Off to the beach!

It’s been months since I have written a post. So many amazing things have happened. Malena Lola turned 3 years old this past April 25, 2014 and she is speaking!

It’s been quite the journey to get to this stage…last year I felt Malena Lola was ready for her airway surgery, but her doctors were reluctant for no clear reason…finally I requested a meeting and demanded clear answers. They had none. I insisted and finally they all agreed that there was no real reason to wait. The surgery was finally scheduled.

It never ceases to shock me how much I have had to push doctors to do what is needed…anyways…

Malena Lola’s final big surgery was last September 2013. She had airway reconstruction surgery which involved lasering the scar tissue obstructing her upper airway and then taking a tiny piece of one of her ribs to shape a tracheal ring. This ring was then placed in her airways to open it up to the size it should be for her to breathe through it.

The surgery itself took about 3 hours all together and was very successful, however the five days after the surgery were the hardest of my life…

After the airway surgery Malena Lola had to remain sedated and paralized in order for her airway to heal properly. It was critical that she did not move at all.

As always, I stayed in the hospital with her, in the PICU. Those five days were extremely difficult because it was very hard to see my very active little girl sedated and paralyzed. And the worst of it all was that she got a lung infection which was hard to treat due to her sedation and all. I stayed with my little girl day and night. I remember feeling so responsible for what she was going through because I had insisted on the surgery…I had to chase away the fear of losing her and remind myself that she was a strong little girl, a warrior, and that all would be fine.

After five sleepless days, she was ready to come out of sedation and paralysis. I couldn’t wait to see my little girl open her eyes and smile again.

After she woke up we spent two days helping her swallow and making sure she didn’t choke.  More sleepless nights but all worth it. Malena Lola was awake, moving, smiling and finally eating again. We could now go home. The surgery had been a complete success.

Now that her airway was repaired, she could start wearing a speaking valve! I had been dreaming with the day I could hear my little girl’s voice for almost 3 years!

I will never forget the first time she made a sound. Sweetest voice I had ever heard. I cried with so much gratitude and happiness!

I remember being amazed at the fact that we could hear her sneeze, cough, laugh, cry…such simple things that we cherish so much.

Malena Lola  took to speaking right away, she immediately loved being able to be vocal.

Her first word was “Booba”, as she loves breastfeeding…and her second word was “teta” which is booba in Spanish.

But something even more amazing happened just this past May 5, 2014 – Malena Lola was successfully decanulated! She is finally trach free!

There were many times when I wasn’t sure if I would ever hear my little girl’s voice or if she would ever be trach free. Now that has all finally happened and I am thrilled for what this new stage will bring.

Malena Lola continues to live each day to the fullest. Never letting anything stop her. She is the most inspiring and joyful spirit I know. She is speaking more and more each day in both English and Spanish. The sound of her voice never ceases to amaze me. I am forever grateful for the journey that brought us to this day.

lola decanulated

Malena Lola is free to sing and fly!

We are off to our first family vacation since Malena Lola was born. We couldn’t be more excited. Off the beach! Ocean here we come!

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.