Babysitting and Daycare for CHD Survivors (Remastered)

How can you identify a good babysitter or daycare when looking for a facility to care for a child with a congenital heart defect? Is it ever appropriate to leave a child with a congenital heart defect in the care of someone else? What can parents do to ease the transition if they have decided to place their children in daycare or in the care of a babysitter? Do children in daycare or in the care of a babysitter get sick more often? These are just some of the topics we will consider in this episode.

Heart Moms Amy Bennett, Adinamarie Pelicci-Alsina and Dawn Silverman discuss strategies and experiences in leaving a CHD survivor in a daycare situation or with babysitters. We will discuss things to look for in a daycare or babysitter and how to best prepare everyone involved for a good transition.

Transcript

spk_1:   0:02
Welcome to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH to York and genital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky

spk_2:   0:30
Friends to hurt her with Anna. Today we have a special encore presentation of Baby Sitting in daycare for PhD survivors. I hope you all enjoy it. Welcome to the

spk_1:   0:40
11th episode of the second

spk_2:   0:42
season of Heart to Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. Today's show deals with baby sitting in day care of congenital heart defects. Survivors. I'm going to start off by stating that parents of Children who have critical congenital heart defects or CCH D's face different challenges regarding baby sitting in daycare. The parents of Children who have have surgeries that more completely repair their Children's heart defects because Children with C. C. H. D is often have palliative care which means that the Children's hearts are fixed as well as they can be fixed at that given moment in time, and that there are not full repairs, allowing the heart to function like a normal heart. Our Children are at more risk for future surgeries and complications, then Children with normal heart. An excellent doctor, Dr Dorian Rosen Struck, noted that we parents of Children with C C H d. Need to take certain things into consideration when looking for child care for our Children with PhDs. She mentioned that childcare providers should be trained in pediatric advanced life support or pals, and they should also be able to recognize signs and symptoms of exacerbation of congenital heart defects in Children. As many of you parents know, some of these signs include shortness of breath changing color. Usually it's a bluer tent around the mouth and excessive sweating without exertion. Fainting, which is also known as Hincapie, major changes in behavior such as unusual crankiness, etcetera. Dr. Rosen Stroke mentioned that it was a good idea for childcare providers to have continuous education for the entire staff, from the janitor's to the head of the center so that everyone knows when a child is in cardiac distress howto act on the child's behalf, since time is of the essence when it comes to caring for a child with a congenital heart defect. She also recommended that the school nurse in office should have oxygen tanks in the facility and that the teacher to child ratio should be lower. The learning environment should be one that reduces stress. It needs to be a relaxing environment, which might add to the overall cost of the center into the cost of childcare that the government might need to help out such a center, which would be rather unique because of these considerations and many more. Many of us are parents find that it is very difficult to find baby sitting our daycare facilities that meet the requirements we so desperately need for our Children to thrive. On top of that, we know that when Children are exposed to many other young Children, they're also exposed to many more germs, which can lead to more illness, which in turn could lead to more hospitalizations. But not necessarily. It really depends on how much the DHD survivors immune system has been compromised. Our topic today, baby sitting, and they care for PhD survivors to discuss this topic. Our guests today are Heart Mom, Amy Bennett, Adina Marie Colucci, Tina and Dawn Silverman. Amy Bennett is Monty CHD Warrior. Brody, who was pulling type Isaac Left Heart Syndrome, or H L. H s body, has had five open heart surgeries to date and his pacemaker dependent. In addition to being a heart mom, Amy is an attorney and a c P a. It works part Time, is an accounting consultant for nonprofit organizations. She also helped found and serves as treasurer for Sisters by Heart, the only national nonprofit organization providing support and care packages exclusively to newly diagnosed a chilly just families. And as a Southern California vice president of the California chapter of the Children, her foundation, Amy works both at home and at client locations and has used a myriad of childcare options, including both home based baby sitters and traditional daycare environment. Amy Blog's regularly at www dot hope for baby Bennett dot com, and you can find out more about sisters by heart at www dot sisters hyphen. Why hyphen heart dot org's Lameda, Deena Marie, Police, Chie Alcina and on Silverman later in our show. Welcome to heart to heart with Anna Amy. Thanks

spk_4:   5:00
so much. Anna Thrill to

spk_2:   5:02
be here. Let's talk about what you briefly alluded to in your bio about how your job has required that Julie body with baby sitters and in traditional daycare environment. First of all, tell me how old body was and how many surgeries he had before you left him with baby sitters or in day care. But

spk_4:   5:21
the first time I left him in any sort of danger setting outside of with my mother. With my husband, he was probably about 15 months old. He had had to be open heart surgeries. At that point, he had been much younger when they happened. They were five days old, two months old and seven months old, and he spent most of the 1st 5 months in patients. I was the primary caretaker dad visit a lot in the hospital, but I was the primary one responsible for caretaking. So I was home within full time after that final surgery and then when he was about 50 muzzled. He's been stable for about a year ago. That point no further interventions. I want to say he maybe had one additional hospital safer with me of related things, but really, he was home and stable with me. He was getting physical therapy in home and occupational therapy in him, but nothing more than 30 minutes here an hour there. Maybe we had taken one date night, but certainly nothing regular was typical life of that new head of last child or any significant PhD. And when he was about, I don't know if it's 14 15 months. I was approached by a former employer, asked me if I was interested in doing some contract work for her, and she indicated I could do it all at home. And I thought, What a great opportunity for me to get back in the workforce but without leaving Brody. So when

spk_2:   6:35
he

spk_4:   6:35
started doing work for her 5 10 hours a week at home, we have a daughter who's four years older than body. So we brought in a sitter who we knew to watch him in our home with that point in time.

