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. 


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.