Eyes

Summer was near, it was early July and Malena Lola was over 2 months old.

After fully recovering from a serious lung infection, Malena Lola was back to her happy, feisty self. However, she was receiving pain medication now because she had and IV burn on her right foot.

I had gotten a call during the night and once again it was bad news – the IV she had on her foot had accidentally spread into her skin and caused a burn on her foot.

My heart sank.

The thought of her experiencing pain and nobody noticing made me sick to my stomach.

I rushed to the hospital. I ran into the NICU. The top of her right foot was swollen and burned. It looked awful. Her skin had turned dark red and almost black. They had put an ointment on it and she was on pain meds.

I was so upset… the doctors and nurses assured us that this hardly ever happened and that it shouldn’t have happened. Oh but it did happen. It happened to my baby girl. Her nurse had neglected to check on her and realize that her IV was gone and causing damage.

Just thinking about that made me feel a level of anger didn’t even know I was capable of. I tried to stay calm but I was visibly upset. I started crying.

I knew that anybody can make mistakes and all that jazz… but even if her nurse hadn’t caught the IV burn immediately, she should have caught it before it caused that much damage. It was simply not acceptable.

I asked to speak to the head nurse and demanded that the nurse who had failed to care for her IV properly be removed from our baby girl’s side for good.

I never wanted that nurse near my baby girl again.

The head nurse completely understood us and promised us to follow our request going forward.

Needless to say this did not make me feel any better… nothing changed the fact that my baby girl had to experience such unnecessary pain and that she would have a scar on her foot forever, as it was a 3rd degree burn. The doctor’s weren’t sure to what extent it may affect her foot’s mobility, as they weren’t sure if it had damaged the nerves at all. Only time would tell.

I remember looking at her burned foot and feeling real hate towards the nurse who had failed to care for my baby girl properly. I wanted to scream at her. I didn’t know who she was and I didn’t want to know…

I had to contain it all inside, as I didn’t want my baby girl to feel any more of the negativity from the situation. I knew that ultimately that wouldn’t change the fact that my baby girl was hurting. I knew I had to l let it go.

But first I had to let it out. I cried. I told my baby girl how sorry I was that she had suffered such a horrible burn. I told her I was sorry I wasn’t there to protect her. I told her I loved her and that she was safe.

It took me a very long time to forgive the nurse responsible for my baby girl’s burn…

It took me an even longer time to forgive myself for not being there to protect my baby girl…

I now had an even worse fear of leaving my baby girl at night in the NICU.

I knew I couldn’t stay there all the time with her, but I wasn’t ready to leave her that night.

I decided to spend the night with my baby girl at the NICU. I wasn’t ready to leave again. I would need more time.

I was feeling pretty exhausted from the move, but was glad it was over and done with. Baby girl had her own room in our new home and we could start painting it and decorating it now.

I remember having this sense of urgency to have her room ready for her. I don’t think I fully realized at the time that she would be in the hospital for quite a while longer and that we would have plenty of time to get her room ready.

For now, the only move baby girl would experience would be from one NICU to another NICU.

On July 5, 2011, baby girl was transferred from the Foothills Hospital NICU to the newly opened NICU at the Alberta’s Children Hospital.

It was a really good change because in the new NICU we had our own room with a window, which made a huge difference in us feeling less isolated from the outside world. I was able to hold my baby girl again, despite her having a critical tube due to critical airway. This had been a concern during kangaroo care, but I was able to get over my fear and guilt. I was able to push back doctor’s opinions. My baby girl needed to be held, that was part of her healing just as much as other things. I was relieved to hold her again. I was able to cuddle her under the sunlight coming through the window.

And I was happy to leave the memories of her terrible pneumonia and burned foot behind, at least symbolically…

As always during our journey, the happy moments were quickly followed by stressful moments.

The relaxing cuddle in our new room wouldn’t last long… as we had several scheduled doctors coming to see baby girl in the next few days.

First she would get her brain checked, then her airway and finally her eyes.

The doctors were eager to determine why she wasn’t able to extubate successfully.So were we.

Was it an airway issue?
Was it a neurological issue?

The latter had me very worried. It was terrifying to think that there might be a chance my baby girl had neurological problems of some sort. And she had had a small bleed in her brain a few days after she was born. It had healed itself and not required surgery, but the doctors weren’t able to determine any damage at that point. Yet again, only time would tell.

However, they doctors now wanted to do an MRI to check baby girl’s brain function because they thought maybe there was an issue there that may be causing her not to be able to breather successfully on her own. She had now had several failed extubations and they couldn’t figure out why.

For her MRI she needed to be taken be “packed” in a unique way so that she wouldn’t move at all during the MRI.

The transport nurse made her a little head protection with bunny ears.

She also needed special ear plugs to protect her from the MRI machine sound. I called her my little pilot cause I thought she looked like an airplane pilot.

She loved the feeling of being all wrapped up and fell right asleep. It was a relief to see her go so relaxed and not struggling.

I waited in her room. All I remember was praying to God that her brain was healthy.