spk_2:   6:46
So you have a daughter who is four years older, and she was probably in school by this time in kindergarten. Yes, OK, and we

spk_4:   6:56
left her in preschool when he was born during most of his long stay. At one point we pulled her out that we put her back in four months later in the fall, he was in every school environment and her preschool had a nursery where she had started. Two men sold three lentils, but we opted to not facility in it. Daycare setting environment. At that point, the sitter who would come into our house is one of those things where as we crown and I think a lot of parents find this, things just work out the way they're supposed to. And they really didn't know it was a sitter who had been a teacher of the school that our daughter had gone to. So we had a very close relationship with his transfer specialty in early childhood development, and at the time she was between jobs. I think she's doing her masters, and so she was looking for a little extra nanny and work on the side the least national rep for a couple days a week. Wait, she knew CPR, which is like a concern.

spk_3:   7:52
You knew how to relate

spk_4:   7:54
to younger, which was my mother.

spk_2:   7:57
So she probably knew your family history very well as well. She

spk_4:   8:02
did. And I will tell you, I don't think body is the only child like that has been through what he's been through. He had major separation anxiety to the point where it

spk_3:   8:10
was hard for

spk_4:   8:11
me to leave the room without him breaking down and crying, let alone working in the other room in the house. So when she first started there with a so I would sneak out the front door, pretend like I was leaving, who could be happily with her, and I sneak in the backdoor work in our bedroom, which is in the back of the house, which was fine until he figured out I was married to one of you. With me,

spk_2:   8:29
he would be sensitizing him. I think what you did was brilliant, you

spk_4:   8:34
know, it's really worked out. It was a challenge, but it will be worked great. And we laugh now. We tell her she laid all the groundwork for how much fun he has the dissenters in its school now that she had to deal with a lot of trickery and trying, Todo hinted that he was having about a distraction, but she

spk_3:   8:50
was a perfect once is

spk_4:   8:51
enough because she refused, you know, babies being dropped off a daycare who didn't necessarily want to be there and needed a little bit of adjustments. But she was perfect. So we did that for her, I think, about six months or so close to a year. And over the course of that time, his physical therapist noticed that he could use a little more help with the separation anxiety, and she recommended because she wanted a center. She recommended that we bring into the Centre for Physical Therapy and the center happened tohave. Two different stages of development of police for the 1st 1 was very hands on, like six kids and three teachers, and the parents usually stayed. There was a lot of sensory work, and then once the Children graduated in that problem, they could go into the actual developmental preschool, which was 15 kids, one entirely by 10 physical therapist, occupational therapists and speech therapist. And it was two and 1/2 hours, three days a week, the true many preschool. It was a very gradual transition for us. He started in home And then, while he was still in home, we started sending him a couple of mornings a week to the first step of developmental preschool. Once a separation, anxiety has started to abate a little bit. He was ready for bigger things, and then we step him up into the true developmental preschool, and that was an incredible program for him. And

spk_2:   10:07
then he already in the regional program with the public schools. Is that what helped to fund that she

spk_4:   10:13
wasn't so anything. It's different across the country at here in Southern California, and they start with Regional Center, which is birth to three and regional center fund early Intervention Service's. Then when they turn three, they're assessed for a possible I. D by the school district, and then they move into the school district based programs, and the school district pays at that point for the 1st 3 years, it's all paid by county. Regional service is for us. One of our big challenges with Brody is not just when I left, but transitioning from one X to you, too. Annetta was hard for him because I was his comfort item, and I wasn't there for him when he's transitioning when he was in the developmental, peaceful for about a year until he turned three. They worked consistently, and we had goals that we worked on consistently to get him to the point where he could transition without crying. Every time we're great toe, have a preschool that's run by occupational therapists. Physical therapist. It's just a phenomenal opportunity for kids who've been through what these kids have been through because they really can't identify their problems and things we need to work on. So it was incredible opportunity for us. So then, at that point, we transition into a traditional peaceful. He was ready, and now I work three days a week for two different clients and he goes all day, three days a week and, you know, like everything else, it was a little transition, but he really did while and he's being pre kindergartener now and loved it and my having unique experience because I only work part time and my schedules really flexible, like work from home or at client site send my child care needs are vastly different. Beautiful 10 State. Oh, Mama, you're full time working, mom. But we were really lucky that we had a lot of opportunities and things we could mold to my schedule, which is really nice.

spk_2:   11:53
But I worked. So you're really lucky, Amy. I would sit now, sweetheart, you are really intelligent about the way that you approach this and you made sacrifices. Had you gone back to work full time and with your background, you certainly could have things would have been very different. You made sacrifices and choices to benefit body and your family overall. Well, thank

spk_4:   12:14
you Didn't really think about it that way. When you're in the moment, you just do what you gotta do. What works best for the circumstances. And I was a the way we did it. We were lucky enough that our schedules were able to accommodate it, that my husband was able to work and I could stay home. And we were lucky that everything just fell into place. And they think that's part of the reason buddy Doing as well is because our schedule before that, the opportunity to transition and through all the stages where he needed a little bit of extra transitions. If you do have the opportunity of just slowly transition them at their own pace from a sitter, occasionally center a little more common. I know a lot of staying home. Mom will see that through the regular date night, Mommy and me activities. I think a lot of these kids deal with the same type of separation anxiety issues, but he suffered from. I think it's important if you have the flexibility to be a transition them along one step at a time at their speed, because every kid is gonna need more or less adjustments.

spk_2:   13:05
Oh, I think you're absolutely right. We really do have to follow our Children's lead, and I think we really do need to see where they are Psychologically. It's not just a parent who suffer from post traumatic stress disorder. I honestly believe that a lot of our Children, especially as they get older and they become more cognizant of being in the hospital and being separated from Mommy and Daddy and sisters or brothers. If they're also siblings in the family, I think they also suffer from a certain amount of PTSD or just anxiety. It's not normal to have all these machines attached to you and beeping constantly and strangers coming and checking on you all hours of the day and night, then that's really normal. And when she's been home for a while and then you get thrust in that environment, it doesn't seem normal. When that's all you've known, then it does seem normal. But when she's been home for a while, you've been acclimated to what is normal then going into that hospital environment can be stress inducing, so I think you're right. We need to take the cues from our Children and act on those progressively we can't expect our Children just automatically make changes because it would make our lives easier. Our parents, our lives, are not ever going to be easy ever again.

