Saturday, December 29, 2012

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!!!

Thursday, December 13, 2012

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.

Friday, November 16, 2012

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. :)

Saturday, November 10, 2012

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!

Sunday, October 14, 2012

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!

Saturday, October 6, 2012

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. 

Thursday, October 4, 2012

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.

Wednesday, October 3, 2012

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. :)

Thursday, September 27, 2012

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. :)

Saturday, September 22, 2012

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.

Tuesday, September 18, 2012

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.


Wednesday, August 29, 2012

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! :)

Wednesday, August 15, 2012

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!!!


Saturday, August 11, 2012

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. :)

Friday, July 27, 2012

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

Saturday, June 30, 2012

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

Monday, June 18, 2012

One Month...

It has been one month since you were diagnosed with Hypoplastic Left Heart Syndrome, Little Luka...One month yesterday, my whole world stopped. I couldn't blog this because we were celebrating Father's Day...And I didn't have the words...

Daddy felt you kick for the first time on Father's Day...One month after your diagnosis. It was pretty cool. :) Daddy thought it was neat.

I keep meeting up with all these Mommy's online that have sick kiddos. I keep thinking how awful it must be to have a baby in the hospital hooked up to all those machines...How scary it must be for those parents and those poor little babies...And then reality sets in. I'm gonna be in that position in a few months. I'm going to be that worried Mommy who won't leave your bedside for days because I want to take in every precious second I have with you. I watched a video on YouTube of a mommy holding her baby that they knew only had hours to live because he had Anancephaly. (I think that's how it is spelled.) And all I could do was cry...And say 'I don't want to hold my baby as he dies. I can't lose my Luka. He can't pass away.' I'm crying even now...My heart sank. I can't imagine that Mommy and Daddy's feelings as they held their baby boy while he took his final breaths. What that little boy had was way more severe than what you have. His is a brain and skull deformation, yours is a heart problem. His condition meant certain death. Your condition can be fixed.

We go down to Pittsburgh on June 27th to meet up with the doctors and to get another ultrasound. Then August 14th, you are going to get another ECHO on your heart. It's getting closer and closer. How do you even prepare for something like this?

Mommy and Daddy have yet to set up your room. I wonder some days if we even should set up your room because we don't know 100% for sure if you are coming home and when. Not that I don't have faith in you...I just have a whole range of emotions on my mind that vary day to day. I'm sure by the time it's close to delivery, I'll be putting the final touches on your room. :) It just takes time to absorb all these things.

I think you know I'm blogging because you're wiggling like crazy in my belly. :) Mommy loves you so so much!

I have so much more to say but for now, I'm gonna post this and go play with your brothers for a bit and then make dinner.

Love you!!
<3 Mommy
Sent from my Verizon Wireless BlackBerry

Monday, June 11, 2012

Luka,

Sorry Mommy has been gone for so long. I just haven't had the time to sit down and write this. We finally moved into our big house! :) It's so nice here. I can't wait until you come home and see it. Things are really starting to come together here. I betcha you'll like it too.

Nothing really new to report here. We were going to go to Philadelphia for your care but after weighing the options, we decided Pittsburgh was the better choice for everyone. We want to be closer to our family and friends because support is very crucial through all of this. We are a very close family. I talk to your Mee Maw on a daily basis just about and being 6 hours away from her would kill me. I have a ton of friends who can come rescue me if I need a break from the hospital for a while that live close to Children's. I know the area...Your brother's school will be more accessible. And Dr. Sherman is an amazing doctor. He may not be the nicest guy in the world but he has a very difficult job. I can't expect the guy to be all happy-go-lucky as he is sitting there telling parents their unborn child has a serious heart condition.

You're in good hands Baby Boy. I love you so very much! Keep getting stronger and growing bigger. I'll update again real soon. Tomorrow, we have a midwife appointment. Our first since your diagnosis. :) Wonder what Miss Cheryl and Miss Jan have to say? I'll let ya know.

Love,
Mommy
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Saturday, May 26, 2012

Luka,

It's been a few days since I've written little buddy but we've been super busy trying to get things packed and playing outside because it's too darned hot in the apartment.

