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. :)

Interstage...

Well Luka. You made it to six weeks. And yes. I celebrate the weeks right now. Every day is a victory for you my sweet baby. Every beat of your tiny half heart is amazing. Right now, you are peacefully sleeping at The Children's Home while I am down the street at Ronald McDonald House. You amaze me every single day. You are breastfeeding. Some babies with HLHS forget to eat... But I keep telling everyone that Mommy's a fat kid and Daddy's a working out fool so he eats tons too... There's no way our baby would forget to eat.

When you were born, you were 6 pounds 5 ounces. Today, you are 8 pounds. You had chicken legs when you were born but now, you have some chub on you and oh my god.... It is so cute. Even at The Children's Home, people and nurses just love you. It's so hard not to. :-)

I've been seeing a lot of HLHS kiddos making it to 2 months and losing their battle. And every time I read a story, I get a little more scared. You've come this far and I love you so much that the thought of losing you sends me into panic mode. There I go, crying again. See baby? I'd be lost without you.

Today was Zephyr's second birthday. He had ice cream cake and we got him a 3 in 1 guitar/drum/keyboard that is driving us CRAZY but he's happy and that is what matters. We had a great day despite not being home and I'm prepared to spend Thanksgiving and Christmas here with you if we have to as well. I don't care what it takes, you are NOT going anywhere. Got it, Chief? You are gonna kick serious HLHS ass and do great things with your life. You have touched the lives of so many people who don't even know you. Keep fighting kiddo. We love you!

Home...

Sixteen days ago, you came into this world kicking and screaming. You have been a fighter, my little warrior, since the beginning. You have gone through the most complex open heart surgery there is and here you are... No tubes, no wires... Just a feeding tube and a pulse ox. Luka, you are kicking some serious HLHS ass. And because of that, there are talks of us going home. Soon. Like...At the end of the week soon. Holy crap.

I am so... Happy. Sad. Scared. Excited. Home. The five of us. In our home. I want us to be together but I'm worried. What if you forget to breathe? What if your heart stops? Here, we are safe. Here, I have help if I'm clueless. Home is 2 hours away. Home is so far away if something happens. Ugh.

I'm learning how to feed you. A healthy baby... Well, a healthy baby would just breastfeed. You on the other hand need a fortifier added to pumped breastmilk to give you extra calories. A healthy baby would be able to eat as long as they want but you have 20 minutes to swallow down 50mL or the rest goes in the feeding tube. The reason you only get 20 minutes is because after that, you're burning more calories than you are consuming so eating basically becomes pointless. This is all so hard. So new to me. But I'll do this because you are so worth it.

You are the sweetest little guy. Everyone just adores you. You've amazed your doctors and nurses. And Mommy and Daddy. We love you so very much.

Keep fighting Luka. We'll be home... SOON!

One Week...

In your one week of life, you have endured more than anyone typically experiences.  Luka, you are so strong and brave.  I love you so very much.  Today, you are one week old.  Yesterday, you had your first of 3 open heart surgeries.  The procedure was called the Norwood.  Here's a little info on what the surgery is about...
Results with staged reconstruction for children with The Norwood operation is the most complex and highest risk procedure in the sequence of staged reconstruction for Hypoplastic Left Heart Syndrome. Current management at major pediatric heart centers has resulted in survival rates of 75 percent or better.
The recovery period in the hospital following the Norwood operation is often unpredictable and complicated, averaging about 3 to 4 weeks. A small percentage of patients who leave the hospital may continue to experience significant problems in the first months of life.
Occasionally, the right ventricle does not function well following the Norwood operation and in some case, cardiac transplantation may need to be considered.
If a child with Hypoplastic Left Heart Syndrome reaches the time for the second stage (about 4 to 6 months of age) without major complications, the survival through the Glenn and Fontan operations are much better, exceeding 90 percent with current methods.
Almost all children with Hypoplastic Left Heart Syndrome will continue to need some cardiac medications to maximize the efficient function of their heart, and all will require regular periodic follow-up visits with their cardiologist to evaluate their cardiac function and detect late complications such as arrhythmias.

http://www.cincinnatichildrens.org/health/h/hlhs/

So, basically, you just went through the most complex surgery out there.  And you're still here with us.  That is so awesome!  You're still on the ECMO.  Here's some info on that...

