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Hope for Parents of Premature Babies

Air Date 02/17/2017

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Blogger and author Kayla Aimee discusses her experience with giving birth to her micro preemie daughter who was born at 25 weeks, and describes how, in the midst of her fears for her baby's survival, her faith and marriage were strengthened.

Episode Transcript

Opening:

Teaser:

Kayla Aimee: I felt very numb. Like I said, it happened so fast. It was a lot to process and I felt a little bit abandoned by God, like I'd waited so long to have this baby. I was so excited to be a mom and as soon as I saw her, I loved her so much. And then she was just taken away and I didn't know what was gonna happen to her.

End of Teaser

John Fuller: That's Kayla Aimee and she's our guest today on "Focus on the Family" with your host, Focus president and author, Jim Daly. Welcome to the program. I'm John Fuller.

Jim Daly: John, today's program is gonna be a powerful reminder that life and every breath we take is a miracle from God. On this side of heaven, we don't know why some live long lives, some live shorter lives. That's probably one of the most difficult questions confronting us as human beings.

Kayla Aimee has a powerful story that you're gonna lean into I think. She's a compelling author, a speaker, writer, blogger. And she will try today to help us answer those questions, "Why God?" And you can fill in the blank.

John: Yeah, Kayla is a self-proclaimed "spirited Southern girl." I noticed (Laughter) in your bio you said you like sweet tea, so that places you're definitely in the South. And she's written a book called Anchored: Finding Hope in the Unexpected and you can find that at www.focusonthefamily.com/radio.

Body:

Jim: Kayla, welcome to "Focus on the Family."

Kayla: Hi, thank you for having me. I'm excited to be here.

Jim: Let's start with a word of hope. I mean, that's a good place to start as believers particularly. But speaking to that person who right now has a faltering faith because of circumstances they're goin' through. I don't know what it will be, maybe a divorce. It could be a prodigal or it could be health issues like you faced in your family. What does hope look like to you?

Kayla: Well, you know, we took the title of the book Anchored from Hebrews 6:19, which says, "We have this hope as the anchor for our soul, firm and secure." And so, for me it really came out of a time in my life that was so chaotic and so overwhelming with this fear and anxiety and not understanding what was happening, not being able to really process what we were going through.

And the only thing that was constant in the middle of all that was that God was unchanging. That was the only thing that didn't change when everything else in my life was kind of falling apart.

Jim: And I think for the person that doesn't know the story yet, we're going to unpack your story, but for that person who is saying, "Well, she sounds like a hopeful person," let's get into your story. You and Jeff, you got married. How old were you when you got married?

Kayla: Twenty-three, we were babies.

Jim: Twenty-three, babies, that's normal isn't it? We were 25. How old were you?

John: I was 25 when we got married.

Jim: Yeah, I was 25. Boy, they're marrying younger nowadays, John.

John: Lots [are]. (Laughter) A lot [are] gettin' married at 19 and 20, yeah.

Jim: In that context, did you think about having kids right away? Or were you waiting? Did you even plan it?

Kayla: We had an interesting situation, because I had been told before we got married that it was very unlikely that I would be able to get pregnant. So, we didn't know what our future with kids looked like. We hoped we would have them. We thought that if they came, we would be so happy.

But she was a little bit planned but unplanned. She came at a time we weren't quite expecting it, but we were really happy because, wow, we managed to get pregnant.

Jim: That might explain why in your book you refer to pregnancy tests as cereal box toys. I think your husband, Jeff had to kinda restrain you from buying these things too often.

Kayla: Yeah, they're not cheap.

Jim: Yeah, right, were you stocking up on pregnancy tests?

Kayla: Yeah, you know, when you want to see a positive plus sign, it's so enticing, right? You just keep taking them and maybe next time, right? (Laughter)

Jim: It's like you're a winner.

Kayla: So, yeah, they really are like these little happy moments for women, except mine were always not blue, giving me the answer I wanted.

John: So, month after month you've got that disappointment.

Jim: Except this particular time it was positive and now you're pregnant.

Kayla: I was, yeah.

Jim: And that'd be exciting.

Kayla: I took a bunch to make sure that time, too.

Jim: Yeah. (Laughing)

Kayla: I broke my promise.

Jim: Poor Jeff, havin' to buy these.

