50: Kelly Blumenthal – CHD Mom, Advocating for Families and Children, Fundraising, And Always Inspiring!

On this episode of the podcast, Kelly shares her story and why she is so passionate about helping other families, fundraising, and doing anything she can to spread awareness about congenital heart disease!  

Kelly discusses the infertility issues she and her husband experienced prior to having their first son.

She talks about becoming pregnant with Finn - just 5 months after her first son was born.   

She then shares the story of her pregnancy with Finn and his delivery.

She talks about spending 8 months in the hospital with Finn, being apart from her husband and their one-year-old son, and all of the challenges that long-term hospital stays present. 

Kelly talks about the day Finn coded for the first time and how that will be a day she always remembers.

She talks about how she found her voice to advocate for her son while he was in the hospital.

She talks about the moment in the hospital that inspired her to advocate and fundraise for so many other families and organizations while spreading awareness about Congenital Heart Disease.

Finally, Kelly talks about Finn's next heart surgery, the relationship between her two sons, and the biggest lesson Finn has taught her. 

Join us for this episode as Kelly shares her story. 

Resources

Prayers For Finn Facebook Page -  https://www.facebook.com/prayersforbabyfinn/

Click The Link Below To Listen To The Walking With Families Podcast on Stitcher!

 

Podcast Transcription

Chuck: So this is the 50th episode of the podcast. We're all excited about this, and we just want to thank everyone for listening. Rita, Kelly, and I could not be more excited about how everyone is responding to this podcast: for all of the down loads, for the messages, the emails everyone has sent us, and for all of the guests who have shared their time to be on the podcast. I just want to say thank you to everybody who's made this so successful.

 

So, we were all thinking about the 50th episode and that we want to do a really special interview with it - invite somebody on who is extremely passionate about advocating for families and children, somebody who fundraises for companies and organizations to support the families going through these challenges with their children, and somebody who goes out of the way to support others going through this.

It’s somebody everyone who listens to this podcast already knows. And it is somebody that I've become really good friends with over the last couple of years, in supporting other families, or helping each other in any way, or answering any question that each other has always with “yes”. So if you haven't figured out who this guest is yet, I hope you're following her "Prayers for Finn" page. So let me introduce to you to one of the co-hosts of the podcast, Kelly Blumenthal. Welcome, Kelly. How are you?

Kelly: I'm great. How are you guys doing?

Rita: Great.

Chuck: Well, we're excited you're doing this. So it's a unique little twist that we're putting into this. But I can't think of anybody more deserving of being on the 50th episode than you. So in case anybody doesn't know, the way Kelly and I and Rita all met is: Kelly and I were at UVA with our sons, and both of them had been through heart surgery. And we were introduced in the cafeteria at UVA, Kelly and I were. And just in a really brief way - like hello, hey, acknowledge both of our sons were there for heart surgery. And then it was a couple of days later that we were both on our way over to the Ronald McDonald House. It was like really late at night.

I don't remember what time it was, it was just really late. And we were at the hospital elevator, getting ready to leave, and head back over to Ronald McDonald House and we ran to each other. And then it was like two hours later - we talked about all those stresses, and our sons being there. And that was like our real first conversation that the two of us really had. And it didn't take long for us to become friends. And being at Ronald McDonald House, we both were there for eight or nine months out of our sons’ first year of life. And that's how we got to meet Rita and know her passion for all of these children and the families going through the Ronald McDonald House. And that's how we all became friends. So that's the back story, that's how this whole podcast started. So, Kelly, let's just jump in with your pregnancy when you found out Finn was going to have heart disease and talk about that.

Kelly: Of course. So there's a little bit of a back story before we had Finn that I feel is important to our journey. My husband and I actually struggled for five years with infertility. And we had failed IVFs, failed everything, and it was a diagnosis unexplained in the beginning. So there was no reason per se, we were both healthy. At one point, we actually did become pregnant through IUI, and we ended up having twins but didn't know we had twins at the time. And I had pretty significant internal bleeding, and unfortunately, we lost both of these babies, little girls. And after that, not only did we have unexplained infertility, but because of the internal bleeding we - or I - had significant damage to several organs. So that was really difficult. We still went through IVF just because we wanted to make sure we tried absolutely everything.

So we took out a personal loan and maxed out our credit card and did IVF knowing we had a 0.8% chance that it would work. It did not work. So we were actually six months into the adoption process; we went into that pretty quickly. Just again, it was a very, very dark time and we just wanted to be in a position of moving forward with something. And we jumped into that pretty quick, domestic infant adoption. Six months into the process, we had scheduled our home inspections. And on Valentine's Day I found out that I was pregnant with our first son, Mason. It was a complete miracle. I don't know how else to describe it. Our doctor was completely shocked and pretty much shocked throughout the entire pregnancy.

I had the best pregnancy with Mason. I had no complications. The delivery with Mason couldn't have been easier, or as easy as delivery can be. He was a planned C-section because I have had several surgeries because of the rupture. And so they wanted to play it safe and make sure that there was no additional bleeding. So I had a C-section with Mason, and everything went perfectly. And we thought, "Well, this will be our one miracle." Mason was five months old and I found out that I was pregnant with Finn.

