Noah was born today!

I'm eventually going to write a blog post about his entire birth story. But not tonight. It's been a crazy, amazing, LONG day and this Momma needs some sleep. But to tide everyone over.. here is a picture of our handsome little angel. I fell in love instantly. There is no better feeling in the world than meeting your baby for the first time and holding him or her in your arms. I feel beyond blessed. He is perfect.


Thank you all for the amazing support. It really means  lot to us. Noah is so blessed to have so many people who care about him already. God is miraculous and I'm going to be sleeping with a huge smile on my face tonight. Goodnight <3

No baby for us yet.

We knew that before we were to have the c-section for Noah that we were going to have an amniocentesis done to make sure his little lungs were mature. I took two rounds of steroid shots to help hurry his lungs along with the process. His chances of having immature lungs at 38 weeks was 2%. And guess what... they aren't ready yet.

Now I feel so silly for getting my hopes up that we would be having him Tuesday. But with a 2% chance, who wouldn't?

Here's how it goes:

Immature lungs: 14-45
Mature lungs: 50+

Noah's are at 42. I'm not sure what the number stands for exactly. But he's so close it's unreal. My due date may be a little off and I could actually only be 36 or 37 weeks. According to the research I've done boy's lung's are slower to mature than girls are. So who knows. Honestly it's got me feeling a little worried. The chances of Noah having Spina Bifida were 1 in 10,000. And now he's defied this very small 2% chance as well. I just pray and pray that little guy doesn't have anything else going against him. My biggest fear about having an amnio done was finding out last minute that he also has chromosomal deletions or duplicates or other diagnosis and disorders. Often times when a baby has a defect it's common to have other problems as well. It's not always the case, but it does happen.

Noah's amniotic fluid was sent to Minnesota for further testing. The nurse scheduled us for a noon c-section for Friday. Which happens to be tomorrow. These past few days have drug on so much. I'm anxiously awaiting a call from our high risk specialist to confirm that Noah's lungs will be ready and that the c-section is still scheduled. Which I haven't received. The results were supposed to be in today and TODAY she was supposed to call. Which means I'll be calling Labor and Delivery early tomorrow morning to confirm that we need to come in I guess. I wish I knew what was going on. I just want to know that everything came back normal with Noah and that by tomorrow his lungs will be past 50 and I'll get to meet my sweet little guy. Sigh. I don't even feel the excited butterflies that I had Monday night. I'm afraid to get my hopes up, and even more afraid to hear bad news. I love Noah so much I can't even imagine more things going wrong. I'm trying to stay positive and be thankful though.

Even though I am disappointed we couldn't meet our little guy sooner I am so glad that we found out that his lungs weren't ready before having him. The thought of seeing him after the delivery and not hearing a cry completely breaks my heart. I can't even imagine how scared I would have been. Babies with immature lungs usually require a 6 day NICU stay. Which would have meant 6 days before Noah could have had his surgery.. which isn't okay. The sooner the surgery the better and less risk of an infection. I'm putting all of my faith into God. Tuesday just wasn't meant to be and Noah needs a little more time to cook. I love having him in my belly and after finally facing my fears with the amniocentesis it's was almost a nice relief to go home and relax. I'll post a blog later about our hospital experience and the amnio.

Tomorrow is the big day!

Haven't updated in a while... so here we are now. It's 10:34pm and we go in at 5:00am tomorrow to start the procedures. Gosh. I can't even get over how absurd this feels. Being a first time Mom I'm not even completely convinced that there is a real baby in my tummy. Seems like just a little piece of me that moves around every now and then.

All I've done today is think about how different life is going to be now. Which is a thought most women have when they first find out their pregnant of coarse... but it's just now really starting to hit me. I created a whole new little human. This little guy has completely consumed my thoughts and life thus far and it's only about to continue and get worse. Which I'm completely okay with.

I really wanted to make it a point to write a post the night before Noah's birth just so I could always remember exactly how I felt and be able to look back on it. But I'm speechless. No amount of words can really fully describe my emotions right now. I guess because there are too many. I don't even know where to begin. Mainly, I feel like I have no idea what to expect. I have spent countless nights researching spina bifida and the procedures and surgeries... but no amount of research can really make you feel 100% prepared.

I guess the same goes for being a new Mother. I've read the baby books and know as much as they can tell me. But I'm still going to be scared to hold him at first. Not just because of all of his medical problems. I just don't want to hurt the little guy. I'm going to be clueless when it comes to breast-feeding. I know the ins and outs, but to be honest. I'm going to be nervous and probably mess up a few times. Nothing in the world can really prepare you for this. No amount of advice or research. Ever. I pray that my motherly instincts will kick in and most of it will come natural.

