Late night cuddles

Kiera and I went to visit her around 10pm. We were in luck! 

The nurse needed to swap Arabella's isolette for a clean one with fresh linens (they do that every so often), so what better opportunity for Kiera to hold her while the nurse prepares Bella's new incubator!

It took a few of us to help take her out slowly and carefully. 

So many tubes and wires. Is there a plug in there to charge my phone? 😄

Bella was fed as soon as she was placed into Kiera's arms, and it only took her a minute to fall soundly asleep. 

After an hour or so, Belle was in her new home. 

Tonight was a great surprise. We love holding her so much. It turned an okay day into a great day! 💗

Belle Update: Apr 18

Easter weekend came and went. Not a whole lot happened over the last few days for Belle since the staff was limited and most procedures were put on hold until after the weekend.

So now we're back to it. 

Arabella had an eye exam this morning, along with a heart echo. Her eyes are being checked every other week to ensure that she doesn't develop 'retinopathy of prematurity' or ROP for short. Excessive oxygen can cause damage to a preemie's retinas, and that's why Arabella is only given as much oxygen as she needs in order to keep her blood oxygen saturation within a decent range.

It's crazy how one thing can affect another. 

An ultrasound on her abdomen is scheduled for later today, but it might be moved. They don't want to tire her too much. Arabella is strickly on minimum handling at this time. No unnecessary diaper changes, for example. No one bothers her unless it's absolutely needed.

Kiera and I had a meeting to discuss Belle's bone situation. We met with genetics, an orthopedic doctor, and our lead doctor. We saw the x-rays on a projector and the staff showed us some of the areas of concern. It's really quite unusual for her to have this many fractures (even given her fragile state to begin with). Hopefully it's nothing too serious.

We're still waiting on blood and DNA results to give us definitive answers, but so far it's very likely that Belle could have a nutritional deficiency called rickets. It results in thinner, less dense bones that can break easily. We're hoping that's all it is. Once her nutrition improves she should recover from it completely, with strong straight bones and no long-term consequences. 

That kind of healing will take time, though. Her bones need to strengthen, and in the meantime her lungs and PDA situation is worsening. When will the PDA surgery happen? No one can give us an answer just yet.

We've been praying for a lot of patience lately. Everything will sort itself out in due time. 

Last night they increased Arabella's morphine to manage her pain better. It's not a huge dose, but enough to keep her content. She's likely in a bit of pain from all of the small fractures that continue to heal and get better. More morphine also means that she can rest and breathe easier. Her breathing becomes more stable as a result, and that allows her to be ventilated easier, using less oxygen. And less oxygen means less damage to her lungs.

There is always a ripple effect, it seems.

It gets complicated when you start to weigh the pros and cons, when you compare one thing to another. 

You can understand the tough position that everyone is in. Every action has a reaction, therefore every move is a calculated one.

Video: Getting better with the pacifier

Amidst some of the worrisome news we've received lately, we are comforted by the little and funny things that happen daily. Like the way she sucks on that pacifier! 😄😄😄

Happy two months

A letter to my dear daughter:
---

Happy two months, you tiny Tinkerbell. 

You overcame so much to get to this point. We're all amazed at your strength and determination.

You have a greater purpose than you realize, and you will continue to do great things in your life. 

You won't understand until you're older. 

Your mom and I pray for you constantly. People all over the world are praying for you and following your story. There are weekly masses dedicated to you and your well-being, and I've been told that there are two guardian angels watching over you. God must have sent you an extra one just to make sure. 

That's how much He loves you. 

You've brought all kinds of people together, and you've surrounded your mom and I with such love and support. You've done so much good, for someone so tiny.

You're never too small to create a whole lot of kindness in this world. 

The best moment during the last few weeks was when your mom got to hold you in her arms. Our hearts skipped a beat every time you looked in our direction. The image of you and your mom is like a beautiful painting that is forever displayed in my mind.

Seeing you and touching your hand helps me get through even the toughest days. If you can go through all of this being so small, I should be big enough to endure anything.

Your mother is really worried about you. She's scared that you need her. She cries for you nearly everyday because she wants to shield your pain.  

Can you sense us when we're around? I wonder what you're feeling. Your mom and I wish that we could just embrace you, hug you and kiss you. If we're overprotective of you in the future, it's simply because we're scared. 

We love you.

We'll never take you for granted. 

You deserve everything great that this world has to offer, and I hope it's everything you want it to be.

Easter wishes

What a tiny Easter egg!

Wishing everyone a joyful and relaxing Easter, from Arabella, Kiera and myself, to you and your family! 👪

Lots of hugs to everyone who has been following Belle. Thank you for your constant support!
💜💛💚💙

Belle Update: Apr 15

A better day for Bella. 

The nurses placed her on her tummy for the majority of the day since her breathing was still heavier than usual. Laying on her stomach seemed to settle her down, and Belle slept through the entire afternoon and evening. 

We didn't have an opportunity to interact with her today, but we're glad she was resting since the last few days have been jam-packed. She's been through a lot of procedures lately. 

Baby is all tuckered out.

On Monday there should be another heart echo performed in order to get a better sense of Arabella's PDA. Somehow we doubt that the last round of meds achieved anything. The drugs might even be the reason for her recent struggles with her lungs. It's hard to say for certain.

Sometime mid-week we'll have a formal meeting with the doctor and a few other specialists to go over her x-rays, take a look at all of her fractures, and perhaps talk about a timeline going forward.

It's been 23 days since Belle was first due for surgery, and since then it's been one set-back after another. First it was a sepsis infection, then a fungal infection, and now her bones might be too fragile (PDA surgery requires access through the ribs).

We need this PDA closed more than anything. We're trying to be as patient as possible, but it's not always so easy, since all of her other problems are compounding.

We're afraid that Bella's condition is going to get worse. Each extra day that she's ventilated means more lung damage, for instance. She's at risk for all kinds of other things. Some can be potentially serious and affect her future development, so you can understand why we sometimes feel let down.

As this PDA affair remains unresolved, there is an uneasy feeling that follows us; there is an anxiousness in our minds and hearts. But everyday we do our best to put those feelings behind us, and be thankful for another day spent with her 💗

Video: Sucking on her mini-pacifier

This video was taken on April 13th. She was slowly falling asleep while playing with the pacifier that was in her mouth. That's the smallest pacifier they could find at Sick Kids, and it's a bit too big for her. She's still learning how to use it! 😆