Brad was at work but I kept updating him through text messages.

It didn’t take long for them to bring baby girl back. We would have the results shortly.

As I waited and cuddled my little angel, I told her that she was perfect and that everything was going to be alright.

The doctor came by and let me know that her MRI results were great. Her brain looked healthy and normal functioning.

I cried with happiness and relief.

I knew that I had to fully enjoy these brief yet powerful moments of joy because there was always another scary moment lurking around the corner…

The next day the specialized optometrist came to check her eyes and determined she had ROP – retinopathy of prematurity. She would require laser surgery right away to avoid retinal detachment and possible blindness.

Another surgery for our tiny but mighty warrior. Another risk for our baby girl going under general anesthesia.

It had to be done. Her eyes needed to be fixed and protected.

The optometrist scheduled baby girl’s surgery for the next day. It only took about an hour and it was very successful.

Baby girl’s ROP was fixed. The windows to her soul were healing.

We had to keep her room dark for a couple of days as her eyes were very sensitive.

Soon she would wake up and open her beautiful brown eyes. They were puffy and swollen, but healthy. The optometrist said she would monitor her eyes every month to make sure the ROP didn’t return, in which case she would need another surgery.

For now we were happy to know her eyes were healing and we were grateful the surgery had gone so well.

My beautiful brown eyed girl. I wished we could have had only happy moments and avoided all the scary moments…

But that was impossible.

The following week baby girl had a scheduled bronchoscopy to check her entire airway. This would be done in the OR and she would have to go under again.

The doctors wanted to try another extubation but first they wanted to check if there were any structural issues with her airway.

So once again our little champion was taken to the OR for her bronchoscopy.

While I waited in the post op area I felt as if I had been ran over by a bulldozer.

I realized how incredibly tired I was.

I felt like I couldn’t catch my breath during that month of July… It had been one thing after the other. There were times when I wished I could just grab my baby girl and run away.

I had fantasies of being able to go outside and walk down the street with my baby girl in arms, just like so many other parents did.

Instead, I got to spend my days at the NICU with my amazing baby girl who inspired me to get through it all right by her side.

The bronch didn’t take long and within the hour the ENT came to see us with the results. Baby girl’s airway looked great and her vocal chords were moving, which was great news because that meant she would be able to make sounds and speak in the future. The ENT did see some inflammation and scarring in the subglottic area, therefore they diagnosed her with possible acquired subglottic stenosis.

The ENT and pulmonary docs decided to do another round of steroids to help reduce the inflammation of the subglottic area and that way best prepare baby girl for a successful extubation.

The ENT and pulmonary docs didn’t see any reason why she wouldn’t be able to extubate successfully. The ENT believed that once she grew to about 2.5 kilos she would be able to extubate without problems. So we would have to wait a bit longer for the next planned extubation.

Everything they said was positive news except for one thing – they mentioned the possibility of baby girl needing a tracheostomy. Both the ENT, the pulmonary docs and the clinical docs agreed that if she were to fail her next extubation she would have to have a tracheostomy because she was now almost 4 months and it was necessary to remove the ET tube as it was startign to do more damage than good. Besides, she would be able to move more freely and maybe start feeding orally, once free from the ET tube.

It was now early August and baby girl was 2.5 kilos. The ENT planned her 14th extubation for August 9, exactly a day after her original due date of August 8.

We were excited and confident that you would have a successful extubation and be finally tube free. We prayed and stayed positive. We hoped that you would not need a tracheostomy.

Our hopes and prayers were not answered on August 9. Baby girl failed her 14th extubation.

At first it looked like she was breathing alright and both Brad and I were so happy to see our baby girl’s face free of the tapes and the ET tube again. But after just a few minutes she started working harder and harder to breathe. It was the most painful experience of my life. I couldn’t help my baby girl. I couldn’t keep her from needing a tracheostomy.

We were all heartbroken. We all knew what this failed extubation meant.

I wanted to cry. I wanted to scream. I wanted to be able to help my baby girl but all I could do is be strong for her. All I could do was love her with all my heart and hold her through one last intubation.

The doc decided to sedate her because she had been quite stressed during the extubation and now intubation. My little angel fell asleep.

I needed to go outside so he stayed with baby girl.

I sat on a bench outside the hospital and cried. I remember crying and not being able to stop.

Why wasn’t my baby girl able to breathe on her own?
Why did she have to have a tracheostomy?
Why did she have to suffer through all this?

I felt such sorrow, such anger. I let myself cry as long as I needed and then I gathered myself to go see baby girl again.

I was ready to be strong for her again. I wanted her to feel confident that the tracheostomy would be a good thing that would help her breathe on her own and grow.

I didn’t want to exude any fear or sadness to baby girl. I wanted her to feel only positivity from me.

And even though I felt defeated, I dug for some hope and faith deep in my heart.

I felt emotionally depleted, but I needed to be with my baby girl.

I went back into my baby girl’s room and held my tiny, mighty warrior.

As I looked into her bright brown eyes, I found all the strength and hope I needed.

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.