And another huge shock for not just us, but for our doctors. But it was a huge blessing and we were so excited. And with my pregnancy with Mason, I did not enjoy it at all. Even though it was very easy I was very emotional about it, thinking that something was going to happen the entire time, just based on losing the twins and our history with the struggle of infertility. So I did not enjoy the pregnancy at all. I was very unattached, which was not good. But at the time it was my defense mechanism. So when I became pregnant with Finn, prior to discovering his CHD, I promised myself that I would enjoy the pregnancy and enjoy every kick and not be scared.

And so, of course, making this vow to myself and to Finn, we found out at his 19-week anatomy scan that he has severe heart disease. And at first, of course, they told us that it was a 90% chance that it was due to a chromosomal defect such as Trisomy 18, Downs Syndrome, DiGeorge, something of that nature. So we did an amniocentesis and everything came back clear, which was again, a pretty big shock for the doctors. So at this point, the reason why his CHDs occurred is just by chance. That is, in the first 21 days that he was formed, when the cells were forming, something just went wrong and formed incorrectly.

Later on in his life we would learn that other organs formed incorrectly, including his brain, his lungs, and his bowels, and who knows what else we'll discover later on in life. But that syndrome is called heterotaxy. But the most severe defect, of course, was his heart. In the ultrasound, when I was 19 weeks pregnancy, the ultrasound tech saw that there were no chambers in his heart. And at the time, she didn't see a pulmonary valve at all. She saw no connection between his heart and his lungs. So the diagnosis and the prognosis for him at the time was very grim. All the doctors that we went to time at the time said he would pass away before he was even born, because when his lungs would try to connect at that 37-week mark and try to breathe, they would be unable to because of the lack of a pulmonary valve.

Later on, after we finally went to hospital, after hospital, after hospital, the doctors thought, well, maybe he could get a transplant and sent us to a hospital that could do transplants. And he, unfortunately, was not a good candidate for transplant, but they did discover that the pulmonary valve was indeed there, but that it was a very, very small. And hopefully, we could bring him past that 37-week mark, and he would not have preemie status and challenges as well as CHD.  We did make plans for a C-section with him, as well. For multiple reasons, it was safer to do one as a repeat C-section, especially since I still have lots of scar tissue, now, having the C-section just a year prior. And additionally, they wanted to do a C-section to make sure that there was no stress on his heart.

So we went in for a scheduled C-section. I had huge complications with this C-section. They couldn't do the spinal; they couldn't block me. And so I had to be put under general anesthesia. So my poor husband was out there not just worried about Finn, but now worried about me because I had a C-section a year before and it went beautifully. So that was a rough day, but Finn made it. And once he was born his CHDs were confirmed. You can only see so much in the ultrasound and the echocardiogram when you're pregnant. There's a lot of tissue to go through, so they were pretty sure that they knew all his CHDs.

But when he was born, they were able to confirm it. So his CHDs are PAPVR, complete AV canal defect, pulmonary stenosis, and then of course, we've got the heterotaxy syndrome, and we've got DORV, double outlet right ventricle. So basically, it just confirmed that the piping around his heart was not where it was supposed to be, and certain things that were there were too big or too small. And that the inside of his heart also did not have clean separations - basically, no chambers, so the oxygenated blood and unoxygenated blood were mixing.

When he was born, we were prepared right away for him to be on life support because of the severity, and that he would go and have a BT Shunt within the first few days of life to help him get better oxygen. And somehow, although on paper he was showing just severe CHD, somehow he was able to bring his oxygen to the high 60's, low 70's. After eight days they were comfortable with determining that he would not need the BT Shunt, and that we would try to get him to gain weight to get to the Glenn, which would be the next procedure in around four to six months. But he did go into heart failure at six weeks old, so we did have to do the Glenn when he was three months old.

He basically had severe complications from his Glenn. He did not tolerate the anatomical change, but yet needed it to survive. So we ended up being in the hospital basically from the time he was born until he was eight months old. There were several times where the prognosis was not good and we didn't know if he was going to push through, and somehow he did. He was able to come home almost two years ago. It was August 4th of 2015. He did come home with full-time nursing and several support devices, including a G-tube. And we came home with a Pulse Ox Monitoring System and many, many medications. He was hospitalized about every four to eight weeks from the time he came home. He'd been in the hospital his whole life. So now, he's coming home with a toddler that goes to day care and all of our fun germs. So the slightest cold would send him to the hospital, or even something like hand, foot, and mouth. But as he's been older, we've been hospitalized less, but we were actually hospitalized last week. And that was the largest gap that we've ever had in hospitalization. So he was hospitalized at the end of April, and he hadn't been hospitalized since December. So that was pretty amazing that he went from December to April during full on cold and flu season, touching everybody, hugging everybody, typical toddler germs and didn't even get even a runny nose, and we were able to make it through.

But his prognosis now is he's a little over two years old, and that third surgery - or for him will be the second - is around the corner. He will go in for his chest and MRI exploratory and also to close off collaterals in July. And then he will have his big repair …it’s either going to be a Fontan or biventricular repair, we're not sure yet...that will be in September. The goal with that is bring him to adulthood, but it will depend on technology in the future. But it's been quite a rocky road. I know that all CHD families say that, but it's been amazing to watch him overcome all of these (things) and still have everyday moments where he's able to be, basically, a normal toddler.

