One

It was now April 2011 and Miss Malena Lola was doing wonderful.

She now weighed 17.6 lbs (8 kilos) and she was crawling everywhere.

She was such a happy baby girl.
She loved crawling.
She loved being able to move and go anywhere she wanted.

It was amazing to watch her be so free and mobile.
And even though she had a tube attached to her trach cradle at her throat, she kept going.

She didn’t care that she had a tube attached to her throat.

She completely ignored her tube and even when she got tangled up, she just kept going.
She just kept playing.

It’s amazing how babies get used to things immediately. Baby girl had a natural ability to maintain her joyous and adventurous spirit no matter what.

She was completely used to having a trach and to having a tube attached to her, so she didn’t spend any time complaining or getting frustrated over it. She didn’t focus on it.

That was a great example to me of living in the now, living in the present, fully. Children have that natural ability to do that.

I was always inspired by her.
I was always reminded to be in the moment and not let myself get caught up in the past or the future.

Being in the moment allowed me to avoid anxiety and fear.

And the present was filled with celebration. We were getting ready to celebrate baby girl’s 1st birthday on April 25th.

It was such an exciting time. My baby girl was turning one!

I was so excited to have a little birthday party for her. We had so much to celebrate!

It would only be a small family gathering as we didn’t want to expose baby girl to too many people, and no kids or babies were allowed. But it would still be a very special celebration.

She even got birthday flowers delivered on her birthday! She was fascinated with them.

I was also really happy because my mom Marina was coming from Argentina and she would be here for baby girl’s birthday.

And baby girl loved every minute with grandma Marina.

It was a wonderful time for all of us. There were lots of positive changes and growth.

I was really enjoying being able take baby girl out more often as the Spring weather got warmer and the snow was finally gone.

Baby girl was growing beautifully and now her first two teeth were out!

She also got to wear her first pair of sunglasses.

And she got to eat first cookie. She loved it of course!

She was also making more and more little squeaky sounds through her trach. It was hard for her to get that air past her trach and through her vocal cords, it required a lot of lung strength as her upper airway was quite narrowed by scar tissue due to her long intubation period after birth.

But she always kept on pushing that air up and making whatever sound she could. It was very cute and endearing.

This year her airway would have time to heal and grow. Hopefully it would grow out of that narrowing and not require further surgery to fix it. Also, her vocal cords were still inflamed and affected by the prolonged intubation as well. They would also need time to heal before they would be able to work properly.

For now I would not be able to hear my baby girl cry or laugh. I would have to wait and be patient.

It was hard at times to watch her try so hard to make a sound and not be able to, but I also noticed that she didn’t get upset by it. She kept trying and kept playing, but she didn’t let it frustrate her.

I decided to have that same attitude and not let it upset me. I accepted that my baby girl would be able to make more sounds and start vocalizing when it was her time.

I trusted that when the time was right her voice would finally emerge.

In the meantime, I realized I could still hear her even if it wasn’t through her voice.
I could hear her mighty soul.
I could feel all her emotions.

She was very good at expressing herself through her eyes, her facial expressions and body language.

I decided to start teaching her sign language to give her another tool to express herself. That way she would be able to communicate even if she couldn’t learn to speak just yet.

She loved it when I started teaching her sign language. She thought it was fun and laughed a lot whenever I made the signs.

We started with a few basic ones like eat, more, milk, sleep, all done, puppy, mommy and daddy.

It felt great to be able to teach her sign language. I felt it was empowering for her to be able to communicate despite her trach.

It was also very good for me because I was able to focus on a positive way to give my baby girl “a voice” regardless of her vocal cords and the trach.

Instead of thinking about what she couldn’t do, I was connecting with what she could do.

This was very positive and healing for me.

Besides, I knew deep inside my heart that one day soon enough I would be able to hear the sound of my baby girl’s beautiful voice. I had complete faith and certainty in that.

And no matter what, at that very moment, as I looked at my baby girl, I was able hear her spirit.

And I knew then that no matter what, I would always be able to hear the sound of her beautiful soul.

Happy 1st birthday to our mighty Malena Lola!

 

Momma Bear

On Sunday, December 14th, 2011, Malena Lola was finally officially discharged from the Alberta Children’s Hospital.

It was an unforgettable day.

I will forever remember the feeling of finally bringing my little girl home after nearly 8 months in the hospital.

I remember the nurses kept asking me if I was nervous or scared, but I wasn’t.
I was very aware of all the risks of having a baby with a tracheotomy at home, but I had spent 8 months at the hospital with my baby girl.

I had plenty of time to get over all my fears and anxieties. I was ready to have her home.

And now the time had come.

No more leaving the hospital every night, filled with guilt and sadness.
No more scary phone calls from the hospital.
No more nurses and doctors interrupting.
No more hospital monitors.
No more hospital room.

We were home.

