Post-op: Day 3

Arabella had a pretty good day. She slept, and slept, and slept some more. It looked like she was able to get into a deeper sleep today, which was nice to see, so we did our best to leave her alone during those peaceful moments. Belle likely needed to catch-up on her rest, like a teenager that's been out too late partying the entire weekend. 

Her potassium levels were still slightly on the lower side, but that should normalize soon. Everything else is quite steady.

Bella restarted her feeds again too, which might be a reason for her increased sleepiness. She's finally satisfied, I bet. She's calm and relaxed now that she's being fed again. She has always enjoyed her meals 😁

I can't stop saying how fortunate we've been. Fortunate since the very beginning, actually. Through everything.

Yes, there are many challenges that still lie ahead, but instead of looking towards Belle's next hurdle or milestone, or being letdown by the not-so-good-things that could have been avoided, let's just celebrate the moment. 

Let's be thankful.

Imagine that you're involved in a car accident (God forbid). Your car is completely wrecked but you're left untouched, with only minor cuts and bruises. The medical staff keep telling you that you're lucky to be alive. The airbags deployed just in time. You were simply one of the lucky ones. You look at the wreckage, at how savagely the metal has been bent and twisted - and then you look at your wounds. 

Would you complain about the cuts on your hands? Or the bruises on your wrists?

Video: Post-op: Day 2

Here's a moment where Arabella was awake and somewhat alert. These short bursts or wakefulness would last up to 5-10 minutes before she would slowly get tired and sleep once again. 

Post-op: Day 2

Day 2 of recovery and Arabella is doing extremely well. 

Preemies usually have a rough few days following PDA ligation, but somehow Belle's an exception. Each nurse that we spoke with today made sure to let us know just how good she's doing. 

We're so fortunate. Little Tinkerbell is obviously mightier than she looks. 

Today she had the drainage tube removed from her side and the staff ran a few more blood tests. Her potassium was on the lower side, so that was added alongside her other IV lines. 

Currently, Arabella is receiving 7 various fluids at any given time. Just take a look at her IV set-up in the picture below.

There's a lot going on there, but it's all important stuff. Every fluid is there for a reason, from medicine to a mix of vitamins. Each syringe is on an automatic timer and release setting. 

Belle hasn't been fed since the night before surgery, but at least they're giving her lipids (fats) through her IV, which gives her some of the calories she requires. By Saturday morning she'll be back to eating once again. Food is gradually introduced so that the body can slowly get accustomed to everything. Digesting food also takes a lot of energy and can sometimes impact recovery too. 

Arabella slept through most of the day, but she also had a few short bursts of alertness where she would look around and directly at us. It was comforting to see her eyes open once again. You could tell that she was acting more like her true self compared to yesterday.

We're blessed to have her doing so well. She's a tough little cookie! 

Post-op

Arabella is recovering well, and so far she's experiencing very typical symptoms following such a procedure. We're all so very proud of her.

The surgeons made an incision somewhere between her ribs on her left side (you can see the drainage tube in the photo above). They used an instrument to spread her ribs apart very slowly, went around her lung to reach the PDA, and then used sutures to close it. It's quite an invasive procedure, and we were so relieved to have her back safe from the operating room.

Your mind will definitely take you places. The anxiety I felt reminded me of the day Arabella was born. You're tired, weak, and you feel like you're beside yourself.

Now we must patiently wait for her to recover. The ligation of her PDA basically changes the entire way her body deals with blood flow. Her blood pressure was a lot higher following surgery, and it will be for some time. They've since given her medication to help bring it down. The staff are being very diligent and are monitoring her very closely, of course. 

She's on extra morphine which should keep her calm and relaxed as the general anesthesia wears off. 

Since Belle's been back from the OR, she's had a heart echo and a chest x-ray to make sure she's okay. 

She was knocked-out all day and into the late night when we finally left her bedside. She barely opened her eyes and would occasionally flinch or move an arm or a leg. Poor girl has been through a lot.