What is ECMO?

ECMO stands for Extracorporeal Membrane Oxygenation.  ECMO is used only after medicine and a breathing machine (ventilator) have failed to make your loved one better.  During ECMO, patients appear to be better, but you need to know that the person is still very sick.  Your loved one needs the ECMO machine for life support.

The ECMO machine works for the heart and lungs.  It is the same heart/lung machine used for open-heart surgery.  When your loved one is placed on ECMO, blood will flow through the ECMO tubing where it receives oxygen from the machine’s lung.  This happens until the heart and/or lungs are able to work on their own.

The ECMO Machine

Blood flows through the tubes, by gravity, and is pushed along by the turning motion of the pump.  How fast the blood goes depends on how fast the pump turns.  This flow number may be high at the beginning meaning the machine is doing most of the work.  As your loved one gets better, the flow will slowly be decreased because less support is needed.  The amount of time this takes depends on how the heart and lungs heal.  Beyond the pump, the blood goes to the machine’s lung that puts oxygen in the blood and takes out carbon dioxide.  The blood is then warmed to body temperature and given back to your loved one through the arterial or one portion of the tube.  You will notice that the blood coming from your loved one will be dark because it contains little oxygen.  The blood going back in will be bright red because it carries lots of oxygen.  The blood is taken out and given back at the same speed so your loved one’s body doesn’t miss the blood going through the tubing.

http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1109725221094.html

Right now, things are quite scary.  You have tubes and wires everywhere and your room is full of machines that are keeping you alive.  Mommy wondered if she was doing the right thing...By making you suffer.  Your chest is wide open...They won't close it for a few days because the risks of surgery include your heart swelling and bleeding...Plus, if for any reason they need to do more surgery, your little tiny chest is already open so they can get in there quick to try and save you.  I am allowing doctors to do all this stuff to you because I want you to live.  You can't tell me if that's what you want, so I am choosing life for you and hoping that this is what you want as well.  I had the options to terminate the pregnancy...Which, even if they said you'd live 2 hours, I would have never terminated my pregnancy.  That was never an option in my mind.  The other option was to give birth and let nature run its course and allow you to peacefully pass away.  I couldn't do that because the doctors told me there was a chance you could be saved...The process would be a long and difficult one but your chances of survival were fairly decent.  These surgeries are mostly done while you are very little and won't likely remember so we chose to give you a shot at life...Because really, what parent wouldn't want their baby to live?  Very few choose abortion or compassionate care. 

One of these days, Mommy will get around to writing your birth story.  Today just isn't that day.  Today...I am just hanging out at the Ronald McDonald House and the hospital.  Daddy and I relocated down here to be near you because I couldn't stand to be away from you.  Ashton and Zephyr are staying with your Grandparents and I will pick them up once you are off ECMO and breathing on your own.  I can't wait until that day comes. 

Baby boy, Mommy and Daddy love you so so much.  Keep up the great work.  Continue to fight because I miss holding you. 

Consent...

Well, I am sitting here in your room and I'm watching you sleep... You look so peaceful. Not a care in the world. You don't know that tomorrow, you will be going through one of three major life saving surgeries.

I just talked to the anesthesiologist and signed the consent for your sedation. I signed the paperwork for you to participate in a research study... Only because it might help some other little someday.

This is so hard little dude. I cried so many tears before you were born but now that you are here and you've laid asleep in my arms and I've gotten to fall in love with you and your wrinkled head and huge feet, I'm crying a lot more. I am scared out of my mind Luka. Terrified of what the next few days are gonna bring. I have all the hope in the world you'll make it but I'm still scared. 

Oh Luka.. I love you. So so much.

Home...

I posted a status on Facebook earlier that said something about home being where the heart is and if that's the case, home is in room 411 of the CICU at Children's Hospital of Pittsburgh. You didn't wait the weekend. You came into the world kicking and screaming at 1:53pm on September 29, 2012. You were my littlest little weighing just 6 pounds 5 ounces and measuring 17.5 inches. Mommy went to three doctor and He sent me down to Magee because He just knew you were coming.