Kayla: --I broke my promise.

Kayla: I was like, "I'm sorry; I took all the pregnancy tests, honey."

Jim: Yeah, you'd buy the whole stock full. So, you're pregnant. You and Jeff are talking about it. Things are going relatively on course, right? You were normal in the first trimester, maybe a bit of morning sickness?

Kayla: Yeah, I was very sick. I had a lot of morning sickness, I was happy to have the morning sickness. I was so thrilled to be pregnant. But yeah, I had a completely normal pregnancy.

Jim: Then somethin' started to change. What was goin' on?

Kayla: There was just one particular day I just felt off. I didn't really have a lot of big symptoms or anything like that. And Jeff and I were in the car driving home and it was about 15 minutes before my doctor's office was set to close. And I was like, "Honey, I think I need you to swing in, just for maybe my peace of mind, but I don't feel right.

Jim: How far along were you at this point?

Kayla: I was 24 weeks pregnant.

Jim: Okay.

Kayla: So, not quite past halfway through.

Jim: So, you did go to the doctor's. What happened?

Kayla: So, just going in and I said, "You just stay in the car and rest. I'm sure they're gonna tell me I'm being anxious." And I went in and I said, "I don't know what's going on. I just feel off. Can you check me for my own peace of mind?" And my doctor said, "Actually you're in active labor." And you need to go straight to the hospital. I'll meet you there and you might be having the baby."

Jim: That had to kind of shock you.

Kayla: I was completely shocked. I didn't even know that could really happen.

Jim: Right.

Kayla: Like I didn't know that people had babies that early or if they did, I didn't know that those babies could survive.

Jim: So, you got to the hospital and now you're giving birth to a micro-preemie.

Kayla: Right, so they came in at that point, 'cause I was 24 weeks and that is the cusp of viability, where you as a parent and the doctors talked about, "Do you want to resuscitate the baby when it's born? It probably won't breathe on its own."

Jim: You know, think about that. You're saying that rather quickly because you've gone through it now, but in that moment, that had to be horrific, because here you are giving birth to your first child and yet, the doctors are having to tell you, do you want to resuscitate if there's a problem, which there will be a problem. How far do you want to go? That had to be really conflicting emotions.

Kayla: I think it was so overwhelming, just that all happened so quickly. Our first thought was, you know, yes, we want to try to save the baby. And they managed to give me some medication and that kept me pregnant for a couple more days, so, in the hospital.

Jim: In bed, you couldn't get out of bed I would assume.

Kayla: No, they had me turned almost upside down to try to keep me from having the baby in bed.

Jim: My goodness.

Jim: So, she's born, your little Scarlette, as you named her. Give us those impressions when she's first born. How much did she weigh? What did she look like? Were you able to hold her? What happened?

Kayla: So, Scarlette came exactly and I made it to 25 weeks and I went into labor again in the hospital and that time they couldn't stop it. So, we had an emergency C-section, because she was so tiny that delivering her would have broken her the way she was positioned in my body. So, she weighed one pound, 8 ounces, so she fit in the palm of a nurse's hand and she was so small that her arm was the size of my pinky finger. Her fingernails were the size of a grain of rice. She did not have a fully-formed body. Her ears weren't formed yet. They just were like little holes on the side of her head. Her eyes were fused shut. She didn't have eyelashes. She didn't open her eyes for a couple weeks.

But she's still just this perfect tiny little person and I did not get to hold her because they needed to work on her right away. So, they brought her up and positioned her on a scale right next to my head and let me see her and then they took her away.

Jim: I can't imagine all the emotions going through you and your husband, Jeff at that time. Help me. Help all of us feel what you were feeling. I mean, were you saying at that point, "God, where are You?" Or were you just in the mode of coping and trying to say, "Okay, how do we get through this and what's the prognosis?" Did the doctors say she had a 50-50 chance? Or what was goin' on?

Kayla: Yeah, she had about a 60 percent of survival and then they told us that she was very likely to have either a lot of disabilities or be blind or deaf. So, we knew we were looking at a very, you know, difficult time going into that.