spk_4:   14:17
I totally agree. And I think to the extent that apparently space in the dilemma they care not for their child. Er, in home care for their child has an opportunity to find someone to watch Their childhood, maybe is used to dealing with medically fragile Children, spent a great amount of time in the hospital. I think it's better because they can have a little more patients a little more understanding that there may be little PTSD triggers. There may be more separation anxiety, their issues that these kids deal with, that a child has not been do with eight centers. Deal

spk_2:   14:46
Absolutely. I And here's the thing. It sounds like you're angels were watching over you, and you had those people brought into your life at just the right time. Sometimes those kinds of things happen because we're looking for them and because we know what to look for and sometimes you really have to work hard for it to happen. It doesn't just happen to you, so we need to encourage parents to know what to look for. Know how to find these people. It's not always easy. It certainly is easier if you live in an area that has a highly educated population. And I think it's much more difficult if you live in a place like Alaska or places where there aren't hospitals that treat Children with congenital heart defects, especially critical congenital heart defects like a chili chest. And so we need to let parents. Now those people are out there, and here are some of the ways that you can find them. You had your angels watching over you and Brody to it. Sounds like you really had some extra help way did

spk_4:   15:45
he needed it, and we were very lucky to have found

spk_2:   15:48
it. Yeah, well, Amy, what was the hardest part of having to leave Brody and Baker? It sounds like part of it was that transitioning period and dealing with the separation anxiety. What else was really difficult for you to into work?

spk_4:   16:05
I think the hardest part for me was letting go a little bit. Like a lot of lot of parents who've been through this a little bit of O C d. About making sure things are done exactly right. And I have been the one in the hospital by his side for so long. I had been the one at home with him administering medications, prepping bottles, watching him like a hawk to get your point where I was okay with someone else doing that. Someone else not being is finally attuned to his needs as I was. That was a big step for me to know he was gonna be completely out of my sight to start with two and 1/2 4 hours in a little bit longer each time, and especially not so much at home, because I could pop out and peek at him if I needed to. But at an offsite at the center somewhere, that was a big step for me not be hovering over him and being within arm's reach to check on him and make sure he's upright like anything else. It was a transition, but it was a hard transition for me. Personally,

spk_2:   16:59
I can totally relate to that. Since my son was also born with HHS, I found it very hard to leave him with anyone. I just had this sense of dread that something would happen to him unless I was right there with him. I net somehow if I was there right over him, that nothing bad would happen, and I know that doesn't make any sense. But like you, I was with him in the hospital constantly. I knew what to look for, and I think it's very frightening for us moms who are there with our Children constantly while they're in the hospital. To believe that somebody else is going to be as finely attuned to our Children as we are,

spk_4:   17:35
you hit the nail on the head. Look, I felt the exact same thing gets to know I'm not alone. We're not

spk_2:   17:41
alone. We're not alone, Amy. There's a whole community out there who really feels like we do. But you know what? Most people don't talk about it. It's almost like it's taboo for us to say we have these feelings because we have to be the strong Ma. We have to be the Mama Bears or Mama tigers who are out looking for our Children. And I don't think people realize the internal conflict that we're going through.

spk_4:   18:02
You're absolutely right. It's a challenge, something that we don't really talk about.

spk_2:   18:07
Amy, what best advice do you have for parents who might need to leave their Children who have congenital heart defects with the baby sitter or a daycare? Because they do have to return to work?

spk_4:   18:17
I think my best advice would be to seek out opportunities to find the right person to watch your child. I understand that when you have a PhD child, it's gonna be a little different experience searching for a baby sitter or a day care center that the center that any other Children you had went through was that your neighbor sends her daughter son, two might be the right place, but it might not be. And I think you need Thio. Talk to your speech years. Pediatricians talk to the cardiologists if they're getting any sort of physical therapy. Occupational therapy service is already those are oftentimes great. Resource is people who may say, Oh, you want to send them to a daycare setting. You know, I happen to know of the daycare setting where they have more than one physical therapist, occupational therapists on site or oh, I happen to know one specializes in medically fragile Children or Children with special needs or oh, I happen to know of someone who has experience with this because every single one of those, they're going to make the transition a little bit easier and they're gonna be a ble Thio, Give your child may be extra things that you haven't even occurred to you that they might need along the way.

spk_2:   19:25
That is such excellent advice, Amy, and you know what you hit on something that we haven't really talked about, but that is learning the jargon medically fragile Children with congenital heart defects, Cesaire terms that we use now in our normal vernacular, which we probably did it used before We had Children with H L H is brought into our families, but those are the terms that you use when looking for a facility or looking for a day care provider. And you're so right. It's all about networking, don't you think?

spk_4:   19:55
Absolutely. And it's about understanding what opportunities are out there. I think the thing that is frustrating to me is when I see parents who didn't know that was an opportunity to take advantage of a lot of times, especially with kids who's been to it, what our kids have been through, it's all about getting intervention, and service is as early as possible. And then you can combine that with any day care choices you have. That's even better. It's just helping them get a little bit further ahead than they would have been otherwise. And this is all about knowing what opportunities are out there and taking advantage of him.

spk_2:   20:29
Oh, you are so right. The sooner you get Children who are medically fragile or who have special needs, a soon as you can get them into a program that the sooner you can start to remediate any problems they might have plus pay attention and be on the lookout for potential problems so that you don't make those stumbling block in the development so they can be equal to their peers when they're ready to start school. Oh, you're so right. The sooner we can get them in a place where we can remediate any problems they may have had from those long con civilizations and being on a ventilator and having paralyzing drugs in our body. All those things were not normal for our child's development. So we have to overcome that one way or another and you're so right that early intervention. It's not just about watching the child so that the child eats and has clean diapers and is intellectually stimulated. It's also about remediating some of the problems that they may have,

spk_4:   21:23
absolutely. And I think a lot of parents, when they're looking for the immediate need of a baby sitter, a daycare they might not even realize there are opportunities out there where early intervention doesn't necessarily have to be a completely separate sending from the daycare or from a baby sitter. Sometimes in some places you may have an opportunity to combine the two which also means less therapy appointments, less intervention service is in general and a little bit of a smoother transition for your child