Luka...I told you to wait. I wanted an October baby. You are already being a stinker and not listening. But...you picked your birthday. You chose World Heart Day to make your grand entrance. I couldn't be more in love. You look JUST LIKE your Daddy. It's so amazing. I'm so glad you're here.

I'm sitting in your room watching you sleep. You look like an angel. You are so beautiful. I am amazed at just how perfect you look. You wouldn't even know you were sick had we not gotten a diagnosis while you were still in Mommy's belly.

Today, you are four days old. Today, I got to feed you for the first time. I've been religiously popping fenugreek and brewers yeast pills to bring in my milk and pumping like crazy for you. It's no big deal. I hate pumping but know just how vital breastmilk is for you. You're so worth all the time and effort. I won't ever give up on you. You and your brothers are my entire world.

I could get used to Pittsburgh. Convincing Daddy might be hard to do. But I wanna as move closer to be near the hospital for you. Just in case. You'll have to help me win this one, handsome man. :)

I love you to the ends of the Earth and back again my full moon baby. :)

Four Days and Open House

Luka,

Tonight was open house for Ashton. It's when we go to the school and meet the teachers and see the kiddos classrooms. Someday,  we'll go to your open houses too. The teachers just love your brother. They said such nice things about him. But then their faces turned to curiosity...almost sadness...because It's obvious I'm VERY pregnant. And they already know about your tiny heart. They don't know what to say or how to react...They just ask how I'm feeling. I just smile and say 'tired'... Because that is the honest truth. Mommy is tired. I spare the details about how I'm falling apart. I choke back tears because this is it. This is the last weekend I'll be pregnant. Friday, Saturday, Sunday and then I wait for the call on Monday...And then you'll be here. Ready or not...

I might make another entry before you come...But I'm gonna do what I can to get this house rearranged and ready for us to leave. Just know that I love you so much and I know you're gonna fight this. You're gonna do great...so we can go to open houses. :)

Nine Days...

Well little dude...Just nine more days until our scheduled induction date. Nine more days until we see your face. Part of me hopes It's sooner that YOU decide to come. I want you to pick your birthday.

I've agonized over this time. I've gotten excited about this time. I have laughed. I have cried. I've been happy. I've been sad. I've had a rollercoaster of emotions flood over me. I wish you were healthy. I'm glad you're my special baby. I just do not know what is the right way to feel.

Regardless of what the outcome is, just know that you are so loved by your Mommy, Daddy, brothers, other relatives and even strangers. People I have never had the chance to meet in real life are praying for you. I do hope to meet some of these amazing folks who have still stuck by me though my views are not the same as theirs.

Luka...I want you to know that you are so important to me. So special. This pregnancy...you...have taught me so much. Because of you, I am kinder. I appreciate life more. I slow down and see the beauty in life. And I realize every person is amazing. No matter what, I try not to judge anyone that seems different because I don't know what they've been through to become who they are today. 

I'm as ready as I'm gonna be. So come on Luka...Let's do this.

Little Luka,

You are little...That's a problem. They are saying you are about 6 pounds 6 ounces  and while that seems good, apparently it isn't big enough. Mommy was scared yesterday at the doctor appointment because the doctor was talking about how you aren't growing in my belly the way you should and that while my chosen date of October 1st is reasonable to be induced, they want to really monitor you closely because if you aren't responding well to being in my belly, they want you out immediately so they can make sure you are healthy enough for surgery. This makes me sad. It makes me feel like my body is failing. My body couldn't make a healthy baby and It can't grow a sick baby the right way. I'm really upset with myself right now. Yeah...this has definitely been a rollercoaster of emotions for me. Especially lately because we are so close to meeting you.

I was gonna keep updating this blog for you after you are born. I still am...But I'm gonna be extra careful about how I do things. You see Luka, the world is full of not so good people who like to use stories like ours to make money for themselves. People are stealing stories and photos of other sick babies and asking for money and other things. I don't want anyone stealing your pictures or your story so instead of showing the world what a little warrior you are, I'm going to keep your journey fairly private and only allow trusted friends and family to share these times with us. It is my job to protect you and part of that includes making sure no one uses you and your amazing journey for their greed. It's so sad I can't share your story with the world. I wanted people to understand HLHS and CHD's and now, I just can't bring myself to allow people into our lives for fear they will use you. You don't deserve that.

