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.

To breathe or not to breathe…that is the question

Malena Lola had been stable for the first few days in the NICU.

It was now Friday April 29, and she was 4 days old. I was being discharged from the hospital that day. I was doing a good job of looking like I was holding it together while inside I was freaking out.

Going home after having your baby should be one of the happiest moments in life. Instead I was feeling frustrated and nervous. I didn’t want to leave my baby girl behind but I didn’t have a choice.

The lack of control made me feel really desperate. I wasn’t used to not being able to change a situation.

I was having a hard time accepting things.

I was used to finding solutions, persevering, fixing things. But there was absolutely nothing I could do in this case. There was nothing I could do to change the fact that my baby girl could not come home with me.

I had thought about this moment and I knew it was coming. I had tried to prepare myself for leaving her in the NICU. But it was harder than I anticipated.

The scary thoughts started running through my mind again…

What if she needed me and I wasn’t there?
What if something happened to her and I wasn’t there?
What if I couldn’t get to the hospital fast enough?

I needed to calm down. I was going home that afternoon and I needed to accept that.

I went to see baby girl again before heading out.

I remember telling her that mommy would be back very soon and that all her nurse friends would be taking good care of her in the meantime.

I was given the NICU phone number as well as the phone number to the area of the NICU where her isolette was located. I would be able to call anytime, day or night. I would be able to visit anytime, day or night.

I remember being very calm and collected on the outside, yet devastated on the inside. That was typical of me. Keeping it together.

I did a good job of keeping it together right up until I was walking through the lobby of the hospital on the way out and I saw a couple carrying their newborn out in a baby car seat.

I broke down. I started crying.I cried in the car all the way home. I cried when we got home.

I remember I sat on the couch holding my little dog Rio. I sat there for a while.

I just couldn’t stop crying.

Once again, I couldn’t control the situation. I couldn’t control my crying. I had to accept it.

That night I didn’t sleep very much. I called the NICU several times to check on baby girl. I allowed myself to call whenever I felt the need. This helped relieve my anxiety.

The nurses were lovely in taking all my calls and letting me know all the details of how baby girl was doing.

First thing in the morning, I went to the hospital to visit baby girl. I spent the day there.

This would become my daily routine for 8 months. Get up early, head to the hospital, spend the day with baby girl, come home and try to sleep.

I remember some people telling me I should do other things and not spend all my day at the hospital, but I just couldn’t ignore my instinctual need to be with my baby girl at all times.

It was bad enough I wasn’t spending day and night with her. I simply needed to be with her during the day.

My mom was still visiting from Argentina, so she would come with me and keep me and baby girl company. She was staying for a month, so we tried to spend as much time together as possible.

Three generations of love – my mom, baby Malena Lola and me <3

Those days spent with my mom were truly special.  I loved talking about motherhood with her.

I am the oldest of four, I have two brothers and a sister. I remember thinking what a superwoman my mom was for having had four children. I was always amazed at the fact that she had me when she was just 17 years old. This was way back when MTV’s Teem Mom shows didn’t exist yet…

Baby girl seemed to enjoy kangaroo care as much as I did. She loved cuddling on my chest. She would look around a little, sometimes hold my finger and then fall asleep.

At first I would hold her for half an hour to an hour, and as we saw she tolerated cuddles well I would hold her for 4 hours, sometimes 6 hours.

Cuddling my baby girl was the most relaxing feeling. I think it was probably the only time when I would actually fall into a relaxing sleep, even if only for a few minutes at a time.

These first few days in the NICU with baby girl breathing on her own and being stable had been a true blessing.  I would later learn that this early time in the life of a preemie baby who is not having any complications is sometimes called the “honeymoon period”.

The honeymoon was about to be over.

On May 6 the phone rang in the middle of the night. It was the hospital. I knew something was wrong right away because they only call if there is a problem or an emergency.

Malena Lola’s breathing was dropping and the doctors were struggling to keep her stats stable.

We rushed to the hospital. I remember the drive to the hospital. I was silent. I think I was too afraid to say anything or even think anything.

I felt this pain in my chest. I just wanted to get to the NICU. I wanted to see my baby girl.

I remember running up the stairs to the NICU.

