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.
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”.
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.
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.
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.