Friday, September 27, 2013

A Weekend of Monitoring

Aka hopefully nothing.

Sorry for the lack of updates. I had my own dr appointment which involved a run to Lancaster and then got into a minor funk.  

We're super spoiled here in the nicu. Isaiah had his own room and then they had to do work in that room so Isaiah needed to share a windowless room. He was moved while we were in Lancaster. 

When we got back to DuPont, I was in a serious mood.  Usually the rooms feel huge...but when you add in 2 cribs with adorable babies, all the equipment they come with, the adults they come with, chairs for the adults, and the crazy amounts of (teams of) doctors that come in...well, the rooms feel like closets. Full closets. 

On top of feeling claustrophobic, I was having some serious emotional issues. Sitting next to a mom that got to hold, cuddle, and love on her baby affected me way more than I expected it to. Way more.

Thankfully the staff saw we were stressed and got us into a new room ASAP.

And we can breathe. 
(And we can now spot our visitors scrubbing in!)

Speaking of breathing...

The representative from the oxygen company came and brought us the machine Isaiah will use at home.

It's a cpap machine with a crazy big nasal cannula. 

And as you can see we're all having trouble making the thing stay on. There are many layers of tape on Isaiah's cheeks. There's even Velcro. I'm pretty sure that the next step is duct tape.

Just kidding.

This thing is helping him keep his co2 at a safe level. It's just not pretty. I had a plan for his Halloween costume, we may need to alter that plan to a scuba diver? 

It's a great machine because it's portable. It has a 6 hour battery life. This is fantastic. When they were talking before, they were talking about a different machine that wasn't portable...we would have basically been homebound. It would not have worked at all for the many rides we'll be taking to his appointments. 

Anyway, now that his cannula is staying put, Isaiah doesn't seem to mind it.

Even so, once he's awake we plan to completely start over. With the duct tape. ;)

The staff is talking discharge again. They are thinking Wednesday. We want to go a few days testing the new machine and working out Isaiah's feeding schedule.  We want to be sure his co2 level stays at a good place and that he continues to improve. 

We're also talking about the future. He needs to come back for his hearing test. He needs to come back to see Dr. Bober. He needs to come back to see his pulminologist. He needs to come back for his next treatment.

They're trying to coordinate most of that into one day in about 2 weeks. His treatment is due 4 weeks after that. He needs to be inpatient for that in case what happened with his respiratory system was a reaction to the Pamidronate. 

I know some of you may be thinking we are crazy to do the treatment again...but it's so important to his bones, to help them grow stronger, to help with the constant chronic pain he's in due to the OI; we can't give up on that yet. He'll be getting the treatment in the best place for him- back in the nicu with a staff who knows him well and cares about him.

He did have a chest x-ray last night. His lungs look good but he does have evidence of new rib fractures. Thankfully he doesn't seem to be showing signs that he's in pain.

Both Dave and I got a chance today to snuggle with Isaiah for the first time in days. (It was tough/intimidating with the new tubing and wires.) We're hoping to get lots more cuddle time in again this weekend. 

We're figuring it's safe to do so since we both got our flu shots. (This closing really makes no sense; it's just my subtle way to remind you to get your flu shot. Seriously. Or I'll duct tape a nasal cannula to your face.)

Tuesday, September 24, 2013

Bouncy Baby!

Isaiah is officially sitting in a bouncy chair now!

His physical therapist (PT) at Dupont (pictured below with permission) has been dealing with us crazily pestering him about getting Isaiah in different types of baby goodies- bouncy chairs, swings, you know.

Well, yesterday Isaiah's PT worked some foam on the chair and made it so it's supportive to Isaiah and he's seeing the world from a different perspective for the first time- sitting up!

I'd say he loved it...because he fell right to sleep. (That's usually a sign of baby approval, right? When they pass out?)

He was in there for about 30 minutes yesterday, but today he was in for a whole hour this afternoon and then a half hour this evening. 

He was much more awake this afternoon:

Instead of a mirror, I may have stuck my iphone in Isaiah's face for him to look at himself...and it may have given me the opportunity to take funny pictures of him.

Extreme close-up!