Chuck: So one of the things when Kelly and I first met that day, when she was telling me about Finn’s diagnosis, it became very apparent that the 5 heart conditions Finn had were the very same 5 heart conditions Thomas had. Of all the people we met she is the only one we ever met with the exact same five heart conditions. And so that's kind of what made everything so unique for her family and our family. So watching Finn go through this has been pretty remarkable and miraculous, seeing him overcome so much. From my perspective, just seeing him every day go through from those hospital stays to seeing him running around and playing now gets me super excited.

As you were in the hospital, Kelly, talk about those eight months, and the challenges as a parent as you're approaching the Glenn procedure. I know he coded a couple of times while he was in the hospital for different reasons so talk about these aspects also, if you will.

Kelly: Sure. So that time was pretty much like you said - it was a roller coaster. First, in addition to him going through this, I had had a C-section - my second one - a year apart. So I had a lot of scar tissue myself. I was in a lot of pain. I was limited to what I could do. I was hormonal because I just had a baby. So the first couple of weeks were very difficult. We were learning more about him and there were a lot of curve balls thrown. And, additionally, I was trying to heal at the same time while making decisions. My husband did not get a lot of time off of work, and at this point, he was our only income. And the hospital was over two hours away from us. And we still had my one-year-old son, Mason at home.

So for eight months, I was pretty much separated from them. I was up at the hospital, and they would try and come once a week on Saturdays and make the trip and come down. And then I would go and spend time with Mason. But it was going down to the cafeteria, or riding around in the wagon, or however long he would stay in the room and seeing the soap dispensers, whatever would keep him entertained. But there were a lot of weekends where they couldn't come because we wanted to make sure that we didn't share any germs. Mason is a cesspool of germs. So if he so much as had a runny nose or a cough, or even if Michael wasn't feeling well, we didn't want them to visit.

So emotionally, that was extremely difficult being separated. It's not the normal baby experience. Again, I had that the year before where your home within a couple of days and there's no manual - you're on your own, they're up all the time. So it was extremely challenging, huge difference from having a healthy baby, of course. It was emotionally draining, physically draining. There was one point where Finn went down for surgery once a week for six weeks in a row, and it does not get easier handing over your child for surgery. It doesn't matter if it's a 20-minute ear tube procedure, or an eight-hour heart surgery. Knowing that they're in the hands of someone else is very challenging. And not knowing the outcome - that was very difficult. Of course, the more severe the procedure and the sicker he got, the more I would worry.

It got to a point where I actually told the doctors that I didn't think that he could handle anymore, and that he needed some time to rest. They were planning on bringing him down for another procedure; this would have been seven weeks in a row. And I suggested that he was drained, and that he couldn't do it. He was starting to lose that fight. I could just feel it. And so I actually refused that surgery. And again, that's not something that I recommend, but he was very, very tired. There were, like you mentioned, Chuck, moments that were extremely scary.

Finn went in for a bedside chest tube procedure. He didn't even have to go into the OR, just in the PICU bedside. And they were having a really rough time putting him under because he was in so much pain. So they asked me to hold him, and he was four months old. They asked if I was comfortable holding him while they put the anesthetic in his IV, and I, of course, said yes. It is scary for a parent who has seen their child sedated. They obviously do not look well and are very unresponsive, and it can be a little scary and overwhelming, but whatever would help them. As soon as he went out, they very quickly and abruptly pushed me out of the room.

And I just thought that was for a legal reason and didn't think much of it. And then I heard a code over the hospital (P.A. system). But, again, I didn't think it was for us. I honestly didn't even know what room number we were in at that point. My brain was just total mush, so I didn't think it was for me. And they had told me that this procedure would last only about 20 minutes. It was over an hour, and I hadn't heard anything and, again, didn't think much of it. It could have been crazy coming out of anesthesia, or they could have (tried) to do something else. And the doctor came in and told me that he had had an allergic reaction to the anesthetic, which was Propofol.

As soon as he received that injection when I was holding him, his oxygen went from 50-something, which was what it was at the time to zero, and his lungs just stopped completely. And that's why they had pushed me out. They said that they'd been working on him the entire time, bagging him since I had been out waiting, and that they weren't getting him to come back and that they were really sorry. And they had called the ECMO team to come up and see if that was an option. So that was very scary, of course. And as he was telling me the ECMO team was on the way, another doctor came in and said that he started breathing on his own. And I was…I can't even explain the relief that was there. Of course, we were concerned about brain damage and what not.

And then, of course, after all of that, the whole point of putting that chest tube in never happened, so that still needed to happen which was another blow. Like after all this, we still need to do this procedure that we came in for. He still needed to get the chest tube, so we let them recover and make sure he came back to neutral. Then they had to put them under, again, using another anesthetic, Ketamine. It actually had the opposite effect. No matter how much they were giving him, he wasn't going under.

So it was quite a day.  It will probably haunt me every time I hear a chest tube for the future - and I know he'll need them, probably multiples. But he has now a very severe allergy to Propofol, which is unfortunate because it's one of the safest and easiest anesthetics and most common anesthetic to use. But that was very scary. He had other times where his pee had been doing okay, and all of a sudden I would get a call at 3:00 in the morning that he needed to go in for surgery - that he had too much fluid. They had an x-ray at 10:00 that night, but somehow, something happened between 10:00 and 3:00 in the morning. Every time I heard my phone ring, and even sometimes now, it seems like it's an emergency and it's been two years. I actually have my phone on mute all the time. It's just kind of a PTSD little thing because it was very, very difficult.

