ah, vision. So all we saw was four chambers and beating, and that was enough. In the end, we got the all clear. We had no time to prepare what was on arrival here. You are. So you're lucky in the sense that you had the time. Did you use it? Well, did you research and get ready and learn?

spk_0:   10:29
Oh, yeah. Well, I'm definitely a researcher, and so I think I spent every free moment I could reading things. I'm joining support groups, joining online support groups and just trying to get my hands on anything. Um, I could so that we could prepare and connected with many other families who had Children with hypoplastic left heart syndrome. Um, that was a huge comfort to me because I would see these Children who were 345 even even older. And they were doing well. And so I thought, If they're doing okay, my baby might be okay. So I spent a lot of time with those moms.

spk_2:   11:10
I think another thing that makes you lucky is every time a baby is born with a heart defect, it's always better than it was a few years before. Remember our pediatrician? The first thing she said when we told her it was a heart defect, She said, Well, you're lucky. It's now or not 20 years ago, and now it's 20 years later. So I'm thinking, you know, you're in a much better situation because even the technology's improved so much.

spk_0:   11:33
Guess? Absolutely, absolutely. We were told the same thing that at, um, you know, 30 years ago there was no babies that would survive with Egil eight just and so we were in a much better place.

spk_2:   11:46
Well, I remember even 20 years ago I met somebody here where I live, and she was explaining to me what HHS was, and she said, It's just a death sentence and wait it out because that's all they had to tell her. Yeah,

spk_0:   11:57
yeah, yeah,

spk_2:   11:59
but But you know what? Let's talk of happier things. Let's talk about Daly's first. Some of the things that you saw for the first time that made her smile that made you smile. Let's hear about that.

spk_0:   12:09
Yeah. So I was trying to recall the first time she smiled and she spent a lot of her life sedated and intubated. And so it's hard to recall her first real smile. One that wasn't all the drugs she was on, to be honest, um, but she had a beautiful smile. And, um, she was she would light up when we walked in to her room, and she loves she had a mobile, one of those spinning mobiles, and she would just look at it and, um, have a huge smile under face. So she definitely had happy moments. Um, some other big first where the first time the doctor let me try to nurse her because she had been to fed. Um, and I wasn't really able to do that more than a couple times, so that was very special. And the first time we were able to take her outside the first time you're able to go on a walk as a family, Those were big moments for us. And once I'm so thankful for,

spk_2:   13:08
it's a beautiful moments and they're really very nice memories, Remember?

spk_0:   13:12
Exactly, exactly. So I'm thankful our son was on Lee to at the time, but he still remembers those moments with this sissy. He will talk about specific moments with her. Yeah,

spk_2:   13:26
all right, then let's go in the same vein or did some your favorite memories.

spk_0:   13:31
Like I said, I think the walks were really special today. Earlier today I was watching my two boys taking a nap, and I was thinking about when we brought daily home from the hospital. She and our, um, older son, Ezekiel, were able to take naps together. Of course, I'll be right there with them in between Them are next to them, but there was something so normal that they weren't able to do in the hospital together, so I was really special. Just seeing them cuddled up together. Um, and I think other memories were just being with her in the hospital, being able to hold her. Um, And then on Fourth of July, we were we were in the nick. You and I was able to sit and hold her, and we were able to watch the fireworks together. And I remember thinking, Oh, this, you know, this will be the only time will have to be in the hospital. Hopefully, next year will be home for Fourth of July. And we can be together as a family watching fireworks somewhere, you know, somewhere much more beautiful. But I'm just so thankful for that time with her. Um, because it was the only holiday we got to spend together as a family.

spk_2:   14:41
You know, I think sometimes it's those idyllic moments that seems so normal to everybody else that he may not even notice them. Yes, but we have been in these positions learn how to recognize the beauty in the very, very tiny things that happened.

spk_0:   14:56
Think exactly That's so true.

spk_2:   15:00
Well, it's very sweet, and I feel as if I can see those moments I can see those things happening because I like every other parent, you know when they happen and you're there, it's just so tender and it's those moments that stay with you forever.

spk_0:   15:13
Yes, yes, those are the moments that matter.

spk_2:   15:17
So tell me how the rest of the family pitched in and specifically want to hear about your parents, everybody's lives being thrown out of whack and how you had to draw in so many people to help just to keep things moving. Tell me about about that part.

