9 Months

This day 9 months ago started like this…And ended like this… 

 Happy 9 month birthday to my little Luca in Heaven. Time flies. I don’t like it.

This day 9 months ago also kicked off our first fundraiser by a lady we didn’t even know at the time. Those little red beaded bracelets you see floating around worldwide, all strung one by one, by hand… 
 We do really love seeing them, even 9 months later!

Today, we went to CHLA for a fetal echo on baby Noelle. Our perinatalogist said everything looked good with her heart, but referred us to the cardiologist for the final say.

After a 45 minute echo and a meeting with Luca’s cardiologist, Dr. Pruetz, we were told everything looked great. We don’t have to go back! 

This was my first time back to CHLA since everything happened with Luca. Dr. Pruetz talked about Luca by name, we saw familiar faces, and got to meet with one of our favorite nurses Luca had, Carlos. We even got to visit the room where Luca spent his life. Sounds weird, but it was nice to have a bit of closure, especially since we don’t have to go back to that place again. (!!!!!!!)

Who knows if these blog posts circulate their way around, but if they do – to all the wonderful people who took such great care of us and Luca at CHLA, thank you. I cannot say it enough. 

We have some exciting stuff coming for this little LucaKnowsHeart movement, so stay tuned. And thank you for continuing to keep us in your thoughts and prayers.

And to my sweet Luca – I wish I could hold you for just one more day.  

#TransformationTuesday

I was flipping through some old pics over the last two years and found the before and after shots of that bikini competition I did (fitness, not Hooters ;) ). First of all, woah. Second of all, isn’t it crazy what a difference 6 months or a year can make? They always say nothing worth having comes easy, and I think that’s definitely the truth when it comes to fitness. 

I took weekly pictures to send to my coach and though the small changes weren’t necessarily easy to see in the mirror, they were evident in the side by side comparisons. And when I finally reached my goal of competing, the final before and after results were noticeable and quite obvious in the mirror. But the side by side comparison of the before and after was crazy and not even necessary. I didn’t even look like the same person.

So back to flipping through my old pics.  I came across this family pic we took on September 4, 2013 (at 5pm on the dot to be exact):

 

So I immediately searched for another family pic from September 4, 2014 (at 5:22pm to be exact): 

  

Two pictures that are exactly one year and 22 minutes apart. What a difference.  Like my fitness pictures, this comparison is crazy. We don’t even look like the same people.

I bet if I compared pics of us from September 2013 to, I don’t know, February 2014, things look different, but not very noticeable, much like my weekly comparison fitness pictures. 

 

We look happy and all is well.

Fast forward a few months to July 2014. You don’t really need a side by side comparison to see the difference, much like my monthly fitness picture comparisons.

 

We still look happy but that belly is in large and in charge, and the pregnancy secret is long out.

And then September 2014. Things are noticeably different. No comparison pictures are necessary to see the change (but here’s one to make a point). The difference is crazy and we don’t even look like the same people.  

 

What a difference a year made.

I said something about anything worth having not always coming easy. That also goes for a sense of peace, a desire to get out of bed each day, the acceptance of support. The list goes on and on. 

Here’s the difference 6 months make. Still happy, thankfully healthy, but definitely different. Changed.

 

I am anxious to see what our pictures might look like in September 2015, one whole year later. And I wonder if we’ll need a side by side comparison to see the difference.

When your friend loses a child.

This week, I had two very different conversations with two very near and dear friends on the same topic. Me.

I got a card from one friend thanking me for my friendship and apologizing because she felt like she hasn’t been a good friend to me. She admitted wanting to be there for me through the loss of my son, but didn’t know how to support me. She asked if I wanted to talk about, not talk about it, laugh, cry, whatever. She honestly revealed that she had an inner fear of making a difficult time even harder. 

The other friend texted me that she feels like I don’t care about our friendship because she felt ignored and that I’ve lacked effort. I apologized for anything I did or didn’t do, told her it wasn’t intentional, and reminded her that it’s been a tough year and I have a hard time doing much of anything. She informed me that she’s tried to not take it personal but couldn’t ignore the last few months. She gets that I’ve been through a lot, but can see that I’ve changed.