I was by myself. I was mostly at the Ronald McDonald House, but when he was critical, of course, I would sleep in his room. During that really tough time towards the summer, when he was a couple of months post-Glenn, I was in his room a lot and it was just very, very difficult - a roller coaster, that's the best way to describe it. And I would have two good days, and then all of a sudden he would crash for whatever reason, whether it was GI or fluid building up in his lungs. It was very difficult and very difficult for my family to watch unfold because not only are they upset about their grandson, but they're upset about their daughter, or daughter-in-law, and not sure how I'm handling it. Am I eating? How am I mentally? And it was just very, very challenging.

Rita: Kelly, there's so many points that we could talk about as you relay the story. I think the thing that strikes me most, or grabs my attention during this experience was you finding your voice and following your gut. As you just explained, telling the doctors that he's tired, he needs to rest. That type of thing is really impressive to me. Did you feel that come on? Did you start the process with absolute strength of self, or did that develop over Finn's journey?

Kelly: I think its two fold. One, I think it's instinct, just something eating away at me telling me something wasn't right, like his color is off but medically on their chart he is fine. But for me, I'm finding things that are not his normal, and something is wrong. It could also be like I mentioned before.  We went through a really hard time getting pregnant and we had to be very “voiceful” - if that's even a word - to advocate for what we were comfortable with at the time with the medical procedures and what not to go through with that. So I think that kind of a little bit prepped us for how we handled the hospital. It's a totally different hospital thing with us being in the hospital going through testing and procedures for infertility versus having your actual child.

However, we had been in positions before, like when I was internally bleeding in the hospital and trying to decide what to do. You know, do we have this procedure here at this local hospital, or do we send myself out to some specialist because we're in the DC area and there are fabulous hospitals around. So that kind of, I think, prepped us a little bit. But I think its instinct. And, also myself, personally, I'm never afraid to voice anything - not in an opinionated sort of way, but just in an advocacy sort of way. I've always been that way with myself, whether it's my own doctor's appointments or when Mason was born. So I think it's just, like you said, the whole kind of back and forth between nature versus nurture. Is it just how you are with your surroundings

I think it was a little bit of a combination of both. But the thing that fueled it the most was that I saw more rewards from advocating for him than I did with of the opposite. Every time I would say that something was wrong, something was wrong. And it may have been something small, but in the world of CHD, something small like a cold could potentially means something huge. I've seen children with CHD, even heart transplant, go on life support because of the flu, or RSV, or even just the common cold that turned into an infection.

And I noticed from the very beginning that the more I advocated for him and said, "No, I want to know more options. I want to know what else we can do," there were always more rewards with it. Something always ended up being wrong. Sometimes it was huge things, like fluid in his lungs. And now, this leads to six more procedures. And sometimes, it ends up being small things. But every single time, it ended up being something. That's what I think fueled it to have me…provide me… with more strength and more courage to just speak up. Sometimes that was in front of 20 people in Rounds. Other times, I felt that it was a situation where I needed to pull the doctor to the side and talk to one person specifically. It just depended. Other times, I needed to call my husband and talk it over with him, and make sure I wasn't crazy.

But I just noticed so much benefit in that, and I tell other parents all the time whether you're in the hospital for a broken arm or a broken heart: The parent always knows the child best. Do not be afraid to say something you know, yourself. If you're in the hospital do not ever be afraid to say that you feel that something is not right. Don't ever be scared to do that because doctors and patients are a team. And there's so much on paper that the doctors can do, but they don't know the patients personally.  Even children with the exact same cookie cutter CHD all react differently. We're all different personality-wise, and how we handle things. I've just seen time and time again how important it is for everyone to just work together as a team, and really respect each other. That in turn helps the kids go home faster, get better faster, and it is just an overall better situation for everybody.

Chuck: Kelly, one other thing that happened while you were in the hospital. There was one particular event that happened that really kind of spring-boarded your advocacy. Talk about that event, that situation, and where that led you today.

Kelly: Sure. So with five surgeries pretty much within a couple of weeks of him being born, I had been involved in a small project. That was collecting little lovies and having people donate them, so that while Finn was having his open heart surgery they were being handed out to other heart patients in the hospital. I had done that little project to kind of keep me busy while I was waiting for Finn to have his open heart surgery, and that was a great project. But when we were in-patient in May, and Finn was pretty critical, I was in the ICU. In the ICU, if you've ever been in the pediatric ICU, the rooms are very open, they're very close to one another and that’s so that nurses and doctors can get in very quickly to the patients.

It's not like huge private rooms where you don't really hear anything. So I could hear not only my own child’s struggles, and beeps, and complications, but I could hear several other families’ happening as well. And that's another thing, in and of itself, that's a huge challenge. So I was in the ICU and Finn was not doing well. And I think it was pretty late at night and I could, of course, hear the room next to me. The father was in the room next to me with his fairly new baby. The mom had had the baby, but they didn't know that the child had a heart defect (beforehand), and quickly learned after the child was born that it had a heart defect. It was flown in from Richmond and they ended up in the room next to me.