You're getting super strong! I can feel you kicking even more and Daddy has even seen my belly wiggling. :) Last night, Daddy stuck his finger in my belly button (I dislike that greatly) but then I felt you lingering around my belly button too! :) It was pretty neat!

So a lady asked me today why I chose not to abort you. Well, why would I? My precious Luka, you are a human being and deserve every chance at life. There is a reason you are here. I swear part of that reason is to teach Daddy some humility because he can be quite mean to people who have problems that they can't help. Don't tell him I said that though. He'll get all mad and stuff. :-P But seriously, you have a purpose. You are my miracle and there is no way ever I could just throw you away over something like this. Regardless of whether your time on Earth is 1 day, 1 year or 100 years, I am going to cherish every moment I get with you and your older brothers.

Well little buddy. It's bedtime! Good night!

Mommy loves you!
Sent from my Verizon Wireless BlackBerry

Wednesday, May 23, 2012

LUCKY Luka...

Dude. You're in a swimming pool. I'm swimming in sweat. It's so hot out and has been these last few days, I feel like I am suffocating. I was pregnant with your brothers in the summer too...And it was hot back in 2001 and 2010. Seriously. This year has been ridiculous too. I've spent a lot of time soaking up the air conditioner and the fan. Zephyr's a goof and keeps shutting the fan off in the living room. Drives me nuts!!! He thinks it's funny. :)

Makes me wonder...Will you look just like Z? Will you look like me more or Daddy? Will you be silly just like your brothers and your Daddy or will you be like your Momma...Always yelling at the dudes to stop torturing one another? I can't wait to meet you!!

Mommy's falling asleep but I wanted to let you know I feel you wiggling around in my tummy and that I love you!

Love,
Mom <3
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Monday, May 21, 2012

My Little Man,

Mommy is sooooooooo happy today! Our insurance will cover us for Philly! You'll be in the number 2 hospital in the country for your surgery! How awesome is that? They have birthing rooms in the hospital so I can have you IN Children's Hospital of Philadelphia and recover down the hall from you! :)

We were supposed to go to Philadelphia on Thursday but we don't have the money to get there. We'll make it out there soon though, Buddy. Don't you worry! Mommy and Daddy will take good care of you and so will the doctors.

This morning, we went to Pink Champagne Cupcakery, Z and I, and we each got a cupcake and a drink. :) The lady prayed with us. You got so many people rooting for you dudester! Even those that don't know us.

We got Ashton's school thing figured out so when you are born, the family won't have to be split up.

***** Mommy and Daddy were running around doing some shopping so I had to take a break. *****

We got the call! June 10th we are outta here for the night and headed to Philly for another echo on the 11th! :) I can't wait to meet the team that is going to be a major part of our lives when you're born.

From what I gather, we are going to 'relocate' to Philly before you arrive. Also, CHOP has a birthing wing in their hospital especially for babies with birth defects. (Mommy hates that term. You don't have a defect, you are perfect the way you are!) This way, when you are born, you won't go to a different hospital. If I'd have had you at Magee's, you'd have been transferred to CHP and I'd have to stay behind. No way dude. Momma don't like that idea one bit! I want to be with you as much as possible!

*whew* Mommas sleepy. All this heat is making me tired. Today, it was like 86 degrees. Way to hot for this Momma. So I'm gonna get a bath and go to bed.

Sleep tight Little Luka!

Love,
Mom
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Sunday, May 20, 2012

Lucky Little Luka,

So, Mommy went into panic mode this morning for a bit. Sorry about that buddy. But I got linked up to the statistics of Children's Hospital of Pittsburgh and learned that their survival rate for babies after the Norwood, the first surgery, is low. Mommy can't have a hospital like that taking care of her precious little miracle boy. So I looked and found that Children's of Philly and the Children's in Boston are the highest ranked. So, I got the phone numbers for both hospitals and I'm calling tomorrow morning and getting you set up with the best darn surgical team I can. Nothing will stop me from fighting for you. Nothing at all. You are so very special and important and mean so much to your brothers, Daddy and I.

