Thursday, November 28, 2013


As we wind down, stuffed to the gills, we're relaxing on the couch chatting about how much we have to be thankful for this Thanksgiving, our first as parents.

We're so thankful for Isaiah.

We're thankful for our fellow OI parents.  They showed us we're not alone.  They have supported us since we were 24 weeks pregnant with Isaiah.  They gave us hope.  They gave us knowledge.  They gave us friendship.  They gave us support...and continue to give all that and more everyday.

We're thankful for the wonderful hospitals, Thomas Jefferson and A.I. Dupont, and their amazing staff that has helped us to get Isaiah to where he is today.  They believed in Isaiah and helped to bring him into this world and helped him grow stronger.  They helped us learn how to care for Isaiah.  They listened to us when we brought up concerns and were sure to teach us or learn whenever a situation arose.  They gave us peace of mind while he was in their care.  

We're thankful for Isaiah's night nurses.  They take such great care of Isaiah...and give us a good night's sleep to boot. :)  Each of Isaiah's nurses is special to him, to us.  

We're thankful for family and friends...the family that we were able to celebrate with and the family and friends that we missed this holiday.  We love you all.

We're thankful for Carl. :) We're thankful he's handled the changes that Isaiah has brought to the house. 
Someone needs to tell him that the new comfy stuff isn't for him though...even if he does give us this cute face when we tell him to move it or lose it. 

We're thankful for all the firsts we're experiencing with Isaiah.  Like our first snuggled-up cuddling that we had just this week. It was a moment that all parents treasure....but it's something that we had to wait for and at times that wait could be excruciating.  We had to wait for Isaiah's bones to be strong enough to handle the shift in weight.   We had to wait for Isaiah to give signs that he was ready for it.
It was so worth the wait.

We're thankful for pamidronate (PAM).  It is helping Isaiah's bones grow stronger.  It did give me a lump in my throat during the last treatment...but it's such a wonderful thing to Isaiah.  

We're thankful for holidays, even if they are exhausting.  :)  
Shhhh, he's sleeeeeeeeeping.  

We're thankful for you.  For your prayers.  For your support.  For your love.

We hope you and yours had a wonderful Thanksgiving surrounded by good food and loving people.

Monday, November 25, 2013

Future Couch Potato

First things first, here's a quick update on the whole "does Isaiah have a broken leg or what?!?" We're sort of now leaning on the whole "or what" side of thought.  He's been much happier the past few days.  He's been moving and stretching his leg.

This kid is a mystery.

Neener, neener mom. You'll never figure me out!

But, being the crazy mom that I am, I've started documenting his unexplained screaming, self-splinting and behaviors with them, and more.  I'm leaning toward seeing if we can chat with someone about the idea that maybe Isaiah is having some digestive issues.  Maybe he's not self-splinting, maybe he's curling up in the fetal position because his tummy hurts.

Or maybe I'm just crazy and my kid had a fussy week.

There's that too.

Isaiah is also getting older.  Maybe his cries seem more panicked but in reality they are just louder because he's stronger. And he is his mother's son (so, ya know, he's loud).

Maybe I need a hobby and/or an alcoholic beverage.


Anyway, we ordered this whole body support pillow and it came in the mail last week. It's by Ben-Bat and it's pretty cool.  It'll be awesome for support when Isaiah is in a car seat.  It's pretty fantastic in this rocker from his Auntie Pam too.

I'd say he approves given that he started smiling as soon as he was in the seat and covered in blankets.

I ended up turning on a Disney Sing-Along that Isaiah's Uncle Simba gave him. 
No, he's not related to the Simba in the movie. Simba is a popular name, you know.

This rocker is the perfect seat for a future couch potato (I kid, I kid.  Isaiah will be an active boy!)

He kind of love the singing in the video, can you tell?

In other news, the lower level of our house is finally safe for Isaiah.  Remember this?  That post was only the beginning of a pregnant lady's worst nightmare.  We had a company come in and waterproof the lower level.  They finished up the work the day before my water broke.  Yup.  The lower level was a mess...carpets rolled back and covered in concrete dust.  Walls ripped apart.  Furniture in the garage... Dave got the walls back together when we got home from the NICU in October (they were a wreck after the waterproofing).  We called in a carpet company who re-stretched the carpet (needed to be done after sitting rolled up for 3 months) and sanitized it for us.  We've been wiping everything down as we bring it back in the house...

This weekend was the first time Isaiah was down there.

This is the place we'll spend a lot of time when he's older.  This is the place where we'll open Christmas presents.  It's where we'll cuddle up and watch movies and play board games.

Oh man, it's so time to start the holidays with our little miracle... Bring on the turkey so we can put up the Christmas tree!  :)  <3 

Saturday, November 23, 2013

Time to Immobilize

So after hours of Isaiah screaming, Dave and I decided to call his local pediatrician just to make sure everything (minus the OI-related stuff) is ok (meaning, no ear infections, allergies to formula, etc).

