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.

New beginnings

Baby girl had fully recovered from the post tracheotomy pneumonia and was loving life without the ET tube.

She was off the ventilator and breathing on her own requiring 35% oxygen.Malena Lola 1I felt deeply grateful and happy, but I did have moments when I felt very sad. I longed to hear my baby girl cry and laugh.

I kept those thoughts away by focusing on the positive and all the amazing progress our little miracle was making.

I focused on enjoying each little milestone my baby girl reached. Those were precious moments and they were to be cherished fully without any dark thoughts hovering.

Like the day we were able to sit her in her little chair for the very first time. She looked so tiny in the new pink chair that her grandpa Ron and grandma Jacquie got for her.

Male chair 2I remember feeling so happy to see her somewhere other than in her hospital crib. It was just exciting to have a little change and see her progress like that.

I realized early on in this journey that it was essential to let myself fully celebrate these moments. It was important to try and do things as close to as we would if baby girl was home.

It was a key to surviving the NICU as a parent – finding joy and hope in those moments where I almost forgot that we were in the hospital and for a brief instant enjoyed our baby girl as if she were home.

Male chairAnd it was those moments that filled me with strength and courage to continue the journey alongside our tiny but mighty warrior.

It was time to be brave again. It was time to try new things.

On August 25, 2011, she had her swallow test. This involved me holding her on my lap at the ENT clinic, while her ENT put a camera down her nose all the way down her throat. Then they observed her vocal cords moving and her swallowing by having baby girl drink some green tinted breast milk from a bottle.

It was not a very pleasant experience for baby girl as she hated every second that camera was in her nose, and I hated having to put her through that…but the results were worth it. She could swallow perfectly!

I had no doubts that my baby girl could swallow well because she had been swallowing the breast milk I had been giving her almost every day through a small syringe. Nevertheless,  the ENT required this test in order for him to approve her oral feeds.

Approved!

Now we could start increasing her bottle feeds and decreasing her NG tube feeds. I couldn’t wait to be able to feed her 100% through her mouth and get rid of the NG tube taped to her face.

I was also very eager to start breastfeeding my baby girl. I thought that would be the easiest and best thing to do.

The doctors disagreed.

They kept saying that trached babies don’t breastfeed. I asked why and they didn’t really have a good answer. I insisted so finally they said that usually trached babies can’t coordinate the suck-swallow-breathe part of it and also the positioning is difficult.

Both reasons seemed completely irrelevant to me because my baby girl could suck-swallow-breathe just fine and as for the “difficulty” of the positioning, that wouldn’t be an issue.

Difficult was my middle name.

I have always been told I am very stubborn, but I prefer to consider myself very determined.

I was on a mission to breastfeed my baby girl and I wasn’t going to let any doctor tell me I couldn’t try.

I had also come to learn that I should always let my baby girl tell me what she could or couldn’t do. What she could or couldn’t tolerate.

I should listen to her and give her a chance to try. I shouldn’t limit her simply because she was a preemie baby.

I had decided that I would also never let the doctors just predetermine her capabilities  based on their experience with other preemies. Each child was unique and deserves the opportunity to try. As long as I wasn’t doing anything life threatening, I was going to give my baby girl the chance to breastfeed. I wasn’t putting her at any risk by trying.

I felt very strongly about this. I knew that breastfeeding was the best thing for my baby girl.

It was during this time that I found my own voice and confidence when dealing with the doctors. It was during this time that I learned to fully trust my instinct and to question the doctors when I needed to.

I learned that it was my right and my duty as her mother and advocate to ask, to question and to push the doctors when it was necessary.

I wasn’t going to let any doctor determine what she could or couldn’t do without letting her try first. She was going tell us if she could breastfeed or not.

First things first, we started bottle feeds of 15 to 20 millimeters at a time.Baby girl took to the bottle right away and loved it!

She tolerated her bottle feeds great but was getting very irritated when she finished the 20 mls of bottled breast milk, she wanted more!

The doctors wanted to go slow but I started pushing them to allow more breast milk in each bottle feed.

They were afraid she would burn too many calories bottle feeding or that a larger quantity of breast milk would affect her lungs, so they wanted to take it slow.

The problem was that baby girl was so frustrated when she finished the 20 mils of breast milk per bottle that she would suck on her soother for hours. She had never done this before.

I started pushing the doctors to allow me to give her more breast milk per bottle feed. I had to push them and push them.

I told them it made no sense to have baby girl sucking on a soother for hours. If she was able to bottle feed more she would at least be nourished while sucking.It was clear that she knew better than any of us what she needed. She wanted to eat every hour or two, and she wanted to bottle feed. She hated the NG tube now. She never felt satisfied anymore.

Now she knew what it was like to feel a full tummy after a bottle feed. She wanted more of that. It was only natural.

I told the doctors I was going to feed her more milk more often. I would not wait for them to authorize it.

They had no choice but to agree.

On September 6, 2011, I started giving baby girl 4 bottles a day, each with 80 millimeters of my breast milk. I had continued to pump all along and had two freezers filled with my breast milk. In between bottle feeds she was still getting more of my breast milk through the NG tube.

Baby girl was so happy with the bottle feeds and she  tolerated them beautifully.

I knew it was time to try breastfeeding. I knew she was ready.

Of course the doctors were against it.

They were afraid because they couldn’t control how much milk she drank when breastfeeding. Poor docs. I knew they were doing the best they could and I truly appreciated them, but I had to follow my instinct and do what I felt in my heart was best for my baby girl.

I told them I wanted to try it and they couldn’t stop me. It was time.

I had been longing for this moment since my baby girl was born.

I will never forget the first time I breastfed my baby girl. It was on the morning of September 7, 2011, exactly the day after she outgrew her preemie diapers.

Just as I had known in my heart all along, my baby girl started breastfeeding immediately, she loved it!

She knew exactly what to do and it was one of the most wonderful moments of my life. I cried, but it was a happy cry.

The doctors were in awe of her ability to breastfeed. Some of them even apologized to me for being overly cautious, but they congratulated me for being persistent and trusting my instincts.

I celebrated this incredible moment and forgot about all the struggles.

My baby girl and I were sharing that unforgettable moment. Nothing else mattered.

As I held her in my arms and watched her look up at me while she was breastfeeding, I felt as if we were home. In our own little universe of love and happiness.

My baby girl was happy. My heart was happy.

It was time to be positive and hopeful. It was time to enjoy our blessings.

It was time for new beginnings.