We are working our butts off on the house. It will be done soon so we'll have a nice place for you to come home to after you have your surgeries. I can't wait! Nice big house. Lots of memories for us to make. :)

Now, after all your surgeries, you'll have scars. But don't hate them, ok? Those scars mean you're a warrior. :) It means you're tough and you kicked the crap out of HLHS.

We decided your full name will be Luka Ray Thomas McDonald...But I think I'm gonna find a different name than Thomas. You need a middle name that means something like warrior or fighter or strong. :) Ray is your Daddy's middle name. Thomas was my Grandpa's name...But you need something more special. I'm gonna look now. Maybe Daddy and I can agree on something. :)

Love you Luka!

Love,
Mommy

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Saturday, May 19, 2012

My Lovely Luka,

So yesterday was rough for Daddy. He went to the gym, like he does every day (don't worry, you'll go to the gym and get big and strong like Daddy too someday) and the 'building manager' was down there. Wayne's just the dude who does Al the landlord's dirty work basically. Well, Wayne asked Daddy about you. Daddy explained your heart problem to him then Wayne said he had to give us an eviction notice. It's such crap. But at the same time, we have a nice big house down the street that will be safer for you to live in than this building. People don't care around here. The roof leaks, people smoke in the hallways...You can't be around smoke. No way. But anyway...Daddy was upset Wayne said anything about the eviction notice so he put his fist down on the table and the glass top shattered. It took me talking the landlord and Wayne down so they wouldn't call the cops. We sure don't need Daddy going to jail..But we also don't need anymore people trying to stress us out. We've been through a ton already.

Luka baby, keep on fighting. I definitely feel you kicking the crap out of me. So I know you're tough. <3

Talk to ya tomorrow Buddy!!

Love,
Mommy
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Friday, May 18, 2012

Little Luka,

I love you. We ALL love you! We've never met you but you have made a profound impact on so many already. Mommy heard so many stories of encouragement and how the Level 2 ultrasounds and echos scare the crap out of Mommas and Daddy's for no reason. I wanted to believe they were right. That us needing this ultrasound and echo was a mistake. That Dr. Sherman would tell us you were fine. That isn't the news we got. We got heartbreak. Devastation. Pain.

But it's all ok now. You are gonna pull through whatever it is that happens. Too many people love you to let you pass. Their prayers and thoughts will lift you up and our thoughts and prayers will guide those surgeons hands in helping to heal your little heart. You're gonna make it.

We have a long road ahead of us once you arrive, Luka. Show those doctors what a tough guy you are. Show them that your heart is gonna work just great after the surgeries. Come home safe so we can laugh and play and swim and run and jump and swing and have tickle fights.

All our love,
Mom, Dad, Ashton and Zephyr
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Holding On...

I'm losing it. I was hoping to make it home but I had to stop and cry. I've never been so fucking scared in my life. Tell me he has Down Syndrome. Tell me one of his kidneys doesn't work right. Tell me he's missing a fucking arm. But his heart??? What the fuck? He NEEDS his heart to stay alive! We don't even know if anything is wrong but the thought that something MIGHT be wrong is gut wrenching.

I walked into that ultrasound happy as hell yesterday to see my perfect little man. The baby we PLANNED! He wasn't an oopsie like Z. I peed on sticks to get a smiley face so I KNEW when to get it on. (LOL!) I left with uncertainty and fear.

Tomorrow morning, I will walk into that hospital with faith that everything is ok. My little dude is tough. He's so very wanted and already loved so so much. Nothing is wrong. The what ifs are definitely there and if something is wrong, we will deal with it. Shawn and I got this. :)

I hadn't planned any interventions this time. Luka was going to be born at home. He will be still if all is well with him. If not, I will make sure I have the best damn doctors taking care of my son. I will stop at nothing to ensure Luka's health and safety.


***Written the night before we got the news. Funny how things change, huh?***

Luka, we still love ya buddy. You'll get through this. <3
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Thursday, May 17, 2012

Hypoplas....Huh???