I got to see Karen...She is the lady that caught your tiny heart. She was devastated and wondered how things turned out so when I went to the office for a Non Stress Test, she and I hugged and cried together. She is one of the most sweet ladies. And when you are born, I am gonna take pictures of you up for her to see. I'm also gonna keep her updated on your journey. If It weren't for her then we'd have never known your heart was tiny.

Well baby boy...We will see you VERY soon. I love you so so very much. Keep fighting little dude.

Here is a picture of your adorable face. You look JUST LIKE your brother Zephyr. So handsome.

Dude...

Another long day at the hospital yesterday. Of course. We had a non stress test at 11 ad then after that, we had an ultrasound... You were NOT cooperative at all for either of the sonographers. Silly little guy. But the results were that you apparently weigh 5 pounds 2 ounces. That puts you in the 11th percentile for your weight and they aren't liking that at all. They want us to go for non stress tests 2 times a week now for sure. Soooo once a week, we go over to the hospital where we saw the midwives in Farrell and do one test there. Then we go for mother NST and our regular OB check up at Magee. I'm worn out. All this driving is making me crazy. You are so worth it though.

We need to fatten you up. That's our primary goal right now. I just don't know what else to do. In just a few short weeks, you'll be here and your fight will start. You're so strong though. And everyone loves you already... I'm sure you're gonna sail right through the surgeries and kick the crap out of HLHS. I know there will be twists and turns. I know it's gonna be rough for everyone, especially you... But you can do this bud. You can make it and grow up to kick the crap out of Zephyr and Ashton. I believe in you.

Today is your big brothers first day of 5th grade. He is super excited. I can't wait until your first day of school. I bet you'll make lots of friends and get good grades. No matter what dude... Mom is gonna be proud if you. You are gonna have to overcome a lot of obstacles your first years of life and that alone is a big deal.

I love you Luka. See you in a few weeks! :)

Lucky Luka,

Great job yesterday buddy! You put up with a lot from the doctors. After echos, ultrasounds and non stress tests, we had both had enough. It was a loooooong day but your prognosis is good. Dr. Sherman is optimistic you'll be ok after your surgeries. I'm so thankful for all the good news we got. Dr. Sherman saw 4 chambers...Your left ventricle and left atrium as well as your aorta are very hypoplastic but the doctor said you should be stable enough for me to hold you for just a few minutes before they start working on you. We got a picture of your perfect face. I'll post it on here.

We see the doctors every week now for non stress tests. We will have another echo at 36 weeks. It's gonna be a long few months but you're so worth it.

I love you buddy!!!

New Phone, New Pup, New Meemaw!

So little dude...I got a new phone. It's definitely not what I'm used to. I'm figuring it out. Technology is crazy. You'll end up teaching me stuff when I'm old.

We got a dog. She's a rottweiler. Her name is Maggie May. She is amazing.

Meemaw is coming around. We think she will be ok once her body gets rid of all the medications. Sha really had us worried.

Thirty two weeks buddy. We get to meet you very soon!! I love you. :)

Luka Man,

We got to see you again the other day. Got denied for a picture of your heart. The ladies excuse was 'The further along you get, the harder it is to see th heart'....Really? I saw it perfectly fine...I'm trying to save little mementos for you and this was an important one and that idiot lady took it away from me. Oh well. We have another ultrasound coming up.

You're growing big and strong. They are saying 3 pounds, 7 ounces. Keep it up buddy! You gotta be strong for your surgeries! :)

Mee Maw is in the hospital. I found her in her chair on Monday, nearly unresponsive. Her temperature spiked, her pulse soared, her blood pressure went down and her kidneys stopped working in a matter of hours...It was scary. This is the 3rd time this has happened. We are hoping for the best but we aren't sure that her body can take this again. I'm just sitting here, calling the hospital each day to make sure she's still ok. She's very critical but they've said she wouldn't make it before and she did. She's a strong woman...She can beat this again.