I could hear the dad get so upset, of course, and asking many questions. And I heard him have just the deepest sobs. And he was sobbing because he told the nurse that he only had…I think he said $76 in his pocket, and they weren't prepared for this and how was he even going to get through this. And, immediately, I asked my nurse to come in because I knew she was taking care of both of us.  I told her what I'd heard and I said, "Can I give him money? What can I do?" And she said, "Unfortunately, due to HIPAA laws, we can't tell you anything about them and I can't let you go over there and give money. I can't take money from you and give it to him. It doesn't work like that." And I said, "Can you please tell me what resources you have to help these families?" It just hit me that CHD does not discriminate. Children's disease, in general, whether a cancer or autoimmune disease or CHD, children in the hospital, anyone in the hospital, it doesn't discriminate. It doesn't care if you're lower class, middle class, or the richest person in the world. And it just hit me, even if this person has great insurance they're going to have to pay for a cab to get back. They rode in in the helicopter.  How are they going to get food? He's got $76. Immediately the anxiety just kicked in and I asked her what kind of programs she had.

I was very shocked that there was basically one program where families donated money for gift cards, or actual gift cards for gas and food, and that was it. But they were always at a low, of course, as those gift cards got handed out like candy, very, very quickly. And that just made me feel so helpless. I'm sitting there like - not only now my concern about my problems - now I'm concerned about this guy's problems and who knows this other person over here. I just felt so helpless and I said, "There's got to be something somebody can do about this." It just hit me that Finn was sleeping; he was pretty much sedated. I had my phone and I had internet.  So I just reached out to a couple of companies and wrote them, whether on social media or an email address they've provided, and asked if they could donate - whether it was money or whatever. I sent them a picture of what was in front of me, as me, sitting in the PICU and told them what had happened.

I was amazed at the amount of outreach within an hour. I quickly paged the nurse and said, "I need to know to what address to send all of these things because companies want to help." At the time I had a prayer page for Finn, and I posted on there and said how it just hurt my heart so much that I couldn’t imagine having to, on top of everything else, wonder how you're going to get home with your baby, or how you're going to get medical supplies, or how you're even going to eat while you're there.

Within not even an hour of that there was a running Amazon list and people were mailing high chairs to the hospital, and baby swings to the hospital, and gift cards. And (they sent) even fun things to make the families happy like little bows for the little girls and support pillows for nursing, and you name it. They were sending items for feeding. And two days later, we were moved out of ICU, thank goodness, and I was in my own room. The head of the PICU came in and jokingly said that her office smelled like cardboard because Amazon delivers very quickly, and she had boxes, upon boxes, upon boxes in her office. She asked me if I wanted to go over there and see her office. And I was like, "Yeah, sure." I took a picture and posted it, and literally, in her entire office, there was no room for a chair, or anything. It was just totally loaded with items.

I thought for sure that this was a one-time thing and that these companies and families were just trying to help this one-time. That was two years ago this month, and now, it's still going on. There's been thousands of dollars in actual funds, thousands of dollars in items donated to the children's hospital, people wanting to donate to the Ronald McDonald House, people wanting to make meals. It just kind of escalated and turned into…well, what else can we do? What other areas can we help with?

And all along, it was bringing awareness to congenital heart disease.  I'm sure you all heard on the other podcasts, that CHD or congenital heart disease, or congenital heart defects is the number one birth defect in live birth for babies. It affects one in 100 babies. In the state of Virginia alone, they were close to 1,000 babies born with CHD just this past year. It's a lot. But any OB office, any pediatrician that you go into, any emergency clinic that takes care of children, there is not one pamphlet, one card, one sign, nothing to educate anyone on CHD. And what ends up happening is, because this is becoming so much more common now that technology can detect it a lot earlier, these families are in the same position as myself.

And, as with Chuck, when we learned about it, whether it's on ultrasound or when the baby is born - like this man that was next to me in the PICU - we have no idea. We feel helpless; we feel hopeless. We don't know what's happening. All you hear is your child going to have open heart surgery. A lot of the times, your child is going to need three open heart surgeries. And you think, how is this even possible? And if there so much had seen a sign or a pamphlet or something of kids with chest scars riding their bike, doing gymnastics, swimming, I would have felt so much hope knowing that this is so common that there's a pamphlet for it. I would think my kids are going to be okay. I had no idea.

And so all along with this fundraising, it had so many positive purposes. For myself, it was an amazing therapeutic tool. It was a great tool in networking with other heart families. And the whole notion of not being alone that we talk about in every single podcast came into play very, very quickly, and gave me a lot of strength. It was helping the hospital.  It was helping the patients.  And it was bringing awareness. So just from my hospital room - just a couple of emails and calls - allowed this to happen.  When we were finally able to go home we were able to do even more because we could travel, and we could team up with these companies.

The companies would reach out and say, "We want to help. This fabric we designed - we want X percent of it to go towards the Ronald McDonald House”. “This bib that we make - for every one sold, we want one to go to the children's hospital”. And again, all raising awareness for whatever the cause. We've done fundraisers for other families - which has been very therapeutic, because I enjoy that type of thing.  It brings me a lot of joy and I love being able to help the families. But it makes it so that they have something to do for their child without having to go through all of the motions of the networking and emails and things like that. That's something I enjoy. So they're just able to honor their child and be able to do something to give back in their honor. It has been a whirlwind, but it's been an amazing support.

