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.

Big blue sky

It was the last days of September and Malena Lola was riding a wave of positive progress.

She was growing and getting stronger each day. She was starting to hold her head on her own and was almost sitting on her own.She had a bonchoscopy done and the ENT was able to determine that she did not have tracheomalacia nor any other airway structural issues. This was fantastic news because it meant that in the short term we could wean her off the CPAP and in the long term it definitely made baby girl’s road easier.

It also meant we could finally be moved out of the PICU and into Unit 2, which was the transitional unit prior to going home.

On September 27th, 2011, for the first time since she was born 155 days ago, we were able to leave the NICU / PICU area of the hospital.

I was so happy and excited and grateful. This was an incredibly important milestone because it meant that my baby girl was strong and healthy enough to leave the critical babies area.

We moved from the main floor to the second floor. We were moving up in the world!

We were one giant step closer to home.

Our new room was such a lovely change as well.

We not only did we have more room but we had more privacy.

The nurses in Unit 2 only came in when needed, so that allowed me to spend time with my baby girl without constant interruptions.

I had always been doing all her care, and now I was also doing her trach care and suctioning as well,so we barely needed the nurses. They only came in to monitor baby girls sats and to bring me her meds and bottles when needed.

I had began relentlessly pushing the subject of my baby girl being discharged and after much debate, I had finally gotten the doctors to acknowledge that yes, she would be better off at home.

By October 3rd, 2011, I had also won another battle against the docs: I was now able to breastfeed my baby girl on demand ONLY. No more bottles while I was there. She would only be given bottles if she woke up hungry during the night when I wasn’t there.

My baby girl was thriving!

By October 8th she had gained more weight and was now 8.7 lbs! This proved to the doctors that she was fully capable of thriving while breastfeeding only and on demand.

She was playing on her side and doing tummy time every day.

They doctors were astonished. I was proud. Proud of my little girl for proving them wrong and showing them that sometimes it was good to have great expectations.

Now we needed to start baby girl’s sprints.

This meant taking her off the CPAP machine starting with 15 minutes and watching how she tolerated it. If she did well then we would add more repeats during each day and longer time.

The doctors wanted to wait and not make too many changes at the same time, but I insisted because I knew in my heart that my baby girl was ready.

I remember the meetings with the doctors as if it were yesterday… I remember the frustration I felt every time they said they didn’t believe my baby girl would be able to go home for at least another 6 months for two reasons.

First reason was that they didn’t think she would be able to be weaned off the CPAP completely, which meant that in order to be discharged for home they would have to find a way to provide her CPAP at home and they did not have the right machine available in the hospital.

Second reason was that they required two caregivers to watch baby girl at night once she was at home and they said this would usually take 6 to 9 months.

To me both reasons seemed completely ridiculous and did not make any sense whatsoever.

I would prove to them that my baby girl did not need CPAP and if she did, I would make sure we got the right machine for her to go home.

And as for hiring night time caregivers, I let them know that I was a Human Resources professional and that I could post, recruit, interview, hire and train two full time caregivers within a month.

I told them there was no medical reason for my baby girl to be at the hospital. I told them I wanted an immediate outline of the criteria and steps to ensure discharge as soon as she was weaned off CPAP and I had the caregivers in place.

I was already in the process of completing our Trach Care Course as well as Infant CPR Training, so we would be ready within a month as well.

They had no choice but to agree to comply and come up with a plan for discharge.

I had my momma warrior armour on and I was not setting it down until my baby girl was home.

By October 10th, 2011, baby girl was doing one hour sprints four times a day. She was doing amazing!

Once again, I felt a very proud momma. My baby girl was showing them all that she was not only thriving but truly ready to go home.

It was time to test the car seat and stroller to make sure she was able to breathe well in them.

Success!

On October 16, 2011, we had the most wonderful day yet. We were able to take baby girl out on her stroller for the first time ever!

She was sprinting off the CPAP machine and was just on her trach craddle and 2 litres of oxygen.

I remember the nurses instructing us that we could not take her outside, that we could only walk within the Unit. I told them that was once again, ridiculous.

I was not going to take my baby girl up and down the corridors of a unit filled with sick kids.

I was going to take her outside so she could actually breathe fresh air and feel the sunshine for the first time in her life. The doctors agreed that it was safe and reasonable.

The nurses were so nervous. I ignored them and walked away with my baby girl, smiling.

I was happy and enjoying the moment. I wasn’t going to let any of their unnecessary anxiety get to me or my baby girl. I had a full hour during her sprint off the CPAP machine to take her outside and I was beyond excited.

I knew deep inside that this was a very special moment. An unforgettable moment.

As I strolled down the main lobby of the hospital and towards the front doors, I felt as if I were in a dream. I had longed for that moment for months. For exactly 174 days.

I felt such joy and gratitude.

I will always remember my baby girl’s big brown eyes looking around at everything, discovering glimpses of the vast world outside her hospital room.

The expectations had been exceeded. The limits had been pushed. The obstacles had been overcome.

As I stepped outside the hospital with my baby girl for the very first time, I cried with happiness.

So many times I had watched other parents leaving the hospital with their babies…and now I was finally able to experience it myself. During that hour, nothing else mattered. The hospital disappeared, the nurses disappeared and the doctors disappeared.

It was just us.

As I looked at my baby girl in awe of everything around her, in awe of the breeze and the sunshine on her face, in awe of the big blue sky, in awe of life itself; I knew I was witnessing a miracle.

I knew everything would be alright. I knew my baby girl would be home soon.