Watch What You Say...

I've heard a laundry list of questions about Luka's heart defect. For the most part, people are genuinely curious about his surgeries, what Hypoplastic Left Heart Syndrome means, what this means for Luka's future. There are questions though, that hurt. The one "What were you doing that caused his heart condition?", implying that perhaps I did something wrong to cause this. Some days, I respond with " It just happens" and in one instance, I said "Oh...You know, heroin."

Luka was planned. My final child. The one I was going to give birth to at home. I was on Zoloft as was Shawn. And just after I got my positive pregnancy test, I got a stomach bug that had me puking so hard that I was bleeding and I lost 5 pounds. Extremely dehydrated, I went to the ER and was given Zofran and IV fluids. I was told by doctors that these medicines were safe. And against my better judgment, I continued to take the Zofran because being able to keep food and liquid in my body trumped the idea of barfing my brains out. Puking freaks me out. And I refused to do it. I did quit the Zoloft though because I just didn't feel I needed it. I wasn't depressed. I was excited. I was growing another life.

If you are curious as to how Luka's heart condition happened, instead of asking "What were you doing to cause that?", ask it a different way. For instance, " Do doctors know why Luka has HLHS?", "Is there anything that causes this heart condition?"...Or not asking or assuming works too. Watch what you say and if you can't say anything nice, just keep it to yourself. I know people are curious but have some compassion. The world is severely lacking in decency.

Luka is growing. He is big and strong. And just so stinkin' adorable! He goes in for a heart cath next week to gear him up for his Fontan next month. The Fontan is the final stage of the 3 surgery repair for Luka's HLHS. My nerves are shot. I just don't want to hand my baby off for yet another surgery. I feel like I am betraying his tiny trust. I just hope he knows I love him so much. This isn't to hurt him. It's to give him the best chance at life.

Luka, Mommy loves you so much. I hope you know that. <3

Lucky Little Luka

Your mama is such a slacker. Here's an update. You walk. You babble. You wave night night and bye bye. You are just as sweet as can be. You hug. You give kisses. You eat EVERYTHING!!! Luka, I am so proud of you. I love you so much. 

You have been through hell and you are still kicking HLHS ASS!! You amaze me. You also make me giggle. You keep up with your older brothers. In fact just this morning, you walked up to Zephyr who was quietly watching Super Why, and just yanked on his hair and walked away. Two minutes later, you were hugging him.

Zephyr has your back too. You'll buzz right to the door to the kitchen if it's open and Z will chase you and tell you not to go in there. If you get hurt, Z is right there to help kiss the boo boos too. You cuddle with Ashton and take a nap. Life is normal. 

And then reality hits. In the last few weeks, two HLHS kiddos gained their wings. They weren't sick. They were doing normal kid things. Those boys were playing one day, gone the next. Seriously. What the hell? I tend to forget you only have half of a heart sometimes because of how well you keep up with everyone else. And then things like this happens and I wonder "Will I wake up to another day with my sweet boy?" The answer to that question is...I just don't know. Your tiny heart could give out at any minute. That is my reality. That is the world I now live in. 

What pisses me off more than anything is that family hasn't really paid you much attention. Sure, my Aunts and Uncles know you. But my cousins...They don't bother. I had envisioned that family would be close. That we would all form a bond for such a special boy. Turns out, they don't care. Even at my Mom's funeral, they acted like we didn't exist. There are a few that care. And I appreciate that. But really, I feel like the whole world should know you...ESPECIALLY your own blood relatives. 

You are loved though...Mande said "Anyone who doesn't want to get to know Luka,that's their loss... More time for me :) But seriously,any thing happens to him,I will be crushed right with you. No not in the same way but none the less crushed. That's my little buddy! <3" And Krysten "People don't care to look outside their little worlds, to see reality. I'm sorry that some chose ignorance but many others chose to embrace Luka, and to know and love him. I chose to be overly optimistic because that little man came into the world kicking bums and he's not anywhere near done. The truth is I can't fathom to think about the alternative. I just can't. He's too precious and he deserves a whole life full of victories." And Gretchen "If someone doesn't want to be involved in Luka's life, then honestly it's their loss. Luka is a wonderful little boy and anyone who can't see that is blind. The ones who truly matter will always be there <3". You. Are. Loved. Loved by my closest friends, your brothers, your mama and daddy, Daddy's cousin Jana and her guy Don, your Lala, your MeeMaw who is an Angel in Heaven, and people who haven't even met you in person. As much as I want the whole world to know you, I realize everyone in our world does. Everyone who is important does. And we don't need more than that. I can't force people to care. We are likely better off without them. 

