Christmas countdown & feeding clinic

We're quickly approaching December, and mom and Belle are definitely in the Christmas spirit. 

This is going to be Arabella's first Christmas, and it's going to be one to remember. You can count on it! The countdown is officially on...

Unfortunately, we're not going to take Belle out for any visits during the holidays. We decided not to take any unnecessary risks this winter - so we'll just have to make sure to have a holly-jolly time at home.

We have a ton of fun at home, as you can see 😊

So many people have gotten sick around us lately, so we're constantly being extra cautious. When we see our pediatrician, for example, we avoid the crowded elevator and take the stairs. We have Bella wrapped up and covered until we're finally in the patient room (which is usually waiting for us as soon as we arrive). We're away from potentially sick patients, and that gives us some peace of mind. 

We're also avoiding trips with Belle to the chiropractor for that very same reason, but the good news is that the chiropractor now comes to us! Home visits are the best!

Here she was at her last chiro visit...

Being a brave and strong girl! She got another scan that showed that her spine was much more aligned compared to the first time we took her. We're making progress!

Hopefully we can make it through this winter, but it's not going to be easy. 

Bella already received her first shot to protect her against the Respiratory Syncytial Virus (RSV), so at least she's covered in that way. Those were the costly $1000+ shots that only the most fragile kids get covered for. Again, it's peace of mind, and everyone we talked to said it was absolutely necessary. RSV shots save lives, apparently. 

Here's Belle at yet another feeding clinic, this time at North York General Hospital. We were really pleased with the staff because they offer a slow and simple approach. 

And Arabella was showing a lot of good early signs...

It's all about 'going back to the basics' - no bottle feeding, no force feeding at all. Arabella is in complete control over what goes into her mouth, and the idea is to reconnect that pleasure drive associated with feeding by mouth. 

And here we are at home, practicing with these so-called 'hard munchable foods'. Since Arabella is now reaching and grasping at objects (and bringing them to her mouth), she's ready to explore these types of foods. And since the food is hard to break down, it's a perfect time to encourage her to bite down, move her tongue, and help her become aware of different tastes, textures, and sensations. 

These important early steps will help develop chewing skills needed to handle different textures and foods later on. 

So 3 times a day we place her in her highchair and let her explore these munchies. We place them on the tray and allow her to reach for herself. 

Sometimes she just wants to play with the food. Sometimes she doesn't really care for it at all. And that's totally alright. It's hard to always be in the mood for munchies.

Eventually we'll move on to 'meltable hard solids' such as dry thick toast. As the toast becomes wet (and melts with her saliva) the texture will change gradually. It's another sensation in the mouth, and it will help her get used to how different foods feel in her mouth and what she needs to do to break it down, chew, and liquefy it for swallow.

Since she still associates pain or discomfort with her feeds, it's going to take a long time to undo the refusal behaviours. So everyday we do things like massage her gums (while singing to her) so that she starts to make positive connections again.

Given her reflux (and all the gagging and throwing up that she does during the day), I'm surprised that she puts so many things into her mouth. So we need to take advantage of this time and see if we can help her make some positive connections again. 

It's been a long and uphill climb, but we're on the right track now I think. Lucky for us, things should only continue to get better...

Here's hoping!

Happy 9 months & World Prematurity Day!

On November 17th we celebrated 9 incredible months of this tiny Tinkerbell. Woo hoo!!!

Nothing cheers me up more than seeing that precious smile. It's like heaven on earth 😁

November 17th also happened to be World Prematurity Day. It's observed on this day each year to bring awareness to preterm birth. The objective is to spread the word, better understand how to care for premature babies, strengthen health care services for high risk pregnancies and premature babies, and to stimulate new avenues of research in preterm birth.

Buildings and landmarks shine purple in honour of the 1 in 10 babies born too soon around the globe. 

I scroll through the various comments and posts on the WPD facebook page...and I get sucked in. I begin to realize just how many families have endured a similar journey. 

One mom sums it up rather perfectly, "Prematurity is both my sons. It's having your newborn whisked away after delivery and longing to cuddle them. It's meeting your baby at a distance through a plastic crib. It's tubes and wires and beeping monitors. It's trying to navigate a world of fear and tears and fighting. It's going against every fiber of your being and walking out of a hospital without a part of you. It's long days that become weeks and months back and forth to the hospital. It's celebrating tiny milestones and defying the odds. It's becoming part of a club you never imagined yourself in. And it's loving your baby more deeply and more fiercely than you ever could have imagined possible."

Another mom's comment makes it clear that not every story is quite so glorious as Arabella's.

She writes, "It's a reminder of my first born angel Joseph born at 27 weeks and lived for two days and his angel twin brothers Anthony and John who were born at 26 weeks and lived for one and two days. In my heart forever."

That's when I start to get a little choked up... 😢

It's a miracle that Arabella is alive today. There's no other way to put it. 

She was born one day shy of 28 weeks gestation, but her weight and development was comparable to a baby of 23 weeks (at 23 weeks, the survival rate is roughly 50/50).