And I'm very proud and just so happy. Ninety-nine percent of these businesses out there get a bad rep that they're money-hungry, and it's not that. These people behind the desk - whether they're the CEO or a person answering the phone - they're parents or they have parents, and they can relate.  Everybody can relate on some level, and it's heartbreaking. But there are little things that people can do to help. And I've just been very proud of these companies who are rallying behind these causes and putting their trust in myself. I'm just a mom, just trying to raise awareness. And I think that it's been just, again, such an honor that they have been willing to do that. And I think it's been extremely inspiring (to see) the amount that they have given back. Some of them have never been doing anything in the past, and now some of them are partnering with bigger organizations to make a bigger difference. And a sunglass company, Babiators, donated hundreds of pairs of sunglasses to not just the Charlottesville Children's Hospital but hospitals around the country. And now, they've partnered with the American Heart Association to give back a certain percentage from each pair.

That's so important, and it was such a huge excitement to hear that partnership happened because, of course we know as huge CHD advocates, heart disease, in general, is the number one birth defect in babies. And heart disease, in general, is the number one killer in the entire United States, especially in women. My dad actually had open heart surgery a couple of years ago, so he and his grandson have matching scars. He doesn't have CHD, but he collapsed in front of me when I was in second grade at a kids’ sports event and we learned that he had pretty bad heart disease.

So, you know, seeing that technology evolve through the American Heart Association and Research and what it's doing in adults, and knowing that that it's just going to spin down to help kids, is such a huge hope for parents who are dealing with CHD. But it's just been amazing to see everyone from strangers to huge multi-million dollar companies just wanting to do something to give back… all because I just figured: you don't ask, you don't get. And I'm just going to send an email. Worst case scenario, they could say no. But at least I know that I tried. I never got this man's name in the PICU. I never knew his daughter's name. I never knew anything and he probably doesn't know me. But he was that spark, that aha moment that kind of snowballed everything.

Chuck: Talk about how Finn is doing now, leading up to this third heart surgery …or in his case, it's his second heart surgery… the Fontan. Talk about that, where you are today and your family in regards to that.

Kelly: Of course. So every day, I will not lie, it's still a struggle. Some of the struggles are very minute and others are pretty big. And we've just accepted for a long time that this is what this journey is. But we are very glad to have these struggles because it means that he's still here. And what I mean by that is one day the struggle could be that he pulls his G tube out. And, now, we're rushing around trying to figure out if we can get it back in in time or else he's going to need another surgery. Another could be we think that he's got a little cold coming on and how many days is it going to take before we're probably in the ER…but we had this one weekend getaway planned for over the weekend. Or it could be this massive bill that we get in the mail from an ‘out of network’ ambulance from a year ago. It just depends. You're constantly on your toes. You're constantly worried about them.

People ask me if I sleep and I'm like, "No, I don't." But I'm happy not to do that. I don't mean that I don't ever; I have an opportunity to sleep. But you love them and you worry about them, and you want to make sure that they're okay. I don't think parents who have healthy children sleep. Even once they're 18 and they're out of the house - I don't think they sleep. I think we've just figured out a better balance of it all. I know my strength in this journey, and that is Finn’s care on a daily basis and juggling his appointments and whatnot. Michael’s strength is definitely organizing all of these bills and the paper work that we get in, and doing any type of research - seeing which place has the less expensive piece of equipment, or the better places to go get therapy within our area.

I think that's one thing that's really helped out over the past, and that has been almost three years if you include when we found out when we were pregnant. I think the biggest asset in our marriage has been finding out what our strengths and our weaknesses are, and balancing that. Something like this, statistically, can take a huge toll on your marriage, and a pretty high percentage end in divorce. And of course, we don't want that. But that's a reality. That's something that a lot of people do not talk about. It's very, very stressful. Having children, in general, is stressful. Having a medically compromised child is even more stressful.

So finding out what our strengths and our weaknesses are and admitting that, and learning how to balance that, has been a really big asset. One huge thing in our family that was difficult for a really long time was me needing to work for us to be able to do all of this - like just pay for medical bills.  And we were a double income family forever. And now, not only do we have one child, but now we have two and one medically compromised, and I lost my job due to missing so much work from being in the hospital.

So for a very long time it was a huge struggle wondering when and if I could go back to work even if that was selling something out of my house - like Tupperware, or Mary Kay, or clothing. But with the amount that he’s hospitalized, and the fact that he's still in active treatment, as we call it, it's just not going to happen. I probably would have been fired from every job at this point. So balancing that, and understanding that that's not going to happen for us was a huge turning point because then it was like: "Okay, well, that's not going to happen. So what are we going to do to make this happen and be able to provide all of this for all Finn's medical care and travel expenses and all that?" So balancing all that and finding out our strength and our weaknesses has been very helpful.

Another thing that's been really helpful, and not a lot of people have this, is family and friend support. I know a lot of families who have moved to be closer to the hospital where their child is taken care of, and that means moving away from families and friends in that support system. We've lived in the same neighborhood - it's a very tight-knit community - for seven years. And they've seen us go through - Michael calls it the DINK Lifestyle: Dual Income, No Kids Lifestyle. Where we're just hanging out, doing whatever we want all the time, no schedule to abide by, all the way through our infertility challenges, through having Mason, through having Finn.

