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!

 

Love

It was now the New Year and I had so much to be grateful for.

My baby girl was loving life at home and was healthier than ever.

She also had a new best friend: our dog Rio.

They loved having naps together. “Sisters”.

Life at home definitely agreed with us all.

I was getting used to life with the night time caregivers. Baby girl was happy and growing.

Of course I still had my moments when I would get a bit overwhelmed by worrying thoughts…

Was the caregiver awake?
Was she watching baby girl every second?
Was baby girl alright?

And there were also times when my biggest fears would also pay me an unwanted visit…

Would my baby girl ever be without oxygen?
Would she ever be free of the tracheotomy?
Would she be able to have a voice someday?
When? When? When?

I had learned that the best way to deal with these fearful thoughts was to acknowledge them and then let them go.

I couldn’t let them linger at all because if I did they made me feel scared, helpless and sad. I couldn’t allow myself to feel that way because it was not healthy for me or my baby girl.

I also knew that I had to chose positivity and hope above all, always. That had gotten me this far and it would take me all the way, as long as necessary.

Besides, my baby girl was home, happy and healthy.
Gratitude overcame fear every single time.

And things were settling into place at home.

I had developed my at home routine with baby girl, the caregivers and the equipment. Once a week I had to clean and disinfect baby girl’s equipment and tubing.

The only interruptions to our routine were the excessive hospital appointments that the doctors wanted baby girl to have…

They included pediatrician, eye doctor, ENT, lung specialist, speech pathologist, physiotherapist, etc…

The problem with all these appointments was that no only were many of them not necessary, but also that they required us to go to the hospital in the middle of winter, which meant RSV and flu season.

I decided I was not going to simply take her to all the appointments just because this was the general standard.

I met with her main doctor and discussed which were the really necessary appointment that were important for baby girl at this time. Turned out we could actually skip most of them!

Baby girl only needed to be followed up by her pediatrician, ENT and lung specialist at this time. This meant we would only need to go to the hospital every 6 to 8 weeks instead of nearly every week…

It made me wonder how many poor moms and dads take their preemie kids to tons of post discharge appointments without really knowing if they need so many appointments at all.

I was lucky to be able to speak up and question the doctors decisions. That allowed me to get more specific information related to my baby girl rather than a general “this is what we always do” approach.

By now I had gained enough confidence in my own instinct to know when to follow the doctor’s orders and when to questions them or challenge them.

I felt that my instinct was my most valuable strength when it came to advocating for my baby girl.

And it was my instinct that let me know that my baby girl was ready to start eating solids.

Baby girl was still breastfeeding and I was now going to introduce purees. I was so excited to feed her!

I had her new high chair and the Baby Bullet. I started making her purees with my Baby Bullet, it was fantastic. I could make a large batch and freeze it.

I started with quinoa pureed with banana, wheat germ and coconut milk.

She loved it!

She started eating right away without any issues. She loved food!

I was so proud of her. She had come such a long way.

I continued to make all of her food at home because I could chose the combination of flavors and ingredients myself, and this was healthy for baby girl.

She quickly started eating lentils, broccoli, kale, brown rice, chicken, turkey, steak and greek yogurt among other things. Always pureed for now as she was just starting out.

She was a great eater and would get very happy at meal time. She was definitely a foodie!

I was grateful as this would make it a lot easier for her to grow and put on weight, which is always a challenge with preemie babies.

I felt so thankful. I felt that I had gotten a break on this. She was breastfeeding on demand and now eating solids without any issues whatsoever.

After so many struggles with other things, I felt truly lucky that I didn’t have to struggle with her eating.

I was very aware of how fortunate it was that baby girl was able to eat orally. Most trached babies needed a G-tube – gastric feeding tube.

My baby girl was one of the lucky exceptions.

I knew how special it was to be able to experience being able to feed her and watch her enjoy the food I had made for her.

In a sea of uncertainty, I had learned to appreciate the simple and often most important things.

Like the first time she played with her toys at home.
Or the first time she sat in her high chair.
Or the first time she had pureed food.

It was these simple yet mighty moments in our journey together that gave me infinite joy.

I cherished every single one of these precious moments with my baby girl.

Not a fear in sight.

It was all about the love.

Food love.

Baby love.

Love.