There really are no words for the love and support and prayers we’ve felt over the past few weeks. It brought me so much peace knowing how many people were saying prayers for our sweet girl.
There are also really no words for what Nick and I are going through. No parent should ever have to suffer through losing a child. Whether in utero, at birth, as a child, a teenager, an adult. It doesn’t matter when. Parents are meant to pass away before their children.
But that doesn’t always happen. Unfortunately, far too often, children pass away long before they should. It is heartbreaking and devastating and a pain you didn’t know existed. And one that never goes away.
Yet, somehow, in the craziness of all that has happened, I’ve found a peace in being able to say goodbye to Kynsleigh. To hold her and know her for the short time we had. We delivered her on Friday, May 22nd at 7:19p.m. She came into this world peacefully asleep and beautifully ours. We were able to say goodbye, to pray with her, for her, and over her, and spend as much time as we wanted with her.
This brought a great peace to my heart. My precious girl was too sick to stay in this world with us. God called her home early, and I know she is now whole and perfect and healthy. In seeing her and in the pictures we have of her, you can see the fluid build-up in her belly from her heart failure. Her poor, sweet heart couldn’t keep up with circulating her blood through her body. There was nothing we could do, but let God decide. And now she’s home with Him.
I also learned so much more about congenital heart defects (CHDs), something I didn’t really know much about nor did I realize how insanely common it is. Nearly 1 in 100 babies is born with a heart defect in the US each year. CHDs can affect the heart’s shape or how it works or both. They can also be mild or serious and many require surgeries in the baby’s first year of life.
In our sweet Kynsleigh’s case, both her heart’s shape and how it works were affected, and her condition was very serious. Incompatible with life serious. Had she survived to birth, she would have endured several surgeries in her first year of life and quite possibly throughout her life.
Nick and I would have fought tooth and nail for Kynsleigh, but it would have been so difficult watching her go through these surgeries, not being able to do anything but pray.
We put it in God’s hands when we learned of her heart defects and while it was so difficult to learn He called her home, we know she is in a better place.
I’m so thankful for the two nurses we had at Sentara Norfolk General Hospital. Who understood what we were going through and did everything to ensure we were comfortable, we had time to spend with Kynsleigh, and took care of her as if she were their own. We felt at ease bringing her into this world and being able to spend as much time with her as we could. I wouldn’t have been able to live with myself not getting that opportunity.
She is my sweet girl. Daddy’s little princess. Our angel. And she will live forever in our hearts and in our memories. I’m so thankful for the time we had with her. For having her in my belly for four months. For what she’s taught me as a mother, a wife, a friend, a woman. I’m thankful for all she’s given me.
And I’m thankful for all of YOU. For the love and support and prayers you’ve given us over the past several weeks. We’ve felt every single prayer, read every single comment and message, even if we don’t respond. You all have been amazing. And we are so thankful for you. We’ll never be able to express how thankful we are.
I want to continue learning about CHD. I want to honor Kynsleigh as my heart baby and find a way to be able to save them all (I know…that’s a lofty goal). But no parent should lose their baby because their heart fails. It is so heartbreaking and devastating and so unfair to both the baby and their parents.
I’m thankful for this journey, as difficult as it was (and still is). I’m thankful for the growth I’ve had. For bringing Nick and I even closer together. For experiencing the birth of my beautiful daughter. I’m thankful for it all.
I hope y’all have a beautiful day. Spend it saying I love you to your friends and your family, more than you should. Life is too short and too precious to waste another minute not telling the people you love that you love them. Cherish them. Love them. And always, always say I love you.
With love and wellness,
It was another hard week on the home front. We went into it hopeful and with lots of prayers for a miracle for our sweet girl. As hard as it was, I stayed positive as best I could. I mean, we'd made it through the first trimester...and that, my friends, has never happened for me before.
I also did a ton of research. Because, as y'all know, that is my thing. I have to KNOW. I googled all of the diagnoses and tried to understand them. To see if there was hope for all of the things going on with Kynsleigh.
I also learned a lot about congenital heart defects (CHD) and just how common it is. I met some pretty amazing CHD moms who went out of their way to help me...someone they'd only just met. The CHD community is one I've never experienced before. Shoot, I didn't know they even existed. But they stepped up. So much. In a time I didn't know I needed it.
They gave me hope. Although I was still cautious, they gave me hope that all was not lost. I could see there were possibilities. It would be a difficult journey, but we had possibilities.
I also knew that as long as Kynsleigh's heart was still beating, there was no way I could give up. There was no way I could elect to have a D&C, no matter how grim it looked.
