28 Week Update

While updating this.. I'm actually technically 29 weeks along. But I still don't have Internet at the house yet. So sorry this is a little behind.

Here are some cool new things that have happened in week 28:

• Noah had the hiccups for the first time! And according to our baby book this was the exact week most babies first get the hiccups. Yay :)
 
• Noah is recognizing his name. This isn't exactly a proven fact...but he rolls and hits every single time we say Noah and then we laugh. So it just seems like a fun little game now.. but maybe he'll remember and recognize it outside of my belly. Genius baby!

• My belly button has gone crazy. People laugh and point it out through my shirts.. and I have just gotten to the point where I say, "Yeah... don't ask. It's doing it's own thing." Because is seriously has. I would consider my pre-preggo belly button as an "innie-outie" and since it's kind of both.. it's not sure what to do now. It's not completely poked out.. but it wants to be? I don't know.. don't ask.
 
• Maternity pictures were done this week :) I have a picture of one in the post below this one. They were done by my sister and she did an awesome job :) Couldn't be more pleased with how they turned out. We're going to do some more casual ones soon too.

• Baby shower is in a few weeks! I'm excited and nervous. I'm so glad people are excited to go and it seems like there will be a pretty good amount of people who will be able to make it.. which is awesome! The last party I had for myself was in 6th grade and only one of my friends showed up because it was during an ice storm. So fingers crossed that this one turns out to be a hit :) 

Since we had all of our doctors appointments at once in the beginning of July, this month has been nice and relaxing. I like getting them all done at once. Instead of being nervous for appointments, I've been able to relax and enjoy being fat and happy! Oh. Another update to add to the list:

 

I EAT ALL THE TIME!

 

I read in our baby book that Noah is starting to pack on the pounds and is on his way to becoming a chunky squishy pink baby.. therefore my job is to make sure I don't eat us out of house and home. For some reason food just seems so appealing lately! I can't eat big meals because I feel like my stomach is going to explode.. so instead I snack on little meals.. ALL THE TIME. I feel like I'm a non-stop eating machine! Yikes! At least I'm keeping it healthy though.. and I don't have a sweet tooth whatsoever... but still!

 

If someone wanted to bring me Jimmy Johns.. I wouldn't oppose.

Maternity Pictures

I honestly think the best thing for parents of a Spina Bifida baby is to treat their pregnancy just like every other healthy, normal pregnancy. Most days I wake up and don't even think about his diagnosis. It's finally become a "normal" part of my pregnancy and instead on focusing on the bad things, I'm in preparation mode for Noah to get here.

Which includes... Maternity Pictures :)

There will be a slideshow at the baby shower that I'm using to put pictures of me and Steven on. I'll have some of as babies, childhood pictures, our couple pictures over the last three years, and now our maternity pictures. It's so much fun to see how much our lives have changed within the last three years. And I LOVE looking at pictures of baby Steve! So precious. I feel like I'm looking at pictures of Noah. I just assume he'll be a little mini-me of Steven.. but we'll see.

Wheelchairs.

Let's just stop and consider what life would be like for Noah if he is in a wheelchair for life . .

No. I am not losing hope.

No. I am not losing faith.

Yes. I am praying for and believing in a miracle.

I am saying there is an elephant in the room so let's take a good hard look so we can all move past it.

As I have said more than once, God's miracles take all forms - so let's consider another type of miracle. . .

Regardless of whether he walks or not, I want our son to be a light in this world. I want him to be the cute, down-to-earth little boy who is a friend to everyone. The boy his friends turn to when life sets them back.

I want my friends' children to be better people for having known and played with and grown up with Noah.

Being in a wheelchair would mean a life lived on stage.

There are many people who pass us by everyday whom we never notice. But a handsome little boy in a wheelchair with a bright smile and heart filled with hope? Now that is a person you would remember.

Picture your typical children's Christmas program. Picture a cute little boy standing at the microphone singing silent night. Cute right?

Now picture that cute little boy singing silent night from a wheelchair. Well. That would be something.

To be in a wheelchair is to have a different set of opportunities and responsibilities.

I want my son to be a miracle.

To be someone who inspires and uplifts.