spk_0:   15:31
Yes, so thankfully were so bossed by our family stepping up. And like I said, my parents were able to get an apartment right by the hospital and within walking distance. And so between my husband and myself and my parents, we would just be going back and forth, and, um, someone would be with daily playing with her reading to her or praying for her, whatever it would be. And then some of the others of us would be, with use equal trying to keep his life as normal as possible in this little apartment by the hospital. And, um, we just did everything we had to do because that's what you do as a family, and my parents did way more than they needed Teoh. But, um, we're just We're so grateful. And, um, there are little special memories together. Um, at the hospital, we were able tohave my grandfather. So Jay Lee, his great grandfather come visit. Um, and we have pictures of them together, which was just so special. And, um, other family members my husband's family would pitch in, and some of his sisters would stay with daily to give us a date night or to give us a night to catch up on a little bit of sleep his parents was while my brother would would come by. So it was a family offer, you know, And you really learn when you're going through. This is a family. That family is all that matters, and you'll do whatever it takes to make it through a tough time.

spk_2:   17:04
Do this widen out. Did you did your friends get involved? You mentioned praying for her does. Was there a wider group of people who were helping out on on any level on that level? Maybe springing food? Me?

spk_0:   17:14
Absolutely. We had so many friends that we're doing meals helping out with our older son. Um, lots of prayer chains, Um, you know, friends that were house sitting for us or, um, you know, checking our male things like that. It was definitely a team effort, and not just our family, but friends and churches Way were involved in two different churches at the time of both. Our churches were very helpful.

spk_2:   17:45
I think people don't realize just how wide network you build in times of crisis. It's not just going to the doctor, it's not just going to possible. There's so many things around it that you know it's your new normal, but people have no idea, and and frankly, I hope nobody ever has to have that idea. But people don't have any idea how big and how wide this gets.

spk_0:   18:07
Yes, and you know, we really built a community at the hospital is Well, that was something I had not expected. But there were many friends we made that continue to be some of our best friends. I'm and sadly, some of their Children have passed on as well. Um, and so we have attended each other's, um, we've attended their Children's funerals, and we've all walked a journey that

spk_1:   18:33
no one else can

spk_3:   18:34
understand. That definitely builds a strong bond.

spk_5:   18:41
This program is a presentation of hearts, Unite the globe and is part of the Hug Podcast Network March tonight. Theglobe is a non profit organization devoted to providing resource is to the congenital heart defect community to uplift on power and enrich the lives of our community members. If you would like access to free resource, is pretending to the CHT community. Please visit our website at www dot hugged dash podcast network dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_3:   19:16
I was five hours old when I had my first surgery. The only advice I couldn't really give someone like that is to be there for your family. This is life, and you have to do with the meter. Live it or you sit in a corner and cry. I am in a Gorski and the host of Heart to Heart with Anna. Join us on Tuesdays at noon Eastern time. On speaker are blocked Talk radio. We'll cover topics of importance for the congenital heart defect community. Remember my friends, You are not alone. I am with origami l jewelry and we personalized luck. It's It has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets, and they gift lockets to people who are bereaved or they're celebrating somebody to get your own origami. Our luck it contact Nancy Jensen on Facebook for her website. Fancy Dancy made dot origami owl dot com You are listening to heart to heart with Michael. If you have a question or comment that you would like addressed on our program, please send an email to Michael even at Michael at heart to heart with michael dot com Now back to heart to heart With Michael

spk_2:   20:33
Christiana Let's talk about some family traditions. What do you do? Revolving. J. Lee? How do you memorialize her home?

spk_0:   20:41
We try to include her in her memory and as much as possible. Um, so we do visit her grave a couple times a week. Um, it's really important to us to keep her gravesite looking nice and, um, just create that special spot to come and remember her easy kill calls that Think about sissy. That's what he calls her gravesite. Yeah, so we spend a lot of time. There are, um we talk about her all the time and, um, the color purple. I won't get into the whole story, but the color purple is something that really reminds us of her. So whenever we see purple, where we have a color choice we choose purple on always makes her feel a part of our day in that little way.

spk_2:   21:29
That's very nice.

spk_0:   21:30
Yeah. Yeah. And then on her birthday and the anniversary of her passing, we usually do a balloon release or something special to really, um, you know, take that time as a family, to celebrate her and to grieve her at the same time as well.

spk_2:   21:51
But I don't see a contradiction there. I think it's okay to grieve and celebrate. You're celebrating your life. You're celebrating their their happiness, and you're celebrating that the time on and you're grieving that that has has ended, but it doesn't have to end in in any final kind of way. I really I think one of the things that that one of the reasons that we do this on DWI. Certainly here in our house remember our daughter and celebrator whenever we can. But the idea of keeping her close to us, even as a memory keeps her alive for us. Exactly. I've said this before, but I think the way we remember our loved ones is the way they will be remembered by others. We have an obligation to pass that memory and that joy as many people as we can.

spk_0:   22:41
Yeah, it's so true. It's so important to us. And I think that's why it's hard when you don't feel like other people are remembering your child. Uh, um and so we do as much as we can to make sure, um, others around us remember her, too.

spk_2:   22:56
No, that's very important, because then they get to know her and they get to feel her presence in the same way that, you know, almost to say with it that you did. Yes. How old are your other Children?

