The Big Day.

Surgery day has arrived. Tomorrow Maximilian will enter the operating room for his third surgery - with the same surgeon no less. His gastrostomy tube (G-tube) will be placed under spinal anesthetic in a procedure that is estimated to take about 45 minutes. Mum and Dad are nervous, as one would expect, but are ultimately looking forward to this last procedure being behind us and paving the way home. Healing time from this surgery varies, but barring any complications we can expect to have Max home in a weeks time. It couldn't come soon enough.

You just can`t let go.

Maximilian has gotten used to his Mum being around him for the greater part of the day. Because of this, he has found it quite gauche when anyone lets go of him and prefers to be in someone`s arms all day long. Happily, is mother is quite compliant with his demanding nature, and a lot of cuddles are shared throughout the day.  He`s exceeded 10 pounds now and it`s starting to give Mum and all others a bit of a workout when holding him, but feeling the burn is an even trade off for interacting with the big, blue-eyed bundle of cuteness.

Maximilian and the normalcy.

Max had a beautiful day. He had a lovely bath today where he tried his best to jump out of the water when dad started washing his more tender areas. Then, he spent a good deal of the day entertaining visitors and being a social little butterfly.  Only a few more days until surgery, and (hopefully) only a short while after that until he comes home.

Darkness is Ok.

Today, Max was basically being Max. He seems to have adjusted to the diurnal cycle we "outsiders" have taken for granted, and he seems to understand that dark time equals sleepy time. Ideally, this will translate to his transition home being pretty easy and straight forward.  Right now, he's a pretty upbeat child and the only time he's really cranky is when nobody's holding him.  Mum, Dad and his various visitors ensure that his tiny little body is held in loving arms as much as possible.

The new place.

Maximilian had his first full day at the Children's Hospital.  It took a while for him to get used to something that most people take for granted: the day/night cycle.  At the St. Boniface NICU, the lights were always on and the children there didn't quite know about darkness unless it was accompanied by an eye exam.  Max didn't quite understand the dark at first, but grew accustomed to it rather quickly and then slept the entire night away with Mum by his side. It's a different environment; Max has his own room and the nurses come to check on him regularly but aren't hovering over him like they were at the NICU. Mum and Dad (but especially Mum) are spending more time with him while he's there so that he doesn't get bored. His days are similar to those he spent in the NICU, but they're filled with more quiet and more time just being a baby without the *beeps* and *boops* of the NICU's clamoring soundscape. Despite the fact that it's still a hospital, this is a good "training area" for Mum, Dad and Max to get used to what life is going to be like at home. So far, it's filled with a lot of cuddling and cuteness.

Learning to Swim

Today was the first day at the HSC Children's Hospital.  It's been a very long day and Mum, Dad and Max are all a bit frazzled by the newness of it all.  We will report about it more when the initial shock is over.

Adieu, NICU

Mum and Dad were greeted with a bit of news today.  Max will be moving to a different hospital within a day. This means that he, Mum and Dad will have almost a full week before his surgery to get used to his new environment.  Although we will definitely miss the staff at the NICU of St. Boniface, this is one step closer to having Maximilian home and is also a step up in the type of room he'll be staying in. Because he's such a big boy now, and because he's gotten past all of his "major" complications, he's considered too old and too developed for the NICU.  His new environment will be better suited for his age, and will also allow for a bit more space so that Mum and Dad can be more comfortable while taking care of the little guy.

We would really like to make it clear; without the nursing staff, the doctors, the respiratory therapists, the occupational therapists, the phlebotomists, the everybody... Without them, our lives over the past six months would have been nothing but chaos, confusion and agony. We never felt bad leaving Max for the evenings, because we knew that the entire staff there is the most skilled, thoughtful and compassionate staff imaginable.  We would never wish this type of journey on anyone, but if anyone did have to go through it, we honestly would hope that they could do so with the St. Boniface staff helping them every step of the way.  We have formed some pretty unique bonds, and only hope that one day Max can fully understand just how amazing it was that he had such a large group of people care about him enough to see him through this whole thing.  We are ecstatic that this chapter in Max's life is coming to an end, but we will genuinely miss the wonderful people we have gotten to know over these 6 months.

Tomorrow, Max will get to meet his new friends at the Children's Hospital. I'm sure he'll wow them with his cuteness.