Darkness

Thursday August 11, 2011.

After two eternal hours of anxiety, our tiny but always mighty Malena Lola was successfully out of surgery for her tracheotomy.

She was being transferred post surgery to the PICU – Pediatric Intensive Care Unit. After 129 days, she was finally out of the NICU for the first time since she was born.

I couldn’t wait to see her. I was relieved that she had gone through the surgery well. I was excited to see her face free of tape and tubes.

I will never forget the first time I saw her beautiful face.

I was in awe of baby girl’s beauty. I felt so relieved to see her face free and her lips relaxed. There was no plastic tape covering her face and no tube pulling her mouth open. Just her pretty little face.

I couldn’t stop staring at her. I cried with happiness.

She was still heavily sedated and paralyzed. She would be like this for the next five to seven days, as this was a critical time that required baby girl to be immobilized in order for her stoma – the wound where the surgical cut was made – to heal well. If baby girl moved, it could cause bleeding and / or damage which could lead to her airway being compromised or other serious complications.

There were two strings coming out of her stoma area that were taped to her chest. These strings held the fresh wound open while it healed.

Baby girl needed to stay sedated and paralyzed until the first tube / trach change was done safely, so for 5 or 7 days. Once the tube was changed (without any complications), she was able to come out of being sedated and paralyzed.

In the meantime, she managed to give us plenty of groggy smiles and funny faces.

We could tell she was happy to have a free face and lips to move as she pleased.

Her first smile was one of the happiest moments of my life.

It was amazing to watch her discover her mouth without the tube. She was able to move her lips freely. She was able to smile comfortably. She was having fun with it.

I felt so deeply grateful.

I was able to realize what a blessing this was for our baby girl.

And yes, as any parent, I would have wanted her to not ever need a tracheotomy.

But our reality was that she did need it and now that she had it, she was so much happier.

As soon as the critical post surgery period was over, she would be able to move much more freely.

My baby girl was finally going to be able to have some tummy play time!

I felt very hopeful and I felt excited about all the new things we could do now that there wasn’t a tube inside her throat and taped to her mouth.

It was the beginning of a whole new stage in our journey.

Well not quite yet…

On Sunday August 14, 2011, just 3 days after her tracheotomy, darkness took over once again.

Baby girl got sick again.Very sick.

I remember receiving a call from the hospital at around 3 am. We rushed to see baby girl.

She was struggling to breathe. They were going to take an X-ray of her chest. They had to go up on her oxygen to 100%.

The doctors were worried. I felt like I was reliving my worst nightmare.

They were preparing to give her another blood transfusion. This would be her third one. She’d had two in the past. The first time they made a mistake and gave her the wrong blood type…which cause her some complications and they had to give her special medication. So this time we insisted on double checking the blood type before she received the transfusion.

After her X-ray results came back we found out baby girl had a terrible lung infection, a dangerous pneumonia caused by a nasty bacteria.

The docs started an IV with powerful antibiotics. Her tiny veins were weak and her IVs didn’t last long, so an arterial line was necessary.

It  was extremely traumatic because they tried to the arterial line near her chest first and failed and to make it worse they had a hard time doing it on her leg…

I could hardly bare to watch it…I remember feeling angry with the doctor at one point because he wasn’t getting it right…but I held it together and never let go of my baby girl’s hand.

I tried to comfort her as much as I could.

Finally it was done. Now they had a way to get her all the meds she needed without having to poke her for IVs.

She would have a scar from that arterial line that would stay in her leg forever.

But at least I knew my baby girl was sedated and under morphine so she wasn’t feeling any pain. It relieved me a bit to know that she was not suffering and was able to sleep and heal.

The doctors put her on the oscillator ventilator again.

I begged them not to paralyze her again unless it was necessary. They sedated her and she was tolerating it very well.

They agreed to wait and see if baby girl tolerated the oscillator without being paralyzed. Turns out she loved the vibration and she was very comfortable. I was grateful.

I decided to stay with her until she was better. I decided to spend the night with my baby girl.

I needed to stay by her side. I needed her to know I was there. I needed her to hear my voice.

The night started out a bit rough.

The doctors and the Respiratory Technicians were struggling to find the right settings for her on the oscillating vent, so her breathing was still not great.

I could feel the scary thoughts trying to take over, but I told myself that if my baby girl got through a pneumonia when she was much smaller and weaker, then she would be able to overcome this one as well.

Finally after trying different settings, the Respiratory Technician’s seemed to have found the right setting to help her breathe without struggling.

She was still on 100% oxygen, on the oscillator vent and under nitric oxide treatment. But her stats were a bit better, her heart rate wasn’t as high and her breathing rate either. This meant that she wasn’t struggling as much to breathe.

I settled into the night with my baby girl. I read her The Little Prince.

I remember telling her that The Little Prince was one of my favorite books and read her my favorite quote in the book:

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.”

I told her about when I was a little girl growing up in my hometown of Buenos Aires, Argentina. About the long summers spent at my most loved place in the world, my grandparent’s beach house in Mar del Tuyu.

I promised I would take her there one day. I promised that she would meet my grandparents Orieta and Lito.

I remember telling her how strong she was and how incredibly proud I was of her.

I reminded her to never give up. I reminded her how loved she was. I reminded her that she was brave and that she had pulled through many other tough moments.

I reminded her that there were hundreds of people praying for her.

After a long night of darkness, the morning light began to show. Baby girl remained critical but stable. She seemed to be responding to the antibiotics. The docs were able to lower her oxygen to 80%.

When baby girl woke up and opened deep brown eyes, I knew she would be alright.

My baby girl was awake and healing. My heart was filled with gratitude.

She was responding well to the treatment. I lost all my fears.

I knew my baby girl would be invictus once again.

On August 24, 2011, our tiny but forever mighty Malena Lola was put back on the conventional ventilator. She no longer needed the critical oscillator ventilator.

After 10 days of illness, treatment and healing, baby girl was down to 35% oxygen and she no longer needed antibiotics or sedation. The docs would be able to remove the arterial line in her leg soon.

The ENT had successfully changed her trach tube, so she was out of the critical phase. The strings on her chest had been removed. My baby girl was free again.

Love and gratitude filled my heart.

The darkness had passed. Let there be light. 

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.