Today our biggest fears were confirmed.  Luka has a Congenital Heart Defect.  It's called Hypoplastic Left Heart Syndrome.  I'm still learning so here's a website about it.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/

Yeah.  It's pretty fucking serious...And yeah...I'm pretty fucking shattered.  It hurts.  Really bad.  I'm scouring the internet, especially Facebook, for families that have HLHS kids.  I want to know everything there is to know about my son's heart defect before he is born...I want to understand what the fuck is going on.  My little bitty man is safe swimming in my belly.  As soon as he's born, shit gets bad for him.  He's in there, happy as can be, totally unaware he has a heart problem.  He doesn't understand that as soon as he is born, he will endure a world of medicines, surgeries and strangers touching him...I won't get to hold my son when he is born.  He will be taken away from me and instantly started on medication to stabilize him.  This isn't fair.  It isn't supposed to be like this.  WE PLANNED this little dude.  We wanted him before he was even created. 

Luka Ray Thomas McDonald, you better pull through. 

Mommy, Daddy, Ashton and Zephyr all love you very much.  Stay safe sweety. 

Wednesday, May 16, 2012

Dearest Little Luka,

I feel you in there...Wiggling. I know you're gonna be ok. I do break down here and there when I think of the way things happened yesterday but Mommy's being strong for you. Daddy is being my rock. I couldn't make it through today if it weren't for his silly antics. You're gonna love him. Your big brothers sure do. :)

You're so strong. For being such a tiny guy, your kicks are fierce. That's how I know you're gonna be ok.

So listen...I need you to show those doctors tomorrow that you are perfect. That there is nothing wrong with your heart. Show them your heart like you showed off your wee-wee yesterday and we'll be good to go. Lol! You're apparently proud of the fact that you're a boy. That's ok. Mommy is too. That smoothie and muffin from Krysten tasted awesome, didn't they?

I'll see you tomorrow, Luka. Just remember to show us what we need to see so we can put this nightmare behind us.

We love you very much!

Love,
Mommy

Tuesday, May 15, 2012

Dear Luka,

First off, I want to say I love you. I always have ever since that first positive pregnancy test. You are such a wonderful and welcome addition to this family. Ashton, Zephyr, Daddy and I are all so very happy you're alive.

But, Baby Boy, please...Make sure the Doctors see that you are perfect on Thursday. No being a lazy bones. Today crushed me. To hear Miss Cheryl the midwife tell me that she wanted a level 2 ultrasound and an echo done as soon as possible...Well, it broke my heart. When she told me that she wasn't sure your little heart was perfect, I felt helpless. All I could mutter was 'What's wrong with my baby' before I lost it. I wanted to scream.

Luka, hearing you had Down Syndrome or one kidney or were missing some fingers, toes...Hell, even an arm or leg missing would be ok. But your heart? The one thing that your life depends on may be malfunctioning? It can't be. We heard it beating. It sounded perfect. Please just let it be that you're a silly little lazy nugget. Mommy, Daddy and your brothers don't want anything to go wrong. We are excited to have you in our lives. We love you.

See you on Thursday little man.

Mommy
Sent from my Verizon Wireless BlackBerry

Friday, May 11, 2012

Life Is A Journey...Don't Go Through It Alone.

I'm finally back on the blogging bandwagon. It's been almost a year...I feel it's necessary to express my opinions. Note: These are OPINIONS. This is how I feel, not how I expect you to feel.

How can a circle of friends who were so alike growing up or before having children, totally turn against one another once they become Mothers? I've been seeing this so much lately. I've said it before. We all do what we feel is best for our children, even if others don't agree. Why do we bash one another for our difference instead of embrace them? Why have we all suddenly become strangers?

I have friends from all walks of life and areas. From down the hall, to down the street, to across the country and even oceans apart. Some formula feed. Some breastfeed. Some do both. Some aren't Mothers yet. Some vaccinate. Some don't. Some cloth diaper. Some use disposables. Some use both. Some have babies in hospitals. Some have babies at home. Some have a baby in their car on the way to the hospital. What the point here is, we are all different. No matter what we do. Instead of losing friendships because you don't agree with something the other person does, embrace their decision and educate yourself on their point of view. It makes for an interesting discussion if you can be an adult and keep a level head. Some women are very passionate about their beliefs and that is fine...But don't sit here and try to cut down someone you call a friend because they want to do things differently than you would.