He's even turning his head more in it!
Daddy must have said something funny: 

I would say Isaiah approves of the different arrangement.  We are definitely looking forward to his sitting in our bouncy chairs and swing at home! :)

Along with this PT (physical therapy) going well, Isaiah's breathing is still doing great as well.  We're waiting on the oxygen company to bring the new machine we'll use at home to the hospital.  We're going to use it at the hospital first to make sure all is well.  

They are also talking the big D word again- maybe by the end of the week! There's a slight possibility we'll be going home by ambulance!  It depends on our comfort level and our insurance (ha).

We'll keep you updated. In the mean time, people, get your flu shots. Even I'm doing it because it's a major way to protect Isaiah...and if you know me and my fear of needles, this is big, and it wasn't even a question.

Monday, September 23, 2013

And He Smiles :)

Could he be any cuter? 

Not much has changed with Isaiah's care since the last post (this is probably a good thing!). The staff has found out that the oxygen company we're using  does have a Vapotherm machine available for home use; the only issue is it's basically for adult care so its lowest setting is 5 liters.  So although he was down to 3 liters, they had to bump him up so he can get used to the higher flow again . It was a good thing because his very observant nurse noticed he was retracting while breathing so this higher flow is helping him breathe easier. 

His nurses sure love him. How can they not?

He's been in such a great mood- so super smiley!! 
It's so great to share a post like this...hooray positive post!!!

Thank you all for the continued prayers and love. <3

Sunday, September 22, 2013

More Progress!

Isaiah has sure gotten used to his mask. 
Dare I say he likes it? Nah....he's just used to it.

Well, he's been doing so well on it that they lowered him to the lowest setting and he has maintained his progress. This morning at rounds the team decided to switch him back to the vapor therm machine (aka no more Hanibal Lector mask!)!!

Oh snap, we can see our baby's face again!

We are noticing that his respiratory rate isn't nearly as good as it was on the cpap (mask). He's definitely breathing quicker again. We're hoping he can bring it down to a more comfortable level on his own.

Either way, we're just thrilled he's made such improvements in such a short time.

This kid has been sleeping his face off. He had a lot of sleep to make up for though. It's so wonderful to see him finally resting.


Friday, September 20, 2013


Another quick update!

Isaiah is doing SO MUCH BETTER today!!!

He's got his feistiness back! (Holy exclamation points, can you tell I'm excited? !!!!)

 His co2 levels are normal/right above the normal range. His respiratory rate has been much more consistent as well (not nearly as much beeping about a high rate as before).

Tonight we gave him a bit of a sponge bath and now he is completely passed out.

Because he's made such a quick recovery, the doctors believe this respiratory issue that he experienced this week was due to his Pamidronate treatment. Pam is so important to him so we are still planning on his next treatment in 8 weeks. He will obviously be inpatient to monitor his lungs/co2 level (we were hoping to bring him to day medicine for his next treatment...we'll get there.).  

No one is 100% sure that this was a reaction to the Pam; they are just kind of leaning that way. There's no research showing this type of reaction during the second cycle, it really makes no sense..but the fact that everything unraveled like it did...will make everyone move with extreme caution during the next cycle.

Thank you so much to everyone for the continued prayers. They, along with an amazing nicu staff, are what have gotten him back to his stable state where he is now. We're so grateful!

Thursday, September 19, 2013

And it continues

Just a quick update as I know Isaiah has many friends and family members concerned for him.

He's still been having a difficult time breathing and with his co2 level. We had a sleepover in his room but neither of us got more than about 2 hours of sleep. He was very unhappy and having so much trouble breathing.  This morning I may have used the stethoscope to listen and could hear an almost crunching sound in his lower lungs. The nurses confirmed they heard it as well and believe it was the fluid. 

So they have given him another dose of the diuretic. He's also getting the steroid intravenously so it makes a bigger impact.

He deSated again this morning. When they tested his blood, his co2 level was a scary 98.  Because of this, he was switched from the nasal canula to the cpap mask. (Warning: this isn't pretty.)

It's definitely hard to look at but it's helping. At one point today the nurse practitioner was talking ventilator but Isaiah finally stopped fighting the help they were giving him with this mask and amazingly his co2 levels are dropping!!