spk_2:   21:49
because they can actually use play and things that the Children are normally doing, such as eating, occupation or physical therapist can be there, whether eating and help introduce foods to them so they could get rid of any world versions they have. And so feeding issues become less of a problem. And there are so many different ways that in a normal way, these people could be doing therapy. Our kids don't even know about it, and we don't have to take them to another centers. I think what you said your advice was brilliant and spot on. And these may be things that our Children's pediatric cardiologists don't even think to tell the parents. Yes,

spk_4:   22:24
you're absolutely right. And I wish every pediatric cardiologists or pediatrician knew about, in particular these developmental preschool opportunities, because I think they are just so phenomenal for our kids. And I wish that more doctors and more parents knew about them

spk_2:   22:39
well, and it's about treating the whole child, which parents. But we are charged with doing the pediatric cardiologists are charged with taking care of their heart, and that's, of course, of critical importance. But its appearance. We have to take care of the whole child, and that means his developmental issues as well. Amy, you have been so awesome. Thank you so much for coming on the show and sharing all of that awesome advice with us. And I hope there was a pediatric cardiologists who listen to our show because it really wouldn't be that hard to continue the education of the parents with these kinds of things in mind. It really wouldn't take them that much longer. But I think that's what sisters by heart, the organization that you work with and your lovely block. I just love your blog's. You're so down to earth and you share things that other people may not be aware of on a daily basis. I think that has been so helpful. We're so lucky. We have the Internet. We have ways to interact with each other and learn things from each other that are doctors may not think to tell us about it. Do need to take a quick commercial break, but don't leave because you'll be coming back later at the end of the show in our in studio session, where we have everybody together coming up next, we'll have another heart mom who has a child with a complex congenital heart defect. We'll discover how she felt about having to return to the workforce and how she found the right care for her daughter when we returned to heart to heart with

spk_5:   23:59
Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books could be found at amazon dot com or at our website www dot maybe Hart's press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic Left Heart Syndrome. A Handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.

spk_2:   24:37
Welcome back to our show Heart to Heart with Anna, A show for the congenital heart defect community. Today we're talking with heart Mom, Amy Bennett, Adina Marie, Police, Chie Xena and Dawn Silverman. We just finished talking with Amy about her experience of finding proper care for her son with a critical congenital heart defect when she had to return to work. Now we'll turn our attention to a Dana Marie Police chie subpoena. Deena Marie Palocci Messina has two daughters, Bree Ella, who's eight months of age, and Arianna, who is nine years old. She has a bachelor's in criminal justice and is a part time photographer. Adina Pregnancy was rough, and she was diagnosed with preeclampsia, which forced her to have to stop working. Bree Ella was immediately airlifted at birth to Miami Children's Hospital. She spent 77 days in the critical intensive care unit. Adina and her husband both struggled with taking off work, especially since her husband is a detective, while Athena stayed by Brielle aside during the long hospital stay, her husband had to continue work in order to maintain the bills and keep a sense of order to their lives. Re L. A. Has had one open heart surgery by Dr Burke and a catheterization or cast procedure by Dr Rhodes. Rhea has technology of hello double album, right ventricle, pulmonary stenosis, an atrial septal defect er a s d a ventricular septal defect or VSD and partial anomalous pulmonary venous return, which is also known as P a p. V. R. She has another open heart surgery and several cabs in her future. Getting back to work and establishing child care has been challenging since the diagnosis of Bree Ella's heart defects. Welcome to heart to heart with Anna Adina. Thank

spk_3:   26:16
you. All happy to be here.

spk_2:   26:18
Well, I'm so happy to talk to you. And I'm excited for you to be on the show. Yes, I'm excited to you, Adina. Spending over two months in the hospital. 77 days. That must have felt like forever. I know you had to put your life on hold while Bree Ella was in the hospital. How soon after Bree Ella was able to come home? Did you return to work? And what arrangements did you have to make for a re l. A. At that time? Crimes being

spk_3:   26:41
pregnant? I was a paralegal for four years at a law firm, and unfortunately, my presidency was very difficult. Many times we weren't even sure if the pregnancy was even going to last. I was on strict bed rest. Several times throughout the pregnancy, I had a few hospitalizations is well, I developed preeclampsia, which led to my water breaking Embry. Ella even came early. But not only was she a heart, Phoebe, she was also premature. So that led to more time in the hospital. Like you said, 77 days. And since we re l. A was a fragile state. At that time, I wasn't even able to go back to a career I had do stay with her basically that entire time because I was also Breck feeding. So that led to you being by her side the entire 77 days. It would be an hour away. So I would drive in the morning at 6 a.m. Down there and I would stay all the way up till midnight and drive back home.

spk_2:   27:37
Oh, my goodness. That must have been so stressful for you.

spk_3:   27:40
Yes, it was very frustrating, but you've been worth it. I had to pin a lot on hold with my career, but making sure she was stable and have a good life was very important to me. Especially with being in the situation we were in

spk_2:   27:57
sure now You said you were breast feeding her. Were you actually able to take her to your breast or were you having to pump? And then they fed her through a feeding to uber. They fed her with a bottle?

spk_3:   28:07
No, I put her to the breast. I was very big on breast feeding, and it was very important to me as I did it with my nine year old as well, when she was a baby up till about a year and 1/2. So that was the first thing I was very concerned about. That was one reason why I wanted to take off so much time. My crew is still. I was able to breastfeed and make sure that she got proper nutrition while she was in the hospital.

spk_2:   28:32
I just did an episode recently on breast feeding, and we talked about how important that is. So it's nice to hear another mom who was able to successfully breastfeed her complicated child with a critical congenital heart defect. So how premature? West Bree Ella Ella was

spk_3:   28:47
born at 35 but he was not super tiny. She was £5.9 ounces when I went down to £5. So she was a decent size was being premature.

