Down the rabbit hole we go…

It was now early August. Our Malena Lola was just over 3 months and weighed 4.2 lbs.

She was doing really well, growing and getting stronger each day.

She played with a rattle for the first time! She was such a trooper! Even though she couldn’t move around freely, she still smiled and enjoyed it. I remember her nurse Trish helped hold her ET tube to give her a bit more mobility as she shook her first rattle.

Another one of those brief moments of pure joy that we cherished so much knowing that our sweet baby girl would have to undergo surgery again.

Later on Brad and I met with the head baby girl’s ENT and her Pulmonary doctor to discuss her upcoming tracheotomy surgery.

I remember sitting in the room and listening to the doctors speak. I remember them explaining what a tracheotomy was. I remember they used a plastic model of an airway to show us the details of the procedure. Everything they said made sense. Everything they said was clear.

I understood every word but I felt numb.

The thought of my baby girl having an open hole in her throat for an undetermined length of time was so terrifying that it made me feel numb.

I couldn’t let myself feel what I felt at that time. If I had, I wouldn’t have been able to go through with any of it.

After the meeting I needed a moment. I needed to go sit outside and cry.

I knew this was happening. I knew this was what she needed. I knew that baby girl’s surgery would be on August 11, 2011.

But I still couldn’t accept it. I still felt angry and heartbroken that my precious baby girl would have to go through this.

The uncertainty and fear were more present than ever.

How long would she need to have the tracheotomy
Would she be able to talk once the tracheotomy was taken out?
Would she be alright during the surgery?

There were no answers to my questions at this time. Only uncertainty.

The surgery was just a few days away. I tried to stay positive but I remember I cried a lot during those days.

It felt like I was mourning my baby girl’s loss of her ability to make sounds and in a way, the loss of her perfect little neck.

I remember holding her and staring at the area where the stoma or hole in her throat would be. I remember caressing the skin.

I remember thinking that once the tracheotomy was done, she would have a scar there for the rest of her life.

My baby girl was just three months old and she already had two scars – one on her back from the PDA ligation surgery and one in her right foot from the IV burn.

She would eventually have a third scar on her neck from the tracheotomy.

A part of me tried to focus on the positive and think about my baby girl’s face free of the ET tube. Free to breastfeed and to smile without a tube taped to her mouth.

I struggled to stay positive at times.

There were days where I felt everything would be alright. And there were other days where I just wanted to cry and scream.

I didn’t want my baby girl to have a tracheotomy. But there was nothing I could do about it.

Once again, I had to accept and let go.

It was Sunday. Her surgery was scheduled for Thursday. I decided to make the days before the surgery very positive. I wanted baby girl to feel loved and safe going into the operating room.

I was finally able to find a couple of onesies small enough for her. I dressed her for the very first time.

Those were the moments that gave us a sense of normalcy and joy amidst it all.

We had so much fun dressing her that we tried on both outfits. The pink and then the green.

I spent the next three days holding baby girl as much as possible. I knew that after the surgery she would be fully sedated for 5 days, as is it a very high risk time because the stoma is fresh and healing. They needed baby girl immobilized during those 5 days.

I knew I wouldn’t be able to hold her for at least 5 days. After that, the ENT would do a trach change and if the stoma was healing well, then she would be off sedation.

I remember thinking that I had never heard my baby girl cry yet. And now, I would have to wait even longer to hear her at all.

The tracheotomy would not allow her to make sounds.

I looked at my little girl and cried. It was the first time I cried in front of her.

I didn’t want to cry, but I couldn’t contain it. Those were very emotional days. There was something deeply heartbreaking about accepting the reality of my baby girl needing a tracheotomy.

I started to feel guilty again. I struggled to keep the negative thoughts away…

I knew I had to stay strong but a part of me felt like a failure. Like I had failed my baby girl as a mom.

I asked God why this was happening to my baby girl. There was no answer at that time. Only uncertainty.

I realized that the only way to calm my uncertainty was to have faith that my tiny, mighty little warrior angel would be alright.

I had to forgive myself and know deep in my heart that I had not done anything to cause my baby girl any harm.

This was easier said than done…but for now I forced myself to let go of the guilt. Forgiveness would come later…

It was Thursday. It was the day of my baby girl’s tracheotomy surgery.

I went to the hospital very early that morning. I spent all morning holding her. Looking at her. Telling her how perfect and precious she was. Telling her how grateful I was to have her in my life.

I held my baby girl close to my heart and once again, she gave me the strength and the hope I needed.

I told her she was strong and brave, and that everything was going to be alright.

I told her she would soon be free of the tube and she would be able to smile.

I told her I loved her.

I looked at my baby girl one last time before putting her in the transport incubator.

I knew this would be the last time I saw her little neck as she had been born.

It was time to take baby girl to the operating room.

It was time to be strong and believe.

It was time to have faith.

It was time to go down the rabbit hole.

Invictus

Malena Lola had been recovering well from her PDA ligation surgery.

