Coming home (empty handed, again)

Arabella is starting to look a little puffy from her hypoglycemia medication (a common side effect). We'll have to keep an eye on her swelling and hope it stays manageable. 

Being puffy never helps. Belle's constantly dealing with a mask and straps that dig into her nose, cheeks and ears. 

She ends up looking like this half of the time 😄

We try all kinds of methods to ease the tension and pressure on her face, but sometimes there's no getting around it. Lifting her mask periodically and massaging her only does so much. The thick protective tape and rolled up gauze can only go so far, too. 

During yesterday's family meeting the doctor mentioned that if low blood sugar isn't treated properly it can harm a baby's brain and development. I had no idea it could be so serious. That's why the nurses poke her so frequently, because it really is necessary. Puffiness (and water retention) isn't such a bad thing in comparison.

Yesterday's meeting confirmed everything we sort of knew and felt - we're getting closer to the finish line, but we're not quite there yet. More hurdles might be around the corner. Sit tight for now. 

It feels like there is a new battle being waged each week, while Kiera and I grow weary and tired. At times, it feels like we can't keep up. 

Tonight we packed up our belongings, checked out of our downtown rental suite after 3+ months, and went back home to Pickering. 

I'll admit, it was tough to come back. Coming home without Arabella is difficult on a regular night, but tonight was especially hard. Maybe we were more tired and exhausted, but everything just wore us down tonight. 

I don't want to sound ungrateful. We have a lot to be thankful for, but at the same time we imagined having her home with us by now. 

It's been a long journey.

Sometimes we all just need a moment for ourselves, I suppose. It's okay to feel a little selfish, even though you know you probably shouldn't.

I really wish she was here with us tonight 💗

Family meeting

Mondays are always back to business. There's a certain heightened tempo inside the hospital on a weekday. More staff coming and going, more visitors, more procedures going on, more commotion.

In addition to the Monday pandemonium, our room is back at full capacity. It feels so incredibly busy sometimes. It makes us reminisce about our Mount Sinai days, and the private room we used to have.

Currently, a newly admitted micro-preemie can be found in a spot across from Arabella, and another one right next to her. I can't believe the size of some of these tiny miracles. They look just like Arabella did. 

Godspeed little ones.

Belle is the tough kid on the block right now. Don't mess with her, otherwise she'll take your breast milk! 😄

Kiera and I sat down with the doctor this afternoon to go over next steps, and Arabella's future. We've been meaning to have a family meeting like this for a few weeks.

Clearly, it's been a long campaign for all of us, but we still have a long way to go. The great news? The scariest and worst is definitely behind us. 

Arabella's chronic lung disease is her biggest opponent. She's still very pressure-dependent, so our next objective is to get her off the CPAP mask. Once she doesn't require any pressure, she will likely continue on oxygen support. That will be a lot easier on her digestive system, unlike the constant pressure she's getting now. 

Then she can start learning the combination of 'suck, swallow, breathe' required for babies to either nurse or take a bottle. That might be a process on its own, but we'll cross that bridge when we get there. 

The doctor spoke of many "if" scenarios. Some good, others not-so-good, but every scenario is a manageable one. Why worry now, I suppose.

Arabella's bone fractures are healing very slowly. She's still very fragile, and will be for a long time to come. We're still waiting for DNA tests to give us more details. Is this just a severe case of prematurity, or something more? 

She's a delicate flower - that's how the doctor described her at one point today. She's basically going to be a child with special needs as she grows up. Extra precautions will need to be taken around her, of course, and she'll continue to be followed by specialists likely for years to come. 

In the next month or so, we might be transferred to a hospital closer to home (which is a wonderful thought) but Arabella's lungs need to get much stronger first.

It's all going to take time, so get comfortable. At the same time, count your blessings because the worst is definitely behind you. 

Arabella (8 days old)

When we feel frustrated or helpless throughout this journey, this is all it takes to help us along. 