So here is something that pisses me off: Hospital vs. Home birth Debates. Just because one woman died while giving birth at home, does not automatically make home birthing deadly. In fact, the woman that died (this was in Melbourne, Australia by the way) actually died IN THE HOSPITAL the DAY AFTER giving birth. She went into cardiac arrest and despite efforts to save her, she lost her life. Here's the link:

http://www.dailymail.co.uk/health/article-2094348/Caroline-Lovell-Home-birth-advocate-dies-delivering-baby-daughter-home.html

Now, the sad reality of it all is that women die giving birth in hospitals all the time. Women die a lot less in home births because in a typical situation, Mom and baby are both in good health and the pregnancy has had no complications. A midwife won't knowingly risk her license by taking on a woman with known health issues that could be detrimental to Mother and child. Women die in hospitals more because of interventions. Inductions, pitocin, epidurals, cesarean sections, etc. The list goes on. Those interventions can have consequences. High blood pressure, higher risk of excessive bleeding, blood clotting, death. Doctors treat birth as though it's a condition that needs helped rather than a natural process. Hospitals didn't exist long ago. Children were typically born at home. And they survived just fine. Someone, somewhere decided that babies needed to be born in hospitals. Giving birth was now an emergency. And it isn't. Typically.

To shame a mother who decides to give birth at home is just ridiculous. When we PLAN a home birth, we do our homework. It isn't like we decide doctors are the devil and we're gonna give birth secretly in our home and hide it like a prom night dumpster baby. (I hate that term but some pro-hospital people make me feel as though this is the equivalent of what I'm doing.) I looked at my options and decided giving birth in my home is what's best for me with my third child.

Some background on my previous two births.

Ashton was born at Butler Memorial Hospital on September 6, 2001. He was delivered by Dr. Byers. Good doc. Seriously. Big ol' black dude with HUGE hands but a good guy just the same. I was allowed to roam freely for a bit. I was in the shower, used the birthing ball, was on my hands and knees. That part wasn't so bad. I requested the epidural because I was in a lot of pain. Especially because they gave me pitocin to speed up my contractions and make them more intense. I was also exhausted. I didn't know back then that I had any other option. I felt giving birth in a hospital with pain relief was just what people did. That's what they're there for, right? To help you give birth comfortably. Now, with Ashton, I wanted to breastfeed but I was scared. I was 19, I had no knowledge or support. I tried one time to get Ashton to latch on when I was at home and became engorged. It hurt so bad...But I just figured I'd dry up in a few days, like my Mom said. And he was formula fed. And vaccinated. I vaccinated him on schedule. He was also circumcised, just as I thought everyone did. I did zero research because 10 years ago, I didn't have the ability to look up everything I've learned over the last 2 years. Because of my lack of education back then, I have no doubt in my mind that Ashton's Asperger's, PTSD and OCD are somewhat caused by vaccines and in large part by the abuse he watched and endured at the hands of his biological Father.

Fast forward 9 years to November 10, 2010. I give birth to a healthy 7 pound baby at UPMC Seneca. He was 3 weeks early according to the doctors. I am sure he was too but that isn't the point here. My water broke late afternoon November 9th. I was scared out of my mind because I was worried him being early might be bad. So off we went to the hospital, mistake #1. I wasn't having contractions when I got there so the first thing they did was administer pitocin. They completely ignored my birth plan and made me lay in a bed, strapped to machines. As the pitocin was starting to take effect, knowing that pitocin makes contractions more intense, I agreed to an epidural. I was scared shitless. My baby boy was coming 3 weeks early. Mistake #2 was being scared. I wasn't allowed food at the hospital. I went from 6pm until almost 11am with nothing but ice chips. I wasn't allowed to move. I laid there, on my back, unable to sleep. All.Night.Long.

And now the #2 thing that bothers me. Breastfeeding debates.

Shawn told me when we got together and started discussing kids that he wanted his kids to be born naturally. No shots, born in the woods essentially and breastfed. I'd known nothing other than hospital births because that's all you see on TV. I agreed to try breastfeeding but was unsure if I could because I failed with Ashton.