spk_0:   23:09
I'm so our oldest is about to turn four. And then we also have of a little guy who is nine months. Oh, yes, yes. So they're fun. Ages

spk_2:   23:21
define fun.

spk_0:   23:23
There is the ages, but it's really sweet. especially as our youngest is getting a little older. You know, it's really fun unjust to watch them, um, some time together and start to be little play and rough house a little bit.

spk_2:   23:36
Now, the youngest one has no really, uh, connection or memory it all to jail. He does. Does he

spk_0:   23:42
know he He doesn't, Um, just what we tell him and what we talk about.

spk_2:   23:50
Well, what do you tell your Children about her?

spk_0:   23:54
We talk a lot about her smile and her strength, and we talked about the things she would like, You know, if we see a purple flower, we talked about how Cissy would have loved these flowers. Um, we talk about, um, Dr Sissi is in heaven and that they'll get to see her again someday, but not for a very long time. Aim. And obviously that's a concept that's very hard for Children to grasp. Um, but it's important for us to know that they will see their sister again.

spk_2:   24:25
How do you explain heaven to them?

spk_0:   24:29
You know, as a Christian fan, only we talk a lot about God and about Jesus and that, you know, God created the world and Jesus died for our sins and that they're in heaven. Um, And so because of what the Bible says, Jay Lee got to go to heaven to, um that, um and that they will, that they will see her again in, ah, in a place that's not scary or painful, Like the world could be some time. But it's the happiest place in the world. Um, our oldest is varying to Disneyland. And so we tell him, Heavens, even better than Disneyland. Think he's excited for that concept? Yes.

spk_2:   25:13
Has he been to Disneyland?

spk_0:   25:14
Yes, yes, he is

spk_2:   25:16
a little taste of heaven. Has he seen

spk_0:   25:20
the fuse? Ben? Maybe six or seven times. We're going again in a few months, But its's happy place and with all he's been, thrill. It's just such a joy to see his exuberance And his, um, just you know, the joy he gets to feel when he goes there.

spk_2:   25:42
Well, in that sense, I think he's sort of untouched by the pain because he was very young and very unable. I think to really understand what the pain was about your audition process and go, go, move on much faster.

spk_0:   25:58
Yeah, it's interesting because he brings up sissy every day. And, um, he says, I missed this. See, Mommy? But I'm sure that's also because he hears us say that, Um, but several of our friends have had baby girls recently, and I think that's been triggering for him because he will talk about his friend's baby sisters and then say, I miss my sister. So I definitely think he's going through his own grief process, and he always will. But I'm thankful that, um, he was a young as he waas when it happened.

spk_2:   26:34
He sounds very resilient, though. He sounds very, but he has his own sense of joy. That's very, very strong. Absolutely. How will your family continued to celebrate Julie?

spk_0:   26:47
Like I mentioned, we talk about her all the time. And, um, one thing that I do is we have, ah, Facebook page where we used to write her medical updates for people to pray while she was still fighting. But now I really use it as a place to share memories of daily and a process, our grief. So I do a lot of blogging on there, and, um, it definitely feels like a place that I can celebrate her that we can celebrate her. Um, and others get to share in that celebration of her as well on. And then, like I mentioned, uh um, during holidays or during birthday, Um, we do bigger celebrations on her grave site. I also had a little project I have been doing for a while where I would send out purple headbands Teoh, um, heart warriors that were still fighting, especially Children who were in the hospital fighting. Um, and I sent out several 100 headbands, thanks to a lot of generous donations. And that project have slowed down over time. But it's something I plan to pick back up in the future. Um, because he's healing from my heart to see other people remember J. Lee And to also know that, um, they're remembering her and also celebrating the strength that youth warrior has on a daily basis. And so the headbands feel like a way to do that.

spk_2:   28:19
That's really very nice. I like that. I don't

spk_0:   28:22
think you thank you,

spk_2:   28:24
I think for a lot of kids who didn't know her but maybe received that that band. So she's almost more of a attained, some sort of superhero status that they didn't know her, and yet they can feel some of that strength from her. In a sense, maybe she's out looking over them now.

spk_0:   28:40
Yeah, absolutely. And I get pictures from parents all the time of their warriors in the head bands, and they tell me that very thing that they find comfort knowing that, um, J. Lee might be up there watching over watching over their Children.

spk_2:   28:58
And that concludes this episode of heart to Heart with Michael.

spk_5:   29:00
Thank you so much,

spk_2:   29:01
Christiana, for coming on our show and sharing your experiences and advice with us.

spk_3:   29:06
Thank you so much for giving me an opportunity

spk_0:   29:08
to talk about Jay Lee and how much our family loves her.

spk_2:   29:12
Thanks for listening to us today. Find us on iTunes and subscribe. And please remember, our loved ones were still with us as long as we keep their memories alive.

spk_3:   29:20
Thank you. Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to heart with Michael could be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share more stories