G-tube surgery

This was one of the toughest weeks we've had in a long time, but we managed to get through it. 

Monday March 19th was Arabella's g-tube surgery. Overall, she was a very strong and brave girl. And before going under anesthesia she was smiling, clapping and waving to the staff. Everyone that walked by was stopping to say hello to this little girl. 

It was supposed to be a routine procedure. And for the most part, it went smoothly. The tube was inserted without any complications.

So it was out with the NG tube (via her nostril, as seen in the above photo), and in with the g-tube, direct into her stomach (as seen below).  

But soon after the procedure, while Bella was in recovery, her blood sugar levels were quickly crashing. The staff was forced to give her higher concentrations of dextrose through her IV. And despite all of that, her blood sugar was still hovering quite low. 

"Here we go again", we thought to ourselves. We've battled Bella's hypoglycaemia for a long time last year, and it felt like everything was coming back to haunt us yet again...

Arabella was in recovery for much longer than usual. The staff continued to check her blood sugar. They were poking her fingers, toes and heels every 3 hours, as her sugars were constantly at the thresh-hold. 

By day two, Arabella developed a fever. Her feeds were immediately stopped for precautions (incase of an infection), and there was even more concern for her blood sugar. 

Before discharge, children with g-tubes must prove themselves by tolerating their full feeds. It's a gradual process, where the staff increases each feed by 10ml until they reach the full amount. 

Everything had to be put on-hold.

More tests and ultrasounds were ordered. Discharge was delayed. Day 3 turned into day 4, and then into day 5...

On top of it all, Arabella was becoming agitated, cranky, and unruly. She had trouble sleeping in the noisy room with other children, she was spooked by every noise, she was crying uncontrollably for long periods of time, and all of us were completely exhausted. 

There were moments when we simply broke down. We had no energy, and we were sleep deprived the entire week. 

But we battled through it. We've been here before, and we weren't going to give up.

Eventually, the staff ruled out an infection. They took pity on Arabella by the third day, and they moved us to a private room so that she could get rest. 

Her fever was likely the result of a minor cold, so we'll continue to monitor her at home. And before discharge she passed her six hour fast (and her blood sugar levels proved to be okay). 

Phew! We made it. 

Everything just took a little longer than normal. It reminded us of our time at SickKids last year, when everything was constantly delayed. Everything turned into a struggle that we had to overcome. 

And we overcame things yet again 😊

This short-lived experience made us realize how lucky we are to be home with Arabella. The hospital-life isn't an easy one. It requires all your strength and energy, and I have nothing but admiration and respect for any parent that has a child going through long term issues. 

This place is a battle zone. Let's never forget it. And may God bless all the children that are fighting the big fight here at SickKids and around the world...

In the next weeks and months ahead, we'll see how much of a difference this g-tube will make for Arabella. One thing for certain is that she'll be a lot more comfortable now that the NG tube won't be down her throat. 

Above is a photo of Arabella celebrating her 13 months (a few days before her g-tube procedure). She's obviously a very happy girl. Way to go Arabella! 💗

After a long winter...

Over the last few months, we've taken many trips outside of the house. Bella had all sorts of appointments, during a winter where the flu has made a lot of people sick. And according to the news, it's been one of the worst winters on record. The influenza A strain (specifically) was the big one to worry about. 

Thankfully, Arabella has managed to stay healthy. It's quite amazing, actually. Considering all the places we've gone, and the fact that I'm around so many people during the work day, we've been very lucky. 

Since November 2017, Belle's received 5 RSV injections (with each shot costing around $1000+). If you don't remember, RSV can be a potentially life-threatening virus, especially for premature infants. The shot is not a vaccine, but rather antibodies that require monthly injections. 

A few weeks ago Belle had her final shot of the season. Next year she likely won't be covered for it, but she'll be much stronger, and perhaps she won't need it. 

Bella absolutely hated the shot. It's one of the most painful shots a little one can get, but she was a tough girl. She would cry quietly for a minute, and then need a good cuddle. 

We're all proud of everything that she had to go through this winter. 

That's the life of a preemie. Extra appointments, extra pokes, extra stress for the entire family - but extra love and hugs to balance it all out. 

It won't be like this forever, though. Arabella is now cleared of her pulmonary hypertension, so the blood pressure in and around her heart is finally normal. 

Her kidneys checked out fine, too. As did her vision and hearing. One by one, Arabella continues to check things off her list, proving to everyone that she really is a miracle baby. 

Soon enough, she won't need oxygen support...

Soon she'll be able to wave goodbye to that oxygen cannula on her face. 

And on March 19th, Arabella will be going for her g-tube surgery to insert a tube through her abdomen (and have direct access to her stomach). Hopefully she'll be better able to tolerate her food, and mom and dad will be able to increase her calories a lot easier. We'll even be able to feed her slowly (and continuously) through the night! It should help her gain the extra weight she needs. 

There are many advantages of the g-tube. Best of all, it will mean that her face will be entirely tube-free.

With the help of many different resources, we're slowly getting Arabella back to normal. For example, physiotherapy will help her get stronger. 

This is just one the things we do at her appointments to strengthen her core and upper body...

At almost 10 months corrected, Arabella isn't a fan of tummy time. She's not big on rolling (although she does it once in a while). She's still not crawling, but we're helping her stand with assistance. Everything is a process that requires a bit of extra effort. 

We're not concerned, though. We know that she'll get there. There's no rush, and there's no deadline. So in the meantime, why not enjoy the journey?

We're on the right track, and we couldn't be happier. 

On top of it all, spring is just around the corner. We're finally at the tail-end of a long, dark and tiring winter. It's time to step out and enjoy the fresh air, and bask in the warm sunshine 😃