Off to the beach!

It’s been months since I have written a post. So many amazing things have happened. Malena Lola turned 3 years old this past April 25, 2014 and she is speaking!

It’s been quite the journey to get to this stage…last year I felt Malena Lola was ready for her airway surgery, but her doctors were reluctant for no clear reason…finally I requested a meeting and demanded clear answers. They had none. I insisted and finally they all agreed that there was no real reason to wait. The surgery was finally scheduled.

It never ceases to shock me how much I have had to push doctors to do what is needed…anyways…

Malena Lola’s final big surgery was last September 2013. She had airway reconstruction surgery which involved lasering the scar tissue obstructing her upper airway and then taking a tiny piece of one of her ribs to shape a tracheal ring. This ring was then placed in her airways to open it up to the size it should be for her to breathe through it.

The surgery itself took about 3 hours all together and was very successful, however the five days after the surgery were the hardest of my life…

After the airway surgery Malena Lola had to remain sedated and paralized in order for her airway to heal properly. It was critical that she did not move at all.

As always, I stayed in the hospital with her, in the PICU. Those five days were extremely difficult because it was very hard to see my very active little girl sedated and paralyzed. And the worst of it all was that she got a lung infection which was hard to treat due to her sedation and all. I stayed with my little girl day and night. I remember feeling so responsible for what she was going through because I had insisted on the surgery…I had to chase away the fear of losing her and remind myself that she was a strong little girl, a warrior, and that all would be fine.

After five sleepless days, she was ready to come out of sedation and paralysis. I couldn’t wait to see my little girl open her eyes and smile again.

After she woke up we spent two days helping her swallow and making sure she didn’t choke.  More sleepless nights but all worth it. Malena Lola was awake, moving, smiling and finally eating again. We could now go home. The surgery had been a complete success.

Now that her airway was repaired, she could start wearing a speaking valve! I had been dreaming with the day I could hear my little girl’s voice for almost 3 years!

I will never forget the first time she made a sound. Sweetest voice I had ever heard. I cried with so much gratitude and happiness!

I remember being amazed at the fact that we could hear her sneeze, cough, laugh, cry…such simple things that we cherish so much.

Malena Lola  took to speaking right away, she immediately loved being able to be vocal.

Her first word was “Booba”, as she loves breastfeeding…and her second word was “teta” which is booba in Spanish.

But something even more amazing happened just this past May 5, 2014 – Malena Lola was successfully decanulated! She is finally trach free!

There were many times when I wasn’t sure if I would ever hear my little girl’s voice or if she would ever be trach free. Now that has all finally happened and I am thrilled for what this new stage will bring.

Malena Lola continues to live each day to the fullest. Never letting anything stop her. She is the most inspiring and joyful spirit I know. She is speaking more and more each day in both English and Spanish. The sound of her voice never ceases to amaze me. I am forever grateful for the journey that brought us to this day.

lola decanulated

Malena Lola is free to sing and fly!

We are off to our first family vacation since Malena Lola was born. We couldn’t be more excited. Off the beach! Ocean here we come!

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!