Belle Update: Mar 31

It looks like Arabella does indeed have a fungal infection in her blood. More than likely, she'll be on antibiotics for the next two weeks. It will take time to eradicate this infection, so until then surgery is on hold. 

Our patience and strength are being tested. 

Thankfully she's going to stay at Sick Kids until everything is sorted out. The trips back and forth seem to only create issues for her, and each hospital has a slightly different way of doing things. They each take blood from her, to the point where she eventually needs a transfusion. The more pricks and IV lines she receives, the more chances of infection too. It's a vicious cycle we can't seem to break.

They had to hold her feeds, so Belle has only gotten electrolytes lately. She was 980 grams the night they transferred her over (so close to the 'kilo club'!). 

The thought of her not being fed right now kind of hurts. You can tell she's drained too. I haven't seen her open her eyes for the last few days, and there's no chance of holding her either. We just talk to her through the incubator. 

"Stay strong babe, mommy and daddy are right here."

I had to leave the room at one point yesterday. I simply couldn't handle the frustration I felt. 

Today it was Kiera's turn. At least we alternate 😀

Someone is always the stronger one. We each have our moments, but we bounce back fairly quickly. Sometimes you just need to go for a walk. Take a time-out and regroup. 

They've been giving Belle a low-dose fentanyl drip to control her pain and calm her down. She has become very agitated lately, so it prevents her from fighting the ventilator tube that helps her breathe.

I feel so sorry for this little girl. It breaks my heart when I hear the nurses tell me all the things that have happened while we were away. 

All in all, today was still a better day than yesterday. 

Belle Update: Mar 30

There was no surgery. Arabella's blood results showed slightly elevated signs of a fungal infection. 

Where did this come from? How did something like this slip by, again? Especially after all of the extra blood tests lately.

The nurses at Sick Kids have started to give her antibiotics, and now we'll wait to see what the blood culture results show in 48 hours. If it's really a fungal infection, she might need antibiotics for up to two weeks. 

Her immune system is so fragile and immature, I understand how these things happen. It's easy for preemies to catch these sorts of things. 

We can't seem to get over this hump hill. 

Arabella also received another blood transfusion today. They've taken a lot of blood from her lately, so it's only fair they give some back. 

Today was a tough and busy day for her, to say the least. She was apparently so feisty and unruly at one point that they had to give her sedatives to calm her down. Belle is showing her frustrations.

Can you blame her?

At least tomorrow is a new day.

Back at Sick Kids

Arabella was transferred to Sick Kids around 3am. They immediately ran a few blood tests and found a slightly elevated result (in a certain CRP test) so now we're waiting to hear back regarding the most recent blood results, and how it will affect surgery. 

We're not sure if it'll happen today.

Bella's been through so many blood tests recently at Mount Sinai in order to make sure she's ready, so we really don't understand where the elevated levels came from. 

Deja vu. 

We'll try to remain optimistic, though, and I'll post an update later on if we get some answers. Everything is up in the air right now.

Regardless, we'll continue to keep our heads up! 

Surgery (second attempt)

Arabella was getting a heart echo this morning when we arrived. They were taking another look at her PDA.

The blood culture came back negative after 48 hours, so we've gotten the go-ahead for surgery, pending a few more quick blood tests this afternoon. If they go well (and they should), surgery will happen tomorrow. 

I was expecting early next week, so this is a rather nice surprise. Apparently, Sick Kids had an open time slot for tomorrow so they called to ask if she's ready. Let's give this another shot, shall we?

We're slowly preparing ourselves mentally, again.

Belle went up 20 grams last night so she's sitting at 940 grams. Last Wednesday she was 920 before being transported to Sick Kids. It's exactly one week later and she's hovering around the same weight. That's what happens when there's a hint of an infection - feeds are held, antibiotics are administered, and a ton of tests end up tiring out your little one. 

One step forward, two steps back. 

It's a steady up-hill climb, but we're thrilled to be in this spot. There's so much hope for the future. 

Arabella also received an IV line in her head last night since the one in her leg came out somehow. You can see it in today's picture. It looks a little strange, but it's completely normal. Veins in the head are the easiest to see since the skin on the scalp is thin, and they usually require the least number of attempts. Babies veins are so very small and fragile. 

Little Ara is going to continue fighting with a new mascot in her corner, courtesy of our wonderful friends Jim and Lori 💗

Belle Update: Mar 28

In today's photo, you can see that Arabella almost managed to put her thumb into her mouth again. Practice makes perfect.

Today marks day 40.