Ohhhhhh sweet boy. I really love you. I am so beyond blessed with you and your brothers. The moments we thought we would never experience are happening right now. So I'm gonna post this, cuddle with you as you snore super loud, and blog again in six months or so. Lol!

We love you!!!

Mommy

Learning Curve

Dear Little Luka,

It has been a long time since I have updated this blog. While I feel bad that I haven't kept up with it, I know that it is because I have been busy chasing you and your brothers around. You are 14 months old now...And the center of my world along with Zephyr and Ashton. You three mean so much to me. 

You've kicked some serious butt, dude. Two open heart surgeries and a heart cath and you are doing everything you should be doing at your age. 

A lot has happened since I posted last. You came home, you grew...Quick! Your Meemaw got sick...Again...And on September 4th, two days before Ashton turned 12 and 25 days before you turned 1, she passed away. That hit me like a ton of bricks. It was unexpected. Your Lala and I were talking about plans to have her come home even though we knew it would be a while still...and then I got the call that I dreaded. That my mom, my best friend...was gone. I'm still learning to cope with it. And it is so very hard. There are days I can deal...And days when I just cry an cry until there aren't any tears left. And then I cry some more. I miss her so damn much, Luka. So much that it hurts. I want to call her. To hear her voice...But I won't get to ever again. All I have is memories. And the closer it gets to Christmas, the more I ache to just see her face one more time. She loved Christmas. And I didn't get to spend Christmas 2012 with her because I was with you. She knew I wanted to be with her but that you were my priority. I never expected that the first Christmas that you got to spend at home, would be the first Christmas I'd have to spend without her. 

But dude! You made it! You have defied the odds and made it past your first birthday. A lot of HLHS babies aren't so lucky. 

Because of you, I have made so many friends. Met a lot of new people. Said goodbye to a lot of toxic people that I had in my life...Because I want to be a better person for you and your brothers. 

This summer, we will be busy with you. Your cardiologist has given us the word that in May, you will have another echo of your heart. Then in July, you will have another heart cath. In August, you are going to be going in for surgery number three. This third surgery is called the Fontan. I'm not gonna lie, I haven't even researched it at all. I will closer to your surgery.  Right now, my main focus is to watch you grow and learn. 

Thank you for being such a strong and amazing fighter. As the saying goes...Some people never get to meet their heroes, well...I gave birth to mine. My Lucky Luka. 

Well Luka,

It has been a year since our ultrasound where we learned you were a Luka and not a Lillian. I KNEW it. I told your Daddy you were a boy. I won. I told everyone you were a boy. I got a muffin and a smoothie as part of a bet. Krysten bought you a onesie and we agreed that boys had a crappy selection to choose from. But all of those things were just to ease my mind. I was devastated. One year ago today, we got our ultrasound that started our HLHS adventure.

Today, you are an amazing 7 month old baby boy. You are meeting and beating expectations. You are everything the doctors weren't sure you'd be. You are fully bottle fed donated breast milk from some seriously amazing mommas. You are rolling over and scooting and babbling. Luka, it isn't you who is the lucky one. I am the lucky one to have such an amazing miracle in my life.

You flew through your second surgery and came home for the first time when you were 15 weeks old. I will say though, after your Glenn, seeing you in pain, I questioned whether or not I was doing the right thing. I wondered if it was right to make you suffer through that pain. But here we are, home...And you are thriving...And I know I made the right choice.

You amaze me with your spunk, determination, love for everyone. Despite what you have been through, you are the happiest baby that I have ever seen...And that is saying a lot because Zephyr was a really happy baby too. You have a smile for everyone and it is contagious. You have defied the odds...Luka...You are my hero. You and your brothers and Daddy make my life have purpose. And I will always love you.

Thank you for being such a fighter.

