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.

There’s no place like home

It was Friday, November 25, 2011.

On that day, Miss Malena Lola was turning 7 months old, and weighed 5.2 kilos – 11.5 lbs.

That was a long way from the 715 grams – 1.6 lbs she weighed when she was born.

It was along way from the NICU days when she needed an ET tube and a ventilator to breathe.

It was a long way from the days when she needed an NG tube to feed through her nose.

Today baby girl was able to breathe on her own, and only needed 2 L of O2. She was able to breastfeed on demand and was thriving in every way.

Today baby girl would get to leave the hospital and go home for a day visit for the first time in her tiny but mighty life.

I arrived to the hospital very early that morning, at around 6 am. I  wanted to have baby girl on the way home as soon as possible.

I did her trach care, fed her and changed her.

Loaded up the car in the meantime with baby girl’s oxygen tanks, suction machine, emergency kit and medications.

Then signed the forms that authorized me to take my baby girl home for a day pass. Her nurses and docs came by to wish us well.

We quickly said bye and headed out. We didn’t want to stay in that hospital once second longer than we had to.

Baby girl was really excited, she loved sitting in her car seat and going for a ride in her stroller.

I remember feeling such pride and joy walking out of the hospital with my baby girl. And most of all I felt so lucky, so grateful.

I had been waiting for this moment for so long…I couldn’t believe it was finally happening.

I remember feeling so aware of every instant of that moment, feeling so present. Every cell of my being was rejoicing.

Every little detail felt magnified by the divine grace of that moment.

Baby girl was in such wonder, she big brown eyes were bigger than ever.

When we placed her car seat inside the car, she kept staring at everything.

It is always amazing to look at the world through the wonder of a child’s eyes.

I will never forget the feeling of watching my baby girl look out the window while we drove home. She was fascinated!

I will never forget the feeling of bringing my baby girl into her home for the very first time. It was a moment I had been anticipating for a long time. For exactly 214 days and nights.

I felt so grateful. I felt so fortunate.

As I watched my baby smiling and sitting in the middle of our living room, I knew I was experiencing a miracle.

I remember sitting there just watching her, just enjoying having her home. I cried.

I knew how lucky I was to be able to have my former 25 week micro preemie baby girl home. I knew how lucky I was to have my tiny but always mighty baby girl thriving.

She had made it out of the hospital.

This was a day to remember. This was a day to not only count my blessings but to celebrate my blessings with all my heart and soul.

Baby girl spent the day at home and then went back to the hospital to spend the night.I hated having to take her back to the hospital. It felt wrong.

It felt right for her to be home at this time.

The doctors were afraid of letting her spend the night at home so fast. I wasn’t.

I knew what I had to do.

The next day I spoke to her main doctors and told them I wanted to take her home overnight.

Of course at first they said not yet, but I asked them why and they did not have an answer that made sense. Their answer was basically that they were not used to moving that fast and that it would be better to do a few more day passes before we tried a night pass.

I said that answer was simply not good enough.

I didn’t care what they were or weren’t used to. My baby girl had no issues during her day pass and she had met all the criteria for discharge. There was no need to keep her in the hospital overnight. I was going to take her home.

The doctors said I would have to sign a waiver indicating that I was willing to do this without their consent, and I said where do I sign.

That night baby girl was home. I stayed up all night just watching her sleep.

It was a magical night. Her first night home. Magical.

The next day we took her back to the hospital in the evening, that was the agreement with he doctors.

It never ceased to baffle me the fact that the doctors were so afraid to allow a baby to be home. It felt as if they had lost sense that a baby is supposed to be home. That is their natural habitat. And yes, this very preemie baby girl had needed to be in the hospital for nearly 8 months, but she was ready to go home. And it was time the doctors realized that and let go.

I remember having to have several conversations with the team of doctors and other hospital staff about baby girl’s discharge date. They all seemed unwilling to set a date.

I told them if they were not willing to set a date then I would, and I did.

I told them our night time caregivers would be ready to start working on Wednesday, December 14, so that would be baby girl’s discharge date.

I told them everything was ready on my end, so they better get everything ready for that date.

My baby girl had fully met all the medical criteria for her discharge. My baby girl was going to spend Christmas at home.

The time to be overly cautious and fearful was over. It was time to set her free.

It was time to embrace life outside the hospital. Life at home.

I will forever remember Wednesday, December 14, 2011, as one of the happiest days of my life.

After 258 days and nights, my baby girl was finally and officially discharged from the Children’s Hospital.

My tiny but mighty miracle was home.
All I wanted for Christmas was my baby girl home. My wish had been granted.

My most precious gift was home.

I was overwhelmed with the deepest joy and gratitude.  I cried and I laughed all at the same time.

I had truly come to learn that there’s no place like home.

People say home is where the heart it.

My heart was finally home.

It was a true Christmas miracle.