Noah is rolling and stretching and moving a lot lately. Right now even. I think he can sense that something is up. It makes my heart feel amazing when he moves inside me. I never want to forget this feeling. The emotional bond between a baby while in the womb and a mother is the most amazing bond I've experienced in my life. Thus far, of coarse. I'm sure holding him and seeing him will easily take the cake. I think about how I'm going to miss being pregnant all the time. As soon as I have Noah he'll be rushed away to the NICU and I just know I'm going to feel so alone. He's been a part of me for 9 whole months now. And as soon as he's born I'll be without him for a while. At least I'm going to get a good rest of my lifetime with him, but still.

This may seem silly, but I feel like as long as he has all of his body parts. Two eyes, ears, a nose, tongue, boy parts. All of the essentials and then some. I'll be so proud and think he's so wonderful and beautiful that I won't even care if his legs move. If Noah is healthy in every other way possible I honestly think it won't matter to me as much. I love him just the way he is already. I just pray that we receive the best possible outcome of this horrible defect. I pray for no complications, a quick recovery and for Noah to be in Mommy's arms as soon as possible.

Steven is off of work and on his way home. Time for a bubble bath. And some cuddle/relaxing/nap time before we head in and get this journey started. I don't know what will happen... but I have a good feeling that tomorrow will be the most amazing day of our entire lives. And I'm ready.

ONE WEEK LEFT?!

WHAT IS HAPPENING! I'm having a baby next week. NEXT WEEK. It doesn't feel real at all. It feels like something we've just been dreaming of and will never actually happen. Did I mention I'm having Noah next week? Well I am! And it's crazy. Definitely still trying to wrap my mind around it.

A letter to Noah from Mommy

 

Dear Noah,

Right now you are rolling around in my tummy probably sucking on your little hand or foot. Daddy and I have noticed that seems to be your favorite activity lately because of all of your ultrasounds. In only 9 days you will go through a huge change. No more cozy, cuddly, warm tummy. No more hearing my heartbeat or enjoying how yummy what I had for breakfast was. You will just be sleeping away or hanging out in my tummy as usual and then some unfamiliar voice will take you out and bring you into this big crazy world. Being a baby it's okay to be helpless and scared... don't worry you won't remember any of this part anyways later in life anyway. We've shared this tummy of mine for 9 whole months now and it's a big big change. For both me and you.

But goodness.. I just can't wait to meet you. Daddy and I have stayed up for countless hours feeling you move and enjoying how wonderful being pregnant with you is. We've never experienced anything like it before in our lives. You love the sound of your daddy's voice... we can tell. You get so excited when he comes home and you hear him. We love that. I will never get tired of feeling you sit on my bladder or have hiccups at awkward times of the night. Getting up to go to the bathroom has become second nature to me and waking up to feel the soothing rhythm of your hiccups only reassures me that you are doing okay.  Needless to say, Mommy is a little scared too. Sometimes I just sit and stare at my tummy and imagine what life is going to be like with you here. I'm so excited to see your sweet little face. The ultrasound technicians have already told us many times that you have a bunch of hair and chubby chubby cheeks :)

Lately you failed two non-stress tests and passed two as well. We are so so so proud of you for passing these last two. You are the toughest little guy we know. The first time you passed... guess what Mommy and Daddy did. We fist bumped. Normal adults would probably hug or just smile... nope. Not us. We definitely fist bumped. Both times. I'm sure after you are born and go through your surgeries we'll do the same as well then.

In your weekly ultrasounds... guess what you've been doing. Playing with your toes! I know you may not be able to feel your little toes. But it sure is cute. And reminds us that you'll most likely have a good sense of humor just like Mommy and Daddy! Who needs toes anyways? They're more fun to play with than anything! You also suck on anything you can find in my tummy. Toes, arm, thumb, anything! I can't wait to be able to feed you. I'm sure my little chunk will have a good appetite and I can't wait. 

My favorite moments from this pregnancy: 

Listening to your heart beat.  I'll never forget the first time me and Daddy heard it. I could tear just thinking about it. As a Mother there is absolutely no better sound in the world. Now my next happy moment like that will be the first time I hear you cry. It will be such a beautiful moment. I'm sure I'll be crying louder than you will be. Thinking about it melts my heart so much.

When I first felt you move. I was 18 weeks and I remember it perfectly. I was sitting at work and I can't even describe it. I just felt you. It was very soft and subtle. But I knew exactly what it was. I couldn't wait to share this feeling with Daddy. He felt you soon after. You've always been strong and good at letting us know you are there and doing somersaults! 

