Shunt Happens

October 14th

 

The Plan: Take Noah to Steven's work picnic, socialize, eat some food, then visit Steven's family.

 

What Really Happened: Late to the work picnic, half-way through Noah started screaming at the top of his lungs, couldn't find a place to sit and eat where we could park the stroller, ended up being late to Steven's family's house and THEN...

 

His back started leaking spinal fluid.

 

Icing on top of the horrible day cake? Immediately after, tornado warning. We were speechless.

 

Oh man. Talk about overwhelming. Earlier that day we gave Noah a bath and while I got ready Steven changed him into an outfit I picked out and I accused him of not drying him off enough because his onesie was wet. That was one accusation I'll always regret and Steven got a very heartfelt apology for. I called Nurse on Call and we took him to the ER for the first time. We were both very calm, cool, and collected. We both knew a shunt was going to be needed. We just didn't know when. I had researched a bunch of facts about VP shunt placement surgery and fet like I had a good grasp on what to expect. We were admitted into our first hospital room on the pediatrics floor and cuddled up on the hospital bed together with Noah by our bedside, ready for whatever tomorrow brought.

 

The next day they took Noah back for surgery to place his first VP shunt. Tears were shed and prayers were said. Everything went fine, he went into anesthesia and came out okay too. We waited a week for his shunt to heal enough to take him home and a week later we were homeward bound again. We praised God for no complications.



Our Newborn

I loved Noah without a shunt and continue to love him with one. But I just thank God for allowing us the opportunity to experience having a shunt-free newborn. Being a new mom is stressful enough. Learning how to handle your newborn, burping and feeding them introduces you to a whole new world of responsibilities. We had 2 weeks to enjoy it and live our lives "normally". No constantly looking out for a shunt malfunction, no worrying about laying them on their shunt, or even incision care.

We were really blessed to be able to somewhat "ease" into Spina Bifida. That's a positive thing about this defect. It's not even all compltely apparent at birth. Babies don't need to walk. So when they're all snug and covered up in their car seat nobody even notices your baby is any different from the next. You have time to accept what comes your way whenever you get to it. Which doesn't stop a person from worrying of coarse, but it helps.

For the first few weeks Noah slept all day every 2 hours

and woke up to eat, look around and then back to bed.

Now that Noah is older, looking back I've realized that the newborn stage is probably the hardest time when you have a baby. Your baby simply wants what it needs and then it's done with you. It took me a while to bond and feel a real deep connection with Noah. I bonded SO much with him during my pregnancy and once your baby is born you have to start the process all over. You have a face to put to the name and memories in your belly. It's all kind of surreal. But I loved every minute of it and now looking back I'd give anything to relive these moments over and over again.

Our NICU Experience

With Noah's back surgery, possible shunt surgery and other complications that could arise the hospital stay we were told to expect was 4-6 weeks long.

When did we break out?

After 5 days.

If you are expecting a Spina Bifida baby and you're reading this... I hope this post gives you some hope. I definitely didn't have any. I thought my birth experience and his NICU stay would be a sad, horrible memory. I was very very wrong. I'm not sure if it's because we made the best out of the situation that we were given or the fact that everything went way better than what we hoped... but it was one of the best times of my life. Believe it or not.

At around 7 months we had our NICU tour. All I remember from it was thinking about how awful it was going to be. How all of the babies looked so fragile and sickly. How all of the parents looked heart-broken and drained. I made it out to the parking lot before the tears came. Between the pregnancy horomones and just the fact we never imagined having a baby that needed to be in the NICU at all; it was very overwhelming.

But instead, Noah went back to the NICU after his back surgery just like we planned. PLANNED- Ahh. Such a comforting word to me. Which makes me wonder if we wouldn't have known he'd be in the NICU if things would have been drastically harder? Hmm. Anyway, Steven wheeled me down to see him and my heart fluttered with immense joy. I couldn't wait to see him again. I was so doped up from morphine and pain killers from my surgery I honestly didn't even worry about his back surgery or the fact that anything could go wrong. I mean.. the child just learned how to breathe! And he's going to go under anesthetic and have a major surgery? Maybe it was a good thing I was so drugged...

Still barely mobile they placed Noah in my arms. I just remember looking at him and wondering if he was really ours. Being a new parent is such a bizzare feeling. You know that you carried this baby for nine months, you felt it move, saw it on ultrasound, but once it's here it's like... "Wow what? Where did you come from?" I had a hard time connecting that my huge belly meant that there was a REAL baby in there!

The nurses called our NICU nurse to have us leave and come back to our room so I could take more pain medicine and I was OUT. Hence the very short, sweet "Noah is here" blog post. I was so tired and happy. We all were. Steven would take me down to the NICU and we'd be all smiles. Excited and ready to see Noah and look around to see nothing but those heartbroken, drained parents. They must have thought we were absolutely crazy. But even though this was their worst case scenario... this was our best and we were enjoying every single second.