So anytime we need anything from them, whether it's to let our dog out, or check our mail (they help out).  Or when I was in the hospital, my neighbor had her two teenage son mow our grass every single week when they would mow theirs. And that was just so nice of them. You know, simple things like that were just so incredibly helpful. So having that community (is important). They did meal trains for us when Finn had his surgery so that Michael and Mason were, you know, taken care of when we're not here. And then they freeze some for when we come back. All of those things. Those families tell me all the time they feel like they're not really helping by mowing the grass and, you know, bringing over those meals. And they have no idea how much that means to us, or saving our mail for us.

So having that tight-knit community has been a huge asset. Our family, they all live an hour south, except for my mom. She actually lives about ten miles from here. My mom works from home, so she's able to come over and help a tremendous amount. Like today, she's watching both of them downstairs while I'm up here doing this and she loves it. So having the support of friends and family is a huge asset in healing and recovery. I tell people, "You can't do everything." If somebody wants to help you, if somebody is reaching out and says, "I want to make a meal' or 'I want to rent a movie and bring it over for you guys. There's popcorn for you to have at night", say, yes. Please say yes. They wouldn't be offering unless they wanted to do it. People like helping people. You don't have to feel pressure like you have to help everyone out in the future. Your time will come, at some point, where you'll be able to help someone even if it's just being there emotionally for them. Let people help you. Just say yes. That's been such a huge asset.

Other heart families in the community, whether they're on social media and they're in Spain, or local, that has been also a huge asset. You would be surprised at how close you get with families that you've never met before. Just following them on social media, and how inspired you get by them, and venting with our parents…they're the only ones who know the lingo that you go through. And I've learned a lot from other families. Watching other families has helped me to be able to make good decisions or more educated decisions in Finn's care even though every child is different.  Just when certain common things happen, or even if it's something simple like certain products that help in the hospital when they're trying to rip out their lines, I learned something different from each family.

Even if it's just…I didn't know that there was an app that could have any restaurant in the planet deliver food to you, even in the hospital. That was helpful. Once I found that out when I was in-patient that was amazing. I was eating the worst food for you for a really long time and then another heart mom is getting some gourmet grilled chicken salad from somewhere. I'm like, "How are you getting this delivered to you?" And there's some app that does that. Simple things like that.

And then the other thing that really helped is not to overwhelm yourself with everything coming up. (This is) getting back to your original question about the surgery coming up. Once we were given an actual time line - we haven't received an exact date yet - but we know it's going to be July and September. Once we were given that then the reality set in. This is real. This is going to happen, and this is what is going to happen. It consumes you and it consumes you very quickly. The doctors have been very realistic with us and told us that these are the statistics of the hospital. These are the statistics of this surgery, but your son will not apply to this. He has never gone by any statistic. With some of those statistics he's completely been a super hero and totally blown them out of the water - like not needing that first BT Shunt surgery. And then others of them - like the whole Glenn situation and spending all that time in the hospital - has been a disappointing surprise. So they cannot give us any odds. They cannot give us any statistics. And we appreciate that because, although we are the most hopeful people on the planet, we're also realistic. And knowing that no one can for sure say what will happen during these procedures and what will come of it, it helps us to make daily life decisions a little bit easier.

So this summer, instead of just staying at home and going to our neighborhood pool every once in a while, we are getting out more and doing more things that both boys will enjoy and making more memories. And we don't care if we're tired. We don't care if we have to recruit some family members to come along on this journey to help us wrangle them running around everywhere. But we're doing things like strawberry picking, going to the zoo, going to the aquarium, going to the park. Any birthday parties that any of the kids in Mason's class or friends of ours have, we're going to try and go to those. We're going to take a family trip to the beach.

Even on a daily basis, just daily decisions, like if the kids want to eat an Oreo for breakfast, it won't kill them. I think that that's going to be okay one time. Different things like that. We've just been a little bit more - or a lot more - relaxed about. If they want to crawl into our bed in the middle of the night, just things like that. It's a balance of making sure that you're still parenting and raising respectful human beings, but at the same time, just living and choose your battles. And I'll take that Oreo at 7 a.m. if that's what they want, just so that they can be kids.

So knowing that that is around the corner has consumed us a lot. There's not a day or a moment that goes by that we don't think about it or that we don't feel like there is a countdown.  My gut tells me that everything is going to be okay.  But, in true Finn fashion, he's probably going to scare us many times and probably scare the surgeon. But my gut tells me that his purpose is to be here, and that he's got something greater ahead of him than I could ever picture. But still being prepared for the reality of CHD is just a really tough balance. And people always tell not just myself, but all heart families or families dealing with medically compromised children that, "Oh, you're so strong, I could never do that." I guarantee you that any parent could do it. Everybody has their own ways of doing it, but every single parent could do it. You're never going to give up on your child, you're never going to give up on yourself. It just doesn't happen that way. So, we just all do it in our own way.

I still cry on a regular basis. I still get angry at CHD on a regular basis. I'm human, but I'm still grateful that we live in a time that Finn has options, and he has survival options. Because 10 years ago there was no hope at all. So I am so grateful that we are at a point now in technology where he is here with the opportunity to be here. And not just be here, but actually have real life experiences even if those experiences are just being able to be home and play with his brother. So I just tell people to never lose sight of that. I's so easy to look at the “glass half empty” all of the time. It's so easy - much easier - to do that than to look at the positive. But as hard as it is, just try and think about the good things that are happening and that they're still here no matter how difficult that is, and to not pressure yourself so much.