Everyday is really a gift, isn't it?

A day in pictures

Zzzzz.

Good morning world!

*Yawn* 

Is it time to eat yet? Who will wipe my mouth? 

And where's my soos?

There it is! 

Thanks Mommy. Now I need you to hold it for me. 

Also, I have a surprise for you in my diaper. Shhhh!

What's this nurse doing? Oh!
Sitting up isn't so bad. 

Ahhhh, never-mind! Put me down! 

Is this the food I didn't finish from lunch? Do I have to eat these leftovers?

That was too much fun you guys. 

I need a moment now.

I love it when my parents hold me. Somehow I feel better when I'm closer to them. 

Dad talks to me constantly. I don't want to make him feel awkward, so I pretend like I'm listening. 

Maybe he'll stop if I just close my eyes. 
Oh good, he did. 

How did I end up back here in my crib?

I wish I could take this mask off. It hurts my face, and the air upsets my tummy. Mom and dad tell me that I'm being really strong. They keep telling me that one day they will take me home. What is home?

Hmm...I wonder what this "home" is...
Zzzzz.

Day 100

100 days in the NICU. 100 celebrated days with Belle. 100 consecutive nights of thanking the Man above before I close my eyes. 

As you know, we have a lot to be thankful for 😊

We put these special reminders like '100 days' into our phones and calendars so we can appreciate how far we've come. It encourages us to keep going and keep fighting. 

Clearly, she's the only encouragement anyone would need, but it's really about celebrating these moments. It fuels us. It's about owning this experience (so it doesn't own you). 100 days isn't even that much if you think about it, but it's not about that at all.

It's about turning negative experiences into positives ones. 

It's a coping mechanism too I suppose. This, and similar kinds of encouragement, is like the extra push. The second wind. It's like the extra cup of coffee to help you through the workday (just get me through til 5pm!).

If you were to ask me, though, even a day or two in this type of atmosphere will change a person. 1 day, 100 days, or 1000 days - fear is fear, and it shakes you to the core. The thought of losing someone you love, watching them fight or struggle, and witnessing some of the things that happen to other families here will surely provide you with a new outlook on life. 

Arabella celebrated today by "accidentally" pulling out her own IV, and we joked with the nurses that she's secretly trying to break out. She's often pulling on her mask and attachments as well, doing her best to yank them off. 

One day she'll make the great escape, we just know it! 😄

Belle's strained voice

Somewhat of a busy day for Miss Ara.

She's been off the ventilator almost 3 weeks, and we're still waiting to hear a clear and full-volume cry. Doctors were wondering if she has any vocal cord paralysis because her voice is very strained and hoarse.

Preemies who have been on the ventilator for a long time might not recover their full vocal powers for a couple of weeks. But sometimes there is a chance of more damage, so today ENT specialists investigated whether her vocal cords are moving as they should be.

It was interesting to see this all unfold. 

In a small amount of cases, a PDA ligation (which Belle had) may cause accidental damage to a nerve that passes near the ductus and controls the vocal cords and movements of the diaphragm. An injury to this nerve could temporarily or permanently give a baby a hoarse voice. It can also increase the risk for accidentally aspirating food into the lungs (because the vocal cords might not close tightly when she swallows), or might make it difficult for her to take deep breaths.

The ENT specialists took a tiny telescope/camera through her nose and took a look at her airways to check if her vocal cords move back and forth. The procedure is called a laryngoscopy. 

Thankfully, both of her vocal cords looked good. Her airways might still be irritated and swollen from her time on the ventilator, but that should explain her raspy and sometimes silent cries. 

It will take time for her voice to get back to normal.

We're relieved. Her airways are okay. 

Arabella might need to go on a reflux medication soon, but almost all preemies have reflux issues, so it's nothing out of the ordinary. 

We're so fortunate. I can't stop repeating myself!