spk_2:   28:57
Yes, that's actually a very good size for a premature baby. And five weeks while early isn't too critical. It sounds like she was able to overcome the fact that she came that early and and she had the strength to breastfeed, which is just awesome. Yeah, she did very

spk_3:   29:13
well. We had minor bunks, nothing severe. During the long 77 days. She was on oxygen off and on. Other than that, it was a waiting game. I basically wasn't ableto work. I has been having returned to work because the department would not in hand and 77 days off, Unfortunately, crying years. And he can't say sorry. Your house had a burglar here. I have a baby over here. So one of us had it pick up the slack and he returned, and I stay with her. And then my mother in law helped with our nine year old. Luckily, we had her in December, so there was no school.

spk_2:   29:51
Mmm. Luckily, and yet that must have been unbelievably difficult to leave your nine year old day after day not knowing how many days you would be in the hospital with Brielle, not knowing if you would eventually bring a baby home,

spk_3:   30:04
right? It was very stressful for her, too. Well, not knowing what was going on with this like it's a Jew nine, and it's a very un explored, a situation for her as well. She's a beauty with this situation as we are. That was hard to tell her what's going to occur.

spk_2:   30:20
It sounds like having Grandma. There was a bit of a comfort for her, and she didn't have to go to school and be worried she was right there with Grandma. Could probably pick up the phone and call you if she was nervous or anxious about anything. Yes, it was

spk_3:   30:34
great to have my mother in law help with us. And whenever my daughter was feeling a little insecure about the situation or uncomfortable, she would just pick up the phone. And we did a lot of times that she could see her sister and sergeant. When my husband was not working, he would bring her over so she could give it.

spk_2:   30:52
Oh, I didn't get how long it was before you actually did return to work, since, um,

spk_3:   30:59
I had re L. A. I did not go back to working back at the law firm. I've been doing part time photography. I've worked with major companies like Lacroix, Water and other large firms doing advertising here, and they're all doing a couple gigs on the side. When I do leave Bree Ella, I leave her with my mother in law. You're lost. Collard brought up, agree and point about wanting to have somebody qualified CPR. So that's probably something I'm gonna have my mother in law you now, because I think that's very important. But other than that, I haven't found, really, if you consider yet because she's only now Eternity month yesterday.

spk_2:   31:36
But your mother in law obviously loved her, and it's probably very attuned to what is normal for Bree Ella and when she should be concerned.

spk_3:   31:46
Yes, he is. And most of the time, my daughter is also home. I kind of helped her understand the things that are important with her sister. She knew at the time when Gabriella was all her medications, every dose of medication, thio what she needs fine to look for for, like, blueness, breathing heavy anything that she needs to know to also assist my mother in law species. Something was to be forgot, and they kind of worked out of a great team. Whenever I need to step out of the house for something I need to do with work,

spk_2:   32:18
absolutely. It sounds like you're using a team approach, which is really awesome, and it's really empowering to both your daughter and to your mother in law that you trust them and that you trust Bree Ella. I think that's one of the things that's so hard for a short mom is to let go of that fear that something might happen if we're not right there and to trust it, somebody else who loves our Children will be there and we'll do the right thing now. Before I was allowed to take Alex home, I had to do CPR, and since Alex was going to be staying with my mom part of the time, they made my mom do the CPR classes. Well, it doesn't sound like that was a requirement for you and for your mother in law.

spk_3:   32:56
It was a requirement for myself. When I left, I had a watch, a long video and learn PR well, and then they actually make me test. Since my husband is law enforcement, he already knows that in the certified. So all you had to do a show, a little card and get re certified regularly with the police department. That is definitely a requirement. Both of us were fine. However, at the time, we weren't thinking Okay, now what are we gonna do when we get out of the hospital? Who's gonna watch their child when you go into work? So now we're just getting adjusted and she'd go at such a young age. So now that's something that I think is very important and something I want my mother in law to do. So in case something worked happen, she would know how to handle the situation. And I'm probably going to even consider having my nine year old learned here as well. I don't think that there's a JJ where life saving skills should not be learned.

spk_2:   33:49
I agreed to 100% my boys when they were in Boy Scout learned that, and I agree. Nine years old has certainly old enough, especially given her situation where she has the sister who is medically fragile I think they're smart enough to be able to do it. And you know what? Sometimes kids react better than adults do because they don't have the same fears that some of us adults have. So I think that's brilliant. I really think that would be something that I would want to do as well. What advice would you give to parents who have to return to the workforce and you have to leave their child with a baby sitter or a mother in law or somebody other than themselves? But they could be turned to work. I wouldn't be

spk_3:   34:27
sure that everyone that you're planning on leaving your child with is qualified and things like CPR and understand the things that come with congenital heart defects, the risks, the precautions that are needed, the medications. Like I said, my nine year old knew all the medications that need to be distributed at the time when Gabriella was on them. It's important for caregivers to understand that there are some things that you need to walk out for and that the situation could be very risky. So it's not something that oh, here's the baby, watch the baby and everything fine. You have to kind of watch for certain things. Yellow was on a monitor for a little while, and I know that it was important to make sure she wasn't thief, adding and watch her heart rate and such after

spk_2:   35:09
she came home right, I think teaching them how to use those monitors and knowing what the numbers mean, that they don't freak out if it's something that's normal for our kids. But would it be normal for somebody who doesn't have a heart to fed? I think that's very good that they have to have training. Thank you so much A dinner for coming on the show and for sharing with us. Now it's time for a commercial break. But don't leave because we will be having our time in the studio together later on, with all of the mom's coming up. Next, we have a heart mom who's a mental health counselor, and we'll find out about what special child care situation she created for her PhD survivor when we returned to heart to heart with

spk_5:   35:47
Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event, go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHP community. Visit Heart to Heart with anna dot com today.