So we went into our next appointment hopeful. She still had a heartbeat as of Thursday, but it was a quick ultrasound. Our doctor told us there may be things they could do if we could get to 28-30 weeks with her. Mind you, we were only at 16 weeks, so we had a long way to go. But it was a long way off from "decide to have a D&C or..." It was a little more hope than we'd had the week before.
I also asked if we would be able to get a second opinion from a pediatric cardiologist. Someone who actually deals with CHD and all that goes along with it. Somehow, they managed to get me in the very next day. I was scheduled to have a fetal echocardiogram so we could see exactly what was going on.
It made me nervous all over again.
I thought we'd get all the answers...that we'd have a way to move forward. However, those dreaded words that you never want to hear came out of the doc's mouth..."There's no heartbeat today."
We knew this was a possibility. We were cautiously hopeful. But we also knew things didn't look good for her. The doctor told me that her defects were so severe that they weren't compatible with life. As hard as it is for us, she is no longer suffering. She's no longer struggling to have her heart beat, to have blood circulating through her body.
There's no way to ever be okay with something like this. We've lost our baby girl. Our miracle baby. And we're currently waiting for what the next steps are. I'm hoping I get to say goodbye to her...that I get to hold her and say goodbye. We shall see what happens.
The biggest thing for me is that she isn't suffering. She won't suffer after she's born. Her short little life won't be riddled with surgeries.
But it's hard for us. We miss her already. We miss the plans we had for her and our family. But we know she's in a better place. She'll forever be our baby girl. And we'll love her forever.
As hard as it is, I know better days are coming. I don't have to be happy every day to stay positive. We'll get through this together, just as we always do. And we trust that God has a much greater plan for us than we can even imagine.
Our loss is great, but God is greater. We just watched a movie where I heard this, and it's so fitting right now. I need that reminder daily.
Just remember, staying positive doesn't mean you always have to be happy. You're allowed to have bad days but still know that better days are coming. Keep your head up, my friends. There are better days ahead.
I love y'all. Have a fantastic week!
With love and wellness,
Sometimes in the midst of our ordinary, mundane lives, things happen that we have no control over. In fact, so many things happen that we have no control over.
I'd like to say that I'm used to this by now. Goodness knows I've been through my share of crazy. But it still shocks me when I get unexpected news.
On Wednesday, our routine ultrasound appointment gave us some not so good, unexpected news. They noticed some irregularities with our baby girl's heart and referred us to EVMS and a high risk OB. They noted potential heart defects and a slower heart rate than she'd previously had.
Luckily, our doctor knows one of the high risk docs at EVMS so he was able to call in a favor and we were able to get an appointment on Thursday morning. I was very thankful we didn't have to wait for a follow-up appointment because that is often worse than knowing.
I get to our appointment Thursday morning and was called back in right on time (I know, amazing, right?). I had two ultrasounds that morning, which lasted about an hour and a half, cumulatively. I'd never had any ultrasound that long.
The tech was amazing. She was very thorough and took her time, showing me our baby girl. She showed me her little arms and legs, her head, her torso, she even confirmed it was a girl. When she got to her heart, she fell silent. She spent a lot of time on her heart, with different views and listening to her heart beat. She changed the view a lot, but I could see that her heart was beating slower than it should. It just didn't look right, even to me.
And when she had me hold my breath, we were able to listen to her heart. It was definitely slower than it should have been. I kept looking away from the screen, hoping that if I wasn't looking, maybe things would be different.
After it was all said and done, the tech told me there were several issues going on and that she would be back with the doc. I waited in the room for maybe 20 minutes until they came back in.
The doc wasted no time getting right to the heart of the matter (no pun intended). I don't remember a whole lot of what he said, other than she has fluid in her abdomen and around her heart, which is indicative of poor circulation. And her heart beat was in the 40s/50s. He also told me we were weeks away from viability, so at this point, there was really nothing more they could do. He asked if I was ready to speak with a genetic counselor, to see if there was any testing they could do to see why this happened. I told him sure, but that we'd already had a ton of testing done.
So he walked me down the hall to Susan's office, the genetic counselor. She asked me a ton of questions about my history, and I told her the same thing. That we'd previously worked with a reproductive specialist at EVMS, who had done a ton of testing. Sure enough, she looked it up and was in awe at how much had been done. She couldn't even think of any new tests that could be done. So yeah, we had a lot of testing done.
She then told me the technical terms for what was wrong with the baby...and I asked her to write it down, because I knew I wouldn't remember it. So the technical terms are heterotaxy, non-compaction of her heart muscle, A/V canal issues, pericardial effusion, and complete heart block.