I felt very numb. Like I said, it happened so fast. It was a lot to process and I felt a little bit abandoned by God, like I'd waited so long to have this baby. I was so excited to be a mom and as soon as I saw her, I loved her so much. And then she was just taken away and I didn't know what was gonna happen to her. So, I was just kind of left there. I wanted Jeff to go be with her, so I asked him to go to the NICU with her, so I was laying there alone in the delivery room, just thinking like, "I feel so alone right now. I don't know where God is in this."

Jim: So, literally in just a few hours, I mean, you go from this probably strong relationship in Christ, this belief in God. Then you have this difficulty and now questions start to arise and they didn't abate. I mean, you now go into months of languishing, not knowing. Move into that period of time. How long was Scarlette at the hospital?

Kayla: Scarlette was in the NICU for almost six months.

Jim: Every day, I mean, you never brought her home.

Kayla: Yep, she never even went outside. She didn't even get her first breath of fresh air.

Jim: She was in an incubator, correct?

Kayla: She was; she was in a little incubator. She was in critical condition for about four months of that time and she was a little over a month old before I was even allowed to hold her.

Jim: I can't imagine living in that moment with that kind of tension, really that you're expecting your little one to pass away and you're just hoping the next ding will occur.

Kayla: Right.

Jim: I mean, that is intense.

Kayla: It was. It was very heavy. It was a very dark heavy time and it really showed me, I think, how very fragile and how very beautiful life is, you know. I was so thankful for every moment that I had to spend with her, because I didn't know when my last moment with her was gonna be.

Jim: And you're kind of probably feeling guilty in some ways, even having to think that maybe she won't live.

Kayla: Right. I felt like maybe it was my fault.

Jim: Yeah.

Kayla: You know, like I was her mom. I was supposed to protect her and so, delivering her early brought up a lot of feelings of guilt.

Jim: Is that a common feeling for women who have issues in delivery and with the child maybe born with special needs or something, that sense of guilt. If I had done something differently I may have been able to love my child more so or prevented this? You felt that.

Kayla: I think so. Even if you don't have a preemie, I think as a mother, it's a little bit ingrained in you to sort of feel like, what can I do to give my child the best chance and the best options? And could I have done something differently, no matter what the circumstance is.

Jim: I mean, for you, too specifically, because your situation was, you just simply as a mother couldn't carry your baby to term, that must have added some guilt to it, like a defect in you was creating this.

Kayla: Right, I felt like my body was broken, you know.

Jim: Yeah. How did you reconcile that? How did you pray? How did you seek the Lord to say, "Lord, why are You lettin' me down? Why am I letting myself down? Why am I letting my baby down?"

Kayla: Yeah, I was a little angry about it. I felt like the Bible says, "You're fearfully and wonderfully made." And I thought, "Well, if I'm fearfully and wonderfully made, then why did my body almost kill my baby?" It was a very raw emotion for me.

Jim: In addition to that, you're in NICU where you're seeing other parents lose their child, right? I mean, that's a very tough area.

Kayla: And that was hard for me, because you would hear the alarms go off and you would pray just instantly, like "Oh, dear Lord, please don't let that be my baby." But then that means that it's someone else's baby and that is an awful tension to live in.

Jim: I can't imagine.

Kayla: So it was just a lot of times trying to live right in that moment and be faithful for those tiny moments, because the big picture was a little too much for me to handle.

John: Well, Kayla Aimee is our guest on "Focus on the Family" today and her story is chronicled in the book, Anchored: Finding Hope in the Unexpected. And we've got that and a CD or download of this conversation at www.focusonthefamily.com/radioor call us if we can help you with these resources or other helps, 800, the letter A and the word FAMILY.

Kayla, you mentioned the tension that you were living with. How was Jeff handling all of this? I mean, your world is spinning. There are so many abnormal things going on. How was he handling the situation and was he asking God questions?

Kayla: Yeah, I think for him is he had this whole other burden, because he had to emotionally support his wife, who's, you know, falling apart over here. And then also the medical bills that we were experiencing were just mounting and mounting. And so, he's the provider of our family, so he had this crushing burden of the medical debt and supporting me and watching his first child and his only daughter go through all of that at the same time.

So, for him it was also a really heavy process and there's not quite as much support for men in that situation as there is for women. So, I think he felt very lonely and alone during all of that.

Jim: I can relate to that. I think, you know, men again, we're just seen as separate from that whole environment of birthing and you know, we just get to be on the sidelines more or less.

