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.

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.