7 months!

Isaiah's 7 months old today! Holy cow!

In all honesty, we've only had a few moments of happy Isaiah today (thankfully I had the camera ready, huh?).  He had his flu booster this morning, developed a low grade fever, and has had the case of the grumps.  We're trying to decide if it's more than a reaction to the booster.  He's only sporadically moving his left limbs, so we're concerned it's a possible break.  He did get the shot in the thigh though, and they say the area can be sore for a day or so, so he may just be feeling those effects.  He's been crying out in his sleep though. :( We're giving pain meds as a precaution as we don't want Isaiah in pain. 

We've savored those few moments of smiles today, and hope they come back after a good night's sleep.

He's made some great strides recently in his life.  He's riding exclusively in his car seat, he's up to an hour and a half of weaning off of his Trilogy already, he's eating an average of 5 ounces a bottle now.  The kid has come a LONG way! Whatever the issue is, let's pray it heals quickly and he's back to his smiley self soon.

And now I know not to schedule shots on Isaiah's birth months.  They should be days to celebrate, not get poked.  :-P

<3

Isaiah's Port

Can you believe it's been almost 2 weeks already since Isaiah had his port surgery?  We've had a number of questions about the port, from parents of OIers who are considering a port to friends who would like to know more about it, so I thought a dedicated post was in order.

Can you see that little raised bump on Isaiah's upper chest in the picture above?  It's just below his collar bone, which is below Isaiah's chin is in the picture; that's Isaiah's port.  I heard some professionals call it a Portacath.  It's completely under Isaiah's skin.  It's a circle, with a silicone top and has a tube that got surgically inserted into one of Isaiah's veins.  When the port is being accessed, they put the needle right into the silicone top.  It can be accessed hundreds of times before it'll wear out, which is great because we plan to access it many times.  (We're hoping Isaiah's lasts until he's at least 5 years old.)  

The picture above shows it with tape on top; it's accessed here.  Almost like an IV, but not nearly as scary for Isaiah.  Since Isaiah's bones are so fragile, getting an IV in can be difficult.  We don't allow a tourniquet to be used as that may break the bone in the arm it's squeezing, so an IV team had to be called in the past and it usually involved flashlights and some luck.  Last time Isaiah got an IV it took 3 sticks before it was in.  It was awful.

We didn't want Isaiah to associate PAM with such pain and fear.  We didn't want him dreading getting his treatments.  The port, although he still feels the stick of the needle through his skin, makes it much easier for him.  

Besides using the port to get his Pam, nurses can also use it to do blood draws.  They always test Isaiah's blood levels for all different tests.  Isaiah didn't even blink when they pulled blood at this last Pam treatment.  Thank goodness for no more heel sticks and pain!

We love that the port is completely under Isaiah's skin.  Another option that we had for Isaiah was to get a Broviac.  Surgery to put in a Broviac is a lot less invasive, and is put into a central vein in the neck, chest, or groin area.  

Here's an image of drawing that I found through a google search from another blog:

Source: http://kenzibmt.blogspot.com/2011/02/broviac-is-out.html 

There are benefits to a Broviac, but in our case, all we saw were the negatives.  You can't submerge it under water so that means no baths and no water therapy (which is in our near future since he's weaning off of the c-pap, darn it, Isaiah has waited long enough!).

We've also heard horror stories about Broviacs.  Kids pull them out.  They can get infected.  Infections can definitely happen with ports as well, but we've heard of more first hand experience with Broviacs getting infections than ports.  The worst we heard about a port thus far was that one moved and had to be surgically fixed back into place.    

Isaiah's port does have to be flushed with heparin every 4 weeks, but that's the only maintenance we need to worry about.  Day Medicine at DuPont can take care of that every other month when Isaiah goes in for Pam, so now we just need to figure out the plan for that.  I'm hoping one of our night nurses can do it; we have the clinical nurse from that nursing service stopping in to see the port tomorrow and let us know if that can be done by them.  We shall see!

