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 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.
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.