Worried sick about being sick

Every time I look at her I'm absolutely stunned by how big she's getting. "Where did that tiny thing go?" 

I'm probably going to be saying that for a long time 😊. Belle just continues to get bigger and bigger with each passing day.

"We'll wake up one day and she'll be in college," I constantly warn mom. 

Unfortunately, Miss Arabella hasn't taken a full bottle in the last 3 days 😕. She was on a roll for a while, but now she's hit a wall. 

It's not the end of the world, though. On average, Belle is still taking at least half of the bottle orally. The other half gets topped-up via her feeding tube. 

Kiera and I have started to log her oral intake, and we're working like detectives trying to crack a big case.  

"Is it the nipple? Maybe she's constipated? Is her reflux getting worse? Could it be the preemie formula?"

All you can do is follow the clues, but it doesn't mean you'll get answers. This feeding business is a strange predicament and we're trying all sorts of things to figure it out. 

We felt so disorganized today.

We had our pediatrician appointment this afternoon, so we had to adjust Belle's feeling schedule. It didn't seem to make a difference, though, because by the time we got home we were all hungry and cranky 😄

Speaking of cranky...

Arabella has been more out-spoken lately. Her voice is still a little raspy from her days on the ventilator, but she's getting louder and more boisterous. She's determined to communicate her frustrations, and sometimes I think she's starting to show her true colours. But she's still a very good girl!

She's up to 4.5kg now (almost 10lbs). We're entering double digits!

The pediatrician didn't do very much for us today, other than record Belle's weight and warn us about the looming fall and winter season ahead. "I expect her to get sick", he said, "It's bound to happen. And if she gets sick she won't want to eat. She'll lose weight. Be ready for it. Figure out a plan for emergencies, the nearest good hospital..." and it went on like this for a while. He pretty much said the same thing during our first visit. 

Doctors are always telling us about the worst-case scenarios. They want us to be prepared, I suppose. 

During cold and flu season, Arabella will get a shot every month or so called Synagis to help prevent against RSV (respiratory syncytial virus). The cost of the treatment is steep, over $1000 a month, but luckily we're covered for it since Belle's a prime candidate. Her small birth-weight makes her extra vulnerable. 

RSV is a very contagious virus that gives most people a common cold, but to infants it can be more serious. The virus is dangerous because it can lead to a lower body infection (like pneumonia or bronchiolitis), with breathing problems serious enough to require hospitalization. Some babies even need to go on a ventilator while they fight off the virus, and in a few cases (less than 5%) it can be fatal.

It's scary stuff, and it's the main reason that mom's and dad's of preemies get a little nuts from October until April. 

Boy, I sure love that smile of hers. All I want is for her to be healthy and happy. 

We spent the rest of the day trying to forget our chat with the doctor. We played, napped, cuddled, and read stories. Those are the things that we all enjoy the most 💗

Preemie-proofing

Sometimes Kiera and I joke about bubble-wrapping Arabella, or putting her in a room behind glass 😂

It's a silly thought, but wouldn't it solve a lot of problems? It would make things so much simpler for everyone. No rules! No hand washing necessary! Anyone can come over at anytime!

I like the glass room idea. I can just picture it now...

It would turn into a zoo pretty quickly, huh? 😄

"Come see the former micro-preemie in her natural habitat! She's a modern-day miracle! Born at merely one pound!"

"She growls! She's smiles! She poops and she pees!"

We could post a few signs on the glass. "Do not feed the Bella" and "No flash photography!"

We could open up a little kiosk, and make some extra income while we're at it. "Bella t-shirts! I have Bella t-shirts here! Five dollars!"

So I guess we won't put her in a bubble. Fine. 😛 But we can do the next best thing. We can preemie-proof our home and our habits. 

There are only a few arrangements and precautions, and most are aimed at helping avoid colds and other infections.  

Here's what the preemie book says:

"Do take your preemie outside, but don't expose her for too long to strong drafts or direct sunlight. When she's out and the sun is shining, protect her with a wide-brimmed hat or parasol. Don't apply sunscreen unless your pediatrician advises you differently; sunscreen isn't safe until a baby is around six months old when she'll have thicker skin.

Avoid bringing her into crowded indoor places like churches, movie theaters, and shopping malls, where there's a higher risk of catching a cold or other infection.

When you schedule visits with the pediatrician, ask for the earliest appointment of the day. If you're the first patient, you're less likely to be kept waiting in a crowded room with sick kids.