So all in all, we're extremely happy we decided on the port.  It should make the next few years of Pam a lot less scary for Isaiah. 

To go off topic, I wanted to update on Isaiah's weaning off of his c-pap.  He's doing extremely well.  We are increasing the amount of time he is off of the Trilogy by 15 minutes every 2 days.  He's already up to an hour and a half twice a day.  His oxygen sits at 97-100% the entire time!  He's doing great.  He'll likely be completely off if for the entire day time by the end of this week.  

Those socks are crazy huge still, but who can resist the frogs?

When he's on his c-pap, he used to have oxygen bleeding into it.  Well, since his surgery, Isaiah's been on room air only- no oxygen needed!  The house is so quiet without the concentrator pumping out oxygen into his c-pap, but he doesn't need it, so why not save some money on our electric bill, right?  

We're extremely proud of Isaiah.  He's doing a great job showing us how strong he is.  He's showing us how ready he is to be tube-free.  

<3

Pam!

I really wanted to update the blog every day this week...but 4am wake ups and 1.5 hr long drives back and forth to DuPont left us super pooped!

Haha. Mom said "pooped".

We traveled to DuPont Tuesday through Thursday for Isaiah to get his pamidronate (pam) treatment.  Pamidronate is helpful to many kids with severe forms of OI; it strengthens the bones, helps them grow, and really helps relieve the chronic bone pain that people with OI feel. Isaiah currently gets his Pam every 8 weeks (he'll go longer stretches as he gets older).  He used to get it through IVs, but since he got his surgery last week, he now has a port, so no more scary IVs for our cute guy!

Day 1 went well.  It started later than anticipated due to some routine questions and a hold up in pharmacy, but Pam was flowing by 9am.  You can see Isaiah's port is accessed under his shirt in the picture below.

This kid loves his Pam; it always makes him fall asleep.  He actually didn't sleep as much as we expected him to the first day, he was very interested by his surroundings, so this moment of quiet was quite the gift. ;)

Day 2 went extremely well.  He was started early and since his port was already accessed from the day before, it was quick to get his Pam flowing.  You can get a better picture of his port below.  (I may or may not share a picture of the port now that it's not accessed, for now you can see it accessed- meaning there's a needle in it, Pam is flowing, and it's taped to keep germs out.)

Isaiah spent the majority of day 2 in my arms.  He had a number of bouts with gas, so cuddling was the best medicine for that (well cuddling, and gas drops).

We also got to spend some of day 2 seeing our buddy, Super Silas, he has type VIII OI. TypeVIII shows a lot of symptoms of type 3, except kids with type 8 don't have the blue sclera.

His mom has been a big hero to us; a lot of the clothes you see Isaiah wearing comes from her and Silas.  She also introduced me to a number of supports for Isaiah.  She actually gave us one of Silas' Snuggin Go pillows...we put it in Isaiah's car seat as soon as we got home on Wednesday, then Isaiah went in.  He LOVED it.  Look how straight he's sitting!

Handsome baby.

The car bed's time is coming to an end....

No, seriously.  He's honestly getting too big for the car bed and we needed to just man up and switch him to his seat.  The Snuggin Go was the last push we needed....

Day 3 brought bravery for Dave and I-

BOOM!

Isaiah went around DuPont in his car seat and stroller!

He was SO comfy! And we were ready to begin our last day of the Pam cycle...

Happy baby alert!

Along with getting to hang out with Silas, Isaiah also had an extremely special treat.  But first, an OI lesson...let's see if I can get this right...

OI is a mutation of a chromosome.  The mutation can happen on different chromosomes, truly making each person with OI comparable to a "snowflake" (each one unique).  Not everyone with type III looks like Isaiah.  Not every one has bowed bones like him, sclera like him, a need for the C-Pap like him....each is different.