Life had begun to settle into our new normal – my mom had gone back to Argentina, and I spent my days at the NICU with baby girl.

I would go to the hospital first thing in the morning and leave late at night.

I needed to be with my baby girl as much as possible. I needed to feel that I was doing everything humanly possible and more to make sure she felt loved.

It’s funny but one of the things I remember missing the most during those NICU days was my dog Rio. I missed taking her for walks, which I used to do every day. I missed being outside, in the sunshine. I often wished I could take my baby girl to the park for a walk with Rio.

I didn’t seem to miss much else. I was so immersed in my baby girl’s world in the NICU that I had little room left inside me to think about my life outside the NICU.

I recall some people telling me several times that I needed to take care of myself.That meant nothing to me at the time. It made no sense.  I knew that they meant well and were saying it out of love, but for some reason it really annoyed me. At that time, I couldn’t think about caring for anything else but my baby girl.

Someone even had the nerve to suggest I should go on a little trip, because they felt it was important to take care of our myself and I  couldn’t stop our lives because we had a baby.

I can’t even describe the level of frustration I felt when I heard this.
I had to remove myself from the room because we were in the hospital and I didn’t want to make a scene.

A part of me tried to understand that the person saying this wasn’t being malicious, they were just volunteering their opinion and trying to help. They were saying it out of love and concern.

But another part of me just couldn’t believe that knowing our baby girl’s circumstances, anybody would even dare suggest a trip or not stopping our lives for our baby girl.

I resented the comment. I wasn’t stopping my life for my baby girl. I was living my life and embracing it with all my heart and soul. My life at that time was defined by my baby girl in the NICU fighting for her life.

That was my life. I wasn’t going to go about it any other way than how I felt I needed to. I didn’t care what anybody else thought.

I got that we are in modern times and there are many different way of parenting. I respected that choice. I knew that nowadays some parents chose to not let a baby change their lives, and they believed that the baby should adapt to the parents lifestyle. I got that.

But that wasn’t me.

I had always been a very independent career woman. I had always done everything I wanted to do. I had always followed my dreams.

Being a mother had been one of those dreams. A long awaited dream. Now it had finally come true.

How could I not let my baby girl change my life?
How could I not let being a mother transform me?
How could I resist my own nature?

I decided to ignore what other people thought I should or shouldn’t do.

I knew that as always, I had to be true to myself, I had to follow my instinct, my intuition. I had let my heart guide me.

I released myself from any preconceived notions I had about what a woman of my generation, a so called modern woman, would do. I allowed myself to not judge my inner needs of spending every moment with my baby girl.

I was totally ready to be a mom. I was totally ready to devote myself completely to my baby girl during this special time.

I realized that I really didn’t care about setting priorities and balancing my life during this time. I was perfectly content being a full time mom.

I had longed to be a mom for years, so I allowed myself to fall naturally into my own sense of motherhood. I let myself be me.

That gave me clarity and strength to be there for my baby girl. That gave me the joy of feeling that I was the most loving and nurturing mom I could be.

I was grateful to be able to spend that time with my baby girl in the hospital.

I knew some moms that weren’t so fortunate. Some moms couldn’t afford mat leave and had to go back to work. Some moms felt very guilty about only seeing their babies after work. Some moms had other children to care for, which made it harder to spend all the time at the hospital. Some families had other difficult circumstances and weren’t able to be as present on a daily basis.

I felt fortunate to have the option to take my mat leave and spend every waking moment with my baby girl.

Yet again, the tide changed and we were no longer lucky…

It all started the night of June 13 – the day before baby girl was going to be taken to the Alberta Children’s Hospital to see the ENT specialist. That night, during a cuddle with me, baby girl decided that she was going to push up and stare right into my face. Being the strong girl she was, she didn’t let the fact that her ET tube was taped to me stop her. At that moment it took my by surprise and I was actually incredibly happy to see her moving like that. She pushed her upper body up and lifter her head to look at me. It was an amazing moment that I will never forget.

For a brief moment she looked right into my eyes. I still get tears when I remember this moment.

I felt like baby girl was saying “I am here mommy and I am never giving up.”

That magical instant was immediately cut short by the fact that I noticed her ET tube was no longer in place and seemed to be pulling out of her mouth.

In the blink of an eye my emotions went from pure love to sheer panic. I couldn’t make any sudden moves as I had baby girl on my chest.

I called the nurse and I explained what happened. She confirmed right away that baby girl’s ET tube was out of place, that she had accidentally extubated. This was dangerous because it could cause her breathing distress as well as damage her airway.

The nurses observed baby girl’s stats and they were good. Her pulse, heart rate and oxygen levels were good.

She said they would have to put her back in the incubator and remove the ET tube completely in order to be able to reintubate her.

I remember feeling bad because I felt I should have prevented baby girl from moving like that. The nurses reassured me that it wasn’t my fault. They told me that sometimes babies self extubate by accident or on purpose.