If you’ve taken the time to read this far, please keep going because this is important. There is no timetable to grief, there is no manual on how it’s supposed to go, and there’s no way to understand the situation unless you’ve experienced it. This holds true for all types of experiences.

This pain is something no one should experience. The same goes for the subsequent burden of having to validate it to others.

Friends – please know that I love and appreciate you all. I know you don’t know how to deal with this kind of loss or even maybe how I’ve changed. Neither do I. There’s not an ounce of my being that holds you responsible for that. My only hope is that as you are on this journey with me, that you walk it with patience and maybe a little persistance. 

It’s been 6.5 months since Luca died, and it feels like we’re at a whole new crossroad with reality. It’s hard and it’s painful. Your prayers, support, honesty, love, and patience means more than you know. 

I hope this helps anyone who has a friend going through what we are. 

– Megan

Save the Heartbeat Gala

A few weekends ago, AJ and I had the honor and pleasure of attending the inaugural Save the Heartbeat Gala benefiting the Hopeful Hearts Foundation. This event was put on by another heart mom, Danielle, who’s son Remington, only 10 months old, has undergone two open heart surgeries and four brain surgeries, as a result of his first heart surgery. You read that right. Over $100,000 was raised!

This was our first “heart event” since Luca passed away, and I’d be lying if I said I wasn’t hesitant to attend. Sometimes it’s hard to know where I fit in and, quite frankly, it doesn’t always feel like the heart community is it. My reality no longer includes heart surgeries, oxygen sats, coagulations, hospital talk, and the like. And I think it scares people who are living with sick children, just like Luca, to hear about their worst nightmare being realized, which happens to be our new reality. I can’t blame them. However, Danielle did an outstanding job of honoring both children who have passed away as well as children who are thriving.

gala3These are all the heart parents in attendance. We were given pins with a little red ribbons to identify us as such, and other attendees were encouraged to talk with us and ask us about our children. Do you know how many people asked us about Luca? I got to talk about him the entire night and didn’t have to feel awkward for one second because I wasn’t the one who brought him up.

IMG_3484Meghan and Josslyn, two other heart moms I talked with multiple times before Luca was born and finally got to meet. Josslyn is Charlie’s mom. I reached out to her because I found out she delivered at the same hospital as I was going to and therefore had a similar birth experience. You might remember that I was not fond of my experience and I was pretty anxious about the hospital. Charlie has completed two of the three staged surgeries, and is doing well. Meghan is Lawson’s mom, and she actually reached out to me after hearing of Luca’s story. I got to share everything with her. Lawson has completed the first of the three staged surgeries and is also doing well.

galg10Proud parents of Lawson, Luca, and Charlie.

gala2Large photos were on display of each child represented at the event. This was very cool to walk in and see.

IMG_3482-1And honoring the sweet children who are no longer with us. Gracie, on the left, is the daughter of Adam and Terra, the founders of Hopeful Hearts and of course our sweet baby Luca.

gala11Each table was named after a child who was honored at the event. Here we are at Table Luca. Each place setting had a 5×7 card with all of Luca’s facts on the front, like what his condition, the surgeries, whether or not diagnosed prenatally, etc. The back included his story. So many people got to read his story and see his face. I cannot explain how wonderful this was for us.

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Would ya look at this?! We never get to attend anything together because of AJ’s soccer schedule.  We were excited to spend the evening together at such a wonderful event, supporting a wonderful cause, and talking about Luca.

If you know someone who has lost a child, I would encourage you to reach out to that person. If you find yourself thinking of that child, let his or her parents know. Mention the child by name. Doing so will not be some shocking reminder that their child is no longer here; they didn’t forget their child died.  What you’re reminding them of is that someone remembers that their child lived, and that is a great, great gift.

We spent the entire night talking about Luca, sharing his story, having people ask us about him, seeing his face everywhere, and connecting with other people who have shared the same or similar journeys. That alone was incredibly healing.

So, Danielle, if you’re reading this, thanks for the work you did. Not only did you help raise a ton of money and awareness for children like ours, you provided a source of healing for my husband and me. For that, we are thankful, and we are excited to be apart of this in the future!