When Isaiah was born, we had some of his blood sent to a lab to confirm the OI.  OI type III was confirmed.  At the time, there were only 2 others in the database with Isaiah's exact mutation- 1 little girl in Great Britain and 1 fetus with no other known information (we presume this snowflake passed or was terminated)....There were only 2 others, now there's 3.  

I'd like to introduce you to Isaiah's OI brother and future BFF, Gavin. 

Gavin is 3 months old.  He has the exact same mutation as Isaiah.  This is such an amazing thing to Gavin's parents and Dave and I.  Now there are a total of 4 known people with this mutation- 2 of which live in the same state and go to the same hospital for care.  

Gavin's a really strong little guy.  He's also on a Trilogy machine (and currently weaning) so you'll notice that they even have matching canulas. 

This picture is dying for a funny caption. lol.  

Luckily, Isaiah is on the same Pam schedule as Gavin, we're hoping to keep it that way so that they can grow together.  How amazing is this?  Two people with the same mutation, only 3.5 months apart in age, living so close to one another.  They are two lucky boys, for sure.

We loved our experience in Day Med this cycle.  They were great in letting us hang with Gavin and his family, and even letting us put the boys in the same bed on the last day for the photo shoot above. :)

After Pam was all over for this cycle, we said goodbye to our friends and headed up to the surgical area for a post-surgery appointment.  Everything looks great and Isaiah is progressing just as he should.

I'm hoping to write up a post soon about Isaiah's port and its benefits.  I'm also hoping to finally share some exciting news about Wishbone Day 2014. :)

Don't forget to move your clocks forward tonight!  One less hour of sleep? Worth it for the extra daylight, don't you think?

<3

Mum Mums, Peas, and Weaning, Oh My!

Wow, we had a really great weekend (and sure didn't expect to).  Isaiah had some rough moments, but who wouldn't just days after surgery?  And seriously, they were few and far between.

He was actually so chipper on Saturday that we decided to introduce Isaiah to Baby Mum Mums.  They are little rice biscuits that dissolve easily in a baby's mouth.

The faces he made while discovering his first Mum Mum were entertaining to say the least...

He only got through about half of one, and he gagged some when it was on his tongue (the tech that performed Isaiah's swallow study said that's common when introducing new textures/foods), but he really seemed to enjoy it.

We were very excited about it, and although we should have waited a day or so, we decided to instead jump on letting Isaiah try some peas.

He was very intrigued at first....

But it was obviously that it was a no-go...

Mom, what the heck are you guys doing to me?

Now that he's had no reactions that would make us think he's allergic, it's two days later (don't let the same bib fool you) so I jumped on introducing sweet potatoes to Isaiah.

As you can see, he was both shocked and in love with sweet potatoes.

He made a big mess of things, but that's normal for any kid, but especially one who's only used to eating through a tube and by a bottle.  Hopefully in the next few weeks, with more practice, he'll get the swallowing part of eating veggies down.  An interesting experiment that I tried was to put some sweet potato on Isaiah's pacifier. When doing that, he could swallow the potato with minimal gagging.  (That's when he smiled!)  I know that's it's not a recommended practice, but it makes me want to give peas a second chance, maybe it was the spoon throwing him off (so once he masters that tool, he will be seeing peas again!).  I don't know, Dave and I are new to this, so we're learning with Isaiah.   #newparentproblems

Besides the exciting world of solid foods, we've also started weaning Isaiah off of his C-PAP.  

We were going to wait until after Pam this week, but he was doing so good (and he conveniently pulled all the tape off of his face) that we decided that there was no better time than the present.

Isaiah had a great 15 minutes off of his C-PAP.  His oxygen saturation level stayed between 98 and 100% which is fantastic!  His pulmonologist had said if Isaiah goes below 95% that we'd have to go at a slower pace so we're loving that he didn't touch that during his first official time off his machine.

We also noticed that Isaiah's heart rate stayed completely normal for his time at rest.  We're watching that like hawks because we know it's common for it to rise a bit when overcompensating to keep the O2 level up.  We don't want him working harder.  We want this to be easy for him.