Belle was 920 grams during last night's weigh-in. That's a big jump of +70 from the other day. Hopefully now she can maintain this weight gain. Fingers crossed! And when she hits 1000 grams, she'll be officially welcomed into the 'kilo club'. 

We'll take any excuse to celebrate 😃

The blood culture results will be ready later today, but so far it's looking like the infection is long gone. By Friday Arabella will have completed her antibiotics and hopefully have a date set for surgery. 

Yesterday's first eye exam went really well, and little Ara will have a follow-up in two weeks. It's still too early to tell 100%, but so far, so good. 

Our primary nurse Cora also managed to get us a larger room today. She's always looking out for us. We didn't have to move very far, the new room is right next door to our old one, so now we have more space to sit and move around. It makes such a difference.

Bigger baby, bigger room, so make way for Arabella! 

It was my turn to hold Belle today. Kiera held her yesterday and we've been alternating. Fair is fair. Daddy needs his time with baby too. 

It's a bit of a process getting her in and out of the incubator, but it's worth it. I held her for over an hour and I enjoyed every last second of it. I love the feeling of her little fingers and toes as she wiggles around every now and then. 

I feel like she really increased in size (especially her head) compared to a few weeks ago. She's growing slowly, but surely. 

I wish I could freeze these moments. 

Belle Update: Mar 27

Arabella was alert and wide-eyed during today's hold with mommy. After a while, she started yawning and eventually fell asleep. 

Oh, those eyes.

Yesterday I got a chance to hold her, and it felt so good to have her close to me again. She's never given us any issues during skin-to-skin. Such a good girl 😃

Belle weighs 850 grams today. She's slowly gaining weight again.

We're still awaiting the blood culture results but so far everything is looking good. We're on track. A few other tests were planned for today, mainly for her liver and an exam on her eyes. But first, Belle had to get some eye drops put in, and she didn't like them one bit. Immediately after she received the drops, she put her hands up to her face and started rubbing her eye lids. I'm surprised at how coordinated she's getting.

Little Ara also managed to put her thumb into her mouth again today (Kiera was able to snag a pic). These are things we love to see. 

Arabella has many nicknames, as you may have noticed. We love the variety, and everyone calls her something different. Ara, Bella, Belle, Tinkerbell...a name for all occasions.

Our three year old niece Lilianna calls her 'Baby Cinderella' and it's the most adorable thing ever 💗

Personally, I love the variety, and I love nicknames. Especially for babies and small children. It makes things fun and playful. 

Here's Belle getting a check-up by a student from George Brown college, while our primary nurse Cora looks on. 

We love Cora. She's always staying past her shift to make sure that our little girl is taken care of. 

Belle Update: Mar 26

Belle was under the UV light when we came to visit her this morning. UV light therapy helps prevent conditions like jaundice.

The threat of a blood infection created some new concerns, but Arabella's being looked after very well. They'll do her blood cultures again today, and in 48 hours we'll have a clear sense of how she's doing. 

So far, so good, considering everything. 

She went down to 840 grams, but hopefully she'll be back in the 900's soon. Arabella is finally back on full feeds with fortifier (extra calories). 

Since the infection scare, the nurses had to stop her feeds, so poor Belle was essentially fasting most of the time she was at Sick Kids. At least she still got her liquids and electrolytes.

During her blood transfusion (yesterday) they had to hold her feeds as well, so that was another 5-6 hours without food.

Speaking of fasting, my wonderful dad has been fasting for Arabella's intention every Friday since she was born. He only drinks water on Fridays.

This is the season of Lent, after all. It's a time for clarity and strength. A time to re-focus, to sort through all of the things going on in your life.

Here's Arabella today, looking right at Kiera 💗

Belle Update: Mar 25

Back to her stomping grounds. 

Belle has returned to Mount Sinai, after being transferred last night around 11:30pm. 

She's exactly 33 weeks today.

Miss Arabella is on antibiotics for the next six days, so until then, no surgery. She'll also receive a blood transfusion today. A nice welcome back, huh?

She needs it. She's had a lot of blood taken from her lately. Test after test. The staff need to stay on top of her fluctuating levels, especially with a possible infection lingering. 

Constant check-ups.

Arabella's attitude still remains up-beat. You can't even tell that she's going through anything. 

She's such a little trooper. 

Here she is today, receiving some 'oral immune therapy' from mommy: 

Bye (for now) Sick Kids

Arabella's saying 'bye for now' to Sick Kids and heading back to Mount Sinai tonight. 

