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.

Sigh.

(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?

Ugh.

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.  

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.

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!!!!

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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 :)

VIB

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.

Pam Day 3

Today is the last day of Isaiah's PAM infusion.  The IV in his arm stopped working so they kept him IV-free until it was time for his PAM.

We began the day with Isaiah getting his PFTs done again.  This is his breathing tests that they do.  Today was a redo from Tuesday.  He was quite cranky during Tuesday's test, so it was tough to get an accurate reading.

They ran two tests.  One with him breathing on his C-PAP.

I'd say he didn't seem to mind. haha

The next one they did without his C-PAP!

Look, you can see his nose!!

Here's what his breathing looked like on the screen.  My bet is that those squiggles are a good thing.

We kept his C-PAP cannula off of his face for about an hour, but we noticed his CO2 levels was creeping up on the monitor so we put it back on him just to be safe.

Still a happy baby!

He now has his IV back in his scalp and is handling everything well.

In 4 hours PAM will be all done for 8 weeks and hopefully that IV can come out since his calcium levels have been beautiful (in the past, they've kept it in due to his calcium dropping with PAM).  

He's due for a really ridiculously good bath that I plan to torture him with (his night nurse will thank him).

It's looking like we'll be in the hospital until tomorrow.  They are going to give Isaiah his RSV shot and then sedate him for his hearing test.  Hopefully that'll go as well as this PAM treatment and we'll be on our way! :)

Thank you so much, everyone, for your prayers and well wishes.  They've been wonderful.

Pam Day 2

Isaiah received day 1 of 3 of his Pam infusion last evening.  It started late since they ran all those tests on him.  Each infusion lasts 3 hours with 1 hour of flush when it's over.

We were confident, but on edge.  We figured if something was amiss we'd see it in Isaiah in the morning.  This is what we walked in to this morning:

I'd say so far, so good!  Love it! His lungs sound clear.  He doesn't have a temperature.  He's happy and calm.  This is fabulous.

The IV that's in Isaiah's arm is still working beautifully so his care team has had no issues getting day 2 of his infusion started.

That pacifier is a dare.  Don't do it. :)

Ha, just kidding, I'm still in a good mood. :)

While we hang out with Isaiah, we're also getting other things in order.  The team is talking about giving Isaiah his RSV shot before discharge since our home doctor can't get us in until November 21.  (Yes please!)  They are also talking about having us stay until Saturday so that we can do his hearing test on Friday.  He has to be slightly sedated for this one; I'd actually love for him to be in the nicu for it since it'll be his first time with sedation.  He'd only stay until Saturday as a precaution to monitor him; I love how they care for Isaiah!

Isaiah is still off of oxygen! Right now he is sleeping and is stating above what they require.  Normally, they like to see numbers between 92 to 96%.  He's at 97%.  Overachiever alert.  :)  You'll notice in the pictures above that he still has his cannula (that green tube going into his nose); he still has the Trilogy machine giving him what he needs from the C-PAP, it's just running on room air instead of having that boost of oxygen.  Because his CO2 levels have been so beautiful, there is talk about s l o w l y weening him from that C-PAP machine (goodbye cannula?)...but we're in no hurry right now.  We don't want to rock the boat.  

I'll be sure to update again tomorrow.  Thank you so much for your continued prayers!  :)

Fingers Crossed

This morning we left bright and early to head down to DuPont. I had him prepared for the cold and just wanted to eat him up in his winter coat.

Isaiah enjoyed his first snowflurries. 

We arrived at DuPont at 9:15...

We are all comfy in Isaiah's old room in the nicu and they have Isaiah in a big boy crib!

Isaiah had a chest X-ray that came out pretty good (no evidence of new rib fractures and wonderfully clear lungs...but he does have a healing humorous fracture. Sigh).  They ran blood work and all looks great there as well. His co2 is also fabulous; it was 39 last time I looked at the monitor and that was just a skin monitor.  (Healthy levels in the blood are between 35-45, the fact that it's right on the skin means his co2 in the blood has to be beautiful). 

Fingers crossed everything stays this great!

He's been a bit crabby. I'm assuming he's realizing he's not at home.  We made sure to bring things that remind Isaiah of home. 

I think it worked to calm him. ;)

We're now waiting for the Pam to get here from pharmacy and to begin running. We're also waiting for the pulmonary team to get here to run tests on Isaiah's breathing. Hopefully he's made more progress. 

We will surely keep you updated! Please keep your powerful prayers coming. Thank you! <3

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Updated to add...Pam is flowing!  They had given him a scalp iv but it didn't stay because Isaiah's crabbiness had him sweating. They went for his left wrist and bingo! We're wondering if Isaiah's foul mood had to do with his dislike of the scalp iv; he calmed once it was removed. 

He's been sleeping since about 6:30 and we're hoping he's out for the night since he had such a long day. 

We're going to hang with him until about 9 and then get some sleep ourselves. Hopefully it will be a quiet, restful night all around. :)