Category Archives: Baby with tracheotomy at home

One

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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!

 

Gratitude

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It was Spring, and my Malena Lola was now 18 lbs and thriving at home.

She had come such a long way from the tiny micro preemie she was at birth when she only weighed 1.6 lbs.

I remember looking at her and thinking “I can’t believe this is the same baby that was in the incubator back in April…

Now she was  living at home, eating solids, playing in her excersaucer, rolling around all over the place, sitting all by herself and jumping in her jolly jumper.

She was even trying to crawl!

And holding her own bottle with breast milk for practice, because she was still breastfeeding full on.

It was amazing how much progress she had made since leaving the hospital.

Being at home had made a huge difference for baby girl and for me. I was able to settle into motherhood at home and develop my routines at home for baby girl and me.

I figured out where best to place her equipment so that we didn’t have to hear the loud sound of her compressor running 24/7. I trained the night time caregivers to help me clean and disinfect baby girl’s equipment and tubing once a week. I was used to the sleepless weekends without the night time caregivers and enjoying my baby girl to the max.

Things seemed to be flowing naturally and joyfully.

And it was finally springtime, which meant that we could finally go outside as the temperatures were warmer and the snow was melting.

I will never forget the feeling of taking my baby girl for a stroll around the neighborhood for the very first time.

I felt so proud.

I can honestly say I enjoyed every single step of that walk. Watching my baby girl look at everything with her big brown eyes gave profound joy.

But I will admit there were certain days when my mind would bring up negative thoughts and try to make me lose perspective…

Why did this happen to my baby girl?
Why couldn’t my body keep her in my belly?
Why was she born a preemie?
How long would she have to have a trach?
Would I ever hear mi little girl cry and laugh?

And there were also times when I would look at other moms with their babies and I found it hard not to feel angry and bitter…

Why is her baby healthy and mine isn’t?
Why did she get to have a term pregnancy and I didn’t?
What did she do better?
What did I do wrong?

I found it hard not to compare myself with other moms with normal pregnancies and term babies.

I remember having a hard time even listening to other moms complaint about how they had to stay in the hospital for a week or how their baby cried all the time or how they couldn’t wait to get out of the house… I had a very hard time relating to those moms at that time. I simply couldn’t bear to hear them complaint after what my baby girl had gone through.

I just couldn’t relate to their experience. Instead, I found it much more comforting to relate with other NICU moms.

I wasn’t ready to hang out with moms who had normal pregnancies and term babies.
I wasn’t ready. Not yet.

I would need more time to get to that point. For now, I was happy to meet with other moms I had met in the NICU.

It took me a while to come to terms with those feelings. They made me feel selfish. But I had to accept them and realize that it was OK to have those feelings. Just like it was OK to cry if I needed to and to not see certain girlfriends with their kids until I was ready.

It was OK.

I decided to stop giving myself a hard time for having those feelings and instead I decided to just let myself feel all the emotions that I felt. I stopped judging myself.

I decided to make an effort not focus on the angry or resentful thoughts.

I had to accept those negative thoughts and purposely chose to let them go. My main focus had to be on all the positive and beautiful blessings I had.

I remember nurturing the feeling of gratitude a lot during that time.

It was gratitude that healed me through those painful emotions and thoughts.

I had to always remember that my baby girl was alive and healthy.

Having met several other parents during our NICU stay, I became very aware of how lucky I was because many micro preemies don’t survive or they have serious long term complications.

My baby girl had survived and emergency c-section at only 25 weeks gestation. She had survived 3 surgeries and 2 serious lung infections. She had gotten through several blood transfusions, including the one when they gave her the wrong blood type. She had endured an IV burn to her foot that left a scar for life. She had endured being intubated for nearly 5 months and then got a tracheotomy. She had pulled through nearly 8 months in the NICU.

And what always amazes me the most is that she did it all with a joy and zest for life that makes my eyes tear up in admiration every time I think about it.

She never gave up. She never stopped smiling. She always remained positive and happy.

It was this thought that always kept me going. it was this thought that always cast away all the negative thinking.

My baby girl’s strength of spirit always humbled me,  inspired me and brought me back into the light. Into the present.

It always made me feel deeply grateful.

Gratitude was the most very liberating feeling for me. It brought me back to my present and always reminded me to cherish the moment and what I had been so gracefully given.

How could I not feel grateful.

As I looked at my baby girl in my arms, looking up at me with those bright brown eyes, all I could think was thank you, thank you, thank you.

All I could feel was love and gratitude.