We spoke to her a lot today, trying not to over-stimulate her with too much touching. I placed my finger into her hand at one point and she gave me the most delicate squeeze back. 

That was all I needed. It was enough 💜

Live Update: Out from surgery

This was the display in the waiting room. 

Arabella was very stable during surgery. She is out of the OR now and being admitted back to the NICU. We'd like to thank everyone for their prayers and continued support. Thanks be to God.

The nurses will now place her back into her isolette and monitor her very closely. Apparently, babies can become very sick during the first day or two following PDA ligation, since their bodies must adjust to the new blood pressure and generally recover from the anesthesia, etc. 

Once Arabella was taken to the operating room, Kiera and I were escorted to a waiting area to join other families (also waiting for their little ones). 

Two hours later the surgeon came out to let us know that everything went smoothly. He reminded us that although the surgery went well, Arabella still has a long journey ahead of her. 

That's alright, though. We knew this was going be a lengthy road. We're prepared to continue this fight along with God's grace, and everyone's amazing support.

Thank you all 💗

Live Update: Surgery day

It's really happening this time. Arabella is all ready to go. I can't describe the feeling of walking down to the OR. I don't remember the last time my palms were this sweaty. When Arabella comes out I will post a live update once again. Thank you for everyones continued prayers and support! 💗

Surgery (is this the day?)

The staff have been teasing the possibility of surgery all week. We kept telling ourselves not to get too excited. 

We've had three attempts to no avail, and it's been over a month since she was first due for it. Each time the staff uncovered something else that was going on with Arabella that prevented her from going to the operating room. 

Hopefully this is the day that everything comes together. 

We were told late last night that Arabella's PDA ligation will happen Thursday morning at 8am. We signed the consent form and had a brief chat with a pediatric surgeon. There's always risks associated with such an invasive surgery requiring general anesthesia, but it has come to a point now where she's at a greater risk if she doesn't get this surgery. 

PDA ligation is not heart surgery. In fact it doesn't touch the heart muscle at all. In the diagram above you can see a ligated PDA on the right side. That's what we want. 

A PDA is a blood vessel near the heart and lungs that was a necessary part of Arabella's circulation when she was a fetus. It's meant to close shortly after birth, then disappear. But because Bella was so premature the PDA lingered. And lingered. Four rounds of medication didn't help to close it. 

Her PDA is causing all kinds of problems. Too many to mention. The two big ones are respiratory issues (since fluid continues to build-up in the lungs, making it harder for her to breathe), and her heart must work a lot harder to pump all of the blood that the body needs.

I'm calling on everyone to please say a prayer for baby Arabella. We can even pray together:

Dear Lord, 
Thank you for all of our many blessings. We pray that Arabella comes out strong. We pray that she continues the fight. We pray that the surgeon's hand remains steady, that they have the clearest of minds. Amen.

Kiera and I had no idea that Arabella meant yielding to prayer (to produce prayer) until after the fact. What are the odds of us choosing a name like that? 

We prayed and cried so many times leading up to her birth. Doctors told us that her chances were slim, while everyone around us simply prayed harder. We begged God and pleaded for her. 

After she was born we realized that her name meant more than just beautiful and loving. This couldn't have been a coincidence. It was a clear message that we've since taken to heart. 

So Arabella will do what Arabella does, and that is produce prayer. 

Thank you for everyone's thoughts and prayers! It means everything to us 💗💗💗

Video: Timelapse following diaper change

Here's 45 seconds (of what was normally 4.5 minutes) following Arabella's diaper change last night.

I wanted to try this feature for a while, and this was a great opportunity to give it a shot. I left my phone recording while it sat on top of the incubator.

It's interesting to see how many little things happen around Bella in under 5 minutes.

Video: Receiving OIT

Here's Arabella receiving oral immune therapy, or OIT for short. She was being such a calm and good girl, so I had to reach for my phone and capture the moment!

