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
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