Here was the view from the 3rd floor (close to the NICU area). I enjoyed the overall feel of this area within the hospital.

I thought these posters were pretty cool. It's an entire campaign for Sick Kids right now. It's putting a 'fierce' new face on what it means to be sick.

Here's one of their videos (I think I might have seen a shorter TV commercial of this). But I like the overall spin they put on this campaign. These kids are indeed tough.

Video: Arabella receiving OIT

This clip is from March 18th, as Belle receives oral immune therapy (basically, sterilized Q-tips dipped in breast milk). It's got a lot of great benefits.

What a treat for little tinkerbell 😄

She was on the pressure mask (NIPPV) that day, and was constantly opening her mouth (causing too much pressure loss in her lungs) so the chin-strap was there to help keep her more contained.

It's hard seeing her so bound and restricted sometimes. But then you think to yourself, "She needs this. It's for her own benefit."

A narrow escape

Belle's cultures came back showing positive this morning. It was the start of sepsis, a bacterial infection. Sepsis could be life-threatening, so it's a good thing that Belle had been on antibiotics preemptively. 

This is the second time an infection has been caught early. Someone out there is watching over this girl, if you don't know by now 😉

We're so thankful to the staff at Sick Kids. They saw something wasn't right with her blood results when they took her in. They put surgery on-hold, and while we waited 48 hours for the culture results (unfortunately that's usually how long it takes), Arabella was already getting treated.

Her latest blood results have been much better, so it's clear that Bella is fighting this off. She'll be fine. 

Surgery will likely end up being pushed another week forward.

When Kiera gets too wound-up and worried I tell her that if Arabella could talk she would probably say something like, "Stop worrying about me mommm! You're so over-protective, geez, I'm fineeeee" (but you have to say it in that bratty teenager voice). 

This little girl is a champion. 

She's tough, so don't worry.

Yesterday a nurse told us that Arabella will grow up to be a very independent woman, judging by her personality. She can be very feisty and temperamental at times when you interact with her. 

She's very aware, and she'll let you know when she doesn't appreciate you.

Never get on Arabella's bad side 😀😀😀

Thursday is ladies' night

A couple of pictures from tonight's visit.

Belle's lighting up the night with this fabulous glow in the dark ensemble:

You can start to see more of her hair in this one while she's being handled by her nurse. She looked noticeably bigger to us today too. What a difference compared to weeks ago.

Today she's 920g, 33cm long - compared to 480g, 28cm when she was born five weeks ago.

A step back

Surgery has been cancelled for today. 

Arabella's white blood cell count was high which could mean the start of an infection. Everything needs to be checked again. 

More blood-work, a chest x-ray, a culture count, and a few other things are being done today. They need to make sure she's 100% okay before going ahead. Better safe than sorry.

We'll just regroup. 

Surgery might happen on Monday, if everything goes well from here.

There was air leaking from Belle's ventilator tube (around her windpipe), so the nurses at Sick Kids managed to place a new tube through her nose. That seemed to fix the problem. Apparently she out-grew her old one. 

Overall, the NICU at Sick Kids is a little bit different than the one at Mount Sinai. Kiera and I felt out of our comfort zone, but any new surrounding will do that. 

Bella doesn't have a private room all to herself, but that's not a big deal either. One large room is shared with up to six babies. That's how the rooms used to be at Mount Sinai before they renovated. 

So although Kiera and I feel a bit out-of-place, we're happy that Arabella is being looked after so well. They didn't rush her into surgery. Instead, they took the time to make sure she's absolutely ready for it.

For now we'll just have to visit her at Sick Kids until everything is straightened out 😊

Going for surgery

We received the go-ahead for surgery. Tomorrow (Thursday) around 4pm.

I was surprised they booked her in so quickly, but you won't hear me complain. The sooner, the better for Arabella. 

Let's do it. 

You can guarantee our anxiety will be set to ultra-high tomorrow, but we'll get through it. Like anything stressful in life, we all find a way to cope. We grin and bear it. 

We ask God for help. 

It's okay to ask people for help too, I found. People really do want to help, and they genuinely care. 

It'll be alright. We have so many amazing people supporting us. We have a tremendous safety net.

The staff has already taken Bella over to Sick Kids hospital, where the PDA ligation will take place. Mount Sinai is linked to Sick Kids via underground tunnel (for such circumstances), so it was a smooth transfer. 

They took her away in the blink of an eye.

This PDA surgery should go well. God is in our corner. Let's all have faith. 

Please continue to keep little Arabella in your thoughts and prayers, especially over these next few days. 