Your first hiccups! You silly baby, woke me up at 8 in the morning with what felt like a little drum beat. I'm sure you've had hiccups prior to this... but this was Mommy's first time feeling them. Now you get hiccups after every single time I eat. I think you get excited and try to suck or "eat" the fluid around you and get hiccups. Like I said, Mommy's little chunk :) I can't wait to see how adorable you are with the hiccups once you are out of my tummy. I sit and picture it all the time.

Day-dreaming about what you will look like. I don't care if you have red hair, blue hair, black hair, ANYTHING! Life is all about surprises and I'm sure you'll surprise us once you are born! I picture you with dark brown thick hair like Daddy. Sometimes I picture you with blonde hair like I had when I was born. Or maybe with light brown hair like me now. I bet you have Daddy's big lips :) And my bigger eyes. Due to dominant genes... I'm betting brown hair and brown eyes. But we'll see. I'll absolutely love you no matter what. We just want to meet you already! The suspense is killing us.

What I can't wait for:

When you grab onto my finger for the first time. I love looking at pictures of little babies doing that and it's always been something I've looked forward to.

Holding you! To feel your little body all cuddled up against mine. I can't even imagine it. I've rarely ever held babies before and I'm sure I'll be in for a sweet surprise when I first get to hold you. I'm sure it will be something I'll never forget.

Seeing that you recognize my voice. You hear my laugh, cry, sing, and everything in between. Once you realize that I'm your Mommy and know the sound of my voice... *sigh* I just can't wait.

When you get to meet the rest of your family. Grandma, Aunt Gwen, Great Grandma Nana, and all the rest. I can't wait to show off how precious you are. Expect lots of random cuddles.

Even when you get to meet Toby :) I hope you both get along. Steven and I joke all the time about how funny it would be if you hated dogs. Your whole nursery theme is puppies and lots of your clothes include little dogs and puppies as well. I'm sure you'll like them though.. we secretly dream of you becoming a vet. No pressure or anything ;)

Overall, we just love you Noah. 

If you can't already tell.. maybe someday you'll look back and read these blog posts and realize how much having you has impacted our lives. Our first pregnancy and baby. The first time we've ever experienced these things and feelings. I can't even put into words how much I love you. It's a crazy feeling to love someone so much that you've never even met. I wouldn't take back this whole experience (even the not so good parts) for the entire world. I can't believe our journey is coming to an end. I've been pregnant with you for a whole 9 months now. Doesn't even seem possible. Sometimes it doesn't even feel real how soon you will be here. It has all flown by so quickly. It's an experience I never want to forget.

Having you will be the best and most wonderful thing Steven and I do with our lives. Always always always remember that.

I love you to the moon and back little one. 

-Mommy

God is in control.

This pregnancy has brought me a lot closer to God. I know in my heart that I didn't do anything purposely to cause Noah to have this disability. I never drank, smoked, dyed my hair, anything remotely bad in the slightest. I couldn't even bring myself to eat harmless fish because of my fear of hurting him. And that was WAY before we found out about his diagnosis. My main focus has always been his health. 

I know deep down that I NEEDED God.
I NEEDED a reason as to why this was happening.

I pray for strength every night. I don't know or understand why this happened to us or Noah. The only thing getting me through this is believing that someone out there MEANT for this to happen.


God has blessed us with a very special, wonderful little boy and he has enough faith in us to believe that we can handle it. That alone has gotten me through some rough times and appointments. Some days I don't feel like a strong enough woman. I break down and let things to get to me. I'm not perfect in the slightest. I had a hard time accepting that my son would never lead a "normal" life. I was angry and scared. Some days I still find myself wondering, why us? Then I catch myself and remind myself that God has a bigger and more special plan for us than we ever had for ourselves. Instead of being sad and feeling bad for Noah, I need to be proud and thankful. Noah is going to show us a whole new meaning to life.

Now that we are literally entering the final stretch of this pregnancy, I need God more than ever. I pray for not only strength, but patience, and courage. I pray that the worst is over. A lot of SB moms that I've talked to all agree that pregnancy is the hardest part. The scariest thing is the "unknown". Not knowing what your baby will be capable of or what he or she will be like at all. Holding your baby will make it all worth it. I've heard that about a million times, and I'm SO ready. My sweet miracle, angel baby. I know seeing his face will make everything okay. No matter what happens next. God is in control and we are all just along for the ride. This pregnancy has been nothing short of a crazy unpredictable journey and it's something I never expected to experience in my life. Not just a high risk, special needs baby pregnancy... just pregnancy in general. Steven and I say it all the time, Noah is our blessing. God gave him to us because he knew we'd appreciate the fact we COULD conceive on our own despite what doctors had told us.