When we were at the office, Isaiah was screaming bloody murder and then passing out asleep.  He had a temp of 100.4 (which was new because it was still 97.3F in the morning).  

The doctor couldn't rule out an ear infection since he has all that build up in the way (and I may have emailed the audiologist as soon as we got home reminding her about that) so he couldn't see in Isaiah's ears...but he has no symptoms of an infection besides the low grade fever...which may have been because he was so worked up.  It could also possibly be a symptom of a fracture. 

The doctor really couldn't help us because "Isaiah is just so fragile"  Ugh.

So we went home confused and advised to "go to the ER, probably DuPont, since they know you so well".  

BAH.  I wanted to ask him the same thing I asked the nurse on the phone prior to getting to the office- "How will the staff of your office ever know my child well if you just keep sending him to the ER?!?!?!"  But alas, I didn't want to be rude to someone else.  I understand this disease is scary; especially when I know these doctors only probably spent 5 minutes on it in their studies.

We emailed with Isaiah's doctor from DuPont who said that it is likely a break and to medicate and watch.  So we did.

This morning we got a little of this...

and some of this...

See that self-splinting again? Oy.

Are you playing games with me here, kid??

No momma, something hurts. :(

So I wrapped what I believe is our first break at home...because my gut tells me it's that right leg.

And since Isaiah is no fan of swaddling, I've tucked him in tight to help immobilize him.

Thanks mommy, that feels better!

Hopefully, if it is a break, Isaiah will heal quickly.  If it's something else, hopefully we can figure it out quickly.  We have some first holidays to celebrate, darn it!

Fast healing for you, baby boy. Mommy and Daddy love you. <3

Friday, November 22, 2013

Grumpy Gus

The past few days have been a tad rough...I'm having trouble trying to figure out if Isaiah is having normal fussy-baby days or normal OI-baby days...

He goes from looking like this....
to this...
but only [the above] when in the cuddling position.

I took a close look at him yesterday and snapped this picture.
At the time, it looked like he was self-splinting his right leg/right arm.

See how he has those limbs pulled close to his torso?

I have been putting him on his right side.  I also got his pulse-ox cord caught when picking him up at one point and pulled that leg.


(yes, I need to stop trying to blame myself.)

After a good amount of time in tightly tucked in blankets...he looked like this.
Then I started lightly poking at him and even gently pulling his limbs and he just relaxed and let me.

I would think since he let me do that with zero reaction that he's not broken?


Being an OI mom is confusing.

At least we have Sesame Street to help us relax and sometimes smile our way through the fuss.

Here's the video he likes to watch over and over.  It has a perfect message for Isaiah...and everyone young and old.

Today Isaiah is still fussy.  He might be starting to teeth.  It could be gas.

It could be a microfracture.

Who knows...if he looks like he's self-splinting again later today, I plan to splint him with the cotton rolls the hospital supplied us with just to be cautious....

and hopefully we can get back to happy Isaiah soon.  

Wednesday, November 20, 2013

Isaiah is a Bum Genius!

Isaiah's bum is sitting comfortably nowadays.  During the day, we've switched over from disposable diapers to cloth diapers (and our wallets thank us).

There's many a mom who probably think I'm crazy for this switch but it is something I was excited to do since early in pregnancy.  We hated the idea of our trash at least doubling.  I did research and learned that diaper rashes are minimal.  Blow-outs are practically non-existent with cloth.  Plus, there's all that money saved in the long run.

The initial purchase was a big one.  Back in May, we bought 18 diapers for a total of $300...We actually hit a sale, too- buy 5, get 1 free- so we got 3 diapers for "free".  Dave did the math, given the amount of diapers we change a day, we're saving about $2,500.  The diapers we bought are one sized, meaning if we can take good care of them, the 18 diapers will last until Isaiah is potty trained.

Right now, Isaiah only wears BumGenius 4.0 One Size cloth diapers.  At some point, I am sure we'll look into other brands/types just to spice things up, but we're happy with our choice.  (I just wish they had more fun prints!)  I did a ridiculous amount of research before having Isaiah and it was actually difficult to find a negative review on them at the time.  (The biggest negative is the price, but you get what you pay for!).

My favorite aspect is that I can customize them to Isaiah.  Right now, even though he is only 9lbs, he has to wear size 2 disposables because of his femurs.  The snaps on the BumGenius (you can see one in the photo above) help me to size the bottom part of the diaper to the smallest size that I can, but I can have the band around his waist (the part that is affected by his femurs) at a wider, size 2, that fits him nicely.

Here he is in his very first cloth diaper!

Our system is pretty simple.  We have the clean diapers ready for Isaiah (meaning snapped to the smallest size and stuffed with the liner).  When we change him, we take the dirty diaper to the step can that I bought specifically for the diapers; it has a special bag inside that I got on Amazon that can be washed with the diapers.

