It was Spring, and my Malena Lola was now 18 lbs and thriving at home.

She had come such a long way from the tiny micro preemie she was at birth when she only weighed 1.6 lbs.

I remember looking at her and thinking “I can’t believe this is the same baby that was in the incubator back in April…

Now she was  living at home, eating solids, playing in her excersaucer, rolling around all over the place, sitting all by herself and jumping in her jolly jumper.

She was even trying to crawl!

And holding her own bottle with breast milk for practice, because she was still breastfeeding full on.

It was amazing how much progress she had made since leaving the hospital.

Being at home had made a huge difference for baby girl and for me. I was able to settle into motherhood at home and develop my routines at home for baby girl and me.

I figured out where best to place her equipment so that we didn’t have to hear the loud sound of her compressor running 24/7. I trained the night time caregivers to help me clean and disinfect baby girl’s equipment and tubing once a week. I was used to the sleepless weekends without the night time caregivers and enjoying my baby girl to the max.

Things seemed to be flowing naturally and joyfully.

And it was finally springtime, which meant that we could finally go outside as the temperatures were warmer and the snow was melting.

I will never forget the feeling of taking my baby girl for a stroll around the neighborhood for the very first time.

I felt so proud.

I can honestly say I enjoyed every single step of that walk. Watching my baby girl look at everything with her big brown eyes gave profound joy.

But I will admit there were certain days when my mind would bring up negative thoughts and try to make me lose perspective…

Why did this happen to my baby girl?
Why couldn’t my body keep her in my belly?
Why was she born a preemie?
How long would she have to have a trach?
Would I ever hear mi little girl cry and laugh?

And there were also times when I would look at other moms with their babies and I found it hard not to feel angry and bitter…

Why is her baby healthy and mine isn’t?
Why did she get to have a term pregnancy and I didn’t?
What did she do better?
What did I do wrong?

I found it hard not to compare myself with other moms with normal pregnancies and term babies.

I remember having a hard time even listening to other moms complaint about how they had to stay in the hospital for a week or how their baby cried all the time or how they couldn’t wait to get out of the house… I had a very hard time relating to those moms at that time. I simply couldn’t bear to hear them complaint after what my baby girl had gone through.

I just couldn’t relate to their experience. Instead, I found it much more comforting to relate with other NICU moms.

I wasn’t ready to hang out with moms who had normal pregnancies and term babies.
I wasn’t ready. Not yet.

I would need more time to get to that point. For now, I was happy to meet with other moms I had met in the NICU.

It took me a while to come to terms with those feelings. They made me feel selfish. But I had to accept them and realize that it was OK to have those feelings. Just like it was OK to cry if I needed to and to not see certain girlfriends with their kids until I was ready.

It was OK.

I decided to stop giving myself a hard time for having those feelings and instead I decided to just let myself feel all the emotions that I felt. I stopped judging myself.

I decided to make an effort not focus on the angry or resentful thoughts.

I had to accept those negative thoughts and purposely chose to let them go. My main focus had to be on all the positive and beautiful blessings I had.

I remember nurturing the feeling of gratitude a lot during that time.

It was gratitude that healed me through those painful emotions and thoughts.

I had to always remember that my baby girl was alive and healthy.

Having met several other parents during our NICU stay, I became very aware of how lucky I was because many micro preemies don’t survive or they have serious long term complications.

My baby girl had survived and emergency c-section at only 25 weeks gestation. She had survived 3 surgeries and 2 serious lung infections. She had gotten through several blood transfusions, including the one when they gave her the wrong blood type. She had endured an IV burn to her foot that left a scar for life. She had endured being intubated for nearly 5 months and then got a tracheotomy. She had pulled through nearly 8 months in the NICU.

And what always amazes me the most is that she did it all with a joy and zest for life that makes my eyes tear up in admiration every time I think about it.

She never gave up. She never stopped smiling. She always remained positive and happy.

It was this thought that always kept me going. it was this thought that always cast away all the negative thinking.

My baby girl’s strength of spirit always humbled me,  inspired me and brought me back into the light. Into the present.

It always made me feel deeply grateful.

Gratitude was the most very liberating feeling for me. It brought me back to my present and always reminded me to cherish the moment and what I had been so gracefully given.

How could I not feel grateful.

As I looked at my baby girl in my arms, looking up at me with those bright brown eyes, all I could think was thank you, thank you, thank you.

All I could feel was love and gratitude.

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.