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.

Warrior

It was mid September and our Malena Lola was doing great.

SootherShe now weighed 3.25 kilos (7.17 lbs) and was still thriving with breastfeeding and bottle feeding. We were working our way to breastfeeding on demand only.

She was no longer on a ventilator but on external CPAP with heated humidity, which was a wonderful improvement. This meant her tiny-mighty lungs were getting stronger and we were one one step closer to going home.

Yes, home.

I was finally starting allow myself to think about having our little girl home. I had tried not to think about that too much before because I knew we were a long way from getting there. But now, seeing her improve and grow so well, I started to feel that it was possible that my baby girl would come home for Christmas.

That was my goal. I felt it was realistic because it allowed time for her to get to where she needed to be to come home, and it gave Brad and I time to prepare everything on our end.

Of course when I even mentioned the thought of my baby girl coming home to the doctors, they were all extremely serious and told me that having her home for Christmas was a long shot at best, practically impossible.

By then I had already learned that my expectations always exceeded the doctors expectations. 

I was determined to do all I could do to get my baby girl home by Christmas.

Soother 2In the meantime, my goal was to get her just breastfeeding on demand and off the CPAP. 

Once baby girl was off the heated CPAP, we would be able to get her onto a portable machine for home instead of the hospital heated CPAP which was attached to the wall. Once baby girl was free form the hospital walls, literally, there would be no reason for her to stay at the hospital. And I fully believed she was capable of achieving that.

It would take a bit of pushing the doctors and RTs (Respiratory Technicians) to sprint her off her current machines.

It would be a process, but I was sure she could do it.

I remember thinking about winter coming and that meant that RSV and flu season would start, and every sick child would be in that hospital. I did not want to keep my baby girl around RSV, flu, pneumonia, bronchitis…etc.

I had no doubt that baby girl would be safer at home.

I started by asking the doctors questions and learning what the criteria was for baby girl to come home. It was nearly impossible to get any straight answers. It was almost as if they wanted to keep in the hospital as long as possible. They did not believe baby girl would be ready to go home in December.

I disagreed.

I realized this wasn’t going to be easy so I contacted the Social Worker and our Home Care Case Worker.

I began learning all about what Brad and I needed to do as parents to be ready for our baby girl to come home.

In the meantime, I kept breastfeeding my baby girl and pushing to reduce the bottles more and more so that we could get to the point where she was breastfeeding only. The nurses weighed her daily and she was consistently gaining weight, so we were on the right track.

She was even outgrowing her preemie clothes! It was time to get baby girl newborn sized clothes. That was a wonderful milestone. I was really excited to buy her clothes. I hadn’t been able to really do that until now, so I decided to go shopping for my baby girl.

I remember it was Sunday morning on September 19th, I woke up very early as usual and called the hospital first thing to check on baby girl. She was doing fantastic and was still sleeping. I told her nurse that I would be in shortly.

When I got to the hospital, baby girl was awake and playing. I spent a couple of hours with her, she was happy and smiling as usual. My sister Melisa arrived and spent some time with us. Auntie Melisa had brought baby girl a dress from her trip to Jamaica and we put it on her.

It was so much fun to see her in a dress! Her first dress!

We played and I breastfed baby girl. Then she fell asleep. My sister and I were waiting for her nap time to pop over to the mall.

I let the nurse know that I would be stepping our for an hour or two at the most, as I would be going to the nearby mall to get some new clothes for baby girl. I left her changed, fed and asleep in her crib.

After 30 minutes at the mall I got a phone call. I saw the number and I immediately knew it was the hospital. My heart started racing.

They hospital never called unless something was wrong.

I answered and a lady introduced herself as the Director of the PICU. I started feeling my heart pounding and the fear rushing through my body. I cut her off immediately and asked her if my baby girl was OK. She said yes, but there had been an accident.

I cut her off again and I ask her if my baby girl was breathing OK.

She said yes but she had accidentally slid off her chair and her trach came off.

At this point I start hyperventilating. I try to not yell, but I am too nervous. I remember asking what happened really loud and my sister  asking me what was wrong. I could hardly think at that point.

I was so scared. I told my sister we had to go to the hospital right away.

I told the lady on the phone that I was on my way and hung up.

Luckily we were not far so in just a few minutes we arrived at the hospital. I ran to the PICU and straight into my baby girl’s room. She was sleeping.

An RT (Respiratory Technician) was with her and a nurse. I asked them how she was doing. They assured me that she was alright. I asked them what happened and then the Director of the PICU came to see me and explained the incident.

I was shaking.

Apparently baby girl woke up and her nurse decided to put her in her chair on the crib, but forgot to strap her in.

Yes, she forgot to strap her in. I know…unbelievable.

And then left baby girl there and an RT walked by and saw baby girl in a very awkward position, with the bottom half of her little body on the crib while her head rested on the bottom of her chair.

She had obviously moved and slid off the chair and onto the crib. The problem was that the tubes from her trach were attached to the wall and not mobile, so her trach had been pulled out and her sats were low. She was struggling to breathe.

The RT immediately reacted and put her trach back in and made sure she was breathing well again.

As I was listening to the details of the incident I tried to stay calm, but I could feel the anger in my body…

I was so scared that she would have lacked oxygen…

The PICU Director assured me that it was only a matter of seconds and that there were no negative consequences for my baby girl. She apologized to me repeatedly and said that we could have a meeting later to discuss it further and decide on what we wanted to do about the nurse.

I did not care to discuss anything further at that moment. I didn’t want to see that nurse right now. I was too mad.

I just wanted to hold my baby girl.

A part of me knew this was an accident BUT IT should never have happened.

How could the nurse forget to strap her in?
What if the RT hadn’t seen my baby girl at that moment?

I couldn’t help have horrible thoughts pouring into my mind. It had taken me months to feel somewhat comfortable leaving my baby girl in the hospital without feeling extremely scared and guilty. And now this…

The one day I decided to go out for an hour or two this horrible incident happened…I felt guilty again.

I shouldn’t have gone, I should have been there.
If I had been there this would not have happened.
Why did I leave?

I cried. The thought of losing my baby girl was unthinkable.

I was angry. But most of all I felt tired.

I was tired of having my baby girl in the hospital.
I was tired of strangers looking after my baby girl.
I was tired of the doctors always being against moving forward and setting limits on my baby girl.

I knew at that moment that I had to get my baby girl home. She was past the stage where she needed to be at the hospital. She would be safer at home. It was time.

Then baby girl opened her eyes and gave me a smile. We both knew.

It was time to fight a new battle. It was time to fight to bring her home.

I told her how much I loved her and how sorry I was that she had to go through such a scary moment.

I picked her up and held her tight.

Holding my baby girl after such a scary moment filled me with hope and strength again. I was so grateful that she was well.

All my fears and guilt disappeared. All I felt was love, hope and determination.

I was going to have her home by Christmas and no doctor or hospital staff was going to stop me.

I then gave explicit instruction and also made signs in her room that my baby girl was not to be placed anywhere other than her crib unless I was present.

I also requested that the nurse responsible for the incident never care for my baby girl again.

My momma warrior armor was back on.