As soon as she's out from surgery, I'll post a quick update to keep everyone informed. 

💗💗💗

Belle Update: Mar 22

We are still waiting to hear back about a date for Arabella's PDA ligation. We should find out sometime today or tomorrow. 

In the meantime, Belle's been resting and sleeping a whole lot, which is great for her overall health and development. We want her to have enough strength before she goes for surgery.

Belle's now weighing in at 920 grams. This is likely her true weight after shedding her extra water over the past few days. 

Kiera was finally able to hold her today. Belle's rested enough so it was a must, and our primary nurse insisted. It's so good for mom and baby. 

I stood and watched while three nurses helped take Belle out of her incubator and place her on Kiera's chest. It's tricky now that Belle's back on the vent. If the tube providing her with oxygen is dislodged from her windpipe it would complicate things temporarily and would be a burden to put back in. 

There were no issues, however. Arabella loved her time with mom. She opened her eyes a few times to observe her surroundings but was generally in a comfortable, sleepy state. After being placed back into her incubator she settled down very quickly and went back to sleep. That's a great sign that she was comforted throughout her holding time.

It's been over a week since either of us have held Arabella, so it was well overdue!

Belle Update: Mar 21

Little tinkerbell was resting nicely. In today's picture you can see Kiera's hand as she gives Bella a Q-tip (essentially) that's been dipped in breast milk. She'll suck on it and will often times grab it herself. 

Usually when Arabella is being fed through her tube, we give her these Q-tips so that she associates the actual taste of breast milk with her feed. Baby gets used to the taste of mom's milk along with the feeling of eating, so the link there is made - and it's overall a great way to soothe the baby. 

It's another way that we can bond with her. We can tell that she really enjoys it. 

Belle went down in weight again last night, so she's sitting at 840 grams. I suppose all of the extra water weight she had before is finally out of her system. I'm sure she'll climb back up soon.

Today during the doctors' rounds they spoke about the possibility of giving her another round of drugs for her PDA (if the surgery doesn't happen in the next few days). That really worried us, so we let them know that we can't go through that again. 

Her PDA is massive, and one more round of drugs won't magically close it. I think the doctors know this too, so I'm not sure why they're pushing it. We had such a horrible scare the first two rounds, so Kiera and I are going to push-back on these drugs as much as possible. 

Right now our doctors are in contact with the surgeons at Sick Kids hospital to figure out when this surgery is going to happen. Arabella will have to go across the street to have the operation performed, and she'll stay there post-op for a few days until she recovers. Apparently their pediatric surgeons are amazing. 

We're praying and hoping for the best.

Belle Update: Mar 20

Miss.Arabella is doing much better today. She's recovering from a long and busy day yesterday.

Rest up, little one. 

They were doing a heart echo on her this morning when we arrived. They keep checking up on that artery to see if there's any progress, but the murmur is still very loud. There's almost no way around it. Surgery might happen in the next few weeks, we will just wait and see.

We really miss holding Belle. I wish I could comfort her (and comfort myself too). It's a helpless feeling.

But this ventilator is giving her a break, so we'll allow her to regain her strength and give her some space. It's too difficult to bring her out of the incubator given what's going on right now. The tube in her windpipe makes things tricky too, and we don't want Belle to be in any discomfort, especially when we're holding her. 

Last night she weighed 870 grams. A slight dip down, but she'll come back in the next few days. Her feeds are steady at 11ml every two hours, and everyday they'll go up an extra 1ml as long as she continues to tolerate them. 

Another good thing is that she no longer needs a PICC line (an IV that supplies her with extra vitamins and nutrients). Now she gets everything she needs mixed in with her breast milk (since she's been tolerating her feeds so well).

Way to go Bella. She's stable, and she's on the up. 

As nice as it is to celebrate the milestones, we know we have such a long way to go. There is still so much uncertainty ahead of us.

When we look back, however, it's amazing to see how far we've traveled. Day by day, we sometimes feel lost. That's because we keep looking at the ground in front of us and it feels like we're not getting anywhere. 

All it takes is a little perspective. 

Look at where you started from, and look how far you've come.

Back on the vent

Arabella went back on the ventilator this morning. She was struggling a little too much last night. At least this should give her a well-deserved break and it will supply the extra breaths she needs. 

The only problem is that the ventilator can cause its own issues for preemies. Hopefully she won't need it for too long.

It's a balancing act.

Poor girl has been working so hard. Her lungs required constant high-pressure (via the mask you see in most of her pictures) and it takes a lot of energy out of her. 