Kayla: Yes.

Jim: And it would be hard, very isolated. You're feeling isolated and he's feeling isolated.

Kayla: Right.

Jim: And in fact, it takes a toll on marriages, doesn't it?

Kayla: It does and at the time we ended up having to live separately, because we were at a hospital that was several hours from our house. So, he had to go to work every day, while I stayed at the hospital. I was living there with the baby, so we weren't even together during what was the hardest time for us. So, it became difficult for us to lean on each other. I think we felt like maybe we didn't want to overburden one another, instead of coming together and leaning on one another. And so, yeah, it really was a time that tested our marriage a lot.

Jim: I noticed in your book, you mention a stat that really took my breath away; 97 percent of married couples in this situation don't make it.

Kayla: Right.

Jim: Ninety-seven percent!

John: Wow.

Kayla: It's a lot and I can see why. It's this huge thing. When we got married and we said our vows, we thought like we will face everything that life hits us together. And we didn't ever imagine or envision that what was gonna be difficult was gonna be something that came from us you know, something from the inside out.

Jim: Right, well and also that sense that you could manage it, 'cause in your '20's, you're not thinking there's anything life's gonna throw you that you can't manage, right?

Kayla: Right, yeah, we were a little naïve then.

Jim: Everything's out in front of you.

Kayla: Like we've got this.

Jim: What were some of those things you began to do to rebuild your relationship with each other?

Kayla: I think that we started focusing on trying to make sure we were being vulnerable with one another, giving intentional time to one another and really just almost kinda, "starting over" is not the right word, but coming back together.

Jim: You know, so often as a new parent, you're learning on the fly, whatever that might be. You know, you get maybe Focus on the Family's Baby and Childcare book, (Chuckling) I don't know. But you're trying to learn these things. And in that environment, you must have really struggled on what can you do? How much mothering can I do while you have all these nurses doing so much of it? Did you come to a point where you didn't know what to do? How can I help my child?

Kayla: The beginning was like that, because as a first-time mom, navigating new motherhood, you really don't know what you're doing at all. You're just livin' on a prayer, hopin' that you're gettin' it right.

Jim: Right.

Kayla: And so, when you start that in the NICU process, there's these other medical professionals who have like degrees. (Laughing)

Jim: They know exactly what to do.

Kayla: They know what they're doin'.

Jim: Yeah.

Kayla: And so, it's so very intimidating.

Jim: It has to be.

Kayla: I was afraid I would break her. We had to be so gentle with her. We weren't even allowed to touch her. You know, how you go to stroke your baby. You weren't allowed to touch her like that 'cause it could rip her skin. We only had 10 minutes every four hours that we could look inside the little isolette she was in to change her diaper. And so, they had to teach me how to do those things so we wouldn't hurt her. So, mostly I just sat next to her and read her books. But I felt very displaced in my motherhood. I didn't get to hold her. I didn't get to do all of the things that you do when you first have a baby. So, I felt like I didn't belong. I didn't really know where my fit was.

Jim: Yeah, there was a moment though when you asked the nurse if you could change her diaper. You were shocked by the answer, right?

Kayla: Yeah, she was like, "Honey, you could've been changing it. You just needed to ask, you know. You just needed to tell us you wanted to." I said, "I didn't know. I thought I might break her."

Jim: Yeah. There was another situation where they were missing something with an IV that you noticed. I mean, I would think that'd be very intimidating, where you're challenging the nursing staff and the doctors, but what was that situation?

Kayla: That was one of the biggest lessons that came out of this process for me, was I really felt like God had given me this empowerment during that time and a confidence that I did not have going into the situation. And I had seen that her catheter, it looked like it was bent. And they told me her kidneys are shutting down. She's not passing fluid. She's not gonna make it if she doesn't pass any fluid. And I said, "Well, I think it might be 'cause her line is bent." And they said, "No, that's not what it is." And I said, "Yeah, I kinda feel stupid—

Jim: Right.

Kayla: --like I'm not a medical professional." But then later when the doctor came, I told him, I said, "I just really think that's what it is." Like I have this strong conviction that, that was the problem with my baby, even though I knew nothing about any sort of medical equipment. And he said, "Well, if that's how you feel, you're mom; we'll trust your instincts. We'll do it." And they did it and do you know that, that was the problem and she got better.