We've done this first 15 minute ween 4 times already, 1 more time today and then we're on to 30 minute blocks of time off of the C-PAP!

Isaiah says Woo Hoo! Tube/Tape-Free living is in my future!

I just love that little nose!  We'll keep you updated on his continued progress with foods and saying goodbye to the C-PAP.  We'll also be checking in this week from DuPont.  Isaiah will be putting his port to good use and getting his next dose of Pam starting tomorrow.  He also has a follow up appointment with the surgery team to check on how things are healing.  

<3

Just Let Me Feed Him!

Phew. Isaiah's temperature was back to normal at about 5am.  He was starting to breathe a tad slower.  A shift change brought a new resident doctor at 7am.  With a new resident, gave me another opportunity to beg "just let me feed him."

And she did.

We agreed to give him half of what he normally takes so I prepped a bottle with 2 oz.  

He downed it.  

He relaxed.

His heart rate, which was jumping all over the place all night, stabilized.

His respiratory rate, which was reading too high to the staff all night, stabilized.

He fell asleep in my arms.

Although he was still in some pain, he was back to normal.

Isaiah's pulmonologist visited and was thrilled with what he saw.  Rounds occurred shortly after and the staff talked about how well Isaiah is looking.  They spoke about moving him out of the PICU, out onto the floor, and then discharging him today or tomorrow.  I asked that if the surgeons and Isaiah's other doctors would approve of discharging today, could we just discharge from the PICU.  They took a minute and said YES, as long as the doctors approved.

Most of them did so over the phone.  Dr. Bober came down to check on Isaiah and he was good with Isaiah going too.  Isaiah's nurse unhooked him from his IV, took the access out of his port, and got him ready for discharge....

and we packed him up!

We were on the road by 3.  He quickly fell asleep with the lowest heart rate he'd had since we got to DuPont on Thursday.

And thank goodness he fell into such a deep sleep because we got stuck in some serious traffic 10 minutes from our house.  This added an HOUR to our drive.  Cool.

Once we were home and Isaiah was in the house, he was thrilled.  I carried him into his room with me to grab a diaper.  Sweetest moment ever....he looked around his room, sighed, and just melted onto my shoulder.  It's like he was saying "Oh thank goodness, I'm HOME."

No kidding, kiddo, thank goodness.

He's on some tylenol for pain and he's already back to smiling so obviously it's working.  We're predicting a good night's sleep and hoping to wake up to a pretty happy baby in the morning.

Seriously, I have to get this kid a cape, he's the definition of Super Baby.

Thank you so much for all the prayers, thoughts, messages, and love.  You are a big reason we're as strong as we are.

More Waiting

This time, we're waiting to get back to "our normal".  Isaiah's is having a rough go of it post-surgery.  He's been breathing much faster than he has in months, his heart rate is higher, and he has a fever that was 103.5 at its highest point. 

Here he is when we first saw him post-op in the PICU.  My poor exhausted, confused baby.

I'm dying for morning to get here so Dr. Bober can come see him and calm the staff of the PICU down.  The reaction he is having is normal for him.  He just needs time.

And food, darn it.  He's so hungry...but they won't let me feed him because his respiratory rate is so crazy high.

I'm panicking.  I'm so scared he's going backwards.  I'm so scared they are going to suggest/put an ng tube down him so he can eat and I really don't want to do that.  I want him to eat like he's been doing for 2 months.  Ugh.

Dave and I have been able to sleep here and there.  One positive of being in the PICU is that Isaiah has his own room which makes things a lot easier on us in terms of resting.  It's 4:30am now, and I'm awake because Isaiah is awake, and I want him to know I'm here with him.  We brought his projector from home, which has been a great comfort to him.  He stares at the projection on the wall and you can tell he sees something familiar.

