Tuesday, December 31, 2013

2013.

As the year winds down, I want to take a moment to reflect on our amazing year.  What better way than with our 13 most memorable days and moments 2013 (in no particular order...)?

1. August 11- Isaiah's birthday.  It was likely the most anticipated day of our lives, even if it was actually scheduled for 24 hours later. :)  We are constantly reminded of how lucky we are that Isaiah is here with us and as healthy he continues to grow.  It was the first day we laid our eyes on our miracle. It was the first time we held him in our arms, even if it was on a mattress pad to keep his bones safe.



2.  May 6- Wishbone Day!  This was our first of what will be many Wishbone Day celebrations.  This day showed us how many people love and support us.  We never expected how yellow our Facebook pages turned that day.  



Wondering what Wishbone Day is? Check it out here.

3.  Our 20 week ultrasound.  This was a day full of mixed emotions.  It was a day where we found out "It's a Boy!" and it was also the first of many times that we heard the phrase "possibly lethal".  It was a day where we bawled our eyes out.  It was a day where we rallied our hearts and still made ourselves have a fun "baby day" because our son was a reason to celebrate no matter what.

4.  The day Isaiah took his first FULL bottle! And burped too!!  This day has been a bit of a turning point in Isaiah's bottle feeding.  Although he's only done a full bottle three times since then (cough cough, two of those times being today, one of which he ate more than he'd get in his tube for that feeding), he's consistently been taking at least 2 ounces.  He also doesn't need nearly as many breaks and isn't thrusting his tongue nearly like he'd been.

5.  June 12- The day we were told maybe it WASN'T lethal!  This is the day Dr. Bober came from DuPont to check out Isaiah's ultrasounds.  This is the day they saw no beading on Isaiah's ribcage like what was seen weeks before at CHOP.  This is the day we were given hope by someone in the medical field.



6.  June 26- The oxygen test day.   We found out Isaiah's lungs were getting ready for life outside my belly and they were doing a ridiculously good job moving oxygen around his body.  This had been a huge concern for Isaiah's ability to sustain life and when he scored over 50%, no one could contain their excitement.



7. and 8.  Both of my amazing showers.  We were spoiled with so much love, support, gifts, and more. They were days filled with family and filled with friends.  I felt like the luckiest person in the world.

http://oibelieveinisaiah.blogspot.com/2013/06/celebrating-isaiah-part-1.html
Celebrating Isaiah- Part 2

9.  December 27- The day Dave and I became Godparents.  Yup.  We are both godparents to one beautiful little girl named Keegan.  Although we couldn't both be there (since Isaiah is homebound unless he has a dr appt), I represented the two of us.  I've known Keegan's mom since first grade and her dad since freshman year of high school.  They are two of the most amazing parents, and people, that we know and love.


10.  The day Isaiah was first transported to duPont.  To me, this meant that Isaiah would truly get the help he needed for his bones.  It was his first ambulance ride.  It was the next big step in our journey with him.  

11.  Our first trip home...oh man, that moment when we put him down in his crib for the first time...  It was a whirlwind.  We got home just as the rep from the oxygen company pulled in.  We were given more information about more new machines and medical equipment.    We were exhausted.  We definitely did not have any sleep in our future though...all we could do was stare at Isaiah and stare at his machines.  Scared, grateful, intimidated, amazed.



12.  Isaiah's second stay in the NICU.  The stay that was supposed to last 3 days and ended 3 weeks later.  The stay that was supposed to be routine, but we were in the NICU "just in case" (Thank God).  It was the stay in which Isaiah turned blue.  It was when we learned the most about his respiratory needs.  


13.  The first time I got to hold Isaiah off of his mattress.  Oh, what a nerve-wracking and yet exhilarating moment.  He had wires pulling from what felt like everywhere.  It was so intimidating, yet glorious.  To think just this week I've learned to do it so casually, and that Isaiah is now able to fall asleep on me, he's so comfortable.  