Not only are his co2 levels at a much better rate (56!!!) but they just took an X-ray; I snuck a peek and his lungs look SO MUCH BETTER!! You could see the air in them! 

He's also finally giving in to sleep. 

Thank you so much for the prayers and's working; please keep going!!!

Wednesday, September 18, 2013

I Don't Even Know

I don't even know how to begin explaining today....maybe one word.


Isaiah needs your prayers, positive thoughts, pixie dust, everything you can muster....and if you can spread some to my friend Jen too, I'd appreciate it.

Ugh. Isaiah is still having difficulty with his carbon dioxide levels.  Like I said in my last post, the staff is looking for his levels to be between 35 and 45; yesterday he was at 67 and then 64.

His level today is still elevated, but I wasn't given a number.

On top of this, he has a new issue.

When Isaiah came in on Sunday, they did an x-ray to check his ribs.  All looked good.  Today he was extremely agitated and de-sated again.  The staff started noticing he was working much harder to breathe.

Thus began the guessing game as to what has him so upset, what has him breathing so darn hard, and how to fix this all.

They tried an Albuterol treatment to open up his airways.

We didn't notice it help him.

They took another x-ray to check his ribs again and noticed that in that x-ray his lungs look different from the one taken on Sunday.  They look like something's in them....possibly fluid.

One possibility is that he is having a reaction to the pamidronate.  Respiratory issues can be a side effect of the PAM....but we should have seen that during his first infusion.  Dr. Bober has never seen side effects show up for the first time at the second infusion.  If this is what it is, it should clear up by Saturday.  If this is what it is, we'll know because it's possible it'll happen after his next infusion in 8 weeks.

Another possibility is that he aspirated from reflux.  We were starting to notice signs of reflux on Sunday evening.  We and his nurses voiced our concerns so the neonatologist on duty started him on Zantac yesterday.  This may take a few days to really kick in.  Because of the apparent presence of fluid, the staff has also put him on Lasix, which is a diuretic (and I'd say it's definitely working; this kid is now going through diapers and bedding like it's his business.).  They've also put him on a steroid that he receives 2x a day through a nebulizer.

And in case he's fighting an infection, they've also started him on antibiotics.

Now we wait and pray that he gets better.  Dave and I are glued to him trying to relax him when he's upset and just hoping he gets some sleep.  The little guy is so beyond is exhausted it's almost like he's too tired to sleep.

On top of all of this, he really had a busy day.  He had his repeat hearing screening...which didn't get completed because they weren't seeing anything different from the last time and he was getting upset with getting poked in the ears.  Now we wait a few weeks until he does the diagnostic test which is a 3 hour test.

He also saw his friends from pulmonology again and they ran a test on the way he breathes.  We're hoping to hear about the results from that tomorrow.

This poor kid cannot catch a break. 

So like I said, prayers and love are appreciated.

Monday, September 16, 2013

It's All Fun and Games Until My Baby Turns Blue

Oh man, 24 hours ago we were thrilled and confident.  Today we're exhausted and confused.

Like I said in my last post, yesterday we got to DuPont and into the NICU with no problems.  The IV went in perfectly and Isaiah got his first day of his PAM infusion starting at 6:00pm.

This morning we walked in to this handsome face:
Look how calm he looks!

Dr. Bober stopped in to chat with us in the afternoon.  He commented how he's changed!  He noticed his chest is moving differently (in a good way) to breath.  He said his calcium level is fantastic.  He talked about weening the morphine.  He mentioned how happy Isaiah looks!  He noticed the calm demeanor that we noticed this morning.  

He also mentioned when they tested his calcium, they also tested his CO2 levels....and they are elevated.  They like to see levels between 35-45 ideally, and Isaiah's came back at 62.  They guess that it's due to his continued (but improved) rapid breathing.  Since he takes such quick breaths, it's tough to push out the CO2.  

He had been on 1/8th of a liter of oxygen.  To sort of start things over when it comes to Isaiah's oxygen/CO2 exchange, they wanted to up his oxygen to 4 liters.  

So someone from respiratory came in with a new machine and hooked Isaiah up.