Jim: Yeah.

Kayla: And that's not anything that had to do with me.

Jim: But that must have given you a good sense that, okay, now I'm in my role.

Kayla: Right.

Jim: I am the one lookin' after my girl.

Kayla: After that I felt like I had some ownership, you know, like okay, this is my job now is to be her advocate. I can't hold her, but I can advocate for her and I can trust that, you know, I'm being guided in the right direction here.

Jim: Kayla, we've, I think, done a good job painting the picture of what you were experiencing and to a degree what Jeff was experiencing and what your little girl was experiencing. Where was God in all this? Where'd you start that dialogue? When you would sleep on that couch or that little bed they set up for you in her room, night after night, week after week, month after month, were you saying, "God, where are You?"

Kayla: All the time I was. I just kept thinking, I feel like my faith has been whittled down to this one very core thing, which is that God is still here. And maybe that's all I know right now, this one tenet of my faith, that God, when we are havin' a hard time being faithful, He remains faithful to us. And that is kind of what carried me for a while, just knowing that it's okay if I can't handle everything, you know, because in my weakness is when He is strong and so, I'm just gonna be weak right now. I'm just gonna be weak and trust that what I believe about God to be true will be true for me. And then I saw it come to fruition in that.

Jim: You know, Kayla, I think for some listening, they may still be in a bad place, a dark place. They're still asking God, why and they haven't come through the other side or they've come through it and it's not the side they wanted to come through. Maybe they lost their child. I've had a relative go through that situation. What do you say to them?

Kayla: Yeah, that is a hard question, because I think people want to be well-meaning and say something encouraging and helpful. And you know, what I normally try to say to people is, "I'm so sorry that this happened to you and I am praying for you," because sometimes we just need other people to come alongside and do what we can't do. When it's too hard for us to say the words and it's too hard for us to say the prayers, I think it's helpful to know that other people are doing that on our behalf and loving us that way.

Jim: Were there some things that people said that helped you and some things that people said that were not helpful?

Kayla: Yeah, I think people really meant well when they would tell me things like, "Everything happens for a reason," or "God's got this." And I would always think it; I wouldn't say it out loud because I'm a very polite Southern girl (Laughter), in my head I would think, "But I don't like this reason and if God's got this, then why is my baby suffering?" You know, that doesn't answer any of my questions.

But the people who came alongside and said, "I'm sorry that this has happened. How can I help? What can I do? I'm praying for you. I want you to know I'm here if you want to just vent, if you know, what do you need?" That was helpful to me.

Jim: Did you ever feel like shaking your fist at God? Did it get to that point where you were really angry?

Kayla: Yeah, some people sent us some flowers, which is wonderful. Our house was just covered in flowers and everyone was so supportive. And I looked at all the flowers that were on our table and I thought, I can't bear to watch all of these flowers die, 'cause I don't know if my daughter is going to die. And so, I took the vases and I broke them on the back porch. I threw them. I was that angry.

And I think that, that for me changed my relationship with God, because before I felt like my relationship with God needed to be something where I was perfect. You know, I was walking really well in the faith and I was a good girl, right? I was a good Christian girl. And so, that sort of moment of being very raw in my emotion and believing that God loved me no matter what I was feeling, He was there despite the fact that maybe I wasn't reacting in the way that I thought was, you know, a good Christian response. But I still knew God wasn't gonna abandon me in that. It was very changing for me in how I pursued my relationship and my faith with the Lord after.

Jim: Yeah. The day finally came and as you said, they usually only mention that your son or daughter's ready to go out of NICU, just hours before so that you don't have expectations I'm sure. But it happened five months and five days later--all the roller coaster of that. What did it feel like when they said, okay, this is it? In a few hours you can take her home? Did it feel like a relief? Or did you feel scared? Or what did you feel?

Kayla: I felt both. The whole time I just had this dichotomy of emotions where I was like really joyful and really scared, because I realized I didn't really know how to be a mom outside of the hospital. You know, I didn't know how to mother my baby without a bunch of machines telling me that she was still breathing.

Jim: And professionals.

Kayla: Right, I had a nurse that I could call anytime. I was like, "Hey, can you take a look at this?" She's just right outside the door. So, that part of taking her home was really scary, but at that point, we were ready to have her at home with us. I wanted to take her and put her in her room and let her live with us as part of our family.