There's only so much that we can do as parents, and even as doctors, with the information that we have at the time. And that's all that we can do. We can't predict the future. And for us, to be honest if I could, I probably wouldn't want to know. So, you know, there's just only so much that we can do. And, as parents we show our kids love and we fight for them, and do everything we can, and that's all that we can do. But his surgeries will be July and September and, hopefully, he will just knock it out of the park and surprise everyone. And he will fall into that statistic of coming home in eight days. That would be amazing. I would probably need therapy after that because I wouldn't believe that it's real but that's our hope.

Chuck: It would be good therapy, right? If that's what happened, it would be very good therapy. And be like rejoicing therapy, it'd be like...

Kelly: Everybody pinch to me right now to make sure I'm still awake. But if he doesn't, and he needs to do his typical Finn thing and do it in his own time, then whatever he needs, he knows he can have. This hospital stay will be completely different. He's a lot older. And I can tell you 100%, it gets harder when they're older and their mobile. He ripped out every tube in his body when he was four months old with no muscle tone at all. So I can't imagine the damage he's going to do when we're there. But we'll be prepared. And, unfortunately, I think I'll have to stay in his room the entire time.  But there will be lots of “Octonauts” and "Paw Patrol" and all sorts of dancing. Whatever he needs. Katy Perry: Roar. We'll do it all day every day. Whatever he wants all night. Cheerios. Just whatever makes him happy.

The hardest part for him I think will be being separated from Mason. The ICU does not allow anyone under the age of 18, and he will be in ICU for his entire stay until those very last few days that he's just working on feeding. So the majority of his time will be in there. So, unfortunately, he and Mason will need to be separated, and I think that that will be very difficult for them. But again, grateful that they're both young. Mason and Finn are a year apart. Mason just turned three and a half, Finn is about two and a half.  So fast forward a couple of months, they'll be about to turn three and about to turn four. I don't think they'll remember any of this. And if they do, we're going to try and empathize the good memories and maybe focus more on the amount of shark stuffed toys we put in Finn's crib versus the amount of tubes that he has coming out of his body. So we'll try and, you know, emphasize those good memories and promising memories instead of hopefully not ones that will focus on the negative. But they'll get through it. And I'm excited to see what technology holds for the future.  Because if he does need something, like a valve replacement, that will be years down the road. And in fact, it could be Matrix-like where you just take a pill and that's it. So I'm excited to see what the future holds for that.

Chuck: Okay. Two last questions that I have for you. Answer briefly if you can. The question you always like to ask families is: How long does this affect Mason and his relationship with Finn? You just kind of touched on it. And the second question is: Biggest lesson Finn has taught you through all this?

Kelly: So Mason and Finn, they didn't really know each other until Finn was about a few months old. They have a very special bond. I can guarantee you for any parent listening that Mason does not remember anything about the first eight months of Finn being in the hospital and he was one year old. So that's a comfort for me. They are inseparable; they love each other. He does see pictures of Finn with his tubes in from the past, and he does get upset. But we are trying more and more to give him a little bit more detail now that he is getting older and just kind of see how he responds. But everything is sort of up to him and every family and every child is different. But so far, he's done amazing and he truly, deeply cares about Finn even if he just cries because he's a toddler. So that has been pretty magical to watch.

And then what Finn has taught me is certainly a lot of patience. That's for sure. I used to not be a very patient person at all. I will very openly admit that. He's taught me a lot of patience. And then I think what a lot of people say is to just cherish all the moments that you have, even the tough ones that come with parenting, because they're only little once. And you also never know what tomorrow brings. But I think the biggest thing that this whole journey with Finn has taught me is that worrying doesn't solve tomorrow of its problems. It strips today of its strengths. And I know that's easier said than done. But that has truly helped me to sort of keep my focus on as many positive things as possible, and be able to balance the challenging things when I need to, and not just overwhelm myself every day. Because it is a lot to take in.

Chuck: That is a good thing to close on. The quote you just told me. You don't know what tomorrow brings or what today brings. So if people want to reach out to you, what is the best way they can do that?

Kelly: The best way would be Finn's prayer page. It's just called “Prayers for Finn” on social media, Instagram, and Facebook, and just shoot me a message. I'm very active on there. So normally my response time is about an hour, depending on what the day holds.

Chuck
: Thank you for doing this and thanks for being on the podcast with us every week, Kelly. And, you know, it's been a journey for the two of us, and it we are grateful for Rita and all of her support, and everything she does for so many families, and all of her support for us. And I think Rita is remarkable in her strength through all of this also, and watching families go through this. And I'm just happy to be a part of this podcast with the two of you, and seeing it reach so many different families. So I can't wait to see what the next 50 episodes bring.

Kelly: Woo-hoo! Thank you, guys for the 50th! Super exciting. And I'm going to echo what you said. Rita, I think people call you the glue a lot and I think that you should be next. So maybe 51, or 60, or whatever your special number is, I think you should definitely do one. You have a really amazing story with your journey, as well. But, yes, the CHD journey has brought me to this. So this is one of the positive things that has come out of it. So you can't be mad about that.

Rita: Great job, as usual. It's inspiring, always inspiring.

 

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