spk_2:   36:18
Wear talking with Heart Mom, Amy Bennett, a Deena Marie, Police Masina and Don Silverman. We just finished talking with Amy and Adina Marie about their experiences having to return to the workforce and how to find child care for their CHD survivors. And now we will turn our attention to Don Silverman. Don Silverman is a licensed mental health counselor, a freelance writer and a full time mom to three Children. Cameron, aged 14. Leah, aged 11 and Caden, who is five years old. Caden was prenatally diagnosed with hypoplastic left Heart syndrome, or Rachel HS. He has undergone three palliative open heart surgeries at Miami Children's Hospital, and we'll be starting kindergarten in the fall of 2014. Caden is lucky to have had all of his grandparent's living nearby. So he has had trusted baby sitters who understood his congenital heart defect and any potential warning signs. Kate and spent two and 1/2 years going to preschool don't have a facility where the director was also a licensed nurse, so his teacher started off the year nervous. They became much more comfortable with Kate, and they became or educated about a jelly chest and thought how strong Caden was. Congenital heart defect advocacy has become very important to dawn. She is pursuing her PhD in psychology and is currently writing her dissertation on the pregnancy experiences of mothers whose babies have been diagnosed with single ventricle defect. Thank you for coming on heart to heart with Anna Don. Thanks for having me and so excited I am to Boy, we're talking a lot about hohs today. It seems like so many of my contacts are moms who have Children with HHS, and Caden is five, which is just awesome to hear that he's doing so well at this age already.

spk_6:   38:08
Yes, yes, no, you'll get me to cry. Yes, wonderful. And we've been very blessed with his treatment and his presentation of H. L. A chest. He's had a fairly young, complicated history.

spk_2:   38:22
It really is nice when they make it to age five. It's almost like that's a miracle Mile stones because once they make it to that age, they seem to do much better. And they don't have impending surgeries on them like they do in the 1st 5 years. Exactly. Don, it sounds like you were very lucky to have family members who were able to care for Kate in after you returned to work. Did your family members have to go through any special training?

spk_6:   38:46
Our family had to get through the CPR training when Kevin was released from the hospital. My mother was a preschool teacher, so she had CPR training way back in the day, so nobody actually had any particular training in that realm. But I made it a point that at the very beginning my mother came along with me to all of Kayden cardiology appointment so that she would learn the lingo. She would learn the signs. She would understand what things meant. So if he was left in her care and there was an emergency, she would know what you need to tell paramedics what to look for, who the doctors were. And it was important to me that she had a relationship with them so that if I couldn't be there, they would know who she waas on. Be able Thio, Communicate with her,

spk_2:   39:34
right? She could speak with authority on what right had been through and what diagnose this was and what medications he was on. That was brilliant. And I do think it's so important for other people who might be taking care of our Children to know what their diagnosis is. You know what kind of medications they're on to know. This little bit of blues that's normal. Wait a min raise. It gets much worse than that. That's a sign. That's fine. It may need some help, and I think that that education and also empowering them to be knowledgeable and to know what to ask is so important. Yeah, I think

spk_6:   40:09
that was important to her as well, because it made her feel more comfortable and capable taking care of him when she became educated about what to look for. And I think it is her anxiety so that when she did baby sit him. It was a more enjoyable experience because she could focus on him and not be so anxious about. Oh, is he breathing too fast? Is he getting enough hydration? She wasn't having the focus as much on those things because she kind of knew what they were to come up. That's when she'd have to address it. So it made it better relationship for them as well, so she can focus on having fun with him when she would watch him. So that was another positive thing that came out of her. Becoming educated is that it allowed her to have the more quality time with him.

spk_2:   40:57
Well, in a more normal grandma, right baby, really relationship. You know, I think, Don that that's something that really is not talked about match. And that is how having a chocolate, a congenital heart defect, has this trickle down effect and affect the ants, the grand parents, cousins, the siblings. Of course, it does affect everyone in the heart community in your heart community, and the more we educate each other, the more weak share that information, the more were empowering our other caretakers, other loved ones in our environment, sometimes if friends It's not even people that are blood related to us. But when we educate and we all learn together and we share that information, it really does empower us to all have a more normal with each other. Don't you think that's true?

spk_6:   41:49
Ideo, just as important to our family, was to give Kaden as normal quote unquote Ah, bringing as possible and as much as we can. We don't let his h l h has become a defining factor. Who he is. I look at it that yes, he is a heart child. But he is a boy who happens to have a heart condition. And we tried Thio Keep that in the background unless it needs to be brought to the foreground. So it was very important to us to raise him that way. Thio not give him that quote unquote special treatment unless he needed it. Because he came into a family already with two older siblings who treated him just like they would have treated Ah, heart healthy baby. They didn't know any different. He didn't know any different. And although they were stressed with having us away when he was in the hospital and things of that nature. You know, we really tried to not make that the focus of who he is. And I think education becomes very important with that. When you're educating your family members, you're educating teachers. You're educating your friends. Once they understand what this PhD means, it puts everybody at ease because it's not like that big gray elephant in the room once you address it, if you explain what it means that what to look for and that you don't have to tiptoe around him and you don't have to worry if he falls, it gives everybody that sense of comfort that once they understand it and they know what to look for, they know they don't need to be freaking out about this. But perhaps they should be freaking out about that. If that happens,

spk_2:   43:20
Don I absolutely love that. That is so perfect for every heart parents know, especially if you're pregnant with a baby that you know is going to be born with heart defects. We can lead a fairly normal life. I know it's not normal compared to people who don't have Children with heart defects, but you're so right. It doesn't have to be the elephant that everyone tiptoes around. You are so right. Education is what empowers everybody. What I have seen, too is that those we accept that education and those who listen to what we're telling them. I'm sorry if Alex falls down or Caden falls down or Brielle Awful event. They're gonna bruise more because they're on baby aspirin don't freak out over that. They will bruise more or they will bleed more because they're on anti coagulants and this is totally normal. You don't have to freak out. However, if they fade, that's when we need to do something. You give them the signs and signals to let them know when they should freak out over something and when they shouldn't. And what I discovered Waas. There were some people who couldn't handle that. I'm it. Those were people that we just didn't spend much time with. And the people who did feel empowered by that and who did learn to accept that and move on with it got to be part of our lives, and we were able to a sam a more normal relationship. Yes, that's

spk_6:   44:35
so funny. You said that about the aspirin because that is the one line I have told every teacher thus far that if you see him come in with 1000 bruises on his legs, please don't assume he's getting abused at home. This is all the bruises, very easily. You get concerned when you see a child and they have 15 black and blue marks on their leg. You think what's going on? They're so again it comes down to education. And I think with anything. The more people understand something, the more empowered they feel on, the more comfortable they are, with whatever challenge they're presented

