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.