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. 

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.