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.

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.