The boy who gets elected Student Body President on a write-in campaign because he is too humble to actually run for office.

I want my son to be the young man who pursues the job of his dreams and when people tell him that he has been an inspiration to them, he cocks his head and wonders what the big deal is.

I want my son to be the type of person who makes the world a better place - an inspiration - a miracle.

And I want those miracles regardless of whether he is standing up or sitting down

Thoughts.

Imagine you were a marathon runner who ran every single morning for years. Running was your life. One day you get hit by a car and become paralyzed from the waist down. You lose control of your bladder and bowels and of coarse, your legs.

Would you rather have know what was like to run and walk and then lose that ability, or never be born with the ability to walk at all?

If you never knew what it was like, you would never know what you have lost.

If you lose that ability after living with it for years, at least you got to experience the ability at some point in your life.

Which would be more upsetting? If you had the choice what would you choose?

I can't decide which I would choose. I guess that's why God doesn't give us a choice. Either we can or we can't. We just have to accept life either way. Just a random thought that popped into my head today. Hmm. Something to contemplate.

Inspiration

Here are a few of my favorite quotes lately.

"Anyone can give up. It is the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." -Anonymous

That is true strength, but luckily it isn't strength that I have to conjure up on my own. For if it were, I would have quit a long time ago. It is the strength that only comes from God.

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." - Psalm 73:26

“Part of the problem with the word 'disabilities' is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.”
Fred Rogers

Update: NICU, Counseling, Ultrasound

Due to lack of Internet I haven't been able to update much. The three posts under this are all fairly long and describe what's been going on lately.

This past week we had our NICU visit, first counseling visit and 7 month Ultrasound. It's been a rough week... a lot of things going on at once. And we didn't receive very good news during our last ultrasound.

Noah's arrival is getting closer and closer. Prayers are still much needed.

7 mo. Ultrasound Update

Right now we only have a few months left until Noah arrives. So as long as nothing gets WORSE, we'll be prepared for everything we'll have to face with him. We constantly pray for stable ultrasounds. No news is good news at this point.

Here is what we found out:

• Noah's fluid in his brain has gotten worse. :(

This can be a bad thing or a kind of alright thing depending on how you look at it. If his fluid escalates after his spine surgery then he'll be having the shunt surgery during his NICU visit. If not, he'll come home and I'll be on constant watch for the fluid worsening. The shunt is irreversible and they don't want to perform the surgery unless it's absolutely necessary. Even though 85% of SB children need one. I'd prefer if he had the surgery while we were there instead of being readmitted a few weeks later. This was something I was dreading hearing.

• His bubble is still intact and hasn't gotten bigger.

Our pediatric neurosurgeon said that if the bubble bursts it makes no difference. However, our High Risk Specialist thinks that it could damage more nerves and spinal cord if the bubble breaks. Which is why she doesn't want me working and straining my body. So who knows. I just don't want it to burst at get worse. Seeing it on the ultrasound was actually for once a relief.

• One foot is not clubbed yet.. the other is questionable.

Noah had his little legs crossed at the ankle so the ultrasound tech couldn't get a for sure answer on his right foot. At one angle it looked a little clubbed.. but at another angle it didn't. She said if it was clubbed it would look clubbed from every angle. So we're not sure on that one. I just really wish that his feet and legs not being clubbed would be one less surgery and worry :( But it's not exactly looking that way.

THIS is the trimester that everything could take a turn for the even worse.

What has been stable to this point could all change.

• His kidneys still look fine and we know FOR SURE he is peeing into the amniotic fluid and swallowing it. Which is a sign he may not need to be cathed as a newborn. Everything could still change though. We won't know for sure until he's born.

• His heart is strong and he's still right on track as far as growing and weight go. And I've gained the right amount for this month as well.

He's pretty healthy in every other way possible besides his spine and fluid on the brain as far as we can tell. Which is a relief, but like I said before. Nothing is set in stone. I guess I'm just a little bummed about the extra fluid. It looks like so much on the ultrasound. His poor little brain just looks filled. It breaks my heart... I just want him to be okay. I know it could be worse, but nobody wants to hear bad news. I just want my little baby to be okay. Hmm.