So many friends of mine are talking about buying baby stuff for their babies. All their babies are healthy. They will be able to take their babies home after 2 days...It wasn't supposed to be like this. We planned on having you at home. We planned on leaving you out of the medical community. No shots, no circumcision, no nothing. You'll still remain intact...Momma will make sure no one cuts your penis...But dammit, you're gonna be pumped full of medications and shit. It kills me. (I say bad words...But you won't read this until you're way older anyway...Plus, if you hear Mom and Dad, you know we have potty mouths anyway.) Anyway...I see everyone posting pictures of their baby stuff and saying they're going shopping for stuff...I can't help but be jealous. We aren't shopping for you. Not because we don't want to, but because I don't know what you'll need exactly when you come home. I have to weigh out your needs versus the things I want. I saw so many cute things I wanted to buy for us. Wraps so I could keep you close, cloth diapers...But those things have to wait...Because I don't know what size you'll wear or if you'll even make it home. I'd like to think you're gonna come home soon but I can't bear to think that if something should happen, I'd have to take all that stuff back to the store. I don't know. I'm trying not to be negative. I am positive and hopeful...But there is always a chance things won't turn out right.

I'm also sick of the 'Well, maybe it isn't as bad as they think' 'Maybe his heart will grow and he won't need surgery' lines. I wish...But I keep getting told this is a bad case. The docs are being realistic. No, his heart won't grow. It's as developed as it is gonna get. I'd love to say maybe you won't need surgery...But I know better. The only way you won't need surgery is if you don't survive until the surgery. :(

Ok. Enough negativity...I'm gonna go try to clear my head. See you in a few weeks!!! We're down to 10 but the doctors are saying they'd like you here around October 1st.

I love you so much already!!!

Love,
Mommy
Sent from my Verizon Wireless BlackBerry

Little Man,

Hey there handsome dude! :) I can say that now because I know what you look like already. We had another ultrasound. As much as I hate the idea of having to have so many of these things, it is nice to see you.

So here's the scoop: The doctors are very concerned but optimistic. Your aorta is very tiny and your left ventricle is severely tiny as well. They said it is going to take a lot to fix you up but they feel like they can do it. Basically, we are just gonna hope and pray that things go well. I mean, afterall, if they didn't think you would make it, they'd tell us right?

Things I have to remember to ask: What size is your aorta in millimeters? Do they think your septum is intact? Hmmmm...I'm gonna add to that list, I know. There were other things but I will have to look at my Facebook again and see what the other Heart Mommys asked.

They say you weigh 1 pound 15 ounces. That puts you in the 27th percentile for weight. I was hoping for a chunker. It looks like we might not get that seeing as how you only have a 2 vessel cord. But the doctors didn't seem too worried about it and it apparently doesn't have any effect on your prognosis.

Mommy is adamant about making sure you get breastmilk. I sucked at pumping for Z-Man. But hopefully, I make enough this time for you. If not, I asked the neonatologist if I could get my own donor milk. She told me no. I'm doing it anyway. I do not want you having formula. Breastmilk, even from another mother, is better than formula. I'll have to discuss this with the lactation consultant.

You got tons of people praying for you Luka. You can make it. I know it!

Meemaw had her pup Diesel at the vet yesterday. Well, Roscoe AND Diesel. Roscoe has bronchitis. Diesel has cancer. Diesel is a wonderful doggy. It's really sad that he's so sick. I like that big old dog a bunch. :(

Your brothers...Man are they ridiculous. I remember when I was a kid, I couldn't WAIT to wake up and go outside. I see little kids running around outside at 7-8am until 10-11pm around here...But Ashton...He just wants to sleep. Really dude? Wake up and enjoy life! Zephyr, as much as I love him, he's driving me nuts with his obsession with everyone needing to wear shoes all the time. Makes me wonder what you'll be like as a toddler and as a 10 year old. :) Betcha you'll drive me just as crazy as your brothers. In all seriousness, I really love my boys so so much. Being made insane is just part of being a parent. :)

Enclosed is a picture of your face (kinda). You kept shoving your face into the placenta and kept putting your hand over your face. Silly baby. Oh, and you look so much like your brother Z. :) I think that's neat!

Love you bunches!!!
Mommy

Sent from my Verizon Wireless BlackBerry