I then started pumping for the first time. I wanted Noah to get all of the nutrients from me that he could. Especially at first. I was so excited to breast feed and knew based on our circumstances my first experience would be with a pump. It honestly wasn't bad.. it took a few days for my colostrum to come in but I was just glad that I had the chance to pump and give it to him. We soon tried breast feeding and Noah had trouble latching on... we were both learning the best that we could and finally got everything going right. Soon he was just nursing and didn't need any supplmenting at all. Definite proud Mommy moment.

His vitals all remained stable, his head ultrasound (monitoring his fluid) remained stable and we were in heaven.

After work Steven would come by the hospital and visit with Noah. His love for him was apparent at an early time too. I'm very thankful for that.

We spent a night in a care by parent room. Which was HOT, DEPRESSING and MISERABLE. If it wasn't for the fact that I actually got to take care of Noah for the first time I would have just said no and went home. Okay maybe I'm being completely over dramatic... but gosh. Imagine a hotel room with 90's furniture and decor, a small vintage tv with 3 channels, no windows and a creepy old bathroom. Noah and I laid together and nursed all evening. I loved looking at him. Just getting to stare all I wanted and take in everything about him. Not once did I think about him moving his legs. It didn't matter. He and I were alone together and that's all I wanted at the time.

The next day we went home.

Noah's Birth Story

September 28th we woke up without any special or specific plans for the day...

We waited all night the night before for a phone call from our High Risk Specialist to get the "go ahead" for the C-Section on the 28th. After not recieving any call or update we started to worry and wonder why after being so reliable during our pregnancy Dr. Greiner had suddenly lost contact and we had no idea what was going on. We started our morning and had breakfast when my Mother called.

Dr. Greiner had called her and filled her in on what had happened...

For some reason she didn't have my number so she called my Mother instead and informed her that Mercy never sent the amniotic fluid to be tested further after we found out his lungs weren't mature. She explained that she was very upset about the incident and apologized for not having any answers as to why it didn't get sent and was instead, wasted.

She gave me three options...

1st option: Perform another amniocentesis.

Although it wasn't entirely unbearable.. I really didn't want to do it again. The risks of something going wrong like my water breaking, bleeding, and hurting Noah were much greater.

2nd option: Wait a few weeks and deliver Noah in St. Louis.

It seemed like the safest option. He wouldn't be harmed and his lungs would be ready. Only downfall is that not all of our families would be there and Steven wouldn't be able to drive from Springfield to St. Louis after work every night to see him like he would if he was delivered at Mercy.

3rd option: Go ahead with the C-Section today and hope for the best.

In this situation, we would be going into it blind. With no clue if Noah's lungs would be ready or not. But my family would be there and we would be getting it over with.

Our decision was to take our chances and deliver later that day...

So once more we said some prayers, packed up our hospital bags, took some last minute pictures and headed towards Mercy Hospital, still not knowing what to expect.

Family arrived and we were admitted to our Labor and Delivery room...

Once we were in our room things began to move very quickly. We were in a smaller room than last time and just knowing that this was happening FOR SURE had me shaking and more nervous than I've ever been in my entire life. Before I knew it they brought in a hair cap for me and scrubs for Steven. The nurse was explaining what we were going to do whenever we went back for the C-Section and I just kept thinking.. what? We've only been here for like 10 minutes. Give me a second to breathe. I went to the bathroom before they took me back just to try to give myself some time to think and prepare mentally for what was about to happen. I had waited 9 long months for this day and now it was moving by faster than I could even take in.

I said goodbye to my family and walked with two nurses into the surgery room..

On our walk back to the C-Section room I repeated over and over... I'm going to throw up. I'm going to throw up. I'm not sure I can do this. The nurses laughed and said that everything would be okay. They see tons of c-sections a day. Back to back all day every day and to them it's not a big deal at all. Having never had a surgery before in my life, my opinion was a little different. I was very nervous. I couldn't control my body from shaking and I just remember not feeling like myself at all. Like I was in a dream and just wanted it to be over with or slow down so I could process it at least. The room was very silver and cold. The worst mistake I made was looking around and noticing the tools that were to be used for the operation. The knives and tong like devices.

The nurse had me sit on the edge of the table to prepare for the spinal tap. Then we started..

I was still shaking and extremely nauseous. I sat on the table for what felt like forever. The nurses then began to laugh and inform me that nobody even paged the anesthesiologist! Yeah really funny guys! I'm just sitting here about to have a heart attack and nobody called her! What if they left a knife in me or something? She finally came in and we started. The poor little nurse that was in the L&D room with me offered to hold my hands while the needle and medicine were inserted and I nearly ripped her hands clear off. Mainly I was just nervous and the thought of being numb and not able to move really freaked me out. She said the anesthesia would take effect almost immediatly and they would lay me down as soon as possible.

