Wednesday, January 29, 2014

Musician in the Making

Evenings in this house are often filled with music.  Dave brought his guitar upstairs to the living room a few weeks ago and when Isaiah starts to get fussy before bedtime, he pulls it out and parks himself next to Isaiah.

Recently Isaiah has begun to get in on the guitar-playing action.

Is this not one of the most adorable sights ever?

I don't know what he likes more: the music coming out of the guitar or how Dave makes it come out of the guitar.

I feel like he's thinking "Hey Dad, let me play!"

The guitar is a great way for Isaiah to veg with his daddy and relax before bed.

This morning he woke fresh, happy, and pulling off his cannula. LOL  After a nice bath, we retaped his cannula back on, but not before snapping a picture of our handsome boy tape/tube-free.

So stinking cute!

Monday, January 27, 2014

Post of Randomness

Does anyone else notice how light Isaiah's hair is getting again? Who's entertained by his comb over? Anyone?  

No? ok, then here's the mohawk for you....

I really have no news to share, just cute photos of Isaiah loving his toys.  No word on surgery, but I called and talked to half of the hospital trying to get to the specific secretary that I specifically specified. I finally got her voicemail. At least I think it was her....

I plan to give them until Wednesday and then I'll call everyone again.  Or ask Dr. B. who he suggests I speak to (cough cough, maybe he can help me get the ball rolling...)

Or the wheels spinning. whatever.  If we can't get that wheel spinning, at least Isaiah can get his toy wheel going.  (What a lame transition to a new topic...Anyway, that toy is stinking awesome.  It's by Sassy and I highly recommend it. Plus, I saw it at Kmart and it's only $6!)

If we have any more news, we'll be sure to update. (We're pretty boring right now.)  I should probably share a post about Isaiah's eating as we've been facing some challenges, but I want to have things under control for a few more days before sharing.  No worries though, all is good now. :)

Friday, January 24, 2014

Pregnancy Love

This morning I got to thinking about how I never put up a post about my pregnancy (I blame all my pregnant friends haha).  I was meaning to post back in August/September, but with all the NICU business and new parent craziness, it went to the back burner.

5 months later, with a napping baby and quiet house, and 100 other things I should be doing, here we are.  A post about me. (Don't worry, there's some pics from this morning at the bottom of this post.)

Besides the obvious "life or death" worries, I kind of loved being pregnant.

Why yes, I was one of those weirdos that took a picture in the mirror every week. (and.I.don'

I had a few bouts of tummy troubles in the beginning, but they resulted in my eating better and losing weight (who loses weight while pregnant? This girl!)

Once I was over that, I loved not caring about how much I ate since I had some extra poundage to make up! ha  

Cheesey pretzels. I could not get enough cheesey pretzels.

I only gained a total of 16 pounds (don't hate.)  14 of which I lost within the first week of Isaiah's life. (ok, you can hate a little.)

I loved seeing Isaiah in the ultrasounds and hearing his heartbeat.  
ahh, toes!

I loved feeling Isaiah move around.  It wasn't as often as other babies move (which is common, according to a number of other OI mommas who have other kids), but it showed he was alive.  There were times I struggled and worried about his movements, but I knew that when he was going, he was feeling so good at that moment.  It was the greatest when he moved strong enough that his daddy could feel him.

His hiccups made me giggle.  It was really fun watching him hiccup during an ultrasound once!

And then there was all the cuddling with Carl.  Saying he loved my belly would be the understatement of my pregnancy.

There are so many thoughts that I know I wanted to share in this post, but that's what happens when it comes 5 months later.  Boo on me.

So am I the only weirdo who loved being pregnant? Yes? well, that's ok because.....


Get it? Mom made a funny.

So, for your daily dose of Isaiah (ahem, Casey), I give you Isaiah napping on his side.
He wouldn't go to sleep without his Mickey.
BFFs holding hands. (Ah melts my heart)

We still haven't heard from DuPont about rescheduling Isaiah's surgery.  I'm giving them until Monday and then I plan to call and get the ball rolling if it is't already.  Happy Friday, everyone!

Wednesday, January 22, 2014

Surgery Postponed

So, with all the snow, and areas calling for snow emergencies, we thought it best to reschedule Isaiah's surgery...but not until after Dave shoveled our entire driveway at 5:30 in the morning. Whomp whomp.