spk_2:   45:09
with. Well, I love how you and Amy both had really special circumstances for when you first left your Children in a situation where they were not with you. And you actually found a preschool that had a licensed nurse. But that's something you sought out. Or was that something where you're angels were watching over you? Like I think it is. Yes. When you were talking

spk_6:   45:31
about that with the angles because I have

spk_2:   45:33
22 stories

spk_6:   45:34
with this and that that is we looked around and I didn't want to put him in a preschool that was closer to her home and the preschool that he ultimately ended up going to is the one that my other Children went thio. And that was because the director was a licensed nurse. I felt I needed more than the teachers just being CPR trained because so much with this condition is if you can catch some of the warning signs ahead of time, you can prevent something from getting worse. And I felt that teachers that were just CPR trained. That's great. God forbid there was an emergency. They can do CPR. But if there was an actual nurse on staff, she might be able to look at him like you know what? I don't like the way he's breathing. He's looking a little bit gloomy. Let's intervene before it gets worse. So it turned out that I was aware of this preschool because it was where my other kids went. It just it was further away from me and not as closing at the other one I was considering. And a friend of mine had told me Well, you know what at the end, the day it's closer to the hospital, so you would rather the paramedics get there before you get there, they're the ones they're gonna help. That was my debate with the distance, but I did feel that having the nurse there was more of a benefit. And we just found out now that the nurse at his kindergarten where he will be going to school next year I used to be a c I C. U nurse at the hospital where he had all of his surgeries. So I think they're the Angels were working with these kids and never surprises me when you hear stories like that seems to fall into place sometimes with these kids that the right people are there for them at the right time. So, yeah, I think that there was some divine intervention there to some level. But that was important because I think with the free schools that they knew me as a parent and they knew that I would not have been bringing Kate in there for school and their care if I didn't feel he was well enough to be in that betting or if it was not the appropriate setting for him to be in. There was already that kind of built in trust between me and the director of the preschool, which helped make them feel more secure as well, because they would know that I wouldn't be putting him there if I felt that he was too much for them. The handle in the sense,

spk_2:   47:44
right? So once again, just like with Amy, there's a family history. There's a certain amount of comfort that you feel when they already know your family,

spk_6:   47:53
right when they know you as a parent and respect that and know that if I'm telling you yes, he's going to be fine, you're more likely to worry about this than that that they would take that at my word and believe that and know that I'm not just trying to say that just to get him into the program,

spk_2:   48:08
right? And I think also what you just said about respect that is so important you already had that relationship established. So you weren't trying to build respect with them as you were leaving your son. You already had that relationship established, which makes things that are complicated, such as leaving a child who is medically fragile, a little bit less complicated because at least they know you. They respect you and they know how to get ahold of you if something does go wrong, right? And his

spk_6:   48:34
teachers, for each of the year that he's been there, they were all nervous at the beginning. I tried to explain to them that on paper it sounds a lot worse then how he presents in person. But of course they were nervous, and I would get the reports every day. When I kept asking them if he wanted to drink, it kept acting in this, you know, he was breathing a little bit math, but they were so nervous, and I felt like I had to sit there and it's OK, it's OK and Kate and would come home from school and tell me Well,

spk_2:   49:00
my teacher cheat telling me to drink, and I tell her I'm not so he can

spk_6:   49:06
advocate to some degree of himself. But it was funny so that that was comforting to me because at least then I knew the teachers were paying

spk_2:   49:12
attention to

spk_6:   49:13
those things because he was complaining about that. It gets so nervous. But then, as the years progress and they would see him out there running with the other kids and him being fine and him. He keeps up his peers about any problems. So they felt he assimilated into the class and became a more normalizing experience for them and for him. And by the end of the year again, it was the same idea that they were aware there was no, this is up in the classroom, you know, with his picture and his information in case there was a problem. And there was another teacher in the room who didn't know him. There was a place that this is his picture. This is his condition. This is who you need to call. But other than that again went into the background. And this let him be a regular kid in a regular preschool class. And that's what I want is apparent. I respect that Nurse Erinn moms with Children who have these conditions that their Children can't have that because maybe they're more immune, compromised. There's other issues going on, but we were in the situation personally for us that that was not Cadence history. So it was important to be is regular and normal as it could be, unless it needed to be the focus of attention we didn't want the DHD being who he was,

spk_2:   50:24
right, Right, Right There wasn't the focal point. Well, it sounds to me like you and Kate in empowered those teachers, and this is what happens with all of us in the heart committee. Anyway, we were all learning and growing together, and the more they want no shade in. And he was able to be a vocal advocate for himself, the more comfortable everyone became. Yes,

spk_6:   50:44
definitely. And that's why again, I saw firsthand how important it is to teach and educate and advocate for th these people are aware of these, and Caden does like to share part that he understands so and his teachers were always so wonderful about that and really encouraged him when it was show and tell time and what the letter was. Eight. He talked about his heart and brought in pictures of the helicopters and life flights and hospitals. And whenever he had the opportunity to do something like that, his teachers were always so wonderful to reinforce that and help the other kids in the class asked the right questions so that they would start to understand, even at such a young age and appreciation for the fact that Caden has had to go to the hospital, had surgeries and he does have a special heart. So even his little classmates were learning this information to So is empowering on so many different levels. So many different people. We're learning from what he had to share. I need to see how someone so little could still start. Thio, advocate in power even young kids his age.

spk_2:   51:46
I love that story. Dawn. That's just awesome. That's exactly what parents of babies are women who are pregnant who are told that they're gonna have a baby with a heart defect. That is exactly what they need to hear, that their Children can be strong, that they can speak up for themselves, that they can let other people know what's going wrong. And I think that's just so critical that we teach them from the earliest age possible that they can be advocates for themselves and that they can speak up for themselves and people will respect what they I think that's just so critically important.