I felt a rush of numbness race through my feet and legs...

I asked for Steven and right as I looked over he walked through the door with a big reassuring smile on his face. I was reminded that even though the C-Section was scary... the reward would be our son. And once more, I couldn't wait. He held my hand tight and sat down beside me. I felt tugging and pulling on my upper stomach. I was only numb from about the belly button down. From that point on I just kept saying... I'm going to throw up. I feel like I'm going to throw up. The anesthesiologist was my best friend during the procedure. She pumped my IV full on anti-nausea medicine the entire time and it helped a lot.

We waited and listened intently for the sound of a cry...

The surgeon said, "Okay one big push and he'll be out." I felt the pressure and immediatly we heard a big loud beautiful cry. Our son made it. He may have had a tough road up until this point and from this point on... but all that I needed to know was that he made it through the birth. His lungs were just fine and that was amazing. Steven and I looked at each other in amazement as they continued sewing me up. We both cried and held hands so tight with huge smiles. We were crying just as much as Noah was. Maybe even more. The nurses took him to the open incubator and evaluated him and cleaned him up a little. He scored a 8, 9 on his Apgar score and the nurse yelled out, "He's kicking his legs and his bubble is covered with skin!" I knew that him kicking wasn't a sure indicator of anything... but what suprised me was that his bubble wasn't "blister like" like we thought it was.

Steven went over to see our Son for the first time...

The nurses were crowding Noah and Steven joined them soon after. I asked Steven, "Does he have all of his body parts? Two eyes, ears, all his fingers?" He replied back, "Yes and he's wonderful." One nurse told Steven to take a picture and bring it back over to me and show me. He did. I kept saying go back over and take another and show me! I couldn't get enough. Then the nurse wrapped him up and let Steven hold him and bring him over to me. We stared in amazement at our baby. The baby we had waited so long fo. The baby we stayed up nights worried and praying about. He was here. In Daddy's arms and beside Mommy. Our family was complete and there was absolutely no better feeling in the world. There are barely even words to describe it. It's an experience I know neither of us will ever forget.

Back to our L&D room for Mommy's first turn to hold Noah...

They transfered me onto a bed and rolled me into our Labor and Delivery room to make sure my vitals were remaining stable. Dr. Sami (Neurosurgeon) came in and said that he looked at Noah and was willing to go ahead and take him into surgery right away because he didn't have any other plans for the day. We agreed to it and signed some paper work. Then they rolled Noah into my room. I couldn't stop smiling. Our families were in the room and got to see me holding my baby for the very first time. I gazed in absolute amazement. Once again, no words. Impossible to describe. It was everything I had every imagined and more. He was so beautiful and sweet. I couldn't believe that just this morning this sweet little angel was in my tummy. I still can't believe it.

My fears and doubts were washed away...

The moment I laid eyes on him. Just seeing him gave me all the strength I knew I'd ever need. I knew I would move mountains for this child and I still would. I have no doubts about it. Concieving, carrying, and delivering Noah has changed my life forever. When I got pregnant I was just a girl. I never knew any pain. Any real hardships. I finally felt like a woman after seeing my son. A mother. I've experienced greif, heartbreak, sorrow, depression and lived to tell the tale. I would do it all over again for this little guy. I've also experienced love like I've never experienced before. Strength. Passion. Gained knowledge and wisdom. And he is so worth it. Noah went through his first surgery at only a couple hours old. We smiled all the way into the NICU and never let anything get us down. Leg movement or not.. our blessing was now in the world and life was just perfect.

Amniocentisis Experience (Back Tracking A Little Bit)

I know this is WAY overdue. About a month overdue to be exact. But better late than never I supose.


One of my hopes for this blog is that someday it helps someone else who was in my shoes learn what to expect and realize what life can be like raising a child with Spina Bifida.



Therefor, since I was so afraid of having an amniocentesis done I figured I should make a blog post to record my experience and let everyone who knew how worried I was know how it went. So here it goes.

After getting an hour of sleep the night before...

 We packed up our bags and headed to the Hospital. It was still dark out and we were exhausted and nervous. The car ride was silent wih nothing exchanged but anxious smiles. We had no idea what to expect of our day. We knew we would be having the amniocentesis preformed before the C-Section. We were aware that if the amnio came back saying Noah's lungs were not mature enough we would hold off on the c-section.

Skipping forward to the procedure...

My high risk specialist, Dr. Greiner was the one performing the amnio. She assured me that she had done many of these. She also admitted that she'd experienced complications during the procedure as well. Her honesty was comforting but the news was still a little scary. Here we were so close to meeting our Son and to imagine losing him from a procedure that I never wanted in the first place is a hard thought to process.

