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.

Kangaroo mama

Malena Lola was born on Monday April 25, 2011.

I was in the NICU. It was early Wednesday morning and she was stable in incubator 36 at the NICU of the Foothills Hospital.

She was still breathing on her own with the help of CPAP – continuous positive airway pressure –  to help her not yet fully developed lungs.

I still remember how her skin looked almost translucent. But the color was a very dark red and shiny from the ointment they had put on. She was kept under a special blue light to prevent jaundice.

I would joke that it looked like she had a bright sun tan from hanging out at the preemie baby beach.

Yes, I would make silly jokes. I guess it was my mind’s way of coping with it all at the time.

I was spending the morning with baby girl. I sat on a stool next to her isolette. I wasn’t able to hold her – no kangaroo mama yet.

Her amazing nurse explained to me all about the monitors recording her heart rate, respiratory rate and blood pressure.

I remember the sounds of her monitor to this day. I would stare at the screen and look at her breathing rate. That was the one that always caught my attention the most.And her heartbeat. I would constantly listen to the sound of her heartbeat.

I would look at the monitor and look at her. Back and forth. It was hard not to get fixated on the monitor, on the beeping, on the numbers.

I tried to focus on my baby girl and forget the monitors for a moment. I sang to her. I sang her a Spanish song my mom used to sing to me I was a little girl growing up in Buenos Aires, Argentina.

My mom lived in Argentina. She was supposed to be at baby girl’s birth in August. Instead,  she got a call from my sister telling her that I had gone into premature labor and I was about to have an emergency c-section.

My mom caught the first flight to Calgary. She would arrive the next day, on Thursday.

I couldn’t wait to see her. I couldn’t wait for her to meet Malena Lola.

In the meantime, I was so thankful to have Jacquie,  my mother in law, vising as well as her husband, papa Ron.  As always, they were an endless source of love and support.

One thing I remember noticing was how different it felt for others to see baby girl in the NICU.

Malena Lola loved holding my hand.

I noticed when my mother in law saw baby girl for the first time she was taken aback by her tiny size and by all the tubes and cables attached to her. My mom would have the same reaction once she met baby girl.

Yet they were all really good at not showing the shock and staying strong for us. They could sense that I had adopted a positive and hopeful attitude, and we were determined to make baby girl’s environment in the NICU as loving and happy as possible.

Nowadays, when I look at the pictures of those early days in the NICU, I can let my emotions flow freely. And the 8 months baby girl was in the hospital would be the hardest and longest of my life. But at that time, it seemed as if an instinctive mechanism had kicked in that allowed me to go through each day and be there for my baby girl without breaking down.

I think most parents who have experienced the NICU with their newborn might relate to this state.

It is a state that allowed me to see beyond the cables, the IVs, the incubator, the monitors, the NICU. It is a state that helped me see beyond the statistics, beyond the risks, beyond the fear.

It helped me stay strong and connected to my baby girl’s desire to live.  It helped me stay focused on what was most important – love and hope.

Her little “ET” feet as I used to call them.

I spent most of that Wednesday at the NICU with my baby girl.

During those early days in the NICU I had to keep reminding myself that my baby girl was where she needed to be to grow bigger and stronger.

I would always tell her that the nurses were friends and that they took good care of her. I wanted her to feel safe and secure, even if I wasn’t with her every minute.

I knew in my mind that she needed to be in the NICU. I knew I had to trust the nurses and the doctors.

But at times my heart struggled with that.

Would they know if she needed something?
Would they realize if she needed to hear a loving voice?

It was hard not to want to be by her incubator every second. I would get anxious in my room thinking about her.

Those were the moments when the guilt would always creep in…

Why had I waited so long to be a mom?
Maybe if I were younger my body would have carried the pregnancy better.

Why had I work so much while I was pregnant?
I should have rested more.

And so on…

I knew that I shouldn’t think this way and all that. I knew it. But when I was alone in my room, thinking about my little angel in the NICU, fighting for her life, it was hard not to have those thoughts.

Once again, I forced myself to stay positive.

I wanted to hold her. I needed to do something to relieve the anguish.

I made a decision. I decided I would learn as much as I could about how to care for her in the NICU, so that I could do as much as possible. This would be the only way I wouldn’t go insane and feel helpless.

I spent the day with baby girl’s nurse at the NICU. I watched and learned.

I learned to change her tiny diapers. I learned to feed her through the feeding tube. And I would read to her.

I loved reading to her. It was another thing that helped me feel less anxious about not being able to hold her.

I felt that by cuddling her, by reading to her, by singing to her, I was nurturing her.

Even if all I could do was sit by her incubator, I was nurturing her.

Love and cuddles.

It was Thursday morning and my mom had finally arrived. And even though I had the most wonderful group of women around me, both family and friends, there was something truly irreplaceable about having my mom with me.

My mom is finally with me.

I remember when my mom first saw Malena Lola. I will never forget her reaction. She was in shock at how small she was. She couldn’t speak. I could tell she was holding back the tears.

My mom hugged me. I felt my eyes watering. I didn’t want to break down in front of baby girl. I struggled but I held it together. I would let myself have a good cry later, in my room, with my mom.

I was happy to have my mom there to spend time with, to talk to, to cry with. She would stay for about a month.

We sat next to baby girl’s isolette and talked about how beautiful she was. My mom said the dark hair reminded her of me when I was born.

Suddenly the nurse asked me if  I wanted to hold my baby girl. I will never forget that moment.

It literally took my breath away. It took me a few seconds to respond.

I looked at my mom. I looked at the nurse.

Of course I wanted to hold my baby girl!

I had been wanting to hold her since the moment I felt her in my belly for the first time. Since I had saw her in the first ultrasound. Since I felt her being taken out of my belly last Monday.

I would finally be able to do kangaroo care – skin to skin contact. This was so beneficial to baby, to her health, to our bond.

I remember the nurse brought a special reclining chair for me to sit in. I had to put on a gown open at the front so I could hold my baby girl skin to skin, kangaroo care style.

I sat in the chair and watched as two nurses brought baby to me. One held baby and the other held all her IVs and cables.

Then, very gently, they laid her on my chest.

The best feeling in the world – finally holding my tiny mighty girl.

I felt so much love and emotion. I started crying.

There was no holding back tears at that moment.

I will forever carry that moment in my heart. Feeling her tiny little body so close to my heart. Nothing else mattered at that moment. Life was just as it should be.

No words were said. No words were needed. I was overwhelmed by pure love and gratitude.

It was a perfect moment. Unforgettable.

Kangaroo mama with my precious tiny mighty warrior.

I remember holding her and feeling like my entire life had led me to this very instant.

I would forever be defined by that moment.

I was officially a kangaroo mama. And I loved every minute of it.