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.

Strawberry miracle

It was the day before Halloween, October 30th, 2011, and I was very excited to get to the hospital to show baby girl her first Halloween costume.

I arrived early, as usual. Baby girl was still asleep.

I loved watching her sleep. I loved being there when she woke up.

After she woke up I breast fed her and gave her a bath. Then I did her trach care and changed her trach ties.

I noticed that her trach area was smelling rather cheesy so I let the nurse know. I also noticed her secretions were yellow and a bit bloody, so I took a sample and the nurse sent it to the lab.

The docs started a round of antibiotics as they suspected a staphylococcal infection, a bacteria which baby girl had a tendency to grow and was easily susceptible to.

This infection caused baby girl to need a bit more oxygen so it was bumped to 45% to keep her sats high and prevent her from working harder to breathe. The doctors also decided to give her some Ventolin as needed, as it seemed to help with the tightness and wheezing in her chest, as well as help loosen up the sticky secretions.

I was relieved that she was not struggling to breathe and that she was battling the infection without major complications.

Once again, I felt the urge to have her home.

I kept thinking about how vulnerable she was in the hospital to catching infections. This was the fourth time she had caught this same bug. So many nurses and doctors coming and going each day…I was anxious to get her away from such exposure and get her home, where she should be.

In my efforts to push for my baby girl’s discharge as soon as possible, I discovered that the system, as usual, is slow and in this case, not prepared for discharging preemie babies quickly.  Which meant I had to follow up on the doctors and discharge team daily and make sure they were getting things done.

At times it felt as if they were trying to keep my baby girl in the hospital for as long as they could instead of help to get her home as soon as possible. I always felt that I had to fight to get her home. It shouldn’t have been that way, but it was. And I had learned to handle that by then.

I was nearly ready for my baby girl to come home on my end. I had completed the trach training course as well as the Infant CPR Training. I had selected the company that was to provide us with the home oxygen equipment. I had posted the ads for night time caregivers and was screening and interviewing.

All I had left to do was complete the hiring of the caregivers and complete the home visit with the Respiratory Home Care team to ensure we met all the safety criteria at home.

I would have all that completed in less than a month. I kept reminding the doctors that I wanted my baby home for Christmas.

As always, they kept trying to slow things down. They said thatl now that she was a little sick we would have to stop the sprints off the CPAP machine. This was a typical reaction from the doctors…each time there was a change, they wanted to go 10 steps back and hold any progress.

I was used to their way of thinking by now so once again I reminded them that we would let baby girl determine what she can and cannot tolerate. I knew she needed to be completely off the CPAP in order to go home, so I told them that as soon as she was better we would continue the sprinting right where we left off.

Baby girl had been successfully doing 2 four hour sprints a day. I wanted to get her to do a full 8 hours so that we could start our day passes while we finished getting her discharge all set up.

In the meantime, I was happy to see baby girl active and playful. It was almost as if she knew she had more important things to do besides being sick. Like celebrating Halloween!

And she was right. We were going to enjoy her first Halloween no matter what.

I decided to stay with baby girl overnight, as I always did if she wasn’t feeling 100%. I always felt that my being there to comfort her helped her heal better. Besides, I loved spending as much time as possible with my baby girl.

By morning she was already feeling a lot better. Her oxygen was back down to 35% and her secretions were less sticky and yellow.

I was very grateful because baby girl had always responded well to treatment and medication. Her tiny but mighty body had always fought off the nasty bugs quickly and efficiently.

Besides, it was Halloween and there was no time to be sick. It was time to get dressed up.

We had gotten her a little strawberry costume, the smallest we could find, which was still a bit big.

She wasn’t quite sure what to make of it at first. After a few minutes she started having fun with it.

It was so much fun dressing her up. All the nurses and her docs popped by to see her the cutest little strawberry ever.

It was another one of those unforgettable moments that I will forever cherish in my heart.

After Halloween, baby girl completed her round of antibiotics and was fully healed from the infection. And yes! She was now successfully able to sprint for 8 continuous hours off the CPAP machine!

This meant we could request day passes to take her home for 8 hours. All we needed to do what complete the home visit on November 8.

Little did I know that I would forever remember that day as one of the scariest moments of my life.

The day of the home visit, I went to the hospital first thing in the morning as usual and I let the nurse know that I would be stepping out for about 2 hours at the most, because I had the home visit at 11 am.

I left baby girl all cleaned up, fed and napping.

I got home and met with the home care visit team. Half an hour into the meeting I get a phone call from the hospital. As always, My hearts starts immediately racing because I know something bad happened each time they had ever called me.

Unfortunately, this would be not the exception.

Baby girl had her first Code Blue ever. She had stopped breathing. My heart stopped.

They had managed to resuscitate her and she was now stable.

I rushed to the hospital.

When I arrived, my baby girl was sleeping. The nurse, the respiratory technician and the doctor where there.

I was shaking. I asked them what had happened and they explained to me that one of the Pulmonary doctors had put her on an HME to see if she could go home with that instead of the CPAP machine.

I asked them what type of HME because we had done previous trials and she could only handle the Neonatal Hygroscopic Condenser HME but not the Swedish Nose HME. There a very significant difference between the two in size. The last time we had tried the Swedish Nose HME she wasn’t able to breathe well with it as it is a larger HME and it was determined that her her lungs were not strong or big enough for it yet.

When they told me they had put the Swedish Nose HME I lost it. I couldn’t believe they could make such a mistake at the hospital. They gave my little girl a Code Blue!

The first and only one code blue she would ever have and it had been caused by one of her doctors. I was livid.

I also couldn’t understand why they would do that during the 2 hours I was gone. I had always left explicit instructions that I was to be present when those types of trials and changes were made.

I was at the hospital every day from morning until night.

Why would they do this during the 2 hours I was gone!

They had not only failed to tell me they were planning to do that, but also made the unacceptable mistake of not reading her file and using the wrong HME.

I got apology after apology. I no longer cared what they had to say.

The thought of my little girl struggling to breathe because of a device a doctor had put on her made me sick to my stomach. The thought of her having to be resuscitated because of a human error made me angry in a way I never knew I could be.

I consider myself a very reasonable, understanding and forgiving person.

At that moment, I was none of those things. I let the doctors and the staff know exactly how I felt.

I told them I prohibited anybody from carrying out any sort of trial or changes to my little girl if I was not present.

I told them I had lost trust in the hospital staff. There had been too many careless mistakes…the IV burn to her foot, the nurse forgetting to strap her into her chair causing her trach to fall out and now a code blue caused by one of her doctors using the wrong HME on her.

That was completely unacceptable. That could have cost my baby girl her life.

I asked everyone to leave her room. I wanted to be alone with my baby girl.

I held her until she woke up.
I told her how sorry I was that she had to go through that.
I promised her that I was going to get her home as soon as possible.

She looked at me and my heart filled with gratitude.
Her eyes always had a way of reminding me of what really mattered.

Right now what mattered was that my baby girl was happy in my arms and staring up at me with her big brown eyes.

She had been through so much and yet she had the brightest and happiest spirit of anyone I had ever known.

She was so strong. She never ceased to amaze me.

She was my tiny, mighty strawberry miracle.