Is it crazy to say that I feel like God really has something special planned for us? This wasn't the road I expected to be on at all... but I honestly can't wait to see what's next.

Pediatrician? Check!

Yay! We are breathing a big sigh of relief :)
We finally found a good pediatrician for our little Noah. We had a few options to go through different places and finally decided to stick with Mercy Hospital. All of Noah's doctors will be through there so hopefully it'll make it easier on us with all of the frequent appointments he'll be having. We set up a consultation to see a brand new pediatrician and honestly we were very nervous about it. Our biggest goal was to find a pediatrician who was very familiar with Spina Bifida and had treated other patients with it. Sadly this goal was somewhat unachievable. We've always had to option to receive treatment in St. Louis at their Spina Bifida clinic but we never chose to. It's too far away from home. After meeting Dr. Stole we automatically decided that her lack of experience with Spina Bifida wasn't really as important as we thought. She's been in her practice for many years and plans on retiring in Springfield. We had it in our heads that she would be fresh out of medical school and unreliable and jump hospitals frequently. We were very pleased to find out that this isn't the case. We need a pediatrician to be with him throughout his childhood and will know his exact case and abilities and so fourth. She really seemed to want Noah as a patient! Which is a good feeling. She said she'd brush up on her knowledge of SB and was excited to have it in her resume that she's seen and treated a child with this special need. The extra effort she's willing to put into our little guy is amazing. I'm so glad we didn't have to settle with a pediatrician out of town. She has a light-hearted outgoing personality and I feel really good about it. So glad that this decision is over. She's going to come meet Noah after he is born and visit with us for a while and see how we're doing and how everything is going after all of the surgeries. I'm so pleased with all of the medical staff we've met so far. It really takes a special person to be so caring and committed to so many patients and I really feel like Noah will be in the best hands. Phew. My Mommy instincts are telling me that so far everything is looking good and now we can finally relax a little before our little man arrives!

Another Life Changing Decision to Make

As everyone is probably well aware... after Noah's diagnosis we had to decide what we were going to do and had very little time to do so. Whether or not we should end the pregnancy, look into adoption, keep our sweet little guy, or even try to get the fetal surgery set up. We kept everyone's opinions in mind and our goal was to stay optimistic and explore each option to the fullest. Of coarse we ended up continuing the pregnancy and instead of the very risky fetal surgery (Which my insurance wouldn't have covered anyways) we decided to just wait for his closure surgery to happen the day after his birth. Being hit with all of these choices at once was completely overwhelming. We did days and days worth of research and within a few weeks we were forced to make a HUGE life changing decision. It was the hardest thing I've ever had to endure. We've loved Noah from day one, ever since we saw those double lines on the very first (of eight) pregnancy tests. We promised to never give up on our little guy. He was fighting to survive and doing a very good job at it. It was something I absolutely would never wish upon any parent. Especially first time, young parents like us. It wasn't only hard on us, but our families and friends as well. One day we would be set on one decision and the next day we would have completely changed our minds. Honestly, we just didn't know. We both admit that almost every single decision didn't quite feel right 100% of the time. It was hard to stick to one decision so soon and make a real commitment to it. We even officially decided at the last minute possible. I guess it was meant to work that way because we have never once regretted it since. My biggest fear was making a choice I wasn't completely dead set on and regretting it. A decision like that isn't to be taken lightly. It's a very painful, heart-wrenching process... but now that we are nearing the end of this pregnancy and anxiously awaiting the arrival of our son, looking back it's all been completely worth it.

So now.. my point of this blog post is that you would think only having one month left things would be pretty easy and set in stone by now, however there is one last final life changing decision that had to be made.

Let me explain a little first. Noah's back closure surgery will happen one day after his birth via c-section. Our Neurosurgeon wants to make sure he is stable and not stressed after his birth before he goes into surgery. Which is completely understandable. I was upset at first because the longer he goes without his closure surgery the higher the risk of his lesion getting infected and damaging more nerves. Usually the surgery is done the same day as the c-section. He's the best pediatric neuro in town though and we are trusting that he knows best. Anyway, Noah's original c-section date was October 2nd. With his due date being October 5th, I was very surprised they didn't want to take him sooner due to the risk of me going into labor before then. But the longer he cooks the better, so once again we were just trusting our High Risk Specialist and hoping she knew best as well.

