Love

It was now the New Year and I had so much to be grateful for.

My baby girl was loving life at home and was healthier than ever.

She also had a new best friend: our dog Rio.

They loved having naps together. “Sisters”.

Life at home definitely agreed with us all.

I was getting used to life with the night time caregivers. Baby girl was happy and growing.

Of course I still had my moments when I would get a bit overwhelmed by worrying thoughts…

Was the caregiver awake?
Was she watching baby girl every second?
Was baby girl alright?

And there were also times when my biggest fears would also pay me an unwanted visit…

Would my baby girl ever be without oxygen?
Would she ever be free of the tracheotomy?
Would she be able to have a voice someday?
When? When? When?

I had learned that the best way to deal with these fearful thoughts was to acknowledge them and then let them go.

I couldn’t let them linger at all because if I did they made me feel scared, helpless and sad. I couldn’t allow myself to feel that way because it was not healthy for me or my baby girl.

I also knew that I had to chose positivity and hope above all, always. That had gotten me this far and it would take me all the way, as long as necessary.

Besides, my baby girl was home, happy and healthy.
Gratitude overcame fear every single time.

And things were settling into place at home.

I had developed my at home routine with baby girl, the caregivers and the equipment. Once a week I had to clean and disinfect baby girl’s equipment and tubing.

The only interruptions to our routine were the excessive hospital appointments that the doctors wanted baby girl to have…

They included pediatrician, eye doctor, ENT, lung specialist, speech pathologist, physiotherapist, etc…

The problem with all these appointments was that no only were many of them not necessary, but also that they required us to go to the hospital in the middle of winter, which meant RSV and flu season.

I decided I was not going to simply take her to all the appointments just because this was the general standard.

I met with her main doctor and discussed which were the really necessary appointment that were important for baby girl at this time. Turned out we could actually skip most of them!

Baby girl only needed to be followed up by her pediatrician, ENT and lung specialist at this time. This meant we would only need to go to the hospital every 6 to 8 weeks instead of nearly every week…

It made me wonder how many poor moms and dads take their preemie kids to tons of post discharge appointments without really knowing if they need so many appointments at all.

I was lucky to be able to speak up and question the doctors decisions. That allowed me to get more specific information related to my baby girl rather than a general “this is what we always do” approach.

By now I had gained enough confidence in my own instinct to know when to follow the doctor’s orders and when to questions them or challenge them.

I felt that my instinct was my most valuable strength when it came to advocating for my baby girl.

And it was my instinct that let me know that my baby girl was ready to start eating solids.

Baby girl was still breastfeeding and I was now going to introduce purees. I was so excited to feed her!

I had her new high chair and the Baby Bullet. I started making her purees with my Baby Bullet, it was fantastic. I could make a large batch and freeze it.

I started with quinoa pureed with banana, wheat germ and coconut milk.

She loved it!

She started eating right away without any issues. She loved food!

I was so proud of her. She had come such a long way.

I continued to make all of her food at home because I could chose the combination of flavors and ingredients myself, and this was healthy for baby girl.

She quickly started eating lentils, broccoli, kale, brown rice, chicken, turkey, steak and greek yogurt among other things. Always pureed for now as she was just starting out.

She was a great eater and would get very happy at meal time. She was definitely a foodie!

I was grateful as this would make it a lot easier for her to grow and put on weight, which is always a challenge with preemie babies.

I felt so thankful. I felt that I had gotten a break on this. She was breastfeeding on demand and now eating solids without any issues whatsoever.

After so many struggles with other things, I felt truly lucky that I didn’t have to struggle with her eating.

I was very aware of how fortunate it was that baby girl was able to eat orally. Most trached babies needed a G-tube – gastric feeding tube.

My baby girl was one of the lucky exceptions.

I knew how special it was to be able to experience being able to feed her and watch her enjoy the food I had made for her.

In a sea of uncertainty, I had learned to appreciate the simple and often most important things.

Like the first time she played with her toys at home.
Or the first time she sat in her high chair.
Or the first time she had pureed food.

It was these simple yet mighty moments in our journey together that gave me infinite joy.

I cherished every single one of these precious moments with my baby girl.

Not a fear in sight.

It was all about the love.

Food love.

Baby love.

Love.

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.