Eventually, Kiera and I will look back on this time when Belle's fussing was still easy on our ears 😄

Video: Strained voice

In this video clip you can hear Arabella's strained voice. When she's fussy she may grunt and groan, and occasionally her cries are silent.

Video: Loves her head rub

Here's a short video of Arabella enjoying a good old fashioned head rub (while she was still on the cannula) 😃

Return of the Smurf

Let's welcome the return of our beloved baby Smurf 💙

Belle had to go back on the mask this morning. The cannula proved to be too much for her, but we're proud of how hard she battled. She went the distance. 

Now Belle can have a deserved rest and hopefully recover from all of the extra work of breathing. Maybe we'll try the cannula again next week. 

Belle seems to require a certain amount of air pressure in her lungs, otherwise she exhausts herself. The cannula just can't deliver the kind of pressure that the mask can. 

The great news is that her lungs will only grow stronger with each passing day 😃

I see you! Belle on the cannula (yesterday)

Belle's fussy demeanor yesterday wasn't a morphine issue - it was likely a breathing issue. 

Arabella acted more like her regular self today after being placed on the mask. She settled down quicker, and her vitals were much better. Kiera and I took a sigh of relief. We can breathe easier now too 😄

It's hard work out here for a tiny Smurfette. She's had to deal with a rather fast tempo, and a lot of sudden changes (sometimes a few at once). 

It's okay to slow down. Take your time little one. Take all the time you need.

Metamorphosis

She's still working hard to breathe on the cannula, but she's holding her ground. Belle's one tough girl! 

Today she just didn't want to settle down like she typically does, and it was obvious that she was extra agitated. We tried everything to comfort her. It's hard to pin-point the exact cause of her frustrations sometimes. 

We know that it's perfectly okay for her to be fussy here and there. That's expected. But today it was a visible and prolonged state of displeasure. Her breathing was irregular. It took Belle longer to relax and get comfortable. Her sleeps were much shorter and lighter.

Something wasn't quite right. 

Soos patrol could barely help.

It could potentially be the morphine. The IV drip was finally turned off last night, after weeks of weaning her down to almost nothing. 

Belle might have noticed 😮

She's always been very sensitive to even the smallest change. 

Into the late night, Arabella got quite unruly, and the nurse eventually gave her a tiny oral dose of morphine. It was a tiny amount but it seemed to do the trick, and she was finally able to calm down. 

The nurse wrapped and bound Arabella tightly, and she lay like a cocooned caterpillar 😁

Perhaps she's working on her transformation, a metamorphosis of sorts?

You can't just rush through the caterpillar stage. It takes time to flourish - and one day Belle will surely emerge as the butterfly she's always been destined to be. 

One day she will soar 💜

Belle Update: May 23

She looks like such a big girl! 😍

Arabella had a quick moment of reflux this afternoon, so the nurse sat her up for a minute while she settled. 

Belle is still on the cannula. Her breaths have been generally short, quick, and at times very deep. She's working harder to breathe compared to the CPAP mask, but she's been a tough and strong girl up to this point, so for now the staff are going to keep her on the cannula. 

The nurses ensured us that she's being closely monitored, and we need not worry. They can always go back to the mask if Belle falls behind and needs extra help.

Kiera had a hard time watching her little girl breathe so quick and heavy. I agree that the staff are pushing Arabella a little too quickly, but on the other hand they really are watching her constantly. 

Kiera herself said that she was overdue for a good cry today. She needed an outlet for her frustrations. We lightened the mood by joking that mom might need the CPAP mask soon too, to help her breathe and keep her calm. Can we get that in an adult size, please? 😄

Both of my girls were tuckered out eventually 💗

It's not easy for mom sometimes. She's been worried about her Tinkerbell during the transition from ventilator, to CPAP and now to the cannula. She remembers the moments when Belle has struggled to keep up, and the set-backs that have occurred in the past. 