These videos are so easy to put together. Once I've captured a video, I upload it to youtube and choose a music track in their video manager. Often times there's so much random noise and chatter happening in the background that it's distracting. Music can add a nice touch as well. Hope you guys enjoy these little clips. 

Belle Update: Apr 25

Bella's been quite stable these last few days. Nothing out of the ordinary going on. Thank goodness. 

Those gloves of hers look like tiny oven mitts. What are you cooking, little one? Baking up a batch of sweetness? 

I'm so glad they encourage us to hold her as much as possible. It's good for baby, and good for us! No barriers between us, finally. She slept nearly the entire time I was holding her. 

No news regarding surgery yet, but it might just be a matter of time now. We can almost sense it. Until then, we're going to remain patient and count our blessings.

We're so so very lucky. 

Belle's still a bit puffy around her face and eyes but it's slowly getting better. When she was placed back into her isolette (after her hold) she started to open her eyes more and began to look around. 

It's simply been a great day.

What about the dads?

Dad's turn to hold her today. Equal rights! 😄

A lot of people say that moms get slightly forgotten about in this journey, since most of the attention naturally goes to the baby. And if that's true, if moms really do get left behind, does that mean that dads are out to sea? Would they be even further out compared to moms? 

What about the dads? 

A dad plays an integral role, of course. 

Dad is the play-maker. Dad is the quiet one who gets things done. It's our role to step-up and get involved as much as possible, and it kicks in as soon as your wife tells you that she's pregnant. At that point it can't be 50/50 anymore. Dad has to take over almost all of the duties and ensure that mom can rest and relax as much as possible. 

Fatherhood has been going through an evolution over the past 50 years, says Nora Spinks, CEO of the Vanier Institute of the Family. A growing number of dads have been playing a huge part in their children's lives. The old school family model accounts for fewer and fewer families, as family forms and relationships are becoming more complex. There is no single "fatherhood experience" anymore. It's one of the biggest social changes of our time. 

Everyone has a different perspective about 'what dad's role should be', but without a doubt dads embrace a unique and crucial role in the family unit.

Dad has to keep it all together. Dad has to be strong. Dad needs to be the gatekeeper from the commotion. Dad has an extraordinary kind of love 💗 so thank you to all of the dads out there.

Here's a poem dedicated to all of the dads, it's called Silent Strong Dad by Karen Boyer. 

He never looks for praises
He's never one to boast
He just goes on quietly working
For those he loves the most
His dreams are seldom spoken
His wants are very few
And most of the time his worries
Will go unspoken too
He's there...a firm foundation
Through all of our storms of life
A sturdy hand to hold to
In times of stress and strife
A true friend we can turn to
When times are good or bad
One of our greatest blessings,
The man that we call Dad

Video: Making sucking noises

Arabella has gotten really good with the pacifier over the last few weeks. That's a great sign. 

You can see her swollen eyes in this clip, especially her left eye, which she can barely open at times. 

Belle Update: Apr 24

A quiet day is always a positive day.

Kiera was able to hold Belle in the early afternoon. We placed a cloth over her head in order to shield her eyes from the bright lights. I think she appreciated that. 

Arabella's eyelids were still quite puffy, but she must have known that mom and dad were watching her, and she opened them as much as she could. We get a thrill every time we look into those big brown eyes of hers. She gets her lovely brown eyes from mommy 😊

There were no surprises at all today. We had a quiet evening as well, where we changed her diaper, took her temperature, and talked to her through the incubator doors. Most days I'll hum a few songs to her too. I've been doing that since she was born, and I think she's gotten used to hearing dad's annoying melodies. I'm hoping she'll remember those pitchy sounds of mine so that when she's home one day I can continue to bring that familiarity back to her.  

I can't wait to embarrass her when she's older 😀😀😀

Arabella seemed to be enjoying her new mittens and she hasn't been able to grab her tube like she used to. She was also wearing the same pink vest that was placed on her last night (but it was covered by a blanket in yesterday's photo).