spk_6:   52:20
I agree, I believe it, and I said there's a lot that we can't I think it's heart parents expect the world to cater to us and our Children that our Children need to grow up in this world. And they need to learn how to work within the world and advocate for themselves and can't expect everybody to come to them that the responsibility will ultimately rests on them. Thio function in the world that we're in So teach the Children those skills Early duck again. Another important thing. One of the things that my husband I do value when it comes to all our Children. But especially with cadence,

spk_2:   52:55
Right, right, right, really, for all of our kids. So I like that because there are Children who have diabetes or Children who have epilepsy. There are Children who have other health conditions where they too need to know what is normal for them, what medications they leak, what their condition is and how to be an advocate for themselves. We're seeing this more and more and more with autism coming to the forefront. A d h d. There are so many different conditions. Were Children do you have to have medication and they do have to have special considerations that it really is our job as parents to empower our Children and teach them how to be advocates for themselves. Well, then I have a question for you because your son is much younger than my son. My son will be 20 this month and open in about 14. Yeah, way back. When? Almost 20 years ago, the doctors discouraged me from putting Alex in day care because they said he would be exposed to too many germs and that that would force him to be put into the hospital more often. It doesn't sound like that was a concern of yours. Did you have any problems with him contracting more illnesses since he was around? So many little Children? No,

spk_6:   54:04
again. I think there's angels involved. But we were careful between his 1st 2 surgeries because that was the time where it was most critical that if he did catch a cold or anything, that it would be more of an issue. But he didn't actually have his Glenn, which is the second palliative surgery that these Children go through it. He had a Kawashima, which same idea, but just different anatomy because of the way he was set up. But once he went through that surgery. And even before that we tried to be realistic about the germs. But before in a second surgery, he was actually flying on Dhe. Even now, he's then so many different places. You've flown all over the East Coast. We're flying to Europe in a few months of him, so we were not discouraged with the germs. I did get freaked out certain times when certain illnesses did come into the classroom that I hadn't heard of. But I remember sitting with his cardiologists discussing whether to put him in preschool, And I was gonna wait six months and start him in six months later and she looked at me and she's like, Well, why are you waiting? Until then? I'm like, Well, I don't know, maybe because it will be six months older. And she looked at me and said, The heart he has now is the heart he's gonna have for the rest of his life. Nothing is gonna change between now and six months from now. So if this is something that you want to do for him, and you feel that this is the right course of action and you want him in a preschool setting, then don't use his heart as an excuse not to do it. And it was very empowering advice for May. And I spoke Thio cardiologists who happens to be a friend of of ours as well. And he told me the same thing. He's, like, gone. Payton has a heart issue. He doesn't have an immune problem, so his immune system works fine. So I sent, um, and we've been lucky and again knock on with other than one Sinus infection and the very beginning battling of pneumonia, which were not even assured. That's what it was treated it as such was the only time since cadence and born that he had any illnesses. So he hasn't even had a near infection, a major called in his class. This year. There were, I think, eight different cases of headlights. There was fifth disease. There was foot, mouth and hand disease, everything that you could think of. And Caden was fine, so I think he's got a mean looking out for him. But, um yeah, that it's hard for me. I hear those issues and those concerns so often by so many of these moms about the germs and afraid to take their kids places on, afraid of them getting sick. But it's been a non issue for us, and maybe if he had been sicker, I would have a different opinion about that. But for him, it's not held him back and we've let him go and this gets a cold. I guess we'll have to deal of it. You didn't see what happened. Yes, and I think that a lot of it is just for attitude because he had older siblings at home as well. You can only control what comes into your house to a certain extent, and I could have kept him in a bubble. But that wouldn't have taken away the fact that his brother and sister were coming home from school every day with their medical germs. So we had to be realistic for our family and realize this is the reality of what's going on. So they're gonna be germs in the house, and again we're gonna have to work. And let's hope it's not gonna be a problem. And luckily it wasn't but again like you said, it's important to make that distinction, that he was purely cardiac and there wasn't other issues involved. So it's not the case for every kid who has these defects.

spk_2:   57:41
Yes, well, believe it or not, it is time for us to take another commercial break, and they will be back in the studio. Thank you so much for coming on. We'll be right back after this commercial break

spk_0:   57:53
takes this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy, my father promised me. A golden dressed twirling held my hand and asked me where I wanted to go. Whatever

spk_1:   58:07
strive for conflict that we experienced in our long career together was always healed by humor. Heart to heart With Michael, please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments.

spk_2:   58:22
Welcome back to our show. Heart to heart with Anna Chauffeur, the congenital heart defect community. Today we're talking with heart Mom, Amy Bennett, Adina Marie Delucci, Tina and Dawn Silverman. No, I don't like to thank Dr Door Breen. Rosen struck for her advice and consultation on this issue that I used in the introduction to the show. Well, ladies, we're all in the studio together and we only have a minute or two. Amy, now that you've heard me talk to Adina and Dawn, do you have a question for these ladies, or is there any parting comments that you would like to leave us with?

spk_4:   58:54
This has been so fascinating to listen to everybody speak. I'm so grateful for the opportunity for us to network like this and fight better options for our Children.

spk_2:   59:02
Well, I appreciate you, Jamie Adina, Did you have a question or a comment that she'd like to make a really nice to be

spk_3:   59:08
with us here? Everybody's story. It's kind of giving me a lot of information for the future, since we've only had to deal with babies. It is on what route we plan on going with daycares schooling and her information has been very helpful to me. Today on the show.

spk_2:   59:22
I love that. All right, Don, you're the last one. You get a heck of a day. I think

spk_6:   59:26
that this has been a wonderful opportunity. I think it's so important to hear the different stories and different people's point of view to realize that there's so many different opportunities that their disposal just depending on where they are in their journey and their health.

spk_2:   59:40
I love that There is so much hope for our Children who are born with heart defects today. Ladies, you have been awesome. Thank you so much for coming on the show. And unfortunately, that concludes this episode of heart to heart with Anna. Please come back next week on Tuesday at noon Eastern time. Until then, please find out like a Facebook. Check out our website heart to heart with anna dot com. And remember, my friends, there is hope.