Life in the Bubble: January 2014

Actual: Nineteen weeks (January 13th - 19th)
Corrected: Six weeks
Weight: 9 pounds 2 ounces (Hospital weigh in January 16th)

This was a big week for Evan. He went in for another balloon treatment for his trachea. It had been 4 weeks since the last dilation. Once we passed the 2 week mark, Andrew and I had a few days of "Oh no, is he breathing hard", but thankfully that worry didn't last too long. The morning of the procedure we were confident that Evan's airway was in no way blocked like previous times.

It seemed (to me at least) that the procedure was over just as Andrew and I were finishing our pretzel bagels (mmm, bacon + pretzel bagel = awesomeness). The doctor was very pleased to report that Evan's air way was looking great. He did end up dilating the air way since Evan was in, but the doctor stated that he only did it because Evan was there. The before picture of the air way showed the trachea with almost zero scar tissue. The doctor said that the amount that was visable, he was just being nit picky about. Since Evan was bigger during this dilation, the doctor used a chemotherapy drug that has an off label use for combating scar tissue. I guess it keeps the scar tissue from forming. Evan was too little with the other procedures.

The doctor was happy to tell us that he feels confident in just following Evan at his office going forward. If Evan were to ever have a procedure/surgery, the doctor said that he may be interested in taking a peek at the trachea. He said that he doesn't think there's any reason Evan would need another procedure at least for the next several months. You know Andrew and I are going to be all over Evan's breathing!

Evan did not need a breathing tube at all while he was recovering. By the time he got settled in the PICU and Andrew and I were able to go back to see him, he was already awake and demanding food. He was able to take a bottle a few hours after the procedure. He was definitely a bit more cranky than his previous stays. The PICU was pretty full too. When Evan was admitted, our side had about 4 beds occupied. When we were discharged the next day, all 10 beds were full and Evan's was going to be cleaned quick for a new admission. I kept my ears alerted for anyone talking about RSV or communicable diseases. That's all we needed - for the procedure to go great but Evan to come down with something.

We were discharged and sent on our way Friday morning. It is so awesome to know that we don't have any scheduled stays on the calendar. Now we just have to keep him healthy through the rest of the germy season!

Straight chillin'.

My name is Burrito. Evan Burrito.

I don't wanna be the inside spoon!!

Sure! I'll try the wave out!

Uh, the wave is kinda lame.

Holy cow! I totally just spit up all. over. myself. Didn't I?

Hospital pictures (iPhone quality):

Say what?! I'm 9 pounds!?

Good thing I stored milk in my cheeks for later. I'm starvin!

I'm a professional burrito!

Oh sleeping with a full belly of milk is the best kind of sleeping.

Actual: Twenty weeks (January 20th - 26th)
Corrected: Seven weeks
Weight: --

Well our doctor's visits just keep getting spaced out! We had a great visit with the eye doctor this week. Evan's eyes appear to be stable so we don't have to come back for a month. The doctor did point out that Evan's right iris (the black part) is not perfectly oval. This may have been from the laser surgery. It will not impact his vision or anything. Just a cool feature Evan gets to brag about. haha

Evan impressed both the physical therapist and occupational therapist by turning his head during tummy time. He was a champ during his massage (who wouldn't be!?) and his stretches for OT. I've learned how to massage his legs, stomach and chest. The stomach massage strokes will be great for when Evan is all backed up. He is usually pretty tolerant.

Evan also successfully found his right fist this week! In the beginning of the day, he was just sucking (slurping really) on the side of his hand. By the end of the day, he had figured out how to put his thumb in his mouth. I woke up one morning to him sloppily slurping away. Although I don't like it when he cries, it is pretty cute to see him stick his thumb in his mouth to calm down.

So do I demand milk just as Daddy and Momma sit down to eat,
or as they're a few bites in?

Eh, maybe I can entertain myself for a little bit.

Something's different...

OMG! I love overalls!