I had no idea what any of this meant. Now I know.  The 1/8 of a litter was a very slow flow- just a whisp of air going up his nose.  4 liters? That's a hurricane in his little nose.  It was loud and forceful and he absolutely freaked out.  He HATED it.  He refused to breathe it in.

He de-sated.  

I lose mom points for letting it happen.

To those of us that aren't in the medical field, that means his oxygen level went down.  And they went down quick.  He had been up at 99% before....and he quickly went down to the 60s.  

My poor baby turned blue.  His heart rate dropped below 100.  

And commence internal panic attacks for both Dave and I.

They tried to give him time on the 4 liters, but he just couldn't get above the 70s so they lowered the oxygen to 2 liters.  

He's since been on the 2 liters and is getting 40% oxygen (room air has about 21% oxygen).  His monitor is dinging like crazy- his oxygen level has been hovering between 86 and 92% so it's still below where they want the level to be.

I am so completely confused by all the numbers and percents and liters and acronyms and it just makes my darn head throb.  

I'm just happy he's no longer blue.

and I never ever ever want to see him look like that again.


So now the staff is working on figuring out the best level for his oxygen to be at so that it works with his CO2...which means we're probably not going home tomorrow after PAM is complete.  whomp whomp.

Ugh. Please send a little prayer up for Isaiah.  We really need his ribs to get stronger so he can work all of this out.  

Sunday, September 15, 2013

Nursery Reveal!

First, here's an update on today:

We're all registered and comfy in the DuPont Nicu.  The IV is in, the PAM is flowing, Isaiah is resting. Hooray!


This post would normally go on the house blog....but I've stopped paying attention to that for a bit and I've had some requests from oibelieveinisaiah readers that I need to show everyone Isaiah's finished bedroom!  I had a moment to take pictures this week while we were home, so here you go!

So who remembers when we had an office?

It was an embarrassing, shut-the-door-and-pretend-it-doesn't-exist type of room.

It was full of college left-overs.

It was temporary.  We knew once we started a family that it would change to our first child's nursery.

Well, once that stick had that extra pink line, I went on nag mode.  "Daaaaave, we have to get the room ready!" So we slowly packed it up, found new homes for things, and purged purged purged.

Dave worked on redoing the walls- they were textured- like popcorn ceiling on the Dave had to smooth them down (sanded them, skim-coated them, sanded them some more) before painting them. Once they and the ceiling were painted, Dave's awesome brother-in-law John came and helped Dave install crown molding.

And then the fun REALLY began...

are you ready for this?

for the big reveal?

If you're on facebook or it you paid attention to the end of his Journey Home video, you got a sneak peek when he came home.....

Should I stop making you scroll now?

ok. I won't even say anything after making you scroll all that way.  Prepare to be attacked with pictures.

So there's your spin around the check out the details! (warning, I'm going to talk again.)

Could these words be ANY truer? I think not.

This is one of my favorite details in the room- I found black wall planters on amazon for $8 each, spray painted them orange and hung all of Isaiah's fun soft toys and books- they are in perfect reach of the changing table. (You can thank Pinterest for this amazingly fabulous idea.)

I had some fun with scrap paper and totally copied this idea from etsy.

But my absolute favorite spot in the room?:

It's not my favorite because of this awesome plate that I found at Michael's that holds Isaiah's pacifiers...

Nope, it's because of the wall art we made just for Isaiah... So much meaning is on this wall and a lot of work and love went into it.

Dave's favorite spot/thing in the room is the cross that was made specifically for Isaiah...
How special is that?  It's something we'll treasure always.


Oh goodness, we just love the room.  Don't you?  We don't even remember what it looked like before this. (Good thing we have pictures to remind us of where we started!)

For those who are so overwhelmed by the massive amount of pictures in this post and can't remember what this room started out looking like, here are some convenient before and afters:
We still have a few finishing painting the new doors.  We'll get there when we have time (so maybe in 4 or 5 years?).

Even with unpainted doors, it's still perfect to us...because it's officially home to our favorite person in the universe.

So, what's your favorite aspect of the room? (and no taking the easy route and saying "Isaiah!")  Feel free to comment below with your thoughts on this very fun matter. :)