I remember the first night at home with my baby girl. I spent the entire night awake, staring at her.

A part of me was so relieved to have her home and another part of me was very aware that this was a new stage with a new set of challenges to overcome.

There would be a night time caregiver in our home every night. And as helpful as that might sound to some parents, and it was at times, it was also a huge disruption of our home life.

And we didn’t know how long this situation would continue, because we didn’t know how long baby girl would need her tracheotomy.

It was that uncertainty that made things tough to bear at times.

But I knew that I had to take it one day at a time, otherwise it was just too hard.

And right now it was time to set those thoughts aside and focus on my baby girl being home. I wanted to cherish each moment.

My baby girl was home. She was healthy and thriving.

That was more than enough to fill me with pure joy and gratitude, and erase all the fears and negative thoughts.

I had my baby girl all to myself until tomorrow night.

I had made special requested that we only have caregivers during the week because I wanted to have have the weekends just for us.

When I made that request, the doctors, objected.That was their typical reaction to most of my out of the ordinary requests…

They were concerned that I wouldn’t get any sleep, but I explained to them that even with the caregiver I would still not get any sleep at first. I was going to be watching my baby girl every second until I was ready and comfortable to leave her alone with the caregivers.

Besides, I told them that it was normal for parents not to get much sleep the first couple of years after having a baby, so why would that be any different for me?

So here I was, home with my baby girl all to myself. At last.

She wasn’t able to sleep in her room just yet, but I would go there to breastfeed as often as I could or I would just hold her and look at the window together. I loved her room.The walls were the color of the Caribbean ocean. It was a very happy and relaxing place.

But to make it as safe as possible for baby girl at night, we had set up her sleeping area in the living room, as this would make it easier for the caregivers to monitor her and stay awake all night. We placed both her crib and machines in the living room – a compressor for humidity and an oxygen concentrator.

We had also set up one of her suction machines in the living room, as well as her change table and all her trach supplies.

This allowed the caregivers to be able to monitor baby girl more comfortably and it helped them stay up all night easier, since they had easy access to watching TV, the kitchen, etc.

It also made it more comfortable and accessible when I had to do her trach care every morning.

I remember the first nights with the caregivers at home during the night. I stayed up with them at first, and taught them all about baby girl’s routine and preferences.

I would go to bed at times, but wasn’t able to sleep. All I could do was think about my baby girl.

Sometimes my fears would make their grand entrance into my mind.

How long would my baby girl need her tracheotomy for?
Would she ever be able to speak?
How long would we need to have caregivers in our home every night?

All questions without answers.

I had learned not to dwell too long in these questions. I had learned to acknowledge the fears but then release them and move on.

I couldn’t allow myself to listen to these fears too long because they were useless and ruined my present with my baby girl.

My baby girl was happy and healthy. That was all that mattered.

After a week of this or so, I began to feel much more comfortable and relaxed with the whole caregiver situation.

I had hired my own caregivers so I was very happy with the two ladies I had chosen and I trusted them. I just needed time to adjust to them being in my home every night and care for my baby girl on their own. And even thought I was always just down the hall from them, it seemed really hard at first to just leave my baby girl alone with them.

I thought the hospitalization would have made that transition easier but it didn’t. This was another process I needed to go through.

I think the fact that I had my baby girl finally home after such a long hospitalization made me grow even more attached to her.

But time is wise.

In about a week I was able to let them be on their own and started being able to fall asleep.

The caregivers knew to wake me up if baby girl woke up, as I was breastfeeding her still.

My life was actually now the way a new mom’s life should be: with night feeds, day time feeds and cuddles all around.

My life consisted of staying at home with baby girl all the time except when she had a doctor’s appointment at the hospital.

It was the middle of winter and baby girl’s immune system was still weak so it was essential that she stay away from crowds, children and babies and people in general. A simple cold could send her right back to the hospital.

After 8 months of practically living in the hospital, I wasn’t going to take any chances.

I would stay in until the cold, flu and RSV season was over. It was the least I could for my tiny but mighty baby girl.

A lot my friends and family were concerned that I couldn’t go out or that they couldn’t come see baby girl.

I wasn’t concerned at all.

I was actually very happy to be enjoying this private time with my baby girl. I hadn’t been able to be completely alone with her since she had been born.

I remember some of my girlfriends kept telling that they didn’t know how I did it. They would go crazy if they had to stay home all the time.

I loved it.

I felt like a momma bear hibernating with her cub. I loved being a momma bear.

I had wanted to be a mom for a very long time. I was enjoying every second of it.

I loved seeing her living life beyond the hospital walls.

My baby girl was more precious than I could ever have dreamed of.

She had gone through so much and yet she always had a smile or a joyful energy about her. She had this light, this invincible spirit always shining through.

I was in awe of her every day.

I didn’t need to go outside just yet.
I had my very own sunshine right at home.