We've come a long way in a year.  We started 2013 as an excited couple that was expecting their first child and we end the year as a family who is now [possibly way too] well versed in medical jargon, and yet wouldn't change it for anything...for it gives us Isaiah.  It gives us the ability to be called mommy and daddy.  It gives us what will hopefully be years with our son, our little miracle.

and to wrap it up...here's a Flipagram of my year on Instagram.

We hope you had a phenomenal 2013 and may 2014 bring you blessings, hope, and so much more.

Doctor Appointments

On Thursday we were scheduled to head to DuPont for two appointments (one with an ENT for a consult and one with Dr. Bober to check in since we were there), but this happened. In an hour.
We attempted the drive at 9am, but quickly learned that the roads weren't treated and it just wasn't safe in my Corolla.
Isaiah didn't seem to notice.

I sent the first picture to Dr. Bober's email with the subject "so this is happening" and he replied back to cancel and not worry about it; that we'd see him for PAM in a few weeks.  We headed back home, and then this happened...


Go baby go!  The snow stopped once we were in the house so we decided to keep our afternoon appointment with the ENT and headed to DuPont around 11.


Notice there's zero snow?


Isaiah says HA, mommy.  We look like looney bins.

So we drove one hour drive for a 5 minute consult.  The doctor looked in Isaiah ears and stated that Isaiah makes soft wax (apparently you either make soft or hard wax), and that he has a lot of it deep in his ears.  His ear canals are also shaped like slits, which may have affected the previous hearing tests.  As Isaiah grows, the slits should open more and more.


When Isaiah goes back for his PAM treatment, the ENT is going to piggy back on that and have him sedated one of the days, clean out his ears, and then an audiologist will also join in on the fun and retest Isaiah's ears.  We're confident he'll pass this time.

After talking with the ENT, we did end up seeing Dr. Bober.  He's happy with Isaiah's progress.  According to him, Isaiah is now a little over 20 inches.  He also weighed in that day at 10lbs, 4 oz.  He's at the top of the curve for his height to weight ratio so we need to tread lightly there as we don't want him gaining too much for his body.

That should be easier to monitor with him doing a much better job taking a bottle.  He's been consistently taking 2 ounces at his day feeds, and is even taking a bottle before his goes to bed now (we just subtract that amount from what he's supposed to get overnight).

He's making great progress on the bottle-front.

On Friday, we went in for Isaiah's 4 month well visit at his local doctor.


He got his shots and got checked out.  They are also happy with his progress.  They noticed how well he's moving, how big he's gotten, and how healthy he looks.


We're very proud of our little monkey. :)

So there's the updates on Isaiah's appointments.  Sorry for my lack of posts, we've been so busy with family time and good things, it's been hard to catch up on the computer.  We'll be sure to update about Isaiah's PAM treatments when they happen, and I'm going to try to get a few pics of Isaiah sporting some New Years party gear. :)


We plan to party with the nurse tonight.  And by party, we mean we'll all be sleeping while she hangs out. Stay safe everyone! Happy end of 2013! :)

Friday, December 27, 2013

Christmas Recap

Isaiah's First Christmas was awesome!  It basically started on Saturday, the 21st, with Dave's side of the family hanging out at our house.

We had Isaiah in one of his adorable Christmas outfits, but it didn't last too long since it got pretty warm in the house...

His Baba held him for the first time.   Look at that smile, I think he's smitten!

He also spent some time in his Pop Pop's lap.  He ended up completely crashing from exhaustion shortly after this picture was taken.

We had a lot of fun catching up, feeding our faces, opening gifts, and just enjoying the family time.
Isaiah ended his night in his Grandmom's arms, happily singing Christmas carols and bonding.

On Christmas Eve, this happened.
I'm still beyond excited. He has yet to do it again, but he's been drinking 2 ounces now without issue when he's in the mood.  He's definitely making some serious progress.

Before we knew it, it was Christmas Day!
Hey look, Santa came!

Isaiah is obviously the greatest gift we've gotten this year.

He sure woke up in the Christmas spirit!