His temperature has dropped a degree since its highest point at 10pm.  Hopefully his temperature keeps dropping.   Hopefully he continues to get back to his normal and they allow me to feed my baby soon.  Hopefully time flies this morning and he can see his doctors and they can develop a plan from this point.  Are we going home today? Tomorrow? After Pam?

I'm so grateful we are in a hospital with many staff members that understand OI and will help me teach the few that don't.  Right now I'm pretty sure I'm being seen as a crazy mom, but once they hear from his doctors....I know it's going to get better.  It's why we bring him here. It's why he's safe here.

Come on, 8am...

Waiting and Praying

Isaiah woke up this morning all kinds of cheery.  

Look at that smile! We were scheduled to arrive at DuPont at 11:30 so he was able to do his normal morning routine (minus the bottles).  

At 9:30, we were on our way.

Funny, when you spend 2 months in the NICU, you know exactly where to go...we checked in and waited by the windows to sign papers so that we could wait in the pre-op waiting room.

Isaiah took no notice that we were in the hospital.  I loathe the day he knows what's going on in regards to all of this.

Before we knew it, it was time to go back to pre-op.  You aren't supposed to take pictures.....but I heard other parents doing it so I just focused the camera on Isaiah (Dave's nose too).

You didn't see it there until I pointed it out, did you?

Anyways, we waited and waited and waited....

and found ways to entertain ourselves.

Once the doctors and the anesthesiologist came to visit, we moved Isaiah to the bed and got him ready.

We prepped everyone reminding them of how fragile he is, we showed them how you can put rolls under his mattress to change his position, and we begged them to be careful.

The doctors prepped us, had us sign consent forms, reminded us of what could go wrong, and told us of alternatives if certain things didn't work out.

Isaiah is getting a port put in.  His doctor didn't seem 100% confident that he'd have enough room by his neck to get in (I don't quite know all the terminology....I'd probably pass out if I knew what they were doing), and mentioned the width of the tubes may not be wide enough in the port, and that a Broviac might be better.

I should explain a bit...while Dave and I wait and wait and wait....Isaiah is getting a port today to make his Pam treatments easier.  He normally gets an IV, which last time took 3 sticks.  It's difficult to get an IV in without a tourniquet.   It's traumatizing.  The port, which will be placed in his upper chest, will make it less traumatic.  It's under the skin so he can go about his daily business.

A broviac is an access that hangs outside of the body.  It requires a lot of maintenance and limits certain things.  For example, it can't go under water.

We are just getting to weening Isaiah off of the C-Pap. If he is off of his machine, he'll get cleared for water therapy.  If he has a broviac? Still no water therapy.

NO

STINKING

WAY.

Yes, he's grown stronger than anyone predicted...but imagine how strong he'd be if he would have been getting water therapy once or so a week?  Not going to happen.  Port or nothing.

Anyway, putting a broviac in is less invasive and a less risky surgery.  The doctor may, and likely will, break a bone putting the port in.

Its worth the risk.  Bones heal.

When he heard "port or nothing" come out of my mouth, he decided it'd be good to call Isaiah's favorite doctor.  I assume he thought that he'd have an ally.

Nope!  He was on our team.  The comical moment of the day is when we heard the conversation went like this...

"If we do this, it could break his collar bone."
"If you get it in, I can treat that broken bone.  With that port."

HA

Placing the port should take about an hour and a half.  After that, he is going to get his ears cleaned out, and if he has fluid, he'll have tubes put in.  After that, he'll have an ABR done, which is a 2 hour test to check his hearing through brain activity.

So here we are, waiting waiting waiting.  I can't stop staring at this last picture that I snapped of Isaiah, sleeping peacefully before I gave him his kiss before surgery.  

We'll update as soon as we hear anything....but know they are talking that recovery will likely be in the PICU as a precaution.  Ugh. Hopefully Isaiah will surprise everyone and he'll get to stay on the floor with all the other kiddos recovering from surgery.

Prayers, please. <3