Counseling

We had a session of counseling just to make sure we're doing okay emotionally with everything. I'm not very good at opening up about my feelings with people I don't know very well. So I figured this appointment might be long and awkward.. but actually it was awesome.
Our counselor Leigh was very nice and at first I was a little drawn back, but Steven and I both opened up very quickly about our emotions. We talked about how hard the first 2 months were after the diagnosis and deciding whether or not to terminate the pregnancy and how we over-came those challenges and worked together to make the best decision for ourselves and our son. We talked about the friends and family who have been amazing and supported us, and the people who went the other way and have hurt us instead.

This was probably our biggest discussion. It seemed like the people who were were so sure would be there for us were our biggest and worst critics. Leigh actually got noticeably upset when we told her about what we've dealt with and told us to keep them completely away from us.. and only surround ourselves with positive, supportive, loving people. As much as I'd love to take her advice I've just decided that being the better person and ignoring it would be best for all of us. Not everyone is going to be nice throughout this whole journey and if I don't let it get to me, then they gain nothing from it.

We talked about how wonderful it is to prepare for him and set up his nursery. How we love and appreciate every milestone he's conquered so far. Just everything. Talking about it and being honest really made me feel good. I'm not ashamed for what I went through. I'll admit my mistakes and struggles. We also told her that we decided to be 100% honest with Noah throughout his lifetime and never keep his complete journey away from him. Even the bad parts. He's our miracle baby and will be reminded of that often :)

In the end our counselor ended up crying.

Yes, crying. She hugged us and teared up and said she was so proud of us. The day we had our appointment also happened to be her birthday. She told us that talking to us made her day. She deals with so many people on a daily basis, I could not believe we made that big of an impact on her. It was wonderful to hear that we're handling everything well. I'm always afraid that I worry too much, but to hear from her that I wasn't.. made me feel pretty good. Her biggest point was that if I wasn't worrying at all, it would make me look bad.. so if worry too much makes me look bad too then who cares! At least knowledge is power and I'm not being an idiot about everything. I'm a concerned mother and always will be because I love him. Nothing wrong with that.

She told us to come back with Noah and visit her and she wanted to meet up and chat sometime. Noah is inspiring people with his story already and he's still just a little thing trying to cook :) I love him so much and I'm already so proud to be his mother.

NICU Tour

As thankful as I am that we know in advance that Noah will be in the NICU and we'll have time to prepare for it mentally, there is only one word to describe our tour experience... Overwhelming.

We went in knowing that we wouldn't exactly like what we saw... but prayed that God gave us the strength to stay strong and learn as much as we could and accept what we could not change. We were seated in the breast-feeding room while we waited for the nurse who was giving us the tour to be ready. We sat down next to a woman who I'm assuming was a mother... and she was shaking. Which didn't help my nerves at all. But mainly, I just felt sad for her. I wanted to ask if she was okay and comfort her... but wasn't sure how. Our nurse Caroline came in and introduced herself and our tour started.

Here is what we found out:

• After Noah's spine surgery he will be put in a private "pod" room because the doctors will still be seeing him frequently.  
• The "pod" rooms are where the NICU newbies go because they require more attention.
• The nurse showed us all of the monitors, wires, ventilators, and IV hook ups he might need.
• The incubator he will be in will allow us to touch him through the side holes while he's recovering.
• Once he "graduates" from the pod room he'll join what they call "newborn row".
• Newborn row is literally what it sounds like... a row full of sick little babies. Some had lights on them for Jaundice, others in casts, some had feeding tubes and oxygen tents. Some were just so tiny.
• The Mothers all looked drained. Emotionally and physically. There were some feeding their babies but mainly just staring at their little ones. So many helpless newborns.. Ugh.
• The nurse showed us a baby with just about the same set up that Noah will have. He was a full term chubby pink little baby. Since Noah will be full term he most likely won't need a breathing tube, but he'll be in a plastic tent with an oxygen tube on top to allow extra oxygen. The baby was laying on his side. (Noah will be on his tummy  until his back heals) But she showed us all of the positioning pillows they'll use to ensure he doesn't accidentally roll over while healing. This baby had monitors and IVs in his arm. Much like they are expecting for Noah.
• I'll be able to breast-feed. I've read that some women find it too difficult to ONLY pump (and have no actual contact) with their first baby and sometimes they can't produce milk... but since I've already showed signs of being able to the nurse said it shouldn't be a problem. Which is awesome.
• We'll be able to see Noah whenever we want. The NICU is available to us 24/7. We get to designate 4 people who will be allowed to see Noah without us or our consent. Right now Steven and I have decided it would be my Mom, Sister, Grandma, and Steven's father. Only two people will be able to enter at a time.
• They're expecting at least 2-3 weeks in the NICU for us depending on how well his surgery goes and if he'll need a shunt (and no other complications of coarse). If so it will be longer. The longest stay I've heard of is 6-8 weeks.