Dr. Greiner came in and we knew we were ready to start. She prepared the ultrasound machine and asked me to lay back on the bed. She asked who I wanted to stay in the room with me and I chose Steven. I asked if he could hold my hand and the answer was no. There was too much equiptment by my hands and I was required to keep my hands underneath my head anyways so I wouldn't try to pull the needle out of my stomach. Greiner told me one last time that during the amnio I would feel the needle go through my skin and through my uterus and it would cause a contraction which could be very painful.

She asked if I was ready to begin and without even giving it a second thought I said yes... let's get this over with.

It took her a while to find a good pocket of amniotic fluid to insert the needle into. She would find a good spot and he would move right into it. I watched the ultrasound screen and tried to just focus on Noah and how sweet he looked, even in black and white.

She felt good about a pocket of fluid but she wouldnt tell me what part of the body it was by. I'm assuming it would have made me very uneasy. to hear. It still makes me wonder.

She inserted the needle...

We did the procedure without any pain medication or numbing shots. I felt the long needle pierce my skin and break through the surface. The pain was hard to describe. I clenched my body and focused on staying as still as possible. I could feel Noah moving in my stomach and it took everything in my being to not say something and trust our High Risk Specialist and God. I knew God was in control and it helped me feel more at ease. I then felt the needle puncture my uterus. You could almost hear a "popping" noise and I definitely felt it. This was the most painful part. The pain wasn't entirely untolerable.. but it was not as bad as I had expected.

I never felt a contraction and I didn't feel the needle come out of my stomach either. Or if I did I don't remember now. It was a painful experience but it was over in no time. Everyone's experience with it is different but mine wasn't the worst pain I had ever felt like I thought it would be.

And although a long needle going into a pregnant belly feel un-natural and bothersome.. we found out Noah's lungs weren't ready after all and it ended up being a very helpful procedure for the health of my son.

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."

September 25th (AKA Noah's New Birthday)

This is the official day our son Noah Tucker will be born. I'll be 38 weeks along and our little guy will be full term and hopefully ready to greet the world. The closer it comes to this date.. the more anxious I get. Not just anxiety anxious either. Happy anxious. Excited anxious. Although anxiety has been a big thing for me during this pregnancy because of all the complications. It's been a real learning experience for me to control it and not be so nervous all the time. Thinking about Noah's birth makes me want to sing, cry, dance, and throw up all at the same time. I've read blogs, researched, read articles, everything. And yet I'll be the first to admit that I'm not sure what to expect exactly. I know all the medical terms and surgeries and technical aspects of his condition and birth process... but who knows what could happen. Things could change and further complications could arise. Everyone's experience is different and I think about what our experience is going to be like all the time.  

ONE MONTH.  

That's all we have. His nursery is ready, clothes are ready, everything. I need to finish packing my hospital bag and Noah's lungs need to mature completely but then he'll officially have my permission to come out. Not on his own though. No surprise entrances from this little guy hopefully! I'm the type of person who likes to stick to a plan. I need schedules, lists and agendas to function. Hopefully Noah feels the same and this can be a mutual agreement between the two of us. September 25th by C-Section and not a moment sooner :)

I wonder what he is going to look like. I've said this often, but besides the bubble on his back he's going to (hopefully) look and act just like every other sweet baby. I bet he has a dark thick full head of hair and a cute little button nose like Steven. I also bet he has Steven's beautiful big lips. Pretty much I just want a baby that looks like Steven apparently. Haha. No.. I hope he looks like me too. But honestly, as long as I made a baby with all the right organs and fingers and just overall body parts.. I'll be happy. He could be the silliest looking little thing I've ever seen and I promise you I'd still be madly in love with him.

I just can't believe how close we are to meeting this little guy. I've thought about him more than I've ever thought about anyone (sorry Steve) and now everything that I've thought about is becoming a reality. All of the hopes and dreams and worries and wonders I've had about little Noah are about to be revealed. We'll officially know the severity of his condition. We'll get to finally put a beautiful face to this little angel we've dreamed of for so long.

It all seems so surreal.

Last week = Failed Non-Stress Test & Emergency Ultrasound

Last Tuesday we had our very first weekly appointment. This should be exciting because it means that Noah will be here soon and we are entering the final stage of this pregnancy, however it isn't so much exciting as it is (ironically) stressful to me.

So here begins my rant about Noah failing his non-stress test:

A non-stress test is a non-abrasive test to monitor baby's heart rate and fetal movement and any contractions the mother may be having. They want to see that as baby moves their heart rate goes up. Just like an adult's does when exercising. Moving is the baby's only real form of physical activity in the womb and should "stress" them a little. Seems simple enough, right?