And before Arabella made it to 1 pound, her odds of survival were calculated around 5-10% (we were told). It's the reason why doctors were preparing us for the worst, and it's why we're so overjoyed today. Arabella defied the odds, and at times we forget just how amazing she really is. She's fierce, she's a real fighter, and we owe it to her to celebrate her heart and grit.

It's easy to forget about everything she's been through. We're always trying to move on and leave the past behind us. But every once in a while you're hit with the cold, harsh reality...

That darkness was just around the corner. We were right there, in the upside-down world 😕. We walked in the shadows, we felt the uncomfortable chill, and somehow we managed to find our way out of there.

World Prematirity Day makes me realize that we shouldn't forget about where we came from. We shouldn't try to hide from it or repress it. We must embrace it. 

The tears, the panic, the endless prayers, the sleepless nights, the help we received along the way...all of the good and bad that came with prematurity. 

It's all part of this great and unique story. 

So whether it's World Prematurity Day, an image of a baby in an incubator, a nurse wearing scrubs, or a new show on TV (like the Hodges Half Dozen) - I'm constantly reminded of where we came from. 

We're all part of this beautiful and amazing club 😊

Happy 9 months Arabella, and happy World Prematurity Day!

Picture day: November 1 - 12

Candy cane cutie...it was only a few years ago that our niece Lilianna was wearing this very shirt. It's one of those cherished hand-me-downs that we absolutely love.

The cold weather is now upon us, so bring on the indoors. It's time to hunker down. We only step out with Arabella for appointments these days. And as everyone around us is battling colds, we've managed to stay healthy. We've been really fortunate so far.

I decided to head back to work in December (instead of January), so the real test of health is still yet to come. Our biggest worry is that I'm going to catch something and bring it home. 

What else is new? We started taking Arabella to a chiropractor 3 times a week. An alignment of certain parts of the spine have been shown to help proper digestion, so we figure we have nothing to lose. If we align her spine, we might be able to correct her nervous system, and thus help her reflux and digestive issues. We're trying everything we can at this point. 

We still haven't seen an improvement with her reflux. We go through a lot of onesies and blankets on a daily basis. Belle will cough, wretch, gag, and eventually throw up (sometimes an hour or two after a feed). 

I think it's safe to say we're quite used to it at this point. We don't really care, and we tell ourselves repeatedly that throwing up is a normal baby thing. 

Most of the time it doesn't even phase Belle, either. She's a trooper! 

What are some of the other changes we've made? We went back to her hypoallergenic formula (called Nutramigen). 

The "exclusive breast milk trial" showed us no results with her bottle feeding. It didn't make a difference. The only thing we noticed was that Arabella was missing her extra calories and it slowed down her weight gain. So we're back to the smelly formula. It's actually really gross!

Currently Arabella's up to 5.45kg (12lbs) and she's almost 6 months corrected. She's still at the very bottom of the growth curve, but her length has increased over the last few weeks, at least (now at 62cm).

Overall, we're not too concerned. Belle will catch up in time...

What else? A few weeks ago we discontinued her acid blocking drugs and started using natural remedies to manage her stomach acid. We're carefully watching her for any major discomfort when she throws up - since we know that the acid-burning sensation can cause inflammation to her esophagus, throat, and even her lungs. But we're really trying to do everything we can the natural way these days...

Another thing we've changed? We stopped giving Arabella the bottle entirely. We got paired up with a great occupational therapist, who told us to give Belle a long break from the bottle. Belle wasn't taking anything from it anyway.

Kiera and I have to create more positive experiences around eating for Arabella, especially with the objects that come into (or close to) her mouth. 

Feeding her anything is a real challenge. She's simply not interested in any kind of food, and she dislikes most things that come close to her mouth. Lately she doesn't even want her soother. So it's important that we don't push or force the spoon. As soon as Arabella pushes away our hand or the spoon, we have to stop and respect her boundaries. The last thing we want to do is make things worse.

That's what she thinks of food 😛

And she thinks it's funny, of course 😄

We were told to sing to Belle while we present spoons and items close to her mouth, and most of the time we shouldn't even attempt to put food on those items. 

Eating isn't enjoyable for her right now, so it's all about getting back to a good place without forcing food or making eating a stressful chore. 

Other than her eating issues, Arabella's doing great. She's making steady developmental strides and she's getting stronger by the week. 

According to an infant development nurse, Arabella's muscle tone is roughly equivalent to a 4 month old, but we're working hard to get Arabella on track. 

Kiera and I have learned not to stress over milestones. We know it's not a race, and Arabella isn't exactly a regular term baby either. 

To be honest with you, I don't think there's much we stress about anymore. 

We're all too tired, and too busy to stress 😁

There's too much joy in our house these days. Too many laughs! We're having lots of fun with Arabella, and we're trying to hold onto every beautiful moment as long as we can.

Life is absolutely perfect right now 💗