Ask relatives and friends to make sure their small children keep some distance from your preemie. Do not visit if you have a cold, the flu, or any other contagious illness. If you or someone else in the family has a respiratory infection, avoid face-to-face contact with your preemie or wear a disposable paper mask when you're spending time close to her, like during feedings.

Wash your hands as soon as you arrive, after blowing your nose/sneezing, diapering siblings, handling raw food, etc.

All preemies, but especially those with chronic lung disease, shouldn't be exposed to smoke, aerosol sprays, strong perfumes, or paint fumes. These irritants can cause wheezing, coughing, and difficulty breathing. Steer clear of smelly floor waxes or cleaning products, too.

Here's a positive note: You do not need to find your beloved pets another home. Allergies aren't likely to cause problems, because babies under about a year of age can't mount a strong allergic response. If your baby has symptoms after that, her doctor will try to determine whether your pet or something else is to blame.

Babies who have chronic lung disease are more susceptible to respiratory infections, which can be severe enough to cause them to be hospitalized. For them, the above precautions about should be continued through the first year or longer (ask your pediatrician)."

I heard that once Arabella makes it through her first winter it should get a lot easier on all of us. And by April of next year we'll be able to relax a lot more.

Until then we'll be a little more isolated and guarded, and we'll keep those tips and precautions in mind. 

It's nothing crazy, right?

Mixed emotions

"Researchers have found that most parents of preemies have regained their emotional balance by their baby's first birthday; a minority of them need longer but generally feel that their anxiety has finally subsided by the time their baby turns two."

Interesting...

Most of my tidbits throughout this blog are from a book called "Preemies - Second Edition: The Essential Guide for Parents of Premature Babies". It has been a great resource for me since day one 😊

Let's see what else it has to say...

"Some parents of preemies get worried by what they perceive as disturbing feelings in themselves, such as irrational fears, excessive protectiveness toward their baby, and a desire for isolation. If you respond like that, you're not unusual."

But there is good news...

"Over the next few months you will become gradually less distressed and more attentive and responsive to the rest of the world. You'll get back to your old emotional self..."

Those were excerpts from "Chapter 7: Finally taking your baby home". When Bella was in the NICU and I was reading those chapters (about life at home), it seemed like such a distant and far away place.

And now here we are...it's almost hard to believe. Home just feels so good 💗

For the most part, I think Kiera and I have done fairly well in managing our emotions. We're doing the absolute best we can. And coming out of our shell will take time. Let's face it. After some anxiety-filled days at the hospital, it's kind of hard to put it all behind us and pretend that Belle's just a regular baby. 

She looks like a regular baby. It's true. But her lungs and immune system are far from ordinary. 

She's had so many set-backs in the past, and we've seen how things can spiral out of control.

Sometimes it's just hard to ease the fears. We can't help it. And as we slowly enter cold and flu season (in October), we'll likely be even more paranoid and afraid.

At least we're aware of our behaviour, so we're definitely not in denial! 

Step one: Admission and acceptance.

Maybe there's a twelve step program that we can join? 

"Hi, my name is Dan and I'm a preemie parent...it's been 20 seconds since I last washed my hands..." 😄

Oh man.

We know that we can't be over-protective parents into the future. It's not good for Arabella's development. She needs confidence and encouragement from both mom and dad. It's something that Kiera and I will definitely have to work on as times goes by. But this whole 'adjusting to normal life' stuff isn't as easy as people might think. 

First of all, what's normal? 😛

Belle is still dealing with a lot of stuff, and we're still dealing with our own emotions. It's going to take a long time for us to loosen up...is all I'm saying 😊

Hit the bottle

She enjoys her bouncer. It's one of her favourite things, but after 10 to 15 minutes she starts to pout and cry. That's her way of telling us that she's ready to be picked up 😄

"Dadda, take me for a walk around the kitchen and living room again", she says.

Arabella had a fantastic day. She finished 4 entire bottles today!

She broke her own record, and mom and dad were very excited for her. It was almost 5 bottles, actually. She happened to leave 20mL after her 9pm feed because she was just too tired.

Yup, kind of like that 😂

We celebrate every finished bottle in this household, and we've been doing a lot more celebrating lately. Yesterday dad enjoyed a cold beer during the hot and humid afternoon, and we joked that Bella and dad must each drink until their bottles are finished. 

I'll cheers to that!