I would love to take Isaiah outside for another snowy picture with him, but according to our cold water pipe in the kitchen, it's just too cold (Yup, it froze again.  Heating pad and space heaters to the rescue!). Instead, I gave Isaiah a nice bath, bottle, and snuggle....
Don't mind my burp cloth bib. LOL  It's the only way I seem to avoid drool all over my clothes.

Yesterday, Isaiah got another real bath. We had found the seat that goes with this tub out in the room off the garage (where we've been storing some of the baby stuff for the winter).  It was a big hit.  The bath was much less scary to him.

LOL! I love the look on his face.  He looks all "Daaaaaad, pffffffffffft, water everywhere".
He really did enjoy this bath.  He ended up completely stretching out.  We'll try again in the future, but we have to be quicker next time.  Did you notice the cpap is off of him? It was ok for a few minutes, but since Isaiah relaxed, his oxygen dipped when he was toasty warm in his towel drying off, so we had to move quickly to get things taped back on.  We don't know how low he dipped because his sensor wasn't attached (due to the bath), but we know he was at 97% when we hooked him back on.  With all of this, we realized that maybe Isaiah isn't quite ready to be off of his machines.  Sigh.

No worries, though.  Isaiah was a-ok very quickly and I'll be letting his doctors know about it when I speak with them.  I am pretty sure it was scarier to Dave and I than it was to him.  (Ignore the fact that his fly is basically down. LOL I did a quick diaper check before snapping this picture.) 

In other news, Isaiah is getting really good with sitting midline and bringing his hands together. (This picture and the one above were both after his bath, so as you can see he really is ok! :)
Ok and adorable! :)

Monday, January 20, 2014

Surgery is Coming!

Happy Martin Luther King Jr. Day everyone! :)  

We've had a few pretty uneventful days here in the Martin house.  Isaiah spent a good portion of  Friday recovering (which means he slept about 18 hours when all was said and done.  He so takes after his mommy!) and cuddling with momma.

Yup, tummy time is going well.  He finally finds cuddling with me to be a great place to completely relax and fall asleep. :)  He's also been working those neck muscles.  

The above happened on Saturday and I haven't been able to go a nap time without hitting play on this video.  Holy cow, Isaiah is developing head control! Already!  This is something we didn't expect for months (at least a year if I'm being honest).

Besides that awesomeness, Isaiah has been spending time in his Graco car seat/stroller.  He still squirms and hates the buckles, but he loves rolling around the house in his stroller so that helps him deal with the straps.  We're still slowly working on tightening those straps.  It's just so scary, ya know, how tight you have to make them.  It's just so tight on his fragile body!  We know they need to be in case we'd have an accident (or even just if we stopped quickly while driving), but still, super nerve-wracking.

We're getting there. :) Isaiah is scheduled for surgery this week. (Talk about nerve-wracking)  By the end of this week, Isaiah will have his ears cleaned out (although, if you watched the video above, it's pretty clear that he can hear) and a port put in.  We'll definitely be updating on the blog from the hospital, so stay tuned! :)

Until then, I leave you with this adorable smile from this morning. :)

Thursday, January 16, 2014

Rough Night

So, we had a rough one last evening/night.  Now I am confident to say that it was just a night that can occur to any ole family with a baby but eww wee did my brain blame OI quickly.

Isaiah was wearing the outfit below.  

Cute, right?  After his nap we put him in his rocker as he was a bit fussy.  When I gave him his Prevacid (which he loves since it's fruit flavored), he spit some out (first sign his belly was hurting...that we missed) and it got on his clothes.  I needed to get the clothes off of him so it didn't stain (yup, my obsessive side comes out when it comes to Isaiah's cleanliness sometimes) and as I was about to unsnap his sleeve he went ballistic.

And so began hours of what I lovingly call "devil baby".  He was red/purple, screaming, crying....I immediately thought "oh no, I broke something!"  but then we noticed both of his legs were pulled up (that's a sign for him that his belly hurts).

We had friends over, and we felt terrible because Dave and I spent a majority of the night taking shifts rocking Isaiah in his room.  After attempts with gas medicine, gripe water, a bottle, tylenol.....either it began to pass or something worked (don't ask me what worked because I have no clue!) and he calmed down.  The waves came and went. His heart rate never went out of the ordinary, though.  He was moving everything.  We continued to think that it was his belly, but I of course kept up with the "what ifs".  When I went to burp him, he would freak out and devil baby would appear again so I was extremely concerned that maybe he did have a break and maybe it was something in his torso, a rib or a fracture in his spine...but his breathing wasn't any more labored or rapid.  His nurse didn't hear anything when she listened to his lungs either (sometimes you can hear things rattling when a rib is broken).