Jim: And tell us about Scarlette's condition at that point when you're taking her home. You describe when she was born, her eyes were still fused shut. Her ears weren't fully developed. What did you see in her after five months in that incubator?

Kayla: It was really fun to watch her grow. So, I think one of the silver linings of going through this situation was that I got to see her develop outside of the womb, so I was just like this witness to what the miracle of life looks like on the outside, which you don't normally get to see that, you know.

Jim: Yeah, you got to see an inside view.

Kayla: Yeah, so that was really cool. And so, by the time we took her home, she was never a very plump baby. She was still kinda tiny, but she was six pounds. She had a feeding tube and some other little things we took her home with, but by that point she looked like, oh, cuddly little baby.

Jim: So, she was in the right phase really.

Kayla: Yes.

Jim: So, tell us today, how is Scarlette doing? How old is she?

Kayla: She is 6.

Jim: Six-years-old.

Kayla: Yes and she is doing wonderfully. All of the things that they told us, you know, that we should look for, that she was gonna be developmentally delayed, all of those sorts of things have not come to fruition for us. She's a very happy, healthy 6-year-old. We did a lot of therapy when she was younger and now we're out of all of our therapies and she's doing great.

Jim: Would you say your relationship with the Lord, you said it was very different and changed. Are you, in an odd way, are you grateful for how you are having a deeper relationship with Christ, you and Jeff, even though you went through difficulty and Scarlette went through difficulty, as well.

Kayla: Yeah, you would never, you know, want your child to go through something like that, but I think it definitely changed me from a person who maybe followed the rules of religion to a person who had a relationship to the Lord.

Jim: That's a big difference.

Kayla: Right and so, I feel a lot freer in my faith, because I don't feel confined by, I need to be all these things for my faith to be right, because I feel very confident in the relationship I have with God and the love God has for me.

Jim: Kayla, this has been so good. Thank you for that honesty and revisiting something that had to be painful and expressing it in your book, Anchored. This is a great book of hope. Is that what you're hoping for?

Kayla: I hope so. I hope that when people read it, they feel as though that they have someone coming alongside of them. No matter what you're going through, I think you always have those times where we kind of question and so, I hope this is something that will make people feel like, okay, I'm not alone in this. I'm not going through this alone.

Jim: Well, if you're in that spot and you need help, this is a great resource, a great tool and we have counselors who can help you, as well. So, give us a call. We are here for you.

Closing:

John: And of course, there are other circumstances in life that have you up against the wall. Our caring Christian counselors, as Jim mentioned are here and it'd be a privilege to go through some of those questions that you might be asking. Our number is 800-A-FAMILY; 800-232-6459 and you can find resources and help and you can actually connect with a counselor in your own area through our website. That's www.focusonthefamily.com/radio.

And by the way, if you can make a generous financial contribution to Focus on the Family today, we'll send a complimentary copy of Kayla's book to you. It's a great resource, as Jim said, for you or for someone you know and love.

Well, thanks again for listening. On behalf of Jim Daly and the entire team here, I'm John Fuller, inviting you back when Joanne Kraft addresses the issue of busyness in your family.

Clip:

Mrs. Joanne Kraft: We speak in the language of busy. We would meet each other and say, "Hi, how're you doin'?" And then we start using that word as if it was something of value. You know, "Well, I'm so busy." And then we start playing busy-mom poker.

End of Clip

John: "Busy-mom poker," where you're trying to one-up each other with that busy language. Well, Joanne will talk more about giving your family a break, Monday on "Focus on the Family," as we once again, help you and your family thrive.

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Guest

Kayla Aimee

View Bio

Kayla Aimee is a writer with a poignant but humorous storytelling style that has established her as an influential faith and family blogger whose work has been featured on the TODAY Show, HLN and The Huffington Post, as well as several other national media outlets. As the mother of a 25 week micro preemie, Kayla is passionate about sharing stories of embracing hope in motherhood and offering support to parents. She is the author of Anchored: Finding Hope in the Unexpected, a must-read book for anyone who needs a little encouragement and laughter in their day. Kayla and her husband reside in northern Georgia with their two young children. Learn more about Kayla by visiting her website, www.kaylaaimee.com.