Momma Bear

On Sunday, December 14th, 2011, Malena Lola was finally officially discharged from the Alberta Children’s Hospital.

It was an unforgettable day.

I will forever remember the feeling of finally bringing my little girl home after nearly 8 months in the hospital.

I remember the nurses kept asking me if I was nervous or scared, but I wasn’t.
I was very aware of all the risks of having a baby with a tracheotomy at home, but I had spent 8 months at the hospital with my baby girl.

I had plenty of time to get over all my fears and anxieties. I was ready to have her home.

And now the time had come.

No more leaving the hospital every night, filled with guilt and sadness.
No more scary phone calls from the hospital.
No more nurses and doctors interrupting.
No more hospital monitors.
No more hospital room.

We were home.

I remember the first night at home with my baby girl. I spent the entire night awake, staring at her.

A part of me was so relieved to have her home and another part of me was very aware that this was a new stage with a new set of challenges to overcome.

There would be a night time caregiver in our home every night. And as helpful as that might sound to some parents, and it was at times, it was also a huge disruption of our home life.

And we didn’t know how long this situation would continue, because we didn’t know how long baby girl would need her tracheotomy.

It was that uncertainty that made things tough to bear at times.

But I knew that I had to take it one day at a time, otherwise it was just too hard.

And right now it was time to set those thoughts aside and focus on my baby girl being home. I wanted to cherish each moment.

My baby girl was home. She was healthy and thriving.

That was more than enough to fill me with pure joy and gratitude, and erase all the fears and negative thoughts.

I had my baby girl all to myself until tomorrow night.

I had made special requested that we only have caregivers during the week because I wanted to have have the weekends just for us.

When I made that request, the doctors, objected.That was their typical reaction to most of my out of the ordinary requests…

They were concerned that I wouldn’t get any sleep, but I explained to them that even with the caregiver I would still not get any sleep at first. I was going to be watching my baby girl every second until I was ready and comfortable to leave her alone with the caregivers.

Besides, I told them that it was normal for parents not to get much sleep the first couple of years after having a baby, so why would that be any different for me?

So here I was, home with my baby girl all to myself. At last.

She wasn’t able to sleep in her room just yet, but I would go there to breastfeed as often as I could or I would just hold her and look at the window together. I loved her room.The walls were the color of the Caribbean ocean. It was a very happy and relaxing place.

But to make it as safe as possible for baby girl at night, we had set up her sleeping area in the living room, as this would make it easier for the caregivers to monitor her and stay awake all night. We placed both her crib and machines in the living room – a compressor for humidity and an oxygen concentrator.

We had also set up one of her suction machines in the living room, as well as her change table and all her trach supplies.

This allowed the caregivers to be able to monitor baby girl more comfortably and it helped them stay up all night easier, since they had easy access to watching TV, the kitchen, etc.

It also made it more comfortable and accessible when I had to do her trach care every morning.

I remember the first nights with the caregivers at home during the night. I stayed up with them at first, and taught them all about baby girl’s routine and preferences.

I would go to bed at times, but wasn’t able to sleep. All I could do was think about my baby girl.

Sometimes my fears would make their grand entrance into my mind.

How long would my baby girl need her tracheotomy for?
Would she ever be able to speak?
How long would we need to have caregivers in our home every night?

All questions without answers.

I had learned not to dwell too long in these questions. I had learned to acknowledge the fears but then release them and move on.

I couldn’t allow myself to listen to these fears too long because they were useless and ruined my present with my baby girl.

My baby girl was happy and healthy. That was all that mattered.

After a week of this or so, I began to feel much more comfortable and relaxed with the whole caregiver situation.

I had hired my own caregivers so I was very happy with the two ladies I had chosen and I trusted them. I just needed time to adjust to them being in my home every night and care for my baby girl on their own. And even thought I was always just down the hall from them, it seemed really hard at first to just leave my baby girl alone with them.

I thought the hospitalization would have made that transition easier but it didn’t. This was another process I needed to go through.

I think the fact that I had my baby girl finally home after such a long hospitalization made me grow even more attached to her.

But time is wise.

In about a week I was able to let them be on their own and started being able to fall asleep.

The caregivers knew to wake me up if baby girl woke up, as I was breastfeeding her still.

My life was actually now the way a new mom’s life should be: with night feeds, day time feeds and cuddles all around.

My life consisted of staying at home with baby girl all the time except when she had a doctor’s appointment at the hospital.

It was the middle of winter and baby girl’s immune system was still weak so it was essential that she stay away from crowds, children and babies and people in general. A simple cold could send her right back to the hospital.

After 8 months of practically living in the hospital, I wasn’t going to take any chances.

I would stay in until the cold, flu and RSV season was over. It was the least I could for my tiny but mighty baby girl.

A lot my friends and family were concerned that I couldn’t go out or that they couldn’t come see baby girl.

I wasn’t concerned at all.

I was actually very happy to be enjoying this private time with my baby girl. I hadn’t been able to be completely alone with her since she had been born.

I remember some of my girlfriends kept telling that they didn’t know how I did it. They would go crazy if they had to stay home all the time.

I loved it.

I felt like a momma bear hibernating with her cub. I loved being a momma bear.

I had wanted to be a mom for a very long time. I was enjoying every second of it.

I loved seeing her living life beyond the hospital walls.

My baby girl was more precious than I could ever have dreamed of.

She had gone through so much and yet she always had a smile or a joyful energy about her. She had this light, this invincible spirit always shining through.

I was in awe of her every day.

I didn’t need to go outside just yet.
I had my very own sunshine right at home.

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.