The nurse said that we both seemed like we were handling everything very well especially for being so young. We had a ton of questions and it was nice to know what we'll be dealing with. Even though all the babies looked sad and sick I still wanted to cuddle and kiss all of them.

I made it to the parking lot before the tears came.

I constantly tried to remind myself that all of these babies would be fine. Noah would be fine. I need to be thankful that we're not expecting a healthy baby, that we know why hat we're dealing with, and that all of those scary wires and tubes would HELP Noah.

But I still couldn't shake the fact that it is just sad. Why couldn't God make all of those babies healthy? It was just a lot to take in at once. I felt so many emotions at once, and I'm sure hormones didn't help. I know we can do this... and we are strong enough. Now that I've had my breakdown I feel much better about it. Accepting is the hardest part. But it does happen and I hope every woman who's child is diagnosed in utero gets the chance to visit their NICU too, it really helps.

Sweet baby boy's nursery.

We worked hard all weekend to make some progress on his nursery and it's actually starting to come together. We are so excited. It feels so good to nest and prepare :)

"Hi Labor and Delievery Triage! It's me again!"

Twice. Yes this makes it twice that I've gone to the Labor and Delivery Triage with worries and been sent home just fine.

The first time I went in:

I was told to by a nurse. I'm RH negative (which doesn't affect this pregnancy, but might affect my second) and everytime I will bleed in my second pregnancy, I'll need a shot. Well I went for a walk and came back and noticed I bled. I knew that bleeding during pregnancy was normal, but I told my Mom and she wanted me to call my doctor and make sure. Since this is a High Risk pregnancy, any little abnormality might be a cause for concern. We got ahold of her nurse and she looked and saw my chart said RH negative and said to go to the hospital right now and get checked out, I'd need a shot. I wasn't sure about it... but I went anyway.

Everything was fine. Noah's heart-beat was stable and the blood was just from the walk. Which happens. The nurses were glad that I would rather be safe than sorry, but I felt silly and was sent home.

The second time I went in:

Which was Friday, I hadn't felt Noah move in a couple days. And being the lovely concerned Mother I already so obviously am ( Hehe ) I went in. We have been moving and even though I haven't been helping much, I still wondered if maybe his bubble on his back burst or if he was tangled in the umbilical cord or something.

The first nurse who took my vitals asked when was the last time I had felt normal movements and when I said two days ago she seemed really upset. And asked me "What was I waiting for after the first hour I didn't feel movements?" Oh gosh. I felt absolutely horrible. I told her it was my first pregnancy and baby had Spina Bifida so I wasn't sure if the 5 kicks an hour still applied? Since he doesn't kick? She apologized and felt bad. I told her it was okay... she had no idea baby had SB... It was just a weird experience.

The second nurse came in and strapped the fetal monitor really tight to my tummy and we listened to his heart beat and wouldn't you know... Noah decided he didn't want anything squishing his tummy space and kicked and punched and rolled like a mad baby.

We were going to stay an hour to count his kicks and make sure there were 5 an hour... and in 10 minutes we'd already felt 8 kicks.

Gee thanks Noah for making Mommy look silly again... Even though I'm definitely NOT complaining! If he proved me wrong everyday for the rest of my life I'd TOTALLY be okay with that.