Noah's heart rate was a good steady 155 beats per minute. Which is within a normal range. They wanted his heart beat to increase by 10 bpm while moving and decrease while not moving by 10 bpm. They gave him 20 minutes to complete the test.

Now here is the part that kind of upsets me:

When I went into labor and delivery triage for decreased fetal movement they strapped the two monitors to my stomach VERY TIGHTLY. Noah didn't like having something squishing his tummy space and kicked and hit and rolled like a mad baby trying to get it away from him- which increased his heart rate. They saw the right increase at the hospital whenever I went in.

At this appointment they claimed to have no straps tight enough to fit my stomach? Even though my stomach is large enough for my body and Noah, the nurse claimed I was "too petite" to use real straps. So instead they gave me a mesh tube like thing to place around my stomach to hold the two monitors in place. She started the machine to pick up his heart beat and nothing. She pressed down harder on my stomach with the monitor and boom. There was his heart beat. Turns out this mesh thing was also too big. So I ended up having to hold it myself so it picked up his heart.

I don't think me pressing did ANYTHING to effect him. At triage it made him so upset. So he had very few movements and yep..failed the test.

NON-RESPONSIVE

Yep... that's what they labeled him. I honestly just don't think he was awake and even if he was he wasn't really being provoked to move. They buzzed him with a buzzer that scared the living daylight out of the little guy and made him jump all the way across my tummy. His heart rate increased and he moved away from the sound but then they were dissapointed that it didn't stress him out very much. After only a few moments he was right back to his solid 155 bpm.

Obviously the only one stressed during this appointment was me.

My biggest issue? He has SPINA BIFIDA. He doesn't kick. Barely moves his legs on ultrasound. What makes you think he should be able to move like a baby without Spina Bifida? What if it's harder for him to move from one side on the womb to another? I was told that SB baby's are often given some leeway because they have a harder time with movements. He still hiccups and rolls all the time... but this nurse made it seem like he was just so abnormal for not moving on command.

We were then sent in for an emergency Ultrasound to make sure his umbilical cord wasn't wrapped around his neck or anything to further restrict his movements. This was his second test.

He only had 30 minutes to:

• Roll completely 
• Practice breathing for 20 seconds
• Fully extend his arms 
• Open his hands 
• Show an increasing heart rate with movement & decreasing with rest

He needed:

• Enough amniotic fluid 
• His cord to be transporting nutrients

When the ultrasound started Noah was kicked back relaxing with his arms behind his head. Total lounging position. What a goof ball. The ultrasound lady wasn't the lady we've always had. Since it was an emergency ultrasound we had to go to the Smith Glenn building of Mercy to have it done in time.  This lady was older and seemed very nice. She cracked up at the fact he was relaxing so much and said, "No wonder he failed, this baby is as relaxed as can be!" She laughed and joked and made me feel much less anxious.

She then pointed out his little toes wiggling.

Which brought on more anxiety because I know he won't be able to wiggle them on his own outside of the womb. It's a very bitter-sweet sight. It's hard to look and know you'll never really see your baby do that other than now. But it's nice to at least be able to see it once.

I calmly mentioned that it didn't mean he'd be able to move his feet or legs though. She looked at me puzzled.. I guess she didn't read our chart that said Noah had Spina Bifida. She must have not known very much about Spina Bifida because even knowing his lesion level she said "Oh no, this little boy will be able to move his legs. Just look at him go."

Which brought a temporary false sense of joy and hope to me. I say temporary because I know deep down I have to be more realistic than that. I think having hope is good, but being realistic and expecting the worst is a smarter, safer way to be. I don't want to get so excited and start picking out a bouncer for the little guy only to be heartbroken whenever his sweet little legs have no motion behind them and now I'm left with a different reality than what I had expected.

We then looked over to the screen to see Noah sucking on his toes. What a strange little being inside of me. He's very flexible due to the Spina Bifida and I guess if your delicious looking little toes are floating close to your face it makes sense to reach out, grab one and suck on it. He's definitely a charismatic little guy already. This is the same baby that gave us a good old thumbs up during his anatomy ultrasound (coincidentally the same ultrasound SB was found.) At least he already has a good sense of humor.

Back to the test though...

By grabbing his feet to suck on them he extended his arms- check.
He also opened his hands to grab his foot- check
Enough amniotic fluid- check
Rolled over and had lots of movement- check
Cord was doing it's job- check
Breathing movements- NONE.

This little stinker didn't want to practice breathing for the ultrasound lady. We were 20 minutes in and nothing. Oh goodness. We were sure he would fail this test too. What would that have meant from there? Surprise hospital visit? THEN... 10 minutes before his test was up.. he practiced breathing. The little rocking motion of his body helped him pass his test. Obviously Noah doesn't want to play by anyone else's rules but his own. But I'm so thankful he decided to finally cooperate.