Zephyr got the HepB shot at birth against my wishes because they took him from me to get APGAR scores and to clean him up. I almost wanted him to have shots because I was afraid he'd catch something and die. I'd spent more time researching breastfeeding because I knew I'd do that. I figured a doctor would know what to do about the shots.

The nurses bring Z to me and tell me it's time to nurse or they have to give him sugar water because he's hungry. I had no clue how to get him to latch on so I allowed the sugar water but asked for a pump. I wanted to make sure I was making milk. They wheel a pump into my room. I'd never seen a breast pump prior to that day so I had no clue what the hell to do. And no one wanted to help. No one told me milk doesn't come in until day 3-4. No one told me that he wouldn't eat much. No one told me he would be better at getting milk out than a pump. So I tried pumping, got nothing. Kept at it. Meanwhile, Z kept getting formula. We go home and I'm sent on my way with a hand pump. That thing was shit. It made my hand hurt. I was pumping and crying constantly. Pumping because my baby needed fed, crying because my hand hurt so bad. Because of the kindness of friends, Danya gave me her pump. A double electric pump. It was heaven. But I still wasn't keeping Z happy with my little output of milk. We topped him off with formula. There were nights when I'd make sure Shawn was out cold, skip pumping and give Z formula because it was easier. I was failing. Miserably. All I wanted was for my boobs to work so they could feed my son. I called WIC, crying because I wanted to give up. Shawn and I were arguing, Z was crying, everyone was tired...I'd had enough. Finally, I held a screaming baby in my arms, closed my eyes and let Z do the work. He found his way to my breast and latched on like a pro. I was feeding my baby. He suckled for HOURS! I was proud. So was Shawn. We'd did it, Z and I. We'd established a breastfeeding relationship. He was 6 weeks old.

We are 18 months into his life and he still nurses. He rarely gets sick. He's happy and independent. He shares and plays well with other children. He's very explorative and just all around amazing. He shows no signs of stopping anytime soon. And that's fine by me. What pisses me off is when people, especially my own Mother, make comments about like 'He's too old for that' or 'He's gonna be on your boob until college' or 'When he has teeth, you should wean him' or my favorite 'When he starts asking for it, it's time to cut him off'.

#1. He's not too old. The World Health Organization (WHO) recommends breastfeeding for 2 years and beyond so long as mother and child mutually desire.
http://www.who.int/topics/breastfeeding/en/

#2. The natural weaning age is between 2 and 7 years. He will definitely not be on the boob until college.

#3. He got teeth at 5 months. Should I have stopped especially when breast milk is the only food recommended until baby is at least 6 months of age and even then, it's only for fun until the age of 1? Um. No.

#4. Babies as for breast milk from birth. Their only form of communication is crying. That is how they ask for milk. My 18 month old doesn't exactly speak a lot, but he does cry in the middle of the night to nurse and he tugs at my shirt when he wants to nurse during the day. He eats plenty of regular solid foods but he gets comfort and still gets tons of nutrients from my milk.

Some folks argue that we wouldn't want to see a 3 year old with a bottle of formula, why is it appropriate for a 3 year old to breastfeed? Here's a simple answer. Formula is a food supplement. It isn't like breast milk at all. My milk changes over time to meet Z's needs. Formula, it always stays the same, sitting on a shelf in it's liquid or powder form.

I've been working on this for nearly 6 hours now. I'm tired. My fingers are weak. But I am going to quickly say a few more things before I go and save the rest of what's on my chest for a rainy day.

You aren't less of a parent because you vaccinate, formula feed, use disposable diapers, or put your child to sleep in a crib. You aren't less of a woman because you deliver in a hospital with drugs or have an emergency c-section.

You aren't Supermom because you don't vaccinate, breastfeed for 4,658 months, use cloth diapers and co-sleep until Junior is off to college. You aren't Superwoman because you pushed that breech baby out at home after 6 months of hard labor.

Stop the Mommy wars! And stop trying to scare everyone into what you believe!

I'll be back later with more. Until then...Love the hell out of those babies. They're only small for a short time.
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