I remembered then that I had been having trouble getting him to burp in the morning.  Maybe it was really bad gas pains?

It continued through most of the night. He tried sleeping.  He'd wake up screaming out of a deep sleep; he'd startle and freak out. He hardly ate a bite when we attempted the bottle.  His nurse came up with a few interesting thoughts.  1) Using a washcloth that was soaked in warm water, placing it in a ziploc baggy, and placing that on his belly.  It gave him instant relief.  2) She remembered I mentioned how I was feeling horrible and having stomach problems myself on Tuesday.  Maybe I had a bug and gave it to Isaiah?

It's definitely possible.  It lasted about 10 hours for me and honestly, that's about how long it lasted for Isaiah.  After his bottle at 2am, I was able to burp him and he was much easier to soothe and go back to sleep.

He woke up this morning like his normal self.  He seems to have his appetite back too as he took 4.5 ounces!  After his bath at 8:30, he passed out asleep and has been sleeping for the last hour.

Hopefully we made it through that and it was just a quick stomach issue.  No one likes to see their baby feeling miserable...and it's awful when you don't know what to do to help make it better.

I'm hoping he gets some serious rest this morning to make up for the lack of sleep last night...and maybe I can catch a wink or two as well. ;-)

I hope you are staying healthy! I think it's time for spring, don't you?

Wednesday, January 15, 2014

Hanging Out

We're still trucking along with the bottle!

Isaiah did drop an ounce between last Thursday (the day before removing the tube) and Monday so I am back to weighing him every other day to keep tabs on that.  At first his doctors wanted us to start fortifying Isaiah's formula since he is so close to taking the amount that he needs (he had been taking 20 oz all weekend- 22 is the goal).  I am holding off on fortifying his food as I weighed him this morning and he is back to 10lbs 11.5 oz.  Plus he's eaten more the past 2 days; 23 ounces on Monday (porky pig!) and 21 yesterday.  He's getting there.  He can do it on his own; he just needs some time. :)

Isaiah is finally big enough for his Hugga-bebe!
We love that he can hang out in it because it hopefully means others will be able to hold him up in the near future!
He has to get used to it before that happens...but we're using it for a few minutes everyday so that he's as comfy in it as he is in his swing. :)

Yesterday I wasn't feeling so hot so we watched a few cartoons in my and Dave's room while Dave was at work.
Do you see the joy in Carl's face?  The misery in mine (I was exhausted)? And yes, Isaiah is in the background completely sucked in to the Disney Channel (  
He sure liked hanging out and cuddling (and so did I).  Once Isaiah fell asleep, I moved him to his room and I napped as well. (I felt much better after that! Sometimes I miss the sleep I used to get... haha)
I just had to share the picture above.  Carl is also getting tummy time on mommy, so it seems.  I find this pretty hilarious...but I need to get out more. lol

The updates may slow down a bit for a week or so as we're just hanging out. You know I'll pop in with an adorable picture or 10 though. ;-)  I have added a new tab to the top called "Adaptations".  It's a page I added to share how we adjust things to work for Isaiah.  Be sure to check it out; I'm sure we'll constantly be adding things! :)

Monday, January 13, 2014

They See Us Strollin' ...

They hatin'...did I put that song in anyone else's head? No?

So guess what Isaiah and I did by ourselves?!

It was such a nice day today that I could not resist taking Isaiah out for a walk. All alone! Just the two of us!

and he survived!! :-P

He loved strolling up and down our street. He would stare at the trees; he even got to see a plane pass over!

He's still rocking his bottle and NG-tube free!
Isaiah + his bottle = BFFs <3

He had been averaging about 20 ounces the past 3, though, his 4th day without the tube, he upped his intake to 23 oz (so far)! His goal is 22 so my little porky poo is a hungry one.

He's been sleeping up a storm.  I'm not sure if he's in a growth spurt or if it's from all the extra work eating, but if I wasn't such a spaz checking on him, I could have enjoyed an entire night of uninterrupted sleep last night because he slept through the night!  He had been doing that when he was getting the continuous feed, but I wasn't sure we'd continue to be so lucky once he had to work for his food.  Hooray to my sleepy kiddo!