Here's the can..
Here's the bag that's in the can.  We have 2 bags so there is always one in the can.

When I open the can, I grab the end of the liner in the diaper and let the diaper fall in the can first, then drop the liner...unless Isaiah gave me an extra special present.  In that instance, I bring that diaper to the bathroom in our bedroom.  Dave installed a diaper sprayer on the toilet in there.  I spray the gift into the toilet and then bring the diaper to the can and drop it (and the liner) in.

 I wash the diapers every other day.  Isaiah only goes through about 3-4 diapers a day right now- which will be about 6-8 total once we are exclusively cloth.   The bag makes it easy to wash everything; I just dump the contents of the bag and then the bag itself into the washer and turn the washer on (Prewash cold; second wash with detergent that's hot and includes a second rinse).  Hooray to not touching gross diapers!  The liners can go in the dryer but the diapers themselves are line-dried, preferably in the sun, so they can be sun-bleached of any stains.

Carl says "seriously, lady?!? There's a thing called a litter box for stuff like this."

We're still using disposables at night to make the nurses' job easier, but if Isaiah starts to prefer them over disposables, disposable days are numbered...except for outings to DuPont and such.  At some point we'll get wet bags that can travel along with us so we could use cloth when we're out and about, but I'd rather go with disposables for those instances for the time being.

So there's the low down on Isaiah's business.  I'll be sure to share our feelings on this exciting topic again in a few months for those interested.

Monday, November 18, 2013

Back to Our Normal

First, I just want to thank Team Isaiah again for raising money for the OI Foundation and running in Isaiah's name.
Molli, Mikey, and Claire, you three are an amazing inspiration!  
Thank you!!!!

I am pretty sure we are back to our normal now.

Isaiah is loving discovering new toys every day.

No matter the position, Carl is just plain happy to be on a lap.

Isaiah is officially laughing!

Life is good.  Seriously.
Woah. Look at the red fish!
I wonder if I can eat it!

Isaiah is having a bit of a crabby day today, but babies are aloud to be fussy.  It just gives me a reason to stay in pjs all day and cuddle. :) Happy Monday :)

Friday, November 15, 2013


Yesterday Isaiah finished his last Pamidronate treatment for this cycle.  
This cycle was perfectly boring; it was nothing like last time.  

Isaiah did so well that Dr. Bober had us sign up for his next treatment in Day Med today. Day Med is just as you'd probably assume- day medicine- we'll come back in 8 weeks Monday-Wednesday as an OUTPATIENT!
Isaiah's thrilled. Us too. :)
Today was a day of giggles with daddy and the staff members of the NICU...that is, until it was time for his hearing test.
His hearing test that was supposed to last 2 hours...
but instead lasted 4.5.
The Audiology doctor said a lot of things that went over my head but the bottom line is that Isaiah seems to have some blockages in his ears.  The structure of his ears is in the normal range.  
She believes Isaiah may have fluid in mid-ear and knows he has some nasty stuff in his ear itself- when she put the little probes in his ears, balls of wax would come out.  Actually, once she pulled one of the balls of goop out from his right ear, the test for his ear improved which was a great relief.

She has to consult with another audiologist and then we'll set a plan to clean out his ears and retest. 

But the bottom line is- he can hear.  It's most likely muffled, but he can. :)

Once, the test was over, Isaiah got his Synagis shot to protect him from RSV and then we hit the road!

Before leaving, we found out that Isaiah is a VIB. 

VIB=Very Important Baby.  :)  

That NICU staff...cracks me up....

and amazes me.

If any of you check out the blog still, thank you for everything you have done for our Isaiah. 

Thank you from the bottom of our hearts.  You have been amazing to Isaiah and to us.  You took such remarkable care of Isaiah and taught us so much.  Isaiah wouldn't be in such beautiful, stable condition if it weren't for you.  Thank you. Thank you. Thank you.

Once we were on the road, Isaiah passed out. (Seriously, I'm not sure we were even out of the parking lot yet before he fell asleep.)
See those numbers?  His oxygen level is 97%- OFF of oxygen, while passed out asleep (the green is his heart rate: 109=deep sleep).

Isaiah was off of oxygen for almost his whole time in the NICU.  He was on some when he was crabbing on Tuesday, and had to go back on for a short time today when he was sedated, but we drove the whole way home with Isaiah breathing room air through that C-PAP.

ROOM AIR! Hello, strong baby!  Guess you didn't want to sleep through your whole ride, huh?

Once we were home, we gave Isaiah his dinner... and he passed out- again.  
I swear he knows he's home and loves it.  He's so relaxed again.  We actually just put him back on a tiny amount of oxygen because he dipped a few times when he fell back to sleep in his play pen.  We plan to leave him on it tonight so he can get a safe, good night's sleep and then we'll see how he feels about breathing room air tomorrow. :)

Thank you to everyone for praying for and sending good wishes up for Isaiah.

You were heard yet again.  Amazing.