We ended up giving him a few gifts to see what he'd think...
Uuuum, hey guys? What do I do with this thing?

Once we were all done opening presents, Daddy read Isaiah one of their Christmas presents and Isaiah took a nap until it was time for a bath and then more family time!  This time my side of the family came to visit!  Isaiah received more gifts and more family time.  It was awesome!

We took a ton of family photos.

Oh hey look! Isaiah not only tolerate being held up now, but he kind of loves it! Hooray!

After photos, we sat down for a yummy meal while Isaiah napped in his room!

It was a wonderful Christmas....
You know it was wonderful, when Isaiah looks like this 10 minutes after everyone heads home.


We've had a few appointments over the last 2 days, I'll share the outcome of them over the weekend.  Until then....enjoy the rest of 2013!

Tuesday, December 24, 2013

One Year Ago

One year ago this month, we found out we were pregnant.

One year ago today, we saw our baby for the first time and heard his amazing heart beat.

Although we were only 6 weeks along, we were going to see so much of our family, we had to tell everybody!

We had to because we knew I couldn't keep my mouth shut.

So, for the sake of reminiscing ....

One year ago....it was just the beginning of the most exciting, terrifying, and downright amazing year of our lives.


Merry Christmas to you and yours.  May this holiday be full of peace, love, family, and the real reason for the season.

He Did It!!!!

Isaiah has given us the BEST Christmas gift that he could give us!

We've been working for quite some time on different oral stimulation activities to make sure Isaiah stays interested in the bottle.

I hated doing it at first because I was scared I'd hurt him....but obviously it's less painful and more fun...


After I work his cheeks, tongue, and gums we try a bottle.  The most he's ever taken was just one ounce.  His day feedings are a little over three ounces.  I'd try for one and then tube feed the rest.


But today?


TODAY HE TOOK (almost) HIS WHOLE FEED! He TOOK THREE OUNCES! (He was just 5 mLs shy of the whole thing when all was said and done so no need to turn on the feeding machine!

Please ignore my fabulous attire.  Today I'm still in my pjs at 10am. lol

And then I put him on my shoulder (!!!) and he BURPED the king of all burps.


and then when I sat him back on his back he complained and whined until I put him back on my shoulder.  He sat on me on his tummy for 45 minutes! AHHHHH SO PROUD!

MY BABY DID IT!!!!!!!!!!!!!!!!!!!! He drank from a bottle!

GO BABY GO! I'm so proud!

I may have called his doctor screaming in excitement.

His doctor was also super excited.  He had a lot of good things to say, including that obviously Isaiah's breathing is doing so much better since he can tolerate the bottle and suck, swallow, and breathe.

Truly, what a gift Isaiah has given us! 

Merry Christmas Eve everyone! 

Sunday, December 22, 2013

Christmas Photo Fun

I thought I'd share some pictures from a photo shoot my friend Kate took for us back in October...

They turned out awesome.

I had this whole vision; I dressed Isaiah as a cute little elf... I pictured him tuckered out after a day of wrapping presents for Santa to give out.

Nailed it.

I'm such a weirdo.

This photo shoot got really fun when Carl got involved.  When Isaiah became a little cranky and needed some cuddle time, Carl wanted to be the star of the show.

I promise that this was not set up in any way...except that I threw the little hats in there because they're fun.  And yes, I totally made that green hat for Carl. 

We did try to get a few shots as a family...Carl wasn't so into that part, but at least we got one shot...

And then things got silly (of course it did, it's us)...
That's Isaiah's "mute button" pacifier.  Very funny, Dave.

Thank you Kate for taking such fun pictures of our little family!!!!

It's amazing to see how much Isaiah has changed since October. 

Here he is yesterday, before our Christmas gathering with his Martin aunts, uncles, grandparents, and his Baba.

The hat kills me.


Merry 3 days before Christmas, everyone! I'm hoping to post here or there over the holiday, so feel free to stop back when you're relaxing after your hopefully wonderful, family-filled holiday. <3