Switching Arabella over to the regular-flow nipple seems to have payed off. Now she can conquer a bottle without getting too tired. The flow is a little quick for her sometimes, but on the bright side she doesn't get too bored. If she's overwhelmed by the flow, we'll see her start to slow down and pace herself. Usually...

Today she finished her 3pm bottle in under 15 minutes and Kiera and I looked at each other in disbelief. "Did that really just happen?" We also wondered how her stomach would handle the volume in such a short time. In the NICU we had her feeds running for over an hour sometimes because her reflux was so bad. 

But Belle doesn't seem phased anymore. 

She's been tolerating her feeds exceptionally well at home. Maybe we're not too far from removing that feeding tube, after all! 

We know that Belle can take a bottle now, so hopefully we can transition her exclusively to the bottle in the near future. Maybe it means waiting for her hunger cues, and not sticking to a set feeding schedule like we do right now. As long as her total fluid intake is the same, we should be okay. 

We'll see our pediatrician this week, so we'll make sure to have a chat about this.

Way to hit the bottle Arabella! She's totally taken the bottle-feeding dilemma and turned it on its head!

Beautiful Sunday

"A Sunday well spent brings a week of content."

Today happened to be a gorgeous day, so I kindly asked my dad to snap a few pictures of us in his backyard. It a was quick and impromptu session, but we managed to capture some great moments. 

I guess this was our first real family photo-shoot!

I think some of the sweetest moments are captured when people don't actively look at the camera. The best thing to do is just interact with one another, and let the person behind the camera snap away. 

The outdoors are still overwhelming for Arabella, but she's slowly getting accustomed to it. Maybe some fashionable shades would help? 😎 I think we have some at home somewhere...

We can't have her out in the sun for long, anyway. Doctors orders! Apparently the reflux drug (Omeprazole) she's taking would cause her skin to burn up quicker in the sun. We would have to douse her in sunscreen, and it's not really worth it for a quick session.

It feels great to be doing typical family stuff with Belle. We're just an average family now...doing average things on a Sunday afternoon.

She was so tired after our quick outing, but I'm sure she enjoyed the fresh air. The rest of the day went really well for her, and all three of us had a restful and relaxing Sunday. 

Wishing everyone out there a great week ahead 💗

Videos: Arabella at home

Arabella had a lot of videos of her in the NICU. I'm glad to finally post a few videos of her at home. Here are 3 of my favourite ones from her first week.

Adapting and adjusting

Today was Saturday. It was mom's and dad's usual day for tiding and organizing the house. It was that time to dust every nook and cranny, de-clutter, arrange, and put away.

It's hard to feel good in a space that isn't neatly organized, don't you agree? 

Sometimes we let the mess build up a little too long. Then the mess begins to slowly nag us, until we're finally fed up. We're forced to roll up our sleeves and do something about it. 

Since Arabella's been home we haven't had much time to do a whole lot. So today we made time.

We're used to living in a clutter free home. We have a relatively tiny house so we're forced to optimize our space to ensure we get the most out of it.

That means less "stuff" so the space feels more open. It means having less "things" around so that we could enjoy more counter space, for instance.

But now we have a new addition to the family, and as lovely as she is, she brought a ton of stuff with her on move-in day 😄

"Mirror, mirror, on the wall, who's the cutest of them all?"

"Yes! You are!" 😁

We're almost done organizing Arabella's things. It's just a ton of stuff! We're talking all sorts of toys, various clothes and accessories, a slew of hospital supplies, stacks of documents...it goes on and on. 

You'd be astonished at the amount of storage bins a micro-preemie can accumulate! 😄

Surprisingly, it takes a long time to sort through things and dedicate a specific "home" for certain items. It also takes a while to figure out your own space. 

How do you want to use your area to best suit you and your little one? What items need to be within reach? Which items can be stored out of sight? What makes the most sense?

We ran into all of these questions on day one. 

For example, where do used bottles, nipples, and syringes go? In the sink with the dirty dishes? Or a dedicated space?

It's not the prettiest solution, but at least it keeps things neat and sorted. Once used items are washed with soap and hot water, they are placed into a 'washed only' bin where they are ready to be placed into a steam sterilizer. There's no more confusion, it's much more sanitary, and everything has its place. 

We're finally getting into a groove. We're slowly starting to figure everything out...

We're figuring out this little princess, too. She's adjusting nicely to life at home with mom and dad, and we've seen her make awesome progress with her bottle feeding. Today she finished two entire 65mL bottles!

I think she likes it here...

And we love having her here 😊