Just as Belle is tired and weakened, we too feel a similar tiredness. We share in her struggles.

It's been a busy day. The last few days have been somewhat exhausting. 

Kiera has pretty much fully recovered from the c-section so we've been walking to and from the hospital a lot lately. In a way, the walks have helped us get through these tougher days. We hold hands and talk about everything that's going on. Fresh air does wonders. 

Spring is in the air. 

I'm glad we're going through this together. It's a roller-coaster, and this week has definitely taken us for a ride. 

Belle is receiving some inhaled nitric oxide (iNO) and it's apparently helping her a lot. She's recovering quite nicely so she'll definitely get her rest now. 

A chance to re-group. 

All we care about, though, is getting Arabella home. At times it feels like this is never going to end.

We ran into a young couple with their newborn in the elevator at the hospital today. The boy was two days old (the couple told us) so this family was on their way to take their little one home. A few babies in our NICU area have been going home too. 

"One day, that'll be us" we think to ourselves. "One day."

Her fourth transfusion

She received a blood transfusion at 7am today. I think this is her fourth. We're losing count. By 12pm she'll be back on her regular feeds, so the transfusion only interrupts a total of 5 hours (of her being able to eat). And by tomorrow she'll hopefully be back to her normal self 😊

Arabella looked tired and pale last night when we saw her. She's on all kinds of new medications too, so Kiera and I gave her a break from skin-to-skin and only hand-hugged her. Just holding her hand with your finger can be a connection.

We'll take whatever we can get with our baby girl. 

Belle's going through a lot right now. She's struggling with this PDA, pulmonary hypertension, edema, anemia. There is a lot on her plate.

So we gave her time to rest the last few days. Belle's been working too hard lately it seems. 

Holding her is very important, though. Babies need skin-to-skin. The love and touch of a parent is something doctors and scientists can't mimic or replace. We all know this. But it actually does help babies thrive - and there's research out there to prove it. 

Babies tend to grow more. They sleep more. And proper rest = development. It makes total sense when you think about it.
When we can't do skin-to-skin with her, we simply talk to her. We touch her very gently and cup our hands around her bum/legs or around her head/arms, depending on how she's laying. That sort of hand-hugging creates a barrier for babies and it mimics the womb. Those barriers make her feel calmer. If she throws her hands up, we'll be there to provide a safety cushion around her and keep her contained. 

She can hear us talking to her. She can smell our scent. She knows we're there for her.

She's always listening, and she has a way of talking back to us too. She reacts to our voices and gives us her own cues. It lets us know she's aware. 

We're learning to read her - and she's learning to read us. And together we all continue growing and learning from one another. 

Happy 'one month' Arabella

We softly sang 'Happy Birthday' to her today.

It's been one month since Arabella made her first appearance in this world. 

They tell us to celebrate the milestones. So cheers to that 💗

Belle's world involved challenges and obstacles the second she came out, but she's done very well given her circumstances. 

We're blessed. There's no other way to put it. 

She was barely one pound when she came out, and now she has almost doubled in size. 

Doctors gave her very slim odds, but this little girl is proving to everyone what she's really made of. 

It turns out she's made of divine grace and mercy, of hope, faith and love. 

Amidst her odds, she has persevered. 

Happy one month baby girl. 

So let's say goodbye to this 'first month's' chapter. This month we have overcome countless setbacks. There have been some really terrifying days and nights. But we've kept on treading. It's what anyone would do. 

You would do the same.

Belle would have been seven months (roughly) in the womb at this point. And she's been out for one month already. When I think about that (in those terms) I begin to realize the magnitude of the situation. 

Often, it's overwhelming. Especially the bad days. When you receive troubling news from doctors, your mind will take you down a deep dark hole. But you can't allow the darkness to take you. 

You won't sleep, you'll be anxious. You'll google. You'll research. You'll pray, and pray, and pray, and then you'll google some more.

It feels like I'm taking a degree in neonatal studies some days. But I need to know what Belle's going through, like what drugs will impact her in what ways. You have to find out as much as you can. Whatever happens to her now will have life-long effects. A lot of stuff matters now. Every detail can be important. But we're trying not to get lost in everything, too. We always find our way back to normalcy, and that's pretty much our life. 

The three of us now, as one unit. One new family.

From our little family to yours, we're celebrating with you. Cheers to you and your family unit, wherever you are. In Canada and Poland, in places like Japan and Brazil. We're all united. 

We're so thankful for everyone's continued prayers and support. We have found a lot of strength through you, believe it or not.

So that's why we pray for all those who give us strength, too.