Check out the Hopeful Hearts Foundation when you get a chance. Adam and Terra have a wonderful story to share about their three children with serious CHDs. What they’re doing for families like ours is special.

National Wear Red Day // Friday, February 6th

goredTomorrow is “National Wear Red Day” to raise awareness for America’s #1 killer: heart disease. Further, Congenital Heart Defects are the #1 killer of all children, more than all childhood cancers combined, yet the research is grossly underfunded. 1 in 5 children with a CHD will not make it to their first birthday. We are that 1 in 5.

We love and miss you so much, Luca!

Rethinking My Own Heart Health.

I often look at pictures and watch videos from my time with Luca. I just finally updated my iPhone and now have the feature in my photostream where I can see the dates, times, and location of each picture taken. I can relive my entire week with Luca down to the minute. This is heartbreaking and heartwarming at the same time. I remember the most minute details of each day, like what my thoughts were in the shower, how I slept the night before, whether or not I wore mascara, what I ate that day, or if I even went to eat. I remember the smells, the nurses on the duty, who I heard from on any given day. It’s oddly strange how comprehensive my memory is, but how much of a blur that week really was.

I am thankful to have so many pictures from my short time, but I’m sad that they’re all I have. And, as a result, I find myself staring at different pictures longer than usual, just studying the details and going back to that place in time.

As you know, when Luca was first born, he was taken immediately to CHLA and into surgery. I was over recovering in the maternity ward in a separate hospital. AJ would send me pictures and updates via text. I just found that I took a screenshot of the text of the first time I really saw Luca. The first time I saw the baby that I carried for 9 months, who was taken away from me instantaneously. Just a text.

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The first time I saw Luca was after I feared he died. In this picture, you can see the red sticker on my sleeve. Everyone in CHLA had to have a badge of some sort, and because we were taken in through a backside entrance in a rush, we were just given those emergency stickers. Our representative grabbed it for us and stuck them on us on the way up in the elevator. I remember her yelling at the people at the desk that she would come back for those stickers, that we had no time to waste. Security gave her such a hard time.

I was discharged from my hospital on the fly. They put me in a wheelchair at my hospital to wheel me over to CHLA, and security was giving us such a hard time about taking the wheelchair. MY BABY’S HEART STOPPED BEATING…and they were worried about someone “stealing” a wheelchair. Our representative fought that battle for us, too. (Rosby – if you’re reading this, thanks for all you did for us.) You can see in the picture that I have tape on my left hand. That’s the IV port from my hospital. I was still attached to everything when I left. My doctor gave me instructions over the phone on how to take care of myself and my incision, my medicine schedule, etc. I had seen my OB just once after a c-section. I had to even sign papers acknowledging that I was discharging early against medical advice. Anything to get to my baby. I just can’t believe how fast I got out of the hospital. I also can’t believe how strong the body really is. What it can do and handle in a time of fight or flight.

Those two red tubes coming from Luca’s chest, they pumped blood to and from Luca’s body. Have you ever thought about what exactly the heart does and how important the heart really is? Don’t worry, I never did until being forced to understand it’s function, and fearing it’s lack thereof, became my reality.

February is a month recognized for heart health awareness. My reflections of my short time with Luca remind me of the importance of my own health…health that I most often take for granted.

This month, I would challenge you to seek the benefits of your health. To understand how your body works and acknowledge what an honor it is to have just that: a body that “works”. Challenge yourself to go for a run or make a healthier food choice.

We would love to see your heart healthy choices. Or any heart for that matter! Use the hashtag #LucaKnowsHeart to share. I’ll be showing my heart for Luca all month long.

Thanks for following along.

February 7-14: CHD Awareness Week

Friends,

Please take a moment to sign this petition to nationally recognize February 7-14 as Congenital Heart Defect Awareness Week.

I used to pass over this kind of stuff all the time because I never thought it would affect me. Here I am now with my entire world flipped upside down.

The staggering and heartbreaking stats are listed on the website. You lived through our triumphs and through our heartbreak with us. Please help us honor Luca’s memory by raising awareness.

https://petitions.whitehouse.gov/petition/nationally-recognize-february-7-14-congenital-heart-defect-awareness-week/Lq612tQ0