The ultrasound lady gave him his first A+ on his test and we were sent home with some sweet new pictures of the little guy. He already has hair AND fat rolls. Goodness. This little boy sure is something.. and he's not even here yet. What a crazy, eventful journey this will be.

Tomorrow we have our second non-stress test and a less tedious ultrasound. We're praying that he passes with flying colors this time. And I may cheat a little and have some soda or sweet tea before just to make sure he's good and awake for them ;)

By the end of the day Steven and I ended up laughing and joking and saying things to my tummy like:

"It's okay Noah.. Mommy isn't a very good test taker either."
"But at least you ended up with an A."
"So no excuses your whole life.. You were an A student in the womb. We expect nothing less.. "
"Study harder next time."
"But it's okay, we're proud of you."

Being a parent makes you say some crazy things... and like I said, Noah isn't even here yet. Parenthood is going to be a blast ;) 

33 Weeks

Sorry I haven't updated lately. Not much to write about. I started subbing for work last week and I absolutely LOVE it. I've missed all of the people and children. Since it's a new school year there are a ton of new little ones too and it's great getting to know new kids and parents.

At first I was so busy trying to get back into the swing of things that I didn't think about Noah and his diagnosis.. which was my biggest worry. About halfway through the week when things calmed down a little I started comparing his life to other children's and it made me a little sad. But then he would move or hit and my love for him made me completely forget all about it. He makes me so happy and proud everyday.

By the end of the week I started realizing all of the things the children at work were enjoying while sitting down. We did a lot of coloring and play-dough and puzzles.. all of which are fun and don't require standing. It was nice to catch myself being more positive. This was the perfect time for me to go back to work because I've accepted everyting and bonded with this little guy so much that even though it's hard to see other children do things he can't.... it doesn't matter because he is special and wonderful and I wouldn't change a thing about him already.

I'm subbing again tomorrow and Tues/Thurs. It's nice to have something to do and feel important. I'm actually excited and appreciative of getting time to come in.

I'm starting to have some Braxton Hicks Contractions that aren't brought on by anything.. really makes me realize how close we are to meeting him.

8 Month Ultrasound Update

Our ultrasound actually went pretty good! His fluid on his brain is the same as last month and his bubble hasn't gotten bigger. His feet haven't clubbed yet either. Which is awesome! :) He does have a little heart problem though :( Sometimes his heart will beat twice instead of once. Our doctor said 85% of babies around this age have it and not to worry yet. He might grow out of it before he's born. If not he'll need a heart monitor once he's born until he grows out of it.. We now have weekly appointments to check his heart. There's always something huh? :( But it could be much worse so we're just glad we heard some good news! My high risk specialist is going to let me deliver at 39 weeks now instead of 37.. Which is awesome! I want to cook him for as long as possible :) We even set up a day! His birthday will be October 2nd :) She said if I go into labor before then she's going to have me try to deliver vaginally even. He's doing really good considering everything fighting against him. We're so proud of our little miracle baby :) God is so great.. He really answered our prayers! I'm one happy Mama today!!

Ultrasound Tomorrow Morning

Since we had all of our big appointments in the beginning of July it feels like forever since we've had any appointments. Honestly it's been really nice. I've been able to forget about something else being wrong with Noah and just enjoy being pregnant. I've appreciated all of this down time. But all good things of coarse have to come to an end and tomorrow we will be back at our doctors office.

For our 7 month ultrasound the receptionist scheduled it too soon and things hadn't changed much from his 6 month ultrasound... Most likely because it hadn't been very long since his 6 month one. So we're pretty nervous for this one. He's had almost 2 months to get worse. I know that there is nothing we can do about him getting worse.. Its just hard to hear.

If you'd like..please keep our little guy in your prayers tonight. We need for him to start stabilizing.. Yet he just keeps getting worse slowly.

We're praying that:

-The fluid on his brain hasn't accumulated and gotten worse.

-That his "bubble" on his back remains intact and hasn't built up fluid either.

-Also that his bubble hasn't grown or changed in size dramatically.

-That his feet have not clubbed.

Clubbed feet are fixable with surgery.. But it would just be ONE more surgery for Noah to go through and preferably we don't want that. :(

-That he is still on track for length and weight.

-That no more health problems have arrived.

I say it all the time, if Spina Bifida is his only health condition then I will be so glad. So many other things could go wrong as well and we feel blessed that so far this is it.

We love our little guy so much. I really hope tomorrow goes well. Hopefully we'll figure out based on his health where to go from here. Maybe we'll figure out a week for delivery and talk about things like that. I really hope so. I'll post a blog tomorrow about what we've found out.