The nurse prescribed me and Steven to get some Andy's and go home. She even let me sit for an extra 10 minutes with his heart beat turned up just to make me feel better and know that he was okay. Best sound/feeling ever. I'm glad the nurses were glad I was concerned instead of being annoyed that I came in and everything was fine. Better safe than sorry!

My THIRD trip to Labor and Delivery will be:

My NICU visit in three days. I'm scared and nervous.. yet excited and thankful that I get the chance to see what the NICU will be like before I get to experience it. I'll get to see little babies all hooked up to machines and tubes and monitors and meet the nurses I'll be dealing with too. I can't imagine what it's like for Mothers who expect perfectly healthy babies and end up in the NICU. It would be so overwhelming. At least Steven and I will get a tour and know what to prepare for. I'm so thankful for that.

THEN:

The NEXT NEXT time I'll be in the Labor and Delivery area will (hopefully) be when little Noah is born! Fingers crossed of coarse! :)

More encouraging posts from other SB Mommas :)

These are more just for me... to remind me that other women can face these challenges too, and that I AM strong enough :) Thank you ladies!

Click to make the images larger.

High Risk Specialist Appt: Update

Today we had an update appointment with our High Risk Specialist... that I felt was completely pointless.

One of the hardest parts about having a baby diagnosed with SB is that after you've figured out about how severe the defect is (even though nothing is for sure) there is really nothing else they can tell you.

Noah doesn't have clubbed feet yet, or a lemon shaped head. His fluid in his brain and spine is stable too. These are things that right now we are feeling extremely blessed about, but they could still change and happen. Even though it's a happy thing for right now, nothing is set in stone. Even after he is born his function level could change many times.

I'm not very familiar with Down Syndrome (even though I had an Uncle who had it) but from my understanding.. once you get the diagnosis... you can find out pretty much what to expect for sure. As far as what your child will act and look like. I know when you have a birth defect anything could happen...there can always be other symptoms that occur.

But it seems like nobody really knows about Spina Bifida. It's kind of a gray unknown defect. I'm so thankful for all of the technology that we have to help babies born with these defects. But doctors don't know for sure what causes it, and they can't predict the outcome for children specifically because every case is different.

Therefor, these appointments are starting to sound like a broken record. My specialist's theory as a doctor is to give the patient "realistic expectations". While I respect this, and prefer it to being filled with false hope..my biggest challenge is to keep my realistic expectations and not let it mess with my anxiety. Finding the perfect line between realistic, yet hopeful without getting depressed or becoming overly confident in something you have NO idea the outcome is very hard.

But things emotionally for me have been much better lately. It's just starting to feel like it's a part of our lives now and we'll take it. Feeling Noah tumble and roll makes every challenge we'll all face together worth it. Maybe it's a good thing that nothing is for sure, leaves room for some hope. And even though I know I shouldn't get my hopes up too high, it's still nice.

House!

Guess who moved in!

:)

That's right.. we did! :) Now we're one step closer to having everything ready for our sweet baby boy.

I haven't updated in a while because we've been so busy moving and have had lack of internet. So here are some pictures of the new place.

This is the entry-way through the front door. I think my grandma is going to give us a mirror/bench piece to put in that hallway. The last lady who lived here had a really cute table and mirror I loved. But that'll come later.

Living room :) It's really good sized and has pretty hardwood floors and tan walls. I can't wait to get our couch moved it and make it all cozy!

View from the living room into kitchen. I think our TV will go in that corner.

Kitchen. The cabinets are white and vintage looking. Keep in mind it's an older house and I believe they are the original cabinets. My sister and I repapered the bottoms of them though. I love the window by the table and the windows above the sink. I've started adding my red/chicken theme and it's starting to feel more like home!

The door that leads into the laundry room and there is a door in the laundry room that leads outside. I think the door looks so neat and vintage.

Guess who's crib got set up?! :)

Here is Daddy putting it together.

Our bedroom is actually starting to look like a bedroom! This was from our first night there, yay!

Very vintage looking bathroom!

Different View.

Noah's crib and bedding :)

Pregnant and moving during the summer do NOT mix. Me and Toby resting.

Noah's Aunt Gwen helped move ALL day.. here she is exhausted too.

And of coarse, here's Toby making sure all of his toys get packed.