Yes, I am a hug magnet. And a snuggle magnet.

I like cooking with Momma.

Heh. I know I'm going for a car ride! This is going to be great!

Seriously? Doing dishes has to be the most boring thing ever.

Yum! I found my thumb!!

Forget this! I say instead of planning out meals, we just eat the same thing every day. Milk.

But why do I have to face away from the TV when you're playing Grand Theft Auto?

Look at my cheeks! Do you think they're big enough?

Okay. Weekend game plan: Drink, pass out, poop pants.
Well, maybe you don't want to do that last one Daddy.
I have a feeling Momma might not be too happy about that.

Actual: Seventeen weeks (December 30th - January 5th)
Corrected: Four weeks
Weight: -- (VNA no longer visiting)

Well we received great news from the eye doctor in Rochester. When we went in for our visit on Monday (after a fun random run in with a friend!), the doctor said that Evan's eyes were holding steady. She told us that we could go back to seeing our regular doctor in Buffalo. We will still go in for weekly visits, but at least the right eye doesn't seem to be getting any worse.

We learned this week that our new insurance doesn't cover the Visiting Nurse (VNA) visits. The VNA was just checking Evan's weight and pulse ox each week. Since he's been gaining steadily, hopefully when we go to the Pediatrician, it's okay if the VNA stops coming. It is fun to have a weekly weight though. (Although I can always tell at 4 am that he's packing on the pounds!)

Evan's OT and PT went well this week. I'm learning infant massage from OT. We worked on legs today. Each week we'll add in another section. The therapist said that he did really well. I'm so proud of Evan. :)

Unfortunately, Evan really only sleeps for extended period of times when he's nestled in on Andrew or my chest. This makes night time a little difficult. During the day I have to wake him up to feed him at about 4 hours. At night we're lucky if he can hold out for 2 hours. Pre Evan I required a lot of sleep... I think I was banking it for when Evan was home!

New Year's Eve was pretty uneventful. I think Evan may have been the only one awake for the ball drop. I was excited to have a glass of champagne. I pumped so I could enjoy myself... well I think I got a toasting sip down. Guess I'm not ready to party yet. Haha

Evan as a conductor: http://vimeo.com/83991115

Nooooo! Don't drink that!!!!

Okay, be prepared to be owned in Halo! (Uh... what button do I push?)

Mooooooooom! Daddy's not letting me win!

Maybe if I do something cute like suck my thumb, I won't have to turn my head!

Family selfie. :)

Bath time during the winter leaves me super chilly.

Whoa, dude. This chair vibrates. It is awesome.
(At least for the next 5 minutes. Then I'm going to HATE IT!)

But you said I could be a gangsta today!
Stop telling me I'm cute! Gangstas aren't cute!

Holy cow. Pockets are awesome.

Maybe I don't want to be a gangsta. I think I'd rather be a snuggle bean.

Actual: Eighteen weeks (January 6th - January 12th)
Corrected: Five weeks
Weight: 8 pounds 4 ounces (January 6th)

Poor Evan had to get his 4 month shots this week. He was so smiley and happy for the entire doctor's visit. He was cooing with the nurse right up until she poked the first of 3 shots in his leg. I think he stopped breathing. His face turned bright red and he let out this scream that I had never heard before. It was heart wrenching. Thankfully the shots were over quickly and I was able to calm him down.

We were back at our regular eye doctor as well. He gave us more good news - we can start spacing out our visits to every 2 weeks! This is a good sign that the right eye continues to do whatever it is that it needs to do. Andrew and I were so relieved after the appointment.

Andrew had a birthday on Friday. Evan helped celebrate by keeping him up late.

Within the last week or so, Evan has started cooing and making fun new noises. It's so adorable. He does pretty well with tummy time. Right now, he will sometimes flop his head from the right to the left. He has yet to move his head from left to right. His right side is his dominant side and where he tends to rest his head.