Such a big fashion statement from someone so very small. All of the other preemies in the NICU simply can't keep up with Arabella's trend-setting style.

Sleep tight little lady.

Video: Dreaming of her pacifier

Arabella makes funny faces sometimes. In this clip it looked like she was dreaming of her pacifier.

Belle Update: Apr 23

She has spent a lot of time on her stomach lately. It's her favourite way to rest. 

She acted like the regular Arabella today, but didn't quite look the same. There's still some fluid retention happening around her face.

To reduce the fluid build-up the doctors would need to give her diuretics but that would only encourage her to lose all of those important vitamins and minerals. Her levels have been fluctuating too much this week already, so diuretics are a no-go right now. 

If there's more fluid around her face, there's likely more fluid in her lungs. The nurse noticed more amounts of blood in Bella's breathing tube, and that's always unnerving news to hear. 

Her PDA issue started a domino effect, and until it's shut Belle won't be able to get better. Hopefully this is the week that we finally put an end to this pesky PDA.

They've raised her morphine dose another notch today too. There's a certain PIPP score that the staff use to assess pain in preemies, and apparently that has increased for Bella so it prompted them to boost her morphine intake. She's also growing a tolerance to it.

What will cause more harm, pain or drugs?

She's been pricked so many times in her heel from all of the blood sugar tests lately. We noticed it today when we took a closer look at her foot. Future battle scars perhaps? 

She's a little soldier!

There's a lot going on with Bella. I'm sorry if I sound like a downer sometimes. 

We just can't help ourselves - we worry, and we begin to notice everything unpleasant. That kind of mentality is dangerous. It can suck you in like a whirlpool. Days like this are always a little tougher, but we do our best to remain resilient and push forward. 

We bought her some mitts to cover her hands today. Belle has a tendency to grab and yank her tube so perhaps the mitts will do the trick. 

We also helped give her a sponge bath in the evening, so we did in fact have some fun and memorable moments today. 

They call it a roller-coaster for a reason. This entire experience will definitely take you on a ride. Everyday is different. They can't all be super-amazing days, and that's perfectly okay. 

Belle Update: Apr 22

Arabella looked swollen to us today. You could see it in her face (especially in her eyes and chin). Do you notice it? It's likely that her PDA is causing some fluid retention. 

Doctors are constantly monitoring her total fluid intake, or TFI. Too much fluid may cause problems.

Belle's had so many fluctuating levels lately, but the staff are doing their best to manage everything going on in that tiny body of hers. Today it was her potassium that was low. Her blood sugar dipped again too. Oh, the ups and downs!

Otherwise, she's been quite stable. Some days she struggles a little bit more than usual, but that's expected. Other days she requires a lot more oxygen. There are so many factors and variables constantly at work.

Belle received another blood transfusion today. We heard rumours that she might go in for surgery next week, so in that case it's probably best that the transfusion is out of the way early. We'll get more details by Monday hopefully. Fingers crossed.

Kiera had another chance to hold her this afternoon. This was the scene as they placed little Belle into mommy's arms:

So many dedicated people are there to make sure everything goes smoothly. A respiratory therapist always needs to be present during a transfer like this.

Belle was peaceful and content. She must sense that she's closer to mom and dad.

One day we'll break free from all of the tubes and wires, but in the meantime, there is nothing holding us back from loving our child. Love is love.

I'll finally be happy when...

Another precious day.

Arabella's blood sugar level is completely back to normal. Let's hope it stays that way. 

Today her magnesium was suddenly low and the nurses had to give her a quick concentrated dose to boost it. That resulted in Belle's blood pressure dropping for a while, but it eventually recovered. Yet another example of how one thing can affect another. 

Arabella receives 1000 IU of vitamin D daily to help strengthen her fragile bones. Typically, preemies get about 200 IU per day, but she requires a lot more due to her unique bone requirements. 

