PDA stands for Patent Ductus Arteriosus

Malena Lola continued to be stable after her recent intubation.

It had been hard seeing her go through that. I missed seeing her face free of tape and tubes, but I was past that now.

I was grateful that she was alive and breathing.

I was trying to get used to seeing her hair shaved off for IVs… I remember thinking that they should just shave it all off instead of leaving these bald patches. But I didn’t have the heart to shave it all off.

It seems funny to me now that I care about her hair at that time. But I did. There was something very special to me about her newborn hair.

I kept all the hair that was shaved off my baby girl. I still have it.

After the intubation we had to wait till the next day to hold baby girl again. In the meantime, I was encouraging her to suction by using a preemie soother and putting drops of my breastmilk on it. She loved it!

I was so happy to be able to nurture her in this way.

This was so important for baby girl because if she could suck and swallow well, maybe she would be able to take a bottle or breastfeed in the future. I wasn’t going to give up on the idea of breastfeeding yet.

I felt useful again. The anxiety was relieved. I couldn’t wait to cuddle her. I missed her tiny warmth cuddling on my chest. Patience.Tomorrow I would be able to hold her again.

Or so I thought…

The tiny preemie soother was still too big for our tiny but mighty princess. But it helped teach her how to suction.

The tiny preemie soother was still too big for our tiny but mighty princess. But it helped teach her how to suction.

The next day I woke up with the worst pink eye (conjunctivitis) I have ever had. I couldn’t even open my left eye and I could barely see from my right eye. The pain was horrible. And to make things even more “fun”, I had eczema all over my body.

I felt like I was falling apart.

I had to go to the emergency and get treated with an ointment and heavy antibiotics.

It was a nightmare. I couldn’t go see my baby girl. I had to stay away for 5 days to make sure both the eye infection and the skin irritation had cleared.

I can only describe those 5 days as the longest 5 days of my entire life. Staying away felt like torture.

I knew this wasn’t my fault but I still felt guilty not being there for my baby girl. And again I felt completely helpless. I had no control over my body, yet again.

I felt angry and powerless. There were moments where I felt I hated my body for doing all this.

I didn’t want to be sick!

Why was this happening? Why? Why? Why?

Of course at that time, I didn’t have an answer. I couldn’t find a reason. Now, in retrospect, I know that it was my body’s way expressing the pain and sadness I felt.

I cried a lots during those 5 days. It was healing in a way.

One of the worst moments was that Sunday because it was Mother’s Day.

It was so bittersweet because I was spending Mother’s Day with my mom, who was visiting still from Argentina. We hadn’t been together on a Mother’s Day in years. But I wasn’t able to spend my first Mother’s Day as a mom with my baby girl.

That broke my heart.

I was grateful that my mom was able to be there for me and help me get through those 5 horrible days away from my tiny but mighty warrior.

Looking back, I can see the lessons I’ve learned from each moment. I know it sounds very cliche, but I do believe that everything happens for a reason and to teach us something, whether we realize it or not. Or at least that is how I like to look at my life experiences. I try to find the lesson to be had.

I truly believe that those five days that I was forced to stay away from my baby girl allowed me to purge a lot of the pain I had inside. I was putting a lot of effort into keeping it together and staying positive. But there were negative emotions that I needed to acknowledge and let go off, whether I like it or not. Whether I wanted to or not.

Once again  I realized I had to allow myself to be vulnerable. I had to surrender all control and embrace the present, no matter what. Even if that present meant having bad pink eye and nasty eczema.

This would be my hardest lesson to learn.
It would take a few tries until I got it…

Finally after 5 long days, I was able to go see my baby girl.

I was beyond excited. I remember noticing she had gotten a bit bigger. She looked more beautiful than ever.

It was time for cuddles with my baby girl. It was also time to get used to kangaroo care cuddles with the tube. That would require moving in very slow motion and using lots of tape.

The nurses would place baby girl on my chest and then tape her tube below my shoulder area in the right angle. I was not to make any sudden moves as this could cause her to extubate. Meaning her tube could come out or it could pull too hard and either of those things could damage her airway. Not to mention extubation could cause her to desat – which is desaturation or low blood oxygen concentration.

I still remember that first cuddle with her being intubated.

I loved having my baby girl on my chest again. I had missed her so much. I was so grateful to hold her again. But I was also hyper aware of the tube that was coming from her tiny airway and was taped to me.

I tried to relax and concentrate on baby girl. But I never fully relaxed. I was still too scared of pulling her tube.

I didn’t want this fear to take away from my cuddles with baby girl so I tried hard to focus on her and on breathing. This helped me relax a bit more and not be so paranoid.

I realized afterwards how tense I had been when I felt how sore my neck and chest muscles were… I would get better at it as time went by.

For now all that mattered was that my baby girl was well and I was holding her.

Cuddles at last.

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My little bliss moment would last just that, a brief moment.

The doctors would approach us to discuss her PDA ligation surgery.

I had completely forgotten about that. About her open valve. About the fact that if it still hadn’t closed she would require surgery. Minor surgery, but that didn’t make it less scary.

Yet there was the hope that the PDA ligation surgery would help her lungs breathe on their own again, without having to be intubated and on  vent.

I remember the nurses telling us that having a preemie baby is a roller coaster ride, because of all the ups and downs. Funny I had always loved roller coasters. I always thought they were exciting and fun.

I didn’t like this roller coaster at all.

But once again we stayed positive and hoped the ibuprofen and caffeine treatments would work.

We hoped. We waited.

The treatments did not work. They would have to do the surgery.

On May 25 we celebrated baby girl’s first month with us. She was now 980 grams – 2.17 pounds. We felt so lucky to have her in our lives. So grateful to be her mom and dad.

On May 27 at 10 am was baby girl’s PDA ligation surgery.

I was at the NICU with baby girl very early that morning.

A few minutes before 10 am we met with the surgeon and the anesthesiologist. They explained to us step by step what would happen. They were relaxed and confident. Two lovely ladies that reassured us and gave us a feeling of trust.

We were with baby girl while they were setting up the room for surgery, right up until the very last minute when we had to leave the so that the anesthesiologist could start.

But still, the thought of my baby girl going under general anesthesia – which I learned then is actually a medically induced coma – was extremely frightening.

Her surgery lasted 20 terrifying minutes. 

But as soon as we saw the surgeon come into the waiting room with a smile we knew our baby girl was alright.

Everything had gone as planned. This roller coaster ride was over. For now.

We went see our baby girl.

She was still groggy from the anesthesia. She was a bit puffy which made her look chubbier. She had a bandage covering the incision.

There would be a scar below her left shoulder.

I put my hands in the incubator and hovered them over her. I held her hand. I wanted to make sure she felt all our love during this healing time.

I remember thinking how much she had gone through in just a month of life – extremely premature birth, intubation and now surgery.

She had already spent a month and 2 days hospitalized in the NICU.

I hadn’t gone through half as much in my entire life…

What a tiny, mighty warrior my baby girl was. I was so proud of her.

Her will to live was powerful. I though about how much she must love life.

She fought hard to be here.

She was so resilient.

She was such an inspiration.

Tiny but mighty. No doubt.

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.