THEN... we find out that Dr. Sami (neurosurgeon) had planned a vacation from October 5th-15th. Great. So instead of that day.. Noah's birthday was moved up to September 25th. Which would make him 38 weeks gestation and exactly a full term baby. That was fine with us. The bigger I get the more uncomfortable I am and ready for him to be here. We then received a call from Dr. Griener (high risk specialist) saying that since he'll barely be full term and we have a limited amount of time with Dr. Sami (Which is important incase he needs a shunt placed after a few weeks) she wanted to schedule an amniocentesis to make sure his lungs were fully developed.

Maybe it's just me... but an amniocentesis isn't exactly something desirable to me. For those of you who might be unfamiliar with the term.. It's a procedure where they have a HUGE needle and insert it into your stomach (away from baby hopefully) and draw up amniotic fluid. The process is known to be extremely painful. Some doctors offer a local anesthetic.. but lucky me. Mine does not. I'll feel the needle going through my skin which will cause a contraction as it enters my uterus. She's also drawing up more fluid than usual because if his lungs are shown as not being mature she'll need to send off extra fluid to another place to test and see how much longer it will be until his lungs ARE mature enough for birth.

Here is my two-cents on the subject. If Noah's lungs are not mature.. we would be having someone else do the back closure because Dr. Sami will be out of town on vacation. Which I never agreed with. Did I mention Dr. Sami is the best pediatric neuro in town?! She said if Noah's lungs are not mature we COULD still have the c-section and just hope Noah won't need very much extra oxygen and it would delay his surgery for a while until he is completely stable. Either way, if his lungs are not mature.. we're (for lack of better words) screwed.

Then Dr. Griener continued to go on and on about how my hands will have to be held down and I would NOT be able to move at all during the procedure. She mentioned that she's had women try to pull the needle out of their stomach, move away from the needle, cry, scream, etc.

Thirty-eight weeks is completely full term. His chances of having under-developed lungs is 5%.

She's even going to give me two steroid shots to help him along. Making his chances 2%.

My other option was to opt out on the amnio and Dr. Sami completely and go to the St. Louis Spina Bifida Hospital and have them perform my c-section, his back closure and shunt surgery.

If I were to chose this option, it would mean that Steven wouldn't be able to see Noah. Steven planned on taking two days off (c-section day and surgery day) and seeing Noah before and after work everyday. It also means that none of my family would be able to see Noah either. Everyone has to work, and has other prior commitments. Being a first time mother all alone in a strange hospital I'm not familiar with doesn't seem appealing to me at all. But... I'd get to carry Noah longer and skip the amnio and shots completely.

The decision was completely up to me. Do what's best and easiest for me.. or do what is right for my Son and family. 

And to make matters even harder... I was only given one day to decide. Even though the thought of a giant needle in my stomach goes completely against my natural instincts as a mother and scares the living daylight out of me.. I figured that Noah will go through so many surgeries and procedures that if given the chance, he wouldn't want to. The day of our C-Section will be the very first surgery I've ever gone through. The thought of the procedure scares me too, but it'll be something Noah and I will have in common. We'll go through it together. My first surgery and his first the following day. We'll be recovering at the same time. Noah being strong and knowing all of the scary surgeries he'll overcome during his life gives me the strength to go through with the amniocentesis. I need to do what's right and best for everyone and put myself and my feeling and worries aside. I've never loved or cared for anyone more in my entire life. Noah has become my world already and I'm ready to prove that I'd do absolutely anything for him. Push my own limits, and sacrifice whatever it takes for him.

I have never regretted thinking about ending my pregnancy. I never will. It was an over-whelming time and learning all of the things Noah won't be able to do at once is scary and ending the pregnancy seemed like the easiest and kindest thing we could do for him. Being a loving mother, I'd rather embrace the fact I cared about him so much to think every option through. This pregnancy has been a crazy, whirlwind of a journey. And I thank God every single night for standing by me and giving me the strength to give Noah a chance no matter how scary it may be. But honestly, I don't think God was the one who gave me strength. It was Noah. My sweet little angel sent directly from heaven itself. Every appointment we had where we heard his little heart chugging along. He never gave up. All he knows is how to be strong and survive. Every kick we've seen on ultrasound, every limit he tries to push himself to already. Words cannot even express how proud I am to call him my son already. Meeting him will absolutely without a doubt be the best day of my life. I've never been more inspired by anyone before. And I've never even met him.

And now to end this with a quote that has gotten me through a lot...

"No one else will ever know the strength of my LOVE for you... 

afterall you are the only person who know what my heart sounds like from the inside."