She really IS special! 😄

Little by little, Belle is gaining weight, and it's something I don't think too much about anymore. During the first month there was an obsession with numbers. Every gram seemed to matter, and her losing weight would give us anxiety. It felt like she couldn't afford to lose a single gram. 

I'm glad those days are over. 

There are 3 other babies in the room with Arabella, and they have all graduated to the crib stage. Some babies are learning to bottle feed, as they try to get the hang of the 'suck, swallow and breathe' combination while eating. It can be really tricky!

I'll be thrilled when Arabella reaches that stage too, but at the same time, I like where we are right now and I wouldn't want to speed up or fast-forward through any of it. 

Although sometimes overwhelming, I find myself wanting to slow down the time, if anything. This journey is teaching me how to approach every day of my life, how to deal with joy and stress, and how I should never take anything for granted. 

Celebrate today. We should be thankful for what we have right now. There will always be something new to chase tomorrow. 

Imagine for a moment that I was constantly looking towards Arabella's next achievement to give me some sort of relief or satisfaction. I've caught myself doing this countless times. Where will this sort of thinking take me?

"I'll finally be happy once Arabella has this surgery"

"I'll finally be happy once she's back home with us"

"I'll finally be happy when she's sleeping throughout the entire night"

"I'll finally be happy when she can eat solid food"

"I'll finally be happy when she's toilet-trained"

"I'll finally be happy when she can walk on her own"

"I'll finally be happy when she can go to school"

When...when will I really be happy? 

I must embrace and appreciate today. This is one of the important things that this experience has taught me. 

Video: Nurses wrapping up Bella

Here's a short video clip of nurses wrapping up Bella before taking her out of the incubator and placing her into Kiera's arms. This way Arabella is warmer and more contained (and hopefully more comfortable), but she can still get cranky sometimes! 😀

Belle Update: Apr 20

Kiera had an opportunity to hold Arabella today so the nurses helped wrap and bundle her up. She looked like a tiny baby burrito 😄

They placed her in Kiera's arms, made sure all of the tubes and wires were secure, and the three of us enjoyed some quality time together. That will always be the highlight of any day. 

Bella loves her cuddles 💗

Great joy is truly found in the simple things. Every day we do our best to appreciate moments like this.

Arabella had a great day overall. No transfusions, no x-rays, no major blood work. She only got a few pokes for blood. A quiet day is something else we've learned to appreciate. 

She was placed on her tummy following her cuddle and she rested ever so soundly. I'm surprised the nurses don't place her like this more often. 

Arabella's blood sugar was quite low for the last few days so they've been administering glucose through her IV. Her levels have slowly risen since then so everything should be alright. 

Last night Belle weighed-in at 1400 grams. That's well over 3 pounds! She's almost tripled in weight since birth, and that's a huge success.

We're still waiting for clarity surrounding her bones and how that might impact the PDA surgery. In the meantime we're doing our best to remain optimistic. 

Find joy in the everyday. 

Today was a great day.

Belle Update: Apr 19

Arabella had a chest x-ray, an abdominal and head ultrasound, and a lot of blood taken from her today. She's been poked and pricked so many times. Blood in, blood out, I suppose. That's the way things go in this environment. 

Belle will likely need a transfusion again in the next day or two. She looked pale, tired, and simply worn out. 

Every procedure takes a lot of energy from her. Her heart rate increases anytime the staff handle her, and that has an effect on her breathing. She consistently requires more oxygen during diaper changes, for example, so you can imagine her oxygen needs for procedures that take a lot longer, like ultrasounds. 

Belle has an IV in her leg, and another one was placed into her head today. More access points for all of the different things they are giving her. Vitamin cocktails, drugs, minerals...some things are good, while other things aren't great but they're unavoidable. 

Sometimes you feel so sorry for her.

One minute you're holding her hand, having a moment, trying to make a connection, and the next minute you have to step back and let the staff do their job.

It can be a helpless feeling, but you learn to deal with those moments and move past them. For your own good, and of course for Arabella. We all have to be strong for her 💗