Friday, December 31, 2010

Looking back.

This year has been trying for both Mum and Dad (and Max, although he will hopefully not remember any of it).  With that in mind, moments like these make everything worth it.


He knows us now; and, he seems to really like us.

Sunday, December 19, 2010

Max trains his parents.

It's now been around 2 weeks since we brought Max home. It's been lovely.  It's also been quite a learning experience.  It's obvious to us now that new parents really have no clue what to expect. Suddenly, we don't have machines going boop and beep to tell us if anything's going on with him. We can't rely on the steady, watchful gaze of a nurse to look out for hiccups or problems arising with the little guy. We don't have the luxury of going out together for a quiet evening in a restaurant or a movie theater. Even grocery shopping has become a solo, expedited effort.  We still wouldn't trade it for the world. We're slowly learning his moods; they vary from sleepy-happy to sleepy-sad. They're not the same moods he had in the NICU or at HSC; he has definitely done a lot of developing since then. When he is awake, he tends to be curious about his surroundings and has been a pleasant companion to both Mum and Dad. Feeding him is a lengthy process, but it affords us some much missed bonding time with the little guy. Because of this, he's become a bit spoiled and fusses a bit here and there when we try to put him in his own chair or into his crib when he doesn't believe it to be nap time. Overall, however, the couple of  weeks at home have been spectacular and we look forwards to the many more weeks we get to spend with him as he grows and learns about this weird, wonderful world we've brought him into.

Monday, December 13, 2010

A week to reflect.

One week ago, we walked out of the hospital like we had done every single day for 185 days - but this time, Max came with us. It honestly felt a little like we were stealing him.

After 6 months, 26 weeks, 185 days, 3 seasons, 3 surgeries, 2 hospitals, 1924 diaper changes, 982 hand washings...after collapsed lungs, blood transfusions, jaundice, heart surgery, hernia surgery, G-tube placement surgery, lung problems, airway problems, eating problems, infections,...after ups, downs, and a whole lot of fighting...Max finally made it home.

It's all a little surreal so far.

We're all pretty busy around here, getting used to each other and a new schedule, so for now, enjoy a little visual update.




Thursday, December 9, 2010

The transition.

The transition home has been an interesting one. Mum and Dad are enjoying the heck out of having such a beautiful little guy living with them. It's nice to have him in our environment and not have ourselves feel like visitors with our own son. It's lovely just having him there so that we can hold him and show him our love at all times.  He's become a bit of a cuddle-addict in the process; he just does not like being placed in his bed too often.  He's definitely getting better at showing his displeasure with certain things, and his little voice gets bigger and bigger every day. The routine with him is starting to coagulate, and his sleep schedule should make some sort of sense soon. For now though, we'll gladly take a bit of the chaos of having a new roommate over having to slog our way across town to visit the chubster at a hospital.

Monday, December 6, 2010

Change of Venue.

Max came home today. This is the best day in a long time.
More after his parents are able to do something other than smile ear-to-ear while hanging out with their boy in their home.

Sunday, December 5, 2010

Lots of smiles

Max was quite the ham today! He enjoyed making faces with Mum and Dad and had many good little giggles with his folks and Vóvó.  He didn't need any pain killers today, and other than a bit of crankiness due to his tummy having a bit more bubbles than he'd like, he was in a great mood.  The little guy is coming along swimmingly!

Saturday, December 4, 2010

Toughness

Max was far more relaxed today than he had been the past few days since his surgery.  It's always amazing to see how quickly babies move past tiny things like surgery and pain.  Kicking his legs doesn't twinge him too much now, and his pain medication (baby strength acetaminophen) is being administered less frequently than it was yesterday.  It's humbling to see someone so tiny and otherwise helpless move past these things so gracefully.  If his dad were in the same position, there would have been far more whining and crying at this stage. Maximilian is one tough cookie.

Friday, December 3, 2010

Kicking and screaming makes for more kicking and screaming.

Today, Max was getting used to his new attachment. Although he's no longer in a lot of pain, he can still feel some strong discomfort if he moves just the wrong way. Unfortunately, kicking his legs seems to twinge him, making him a bit upset, which he usually deals with by kicking his legs.  He's learning to deal with it well, however.  Over the next few days, the discomfort in his belly will subside and become more of an annoyance than an actual pain.  For now though, Mum and Dad will do everything they can to keep him as comfortable as possible.

Thursday, December 2, 2010

A full day with the G Tube

Max is doing well with his G-tube. So far, he's healing up well and needs less help with his pain management than the medical staff was expecting. He's definitely not the most comfortable he could be, but his mood is generally pretty upbeat.  Also, he's started making sucking faces and sounds more.  The feeding tube he had at the back of his throat must have been affecting his comfort more than we thought as he finds it much easier to tolerate things in his mouth now that he doesn't feel like he's always got something in his throat.  It will still be a long journey to have him breastfeed all of his meals, but at least we know that he's more willing to do so now that he doesn't have something in his throat making him feel like he's always gagging.

Tomorrow, Mum and Dad will begin officially learning how to care for Max and his G-Tube. Once the medical staff is confident that we're both comfortable with his situation, and that our little guy needs no more medical supervision, Max will be on his way home.  This finish line is THAT much closer.

So long bare belly, we'll miss you - but good riddance NG tube! 

Beautiful, tapeless, tubeless face!

Getting some dinner with the new tube.

Max's new G-tube - still bandaged and taped from surgery.

Wednesday, December 1, 2010

Max's third time under the knife.

Today, Max had his G-Tube installed - by the same doctor who did his PDA as well as his hernia surgeries.  The surgery went well and they didn't need to intubate him this time.  He'll be a bit drugged up while he recovers over the next day or so, so there's not much to report other than the fact that he's doing well (for a baby that just underwent surgery).  He can definitely feel the pain associated with his surgery, but the medical staff is on top of it and he's not suffering because of it. For now, he'll just doze away until they move him back to his original room at HSC.

Wordless Wednesday.

Goodbye, NICU crib...

Goodbye, yellow gowns...

Goodbye, bright lights...

Hello, big boy crib!

"Wow...my hand is AWESOME!"

Max and great auntie Shelley

Max and great uncle Tom

Max and cousin Ryan

Max and Daddy chilling in their white t's....not a yellow gown in sight!