Everything is going to be alright. We just have to put our complete trust in the staff, and sometimes it's not easy. Parents can feel frustrated and helpless during this process, but that's totally understandable and even expected.

Parents always want to save their children from any type of struggle, no matter their child's age or size. 

God bless all the parents out there 💙

Belle Update: May 22

I love her fuzzy little hairs 😀

So much tape on her tiny face, but she needs it to hold the cannula in place. 

We noticed that this new way of delivering airflow has slightly affected her work of breathing. Belle's using more energy to breathe, and it tires her out quicker. It might take her a few days to get used to it. 

I think she can do it. She is Tinkerbell, after all. Small but mighty!

She was a touch harder to please today, but it's likely due to the cannula and the extra work she had to put in. I hope she can continue to stay on it. It must be so much more comfortable for her. When she was placed on her tummy this evening she really enjoyed burying her face into the pillow, something she couldn't really do before, since the mask and tubes were always in the way. 

She absolutely loves getting her head stroked and massaged. So many smiles 😊

I mentioned before that Arabella's receiving a new medication to stabilize her blood sugar. One of the side effects of the med is water retention, so she'll also need to take a diuretic to help her body get rid of the extra water. Hopefully she won't get too puffy. We like to see real baby fat, not that fake water stuff! 

The doctors had Arabella on a continuous feed today, so instead of feeding her 23ml every 2 hours, it was a very slow and constant feed, mainly to see how her blood sugars would respond. Who knew she could be fed continuously?

Always eating...I wonder how that would feel? 😄

We might be dealing with her sugar levels for the next few months, but it's nothing unusual for some preemies. Not a big deal at all!

She's such a good girl 💜

Sunday kind of love

Sleeping beauty 💗

It was a sweet Sunday spent with Belle. Weekends are the best days to be here since it's practically empty at the hospital. Everything slows down. It doesn't feel so chaotic. 

I swear, I'm not sleeping on the job. Kiera happened to catch me stretching my neck. It hurts from constantly looking down at Belle while she's in my arms. I know, poor me, right? 

Can't. Stop. Admiring. Baby. 😀

Dad's been doing cuddles everyday, sometimes twice a day, and I'm really starting to feel it in my neck because I just can't keep my eyes off of her. Yes, she's precious, but also due to the fact that I'm watching her visual cues all the time. Maybe a little too much. Dad needs to chill and relax more. Belle is a strong and independent woman, after all. 

Many diaper changes were made today, and I mean a lot. Belle's a poopin' machine lately, and we go through diapers pretty quickly. Good thing the hospital doesn't charge us by the pamper!

Overall, Belle's such a good girl. She doesn't give us any problems, although she might get a little fussy from time to time. It's very typical stuff. Usually she wants her soother, and that's why 'soos patrol' must always be on duty. 

On the double!

It's all hands on deck for Arabella. Constant love and comfort.

It's been so enjoyable having Belle in the crib. I never thought it would be this good. We're interacting with her on a new level now, without borders or barriers between us. I can lean in anytime to kiss her cheek, or whisper something in her ear. It's empowering, and it makes us feel more like normal parents. 

We gave Arabella a bath this evening by lifting her over a bassinet and pouring water over her gradually. We even shampooed her tiny little hairs. 

Prior to the bath, a respiratory therapist helped take off her mask and attach this 'nasal cannula' so that Bella could finally get a break from the constant pressure of the mask and its attachments. 

This cannula is much easier on her. It doesn't press into her face like the mask does. Comfort aside, we'll see if Belle can maintain her breathing rate on this new apparatus. It doesn't have the same pressure as the mask, but who knows, maybe she'll do really well and surprise us?

Admittedly, mom was a little freaked out at first. She's wasn't sure if Arabella's ready for such a leap ahead. 

Mom needs to relax too. Arabella has surprised us before, so we need to let go and see what she can do on her own. 

She's progressing, and therefore we should too!