I had to wash my hands before going in and put on a gown. I was trying to be as fast as I could.

When I got to baby girl’s isolette, I saw several doctors and nurses around it.

The doctors started explaining to me what was going on. She was struggling to breathe. I could see her tiny chest making a big effort to get the air in.

The doctors also told me that they had done an ultrasound and found that a valve in her heart was not closed as it should be, so they would probably have to do surgery – a PDA ligation – in the next few days if she stabilized, as this was a probably causing her breathing distress.

The words “if she stabilized” shocked me. I wasn’t prepared to hear that “if”.

The doctors explained that they were giving her doses of caffeine to help her lungs. They also were giving her doses of ibuprofen to try to close the valve in the heart.

I went over to see baby girl.

I put my hands inside her isolette and held them above her. I wanted her to feel my love, to feel safe. I told her that mommy and daddy where there and that everything was going to be alright.

It was truly heartbreaking to see her struggling so much just to breathe. I felt so helpless. I wanted to make her well, to heal her. But I couldn’t.

Again that feeling of not being in control overwhelmed me. I had to surrender to what was happening and be strong for my baby girl.

The doctors were increasing the oxygen levels given to her but her stats kept dipping. She was getting tired.

They told us they would have to intubate her quickly as she didn’t seem to be able to keep her stats on her own. Then they would have to connect her to a ventilator to give her oxygen to help her breathe. They would also treat her with nitric oxide to help her premature lungs.

The doctors asked us to step out. I said no, I am staying right here with my baby girl.

They said that usually parents can’t handle watching their baby be intubated. I said if she has to go through it, I would be there for her no matter what.

That became my mantra. If my baby girl had to go through it, mommy would be there for her.

The doctors and nurses prepared for to intubate baby girl.

It is not a normal situation for any parent to watch their child in any form of pain o distress not be able to jump in and make it better. It is hard to take a step back and trust that the doctors and nurses will make it better.

I had to trust. If I trusted them, if I had faith in them, then my baby girl would feel that and that would help her feel less scared. I didn’t want her to sense any fear or doubt in me.

I put my hands in her isolette one last time before the intubation and told her that mommy and daddy would be right there for her. I told her not to be afraid. Her friends the doctors and nurses would make it better and then we would be able to cuddle again.

I stood there while I watched the nurses hold our little warrior angel while the doctor proceeded to intubate her. 

It was really hard to watch. Baby girl was not happy about being intubated at all. Who would be…

To watch your child go through an intubation or any type of invasive procedure is truly the most horrible, scary and frustrating experience. The fear of something going wrong…the feeling of your child suffering…the feeling of utter helplessness is infinite.

I had already seen her get IVs in her tiny hand, and they had started to shave her head to put IVs there as the veins in the head are easier for IVs.

But intubation was worst.

But I couldn’t break down.

I had to stay strong. My baby girl had to go through an intubation so the least I could do for her was be there to comfort in some way.

I trusted that this could help save her, as she was really struggling to breath.

Once intubated they worked fast to connect her to the ventilator and find the right settings for her.

I stayed close to her. It was tough to watch her with this tube coming out of her mouth, all taped up. The tape covered so much of her face. She wasn’t able to close her mouth.

And so intubation begins…

I thought about how uncomfortable she must be. I couldn’t imagine having a plastic tube shoved down my throat, taped to my face and kept there.

I didn’t even think at that time about how long she would remain intubated. It was all about ding what she needed at that moment.

I had no idea that it would be a very long time until I would be able to see her beautiful face again without the tube and the tape.

At that moment, all that mattered her being stable and being able to breathe comfortably again.

But while we stood there watching her rest after the stress of the intubation, I couldn’t help the unwanted thoughts…

Would she have any brain damage?
Was she in pain with that tube in her?
Was she going to be OK?

So many questions, so many fears. Such few answers.

The ventilator was all set up. A new machine, with new monitors, new sounds, new alarms.

We were grateful that baby girl was stabilizing. She seemed to be responding well to the oxygen through the ventilator. Her stats were better and she seemed to be struggling less and less to breathe.

All this had happened in a matter of minutes.

Little did we know that she would have to stay intubated for many, many minutes…too many to count.