When he's awake, he's been even happier than he normally is.  I think all the burping has been helping with all the gas problems he used to have...that or maybe the switch to Gentlease Formula...either way, I'll take it. :)

He loves cuddling with his daddy...and he is very much a morning person!

See that smile? That's what I got greeted by after each and every slumber today.  And do you see those legs? They have been kicking like crazy since Pam!  Love it!

I hope everyone enjoyed the break from the ridiculously chilly winter we've been having.  I think I was spoiled by the past 2 years, with random weeks in January full of 50 and 60 degree temps.  I wouldn't mind a whole week of that though, I'd be a pro walking Isaiah by myself in no time!

Saturday, January 11, 2014

5 Months + Eating Update

First of all, I seriously can't believe Isaiah is FIVE MONTHS OLD!

Apparently neither can he!
Say what now?

Isaiah has grown to be super interested in his toys.  He grabs them, stares at them, and shakes them around if they are light enough.
I made a tray for his chairs using a cardboard box, as suggested by both an experienced OI momma and the PT at DuPont.  It's great because he can still sit reclined (he can't sit up straight just yet; that could cause compression he doesn't have head control yet).  It's also giving him independence; he can play without me right there holding his toys.

When it comes to the trial-run off of the NG tube, I believe things are going great!  Isaiah took a little over 20 ounces yesterday.  

He only woke up once for a bottle in the middle of the night (at 1:30) so we even got more sleep than expected!  It's not even 5:00 and he's already taken 13 oz today!  Go baby go!

After his afternoon meal, he even got in a little tummy time today.
Baseball butt!

I'll continue to update on Isaiah's bottle drinking progress.  I'm feeling good that we just may not be seeing that NG-tube again. :)

Except from pics from the past, like the one below...

Can someone tell me how I forgot to post this picture on New Years Day?
Happy Belated New Years! Hooray 2014!

Friday, January 10, 2014

Day 3 of Pam + Goodbye NG Tube

Day 3 of Pam went well.  Before our time in Day Med on Wednesday, we had a pre-op appointment.  Isaiah was weighed (10 lbs 11oz) and measured (21 inches!).  We spoke with an anesthesiologist, a nurse practitioner, and a rep from respiratory.  They are working to get a number of people's schedules to coordinate for Isaiah's surgery to a) put in a port so they no longer need to try for an IV for his Pam infusions, b) clean his ears out c) do another hearing test while sedated.  It'll definitely be an overnight stay since it'll be Isaiah's first time under anesthesia.

After our appointment, we made our way to Day Med where Isaiah passed out asleep while in the waiting area.
But before we knew it, it was time to head in.  Pam was supposed to start at 1:30, but pharmacy had some kind of issues and it didn't get started until 3:00 (which meant we closed Day Med again).
Isaiah did a lot of sleeping during this day.  We had someone from pulminology stop in.  They were supposed to do a breathing on Isaiah one day during our time in day med but apparently they didn't make time for it (I may or may not be a tad annoyed by the mix up).  I'm working right now to set up an official appointment for it for the next infusion.  We're not going to make a trip to DuPont just for that, given that it's like a 5 minutes test, especially knowing that they'll likely want Isaiah to stay on his C-Pap until flu season is over.
Anyways, once Pam was done, they had to get some blood for pre-op.  Sadly, it didn't work through the IV so they had to stick him again. :(  But he braved his way through it and was happy to have his right hand back!

Today we're starting Isaiah's trial without his NG-tube.  !!!!!

I gave Isaiah a thorough bath today while he happily hung out with zero tubes attached.

Happy Baby Alert!
I love not having any tubes, momma!
Look how handsome I am!

Once Isaiah was all dry and dressed, I popped his cannula back on since he hasn't been cleared to be rid of that tube yet.  (It sure was nice looking at his bare face though.)
I did end up taking it off for Isaiah's feeding.  His night nurse has noticed Isaiah always has a slight wheezing sound in his right upper lung when she gets to our house, but it resolves itself by morning.  She wonders if it has to do with the pressure or the C-Pap while eating or if his reflux is rearing its ugly head.  That's another email I'm sending to Isaiah's pulminologist today. haha.
Isaiah is already off to a good start this morning.  4 ounces down!
Here's hoping we can keep that NG tube outta his cute little nose!
Happy Friday all! I'll be sure to keep you updated on the trial-run. Fingers crossed!  :)