Noah's Nursery Update

Here are some pics of his room with all of the baby shower presents in it :)

10 Weeks since Noah's Diagnosis- Reflection

Ten Weeks

It's been ten weeks since I hit the half-way point in this pregnancy. This blog post is more of a recap for myself. So much has changed in the past ten weeks. It feels like it's flown by but at the same time it really doesn't. Week 20-23 drug on and everyday was absolutely unbearable. Once we hit week 25 we were completely sure about continuing the pregnancy. Since the diagnosis life has changed so much. We went from being devastated and heartbroken to finding joy in this pregnancy again and appreciating every moment. Now we are at week 32 and anxiously awaiting the arrival of our little miracle baby boy, Noah.

Week 20

I thought that my 20 week anatomy ultrasound was going to be one of the greatest, most memorable moments of my life. A day we would never forget. From that moment on we would know if we were having a sweet baby boy or beautiful baby girl. I'm not a person who remembers certain dates very well... but it was May 22nd. It sticks in my mind because I was counting down to that day for what felt like forever. I also happened to be right. It was a day that would become one of the most memorable moments of my life. Just not in the way I had expected.

Having a healthy child seems so easy. I've worked in both a preschool and a daycare. Everyday we are surrounded by children who can walk, play, laugh, and run and nobody thinks twice about it. Very few times will you see someone with down-syndrome or in a wheelchair in public. It just isn't that common. I think it tends to slip people's minds that things like this happen because it's just not something typically seen everyday. If you are expecting a child, people assume it's going to be healthy. Most children are healthy so why wouldn't yours be?

This was my train of thought up to this point. Having always been surrounded by healthy children I never thoughts the odds of me having one too would not be in my favor. I've never been over-weight, I don't indulge in sweets, I'm active, and everyone in my family is healthy. Plus the simple fact that healthy babies are born everyday.

Mother's Intuition? 
 
Even though I figured my child would be healthy... I think I subconsciously I knew towards the end that something was wrong. Maybe.. but maybe not. People say I worry too much. I say that people who don't worry about anything at all are idiots. But looking back I think I really just knew something was up. Up to this point I figured everything was okay..but the closer the ultrasound got the more I started to have doubts.

The day of our 20 week ultrasound I remember saying that I regretted inviting a lot of people to my appointment because I wouldn't know how to react if they found out something was wrong in front of my friends and family. I was so nervous when the ultrasound started that my face got really hot and I felt like I was going to pass out right on the table. I excused myself to the bathroom and lied and said I just really had to pee.. but in reality I sat on the bathroom floor and tried to gather myself and breathe. I sat and prayed aloud to God that everything would be routine and normal. A healthy baby. I told him I didn't care about the sex of the baby. I just wanted it to be healthy. I decided that I was just being silly and that everything was fine and went back to the room. I wasn't even really sure why I had done that? I blamed being nervous. But really I think I already knew something was wrong.

Spina Bifida

As everyone knows, Noah was diagnosed at 20 weeks with Spina Bifida. Two words that I absolutely loathe. Two simple words that can mean so much. Spina Bifida means "open spine". But in my own translation... it means "Here is a list of all of the things your child will no longer be able to do". My world was absolutely shattered. I've never been more overwhelmed in my entire life. Doing research just made things worse. I had never heard of anything like it before. I've heard of down-syndrome, autism, ADD, rhetts syndrome and other more common things. I very vaguely remember maybe hearing about it in my child development class my senior year of High School. I remembered that folic acid was important to pregnancies and helped lessen the risk of a neural tube defect. But that's all I remember. And I hadn't associated it with Spina Bifida until later.

Acceptance

This has been my biggest challenge. Accepting the fact that my son isn't and will never be completely 100% healthy is a struggle that just isn't easy. I still have trouble accepting it sometimes. It's hard to accept something that you wish you didn't have to. I wish Noah didn't have to go through this. It still doesn't seem completely fair. But over the past 10 weeks, it's gotten a lot easier. If you were born with red hair or something seemingly uncommon you'd learn to accept it because it's a part of what makes you special. Without red hair you may not feel quite like you anymore. Maybe red hair isn't the best thing to compare this to.. but you get the point.

Noah may have Spina Bifida... and this may seem like the end of the world now. But once he is born he'll still just be Noah. Even though the effects of Spina Bifida will be noticeable. I made this little boy and even though he's going to have challenges, he's still mine. He can't do anything about his problems... so it's just going to have to be something we all learn to accept as a family. And as long as we're in this together I know we can do it.

