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.


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.