In laymen's terms, heterotaxy means her heart and her organs are on the opposite side of where they should be. Not a huge thing in the grand scheme of things, but it complicates matters. Non-compaction of her heart muscle means her heart isn't beating the way it should. This means it's not pumping blood and oxygen through her body, which is causing pericardial effusion. This is the fluid accumulating in her body. Complete heart block means the electrical stimulation isn't working in her heart. So the atria pumps, but the ventricular doesn't respond the way it should. It causes the slower heart beat, and of course, the lack of circulation through her body. And the A/V canal issues...well, the simple way to explain this is that it's a complex heart problem that involves several abnormalities of structures inside the heart, including improperly formed valves. Her poor little heart isn't fully formed nor is it is fully functioning.
They ultimately gave me two choices...schedule a D&C now or wait and let it play out naturally. Let her continue with whatever is going to happen. This means, if she were to die in utero and I was at or beyond the 17/18 week mark, they would have to induce labor and I would give birth to our sweet girl. I couldn't make that decision without my husband or without more research and thought and prayer. So I left that appointment heart broken and numb, knowing I had to tell Nick all of this information and hoping I got it all right.
I called again on Friday after I'd had a chance to think about things and to ask Susan if they were sure there was nothing they could do. According to her, because of the heart muscle not compacting appropriately, there is no fix. She's basically in heart failure in my belly.
So I've spent the weekend researching and trying to determine if there is a fix. I'm certainly not a doctor so I don't know any better, but I don't even know where to start. Do we get a second opinion? Do we travel to some far off place hoping for different results?
I'm not sure what the answer is, but I have been praying. Fervently praying. For a miracle. For her heart muscle to start working and beating the way it should. For healing. I know there's not much in my control right now, so I put it all in God's hands. Only He has the power right now to heal our baby girl. And I believe in miracles.
So if you believe, if you pray, please pray for our baby girl. Pray for a miracle. Pray for healing. Pray for strength. Our next appointment is Thursday morning. We'll see what's happening with her. And hope there are changes for the positive.
Thank you to everyone who has followed our journey. Who has prayed for us. Who has sent me kind messages and love and prayers. I read every single one, and they're very much appreciated and loved.
I love y'all. And I hope you have a wonderful week.
With love and wellness,
Something I've learned in this social distancing routine is that I really thrive on challenges. I do my best work when I'm pushed, whether it be a challenge imposed by myself or from someone else.
Some of my best months in business have been when I've been involved in a challenge group. It forces me to do the work, plus I want to show myself and others how much I can achieve during these challenges. I'd like to say that I'm like this all the time, but sadly, that's not the case.
I've also participated in quite a few challenges since we've been at home. I did 1,000 air squats in 5 days, 2,000 lunges in 10 days, and I'm doing 30 days of 50 push-ups a day, plus a mile worth of burpees for the month of May, which equals roughly 33 burpees a day. It's definitely kept me motivated and moving as we've been more at home these past several weeks.
I don't think I realized how much I loved challenges until these past few weeks. I mean, I know I've done a ton of challenges in my business, but I never really thought about how much it pushed me before now.
I don't know why this is the case...if it's because it pushes me to be creative, to really aim for and reach the goals the challenges set, or to actually do the things I've set out to do. Or if it just gives me something to prove that I can follow the instructions of a good challenge.
Is this equivalent to a "to do" list? Does it lay out the ground work for me to put in the work? Does it give me the check list I so very much love? Maybe.
Or maybe it just helps me actually do the work. To reach the goals I've set for myself time and again. To have things to aim for and work towards.
I think what this has shown me is that I need to challenge myself more often, especially when it comes to my business. I have the physical fitness part down, for the most part. But I don't often do as much as I say I'm going to when it comes to work. I get complacent and lazy, which I know we all often struggle with.
So my new goal for 2020, especially now, is to challenge myself more every day. To continue pushing myself to reach my goals. To be successful. To focus on my business...every. single. day. And NOT just when I feel like it.
Can y'all relate to that? Working only when you feel like it? We all fall into this trap at some point. We feel like we have all the time in the world, so we put off doing things until tomorrow. Or the next day. Or the day after that.
So here it is, a new month, hopefully the month we get back to some semblance of "normal," or whatever that looks like. And I'm going to keep moving forward. Keep striving to reach my goals. Keep challenging myself daily.
What about you? What new goals do you have for 2020? Have you realized anything during these crazy times? I'd love to hear about them!
I hope y'all have a beautiful week. Stay safe, stay sane, and continue to challenge yourself!
With love and wellness,