Positivity

Being positive is a lot easier said than done.. but my level of positivity at 20 weeks.. versus 30 weeks has dramatically increased. This goes along with acceptance. After hearing the diagnosis my heart was broken about all of the things he wouldn't be able to do. Like play soccer, run, jump- things like that. But with a lot of reminders from Steven, I've learned to instead focus on the things he hopefully WILL be able to do. Like give hugs and kisses, smile, laugh, play, clap, wave, blow kisses, paint, write, play video games, read a book, splash in water, feed himself, give high-fives.. there are LOTS of things he'll still be able to do. And THAT is what is important. Not focusing on what he can't do. Remembering all of the things he will do. Even though it's hard to always stay positive... it really helps.

Bonding

You know what else has come a long way in these past 10 weeks? How much I've bonded with this little guy. It's crazy how attached you can become to someone you've never even met before. I love him to death. His hiccups never fail to make me smile. He moves so much and it's just a constant reminder of how blessed and lucky we are. He proves to us every day that he is strong and stubborn. Just like the both of us.

I could cry just thinking about not having him in my tummy right now. We would have missed out on so much. All of his rolls and hiccups and punches, decorating his nursery, having the baby shower. It literally breaks my heart. I'm glad that we were dedicated to staying open-minded and considered all of our options.. but gosh.

I honestly think I would be completely miserable right now without him. Life just wouldn't be the same. He's inspired us all so much and we are so proud of everything he's overcome already. He's truly our miracle baby and I'm so glad he's still with us.

Keeping Faith

When I thought that ending my pregnancy would be the kindest thing to do for my son.. I prayed every night that God would take him from us. That God would be the one to take Noah into heaven and give him a better life free from his disability. I prayed that he would do it so we wouldn't have to. I knew I couldn't go through with hurting my son, and if it was the right thing to do I wanted it to be up to him. And God never did. I was so angry at God for letting this happen to Noah. It seemed so unfair to let us believe we were incapable of having children and then he blessed us with one that would have problems all his life. I felt like I was being punished and wanted absolutely nothing more to do with faith.

Now when I pray every night, I thank God for not listening to me. For making me decide by myself and helping me becoming a better person for never losing my faith and instead trusting God instead. God didn't take Noah into heaven and it was because he had a bigger plan for Noah. A bigger plan for us and our family.

I've never felt closer to God. And simply because he has given me an angel.

I know that on the days when I don't feel strong, I'll look at little Noah and see that he's always being strong. Noah is already much stronger than me and Steven combined. On the days when it'll be hard seeing Noah miss out on doing things other children can do, I know that Noah will still find a reason to smile. Simply because he can. He's going to experience so much at such a young age. Even as a little one cooking, he still never ceases to amaze me.

Appreciating our Blessing

Sometimes I wonder why God chose us to be Noah's parents. I'm only 19 years old and Steven is only 21. I had planned on graduating college to become a teacher. I thought teaching was my destiny. I figured that if I couldn't have children it would make me a really good teacher because I care about kids so much. Even if they aren't mine. I thought that was God's plan for me. It was my way of being positive about not being able to conceive my own child. Now there is a good chance I'll never be able to graduate college. If I do, I may never be able to hold a full-time job because of all of my responsibilities as Noah's primary care-giver.

Steven never wanted to work in a warehouse his whole life. He wanted to go to school for welding and this was just a job that was getting us by. By sticking with this job he'll eventually have really great benefits, but it just sucks knowing that this is most likely it for him. Maybe someday he'll get to switch jobs and do something different. But for right now we need him to keep moving up the ladder.

People say that having a child puts a halt to all of your big dreams and plans. But having a special needs child really does. Finding a daycare or preschool that will work with Noah's needs will be a huge challenge and I'm prepared to be the one with him all the time to care for him. I don't mind. I'd gladly give up anything for him, it just makes me wonder why us?

But then I wonder if God gave us Noah because he knew how much we'd appreciate actually being able to have a baby. And he figured that we'd be so thankful that we would appreciate Noah, disability or not. Which is very true. We had considered adopting and IVF in the future. So this was such a miracle. And I think it definitely makes us appreciate Noah even more than we would have if he was perfectly healthy.

I wonder if God saw the amount of love that Steven and I have for each other and wanted a child with disabilities to go to a family full of love and laughter like ours?

Even though I wish Noah didn't have Spina Bifida, I'm so glad he went to a family who will love him no matter what. If I've learned anything from these past 10 weeks... it's to leave it up to God. He has a plan and he chose us for a reason. Noah will have everything he needs and more, including lots of love and hugs and kisses.

The Next 10 Weeks

That is, if we make it 10 weeks. Spina Bifida C-Sections are usually scheduled at 37 weeks. Which means we could only have 5 weeks left. Oh gosh. Even though I'm not 100% sure what to expect.. I still can't wait to meet our little baby. Every day we are already one day closer to meeting him. The day that I get to hold him for the first time will be absolutely amazing. We both love him so much and cannot wait for this crazy journey of ours to really start.