They told me not to worry, that she would be fine.

Once in her incubator the doctor removed her ET tube and all the tape from her face. Her stats remained stable so the doctor decided to see how she did breathing on her own, without the ET tube. I was a bit scared but I trusted the doctors.

I was so happy to see my baby girl’s face again, free of the ET tube and the tape. Just her lovely face.

Brad came to the NICU after work and we stayed with baby girl late that night. We were so excited to see her breathing on her own again.

But once again, our joy was short lived…

When I arrived at the NICU early next morning, the doctors approached me and let me know that baby girl had started struggling to breathe again. They needed to reintubate her.

My heart sank. I felt horrible for baby girl having to go through another intubation. And this time it was even worst.

The doctors struggled with the intubation. Baby girl was crying hard. She wanted nothing to do with the ET tube. I stayed by her side. It was torture to watch her go through this again…but we did our best to stay calm and comfort baby girl by caressing her forehead.

Her airway seemed to have swollen, probably as a consequence of the accidental extubation the night before. The doctors were not able to insert the ET tube size 3.0 mm. They had to go down in size and insert a 2.5 mm ET tube instead.

This was not good news because it meant that her windpipe had suffered some trauma from previous ET tube and was now swollen. There was also the likely risk of scar tissue forming eventually.

But there was nothing we could do at this point to avoid this. Baby girl’s breathing was the number one priority.

At this point, she was considered to have a critical airway. They put her on hand restraints so that she wouldn’t be able to pull her ET tube out.

It was so sad to see her not able to move her tiny hands freely. Not only was she unable to experience life outside the incubator, but on top of that she was now restrained.

I struggled with that. But I told myself it was for her own good. It was to protect her critical airway and she would only be restrained for a couple of days, that’s all.

I remember wanting to cuddle her but at the same time I felt scared because of what had happened last time I had cuddled her – accidental extubation.

I told Brad about my fear of holding baby girl again and he reassured me that I had nothing to worry about, that baby girl needed mommy to hold her no matter what.

I felt better. I was looking forward to cuddling my baby girl.

But there were no more cuddles for a while.

On June 16 our precious baby girl developed a severe lung infection – a type of pneumonia.

Her tiny body was fighting hard against it but it was a very strong infection. The doctors showed us chest X rays and we could barely see her lungs, they were all white from the infection.

The doctors told us that on a scale of 1 to 10 – 1 being the lowest chance of survival, she was a 1 at that point.

Brad and I were devastated. I told both Brad and the doctors that I didn’t want to hear any more about her chances of survival.

I refused to give into any lack of hope or negativity.
I needed to believe that my baby girl would fight the infection and survive it.

The doctors bombarded her fragile little body with antibiotics. They had practically shaved all of her hair for IVs on her head. Her oxygen needs on the regular ventilator were at 100 %. The doctors decided to put her on an oscillator ventilator – also known as a high frequency ventilator, which is less damaging for a preemie’s sick lungs.

The oscillator vent causes an oscillating movement which can be very disturbing for babies, therefore in order for baby girl to be on the oscillating vent, she would have to be paralyzed. And in order to be able to handle being paralyzed without suffering mental or emotional stress, she would also have to be sedated.

The doctors wanted her her body to be completely still and focused on healing the infection.

If she didn’t respond to the antibiotics and the oscillating vent, there was little else they could do. It was now up to baby girl.

I stayed with her day and night.

I asked all my friends and family around the world to start a chain of prayers for my baby girl. I asked my cousin who is a Reiki Master to send her Reiki. I prayed.

I will always remember how the poem “Invictus” became one of my biggest sources or inner strength. It was a poem that had touched me deeply the first time I heard it in the movie of the same name, “Invictus”. It was the poem poem chosen by Nelson Mandela to inspire him through his years in solitary confinement. It was a poem about hope and strength. It was a poem about the power of the human spirit. I felt that the words spoke to my heart and to my baby girl’s soul.

The word invictus is a latin word that means unconquered, unconquerable, undefeated.

I needed to believe that my baby girl was invictus.
I needed her to believe that she was invictus.
I needed to believe that the infection would not conquer or defeat her.

I wrote the poem in baby girl’s journal and read it to her.

Invictus – by Wiliam Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

I read this poem many times each day. Each time it filled me with strength and faith.

It was tough seeing our little warrior princess so still. But we never lost sight of her mighty spirit in that tiny body. We never lost sight of how hard she was fighting to live.

My baby girl was fighting to survive and she was winning the fight. She was able responding well to the antibiotics and her oxygen needs were improving.

Finally, on June 21, after 5 agonizing days, the doctors were able to take her off the oscillating ventilator and put her back on the regular ventilator. Her lungs were improving and she was healing.

She was off the paralyzing drug and the sedatives. We were grateful beyond words.

She soon started moving a bit again and opening her eyes.

Our prayers had been answered.

Our tiny but mighty warrior was once again invictus.