Thirteen, one, three, thirteen...

I HATE the number 13. It's never been lucky for me. And quite frankly, I'm scared to death. Your Glenn will be on 1/3/13...You'll be 13 weeks old. I'm hoping the number will finally have some good significance in my life. I'm hoping that you'll fly through the Glenn like you did the Norwood. I'm hoping that we can finally go home.

You've been gaining weight like a champ and you did great during your heart cath even though you ended up in the hospital for almost a week afterwards because of a fever and a few other issues. We figure you had gotten the stomach bug everyone else ended up with. You are amazing though and champed right through it.

You're turning blue. Really blue. Your face is pale, your fingers are cold and so are your toes. Your body is showing us it is time for your second surgery. I thought that handing you over to the surgeons for your Norwood was bad. Just the thought of Thursday makes me cry. I have been able to spend almost 12 weeks cuddling you, watching you grow, seeing you smile, hearing you giggle and learning your little personality... I've bonded with you. And I love you so very much. I sure hope that's enough for you to fly through this Glenn so we can cuddle more. So I can tickle your belly and hear your giggle. So Daddy and I can watch you grow big and strong.

We need to get our house finished. We need to go home and scrub the downstairs at least. Call the landlord and let him know the heater sucks. Get the window fixed that Maggie May tried to jump through to get the cat...Ugh. Anxiety attack. Lol!

I just can't wait to get through this surgery and finally take you home. I'm ready. :-)

Mommy loves you!!!

All I Want For Christmas...

Oh Luka... It has been forever since I last wrote an entry in the blog. But Momma has been so busy loving up on you and trying to balance my time with you and your brothers. But this whole journey is worth it.

I want a lot of things for Christmas... I want to be able to afford presents for all three of my boys. I want our house to be finished. I want a new vehicle. But the only present I really want... Is you. For your surgery on January 3rd to be uneventful. And for us to go home. I want to set up your room. I want to be able to cuddle in bed with you and just sleep the night and day away with you in my arms. I don't want to be in fear anymore. I just want it all to be ok.

Stay strong buddy. We all love you so very much. You have over 2,900 people following your journey. Some have sent gifts. Some have sent cards. Some have donated money. Some have just been there. And really... The support alone is amazing. All the prayers and positive thoughts are the glue that's keeping me together. Luka, you are my miracle. And you're nothing short of amazing. Fight on baby boy.

Seven Weeks

Well dude. It's about 2pm Friday, November 16, 2012...This time 7 weeks ago, I was at the doctors getting a non-stress test and a biophysical profile. I was crampy and pretty uncomfortable but I blew it off and figured it was just the last week of pregnancy. I was being induced Monday anyway so it didn't matter. Daddy was all set with plans to go out to a party for the night while I stayed home with your older brothers. I told him he might not be going to that party because I had a feeling that although I wasn't in labor, the doctor might want me down at the hospital anyway. I got to the appointment and they took my blood pressure. It was elevated so they checked me and I was only one centimeter dilated and you were still pretty high but the doctor said he felt I should go to Pittsburgh and not waste any time. Momma rarely listens to doctors so I took my time. Ashton came home from school and I told him and Daddy to pack their things that it was time to go. Daddy wasn't ready so he rebelled and didn't pack anything. He played his guitar while I packed Zephyr's stuff. We got the car loaded, dropped Bubba and Bean off with Meemaw and Lala, dropped Uncle Brandon off at his house and drove to Pittsburgh.

By the time we got to the hospital, I was 3 centimeters dilated. Yep. This Momma drove herself 2 hours to the hospital in labor and stopped at 2 different locations to drop everyone off.

Heck, I even drove home the day after I had you. Balls... I have them. :)

So here we are... Seven weeks later. You are 6 weeks post Norwood and kicking some serious ass. You had to go back to the hospital to get blood but another heart mom, the awesome Kelly, told me blood was the difference between night and day. And she was right. You are on room air. You're eating. Your sats look great. It's like I have a normal baby. But I'm quickly reminded by the scar on your chest that you are anything but normal. You are still in the critical stage of all this. That we still have a long road ahead of us. But baby... You are so worth it.

I love you, Lucky Little Luka. :)