Down the rabbit hole we go…

It was now early August. Our Malena Lola was just over 3 months and weighed 4.2 lbs.

She was doing really well, growing and getting stronger each day.

She played with a rattle for the first time! She was such a trooper! Even though she couldn’t move around freely, she still smiled and enjoyed it. I remember her nurse Trish helped hold her ET tube to give her a bit more mobility as she shook her first rattle.

Another one of those brief moments of pure joy that we cherished so much knowing that our sweet baby girl would have to undergo surgery again.

Later on Brad and I met with the head baby girl’s ENT and her Pulmonary doctor to discuss her upcoming tracheotomy surgery.

I remember sitting in the room and listening to the doctors speak. I remember them explaining what a tracheotomy was. I remember they used a plastic model of an airway to show us the details of the procedure. Everything they said made sense. Everything they said was clear.

I understood every word but I felt numb.

The thought of my baby girl having an open hole in her throat for an undetermined length of time was so terrifying that it made me feel numb.

I couldn’t let myself feel what I felt at that time. If I had, I wouldn’t have been able to go through with any of it.

After the meeting I needed a moment. I needed to go sit outside and cry.

I knew this was happening. I knew this was what she needed. I knew that baby girl’s surgery would be on August 11, 2011.

But I still couldn’t accept it. I still felt angry and heartbroken that my precious baby girl would have to go through this.

The uncertainty and fear were more present than ever.

How long would she need to have the tracheotomy
Would she be able to talk once the tracheotomy was taken out?
Would she be alright during the surgery?

There were no answers to my questions at this time. Only uncertainty.

The surgery was just a few days away. I tried to stay positive but I remember I cried a lot during those days.

It felt like I was mourning my baby girl’s loss of her ability to make sounds and in a way, the loss of her perfect little neck.

I remember holding her and staring at the area where the stoma or hole in her throat would be. I remember caressing the skin.

I remember thinking that once the tracheotomy was done, she would have a scar there for the rest of her life.

My baby girl was just three months old and she already had two scars – one on her back from the PDA ligation surgery and one in her right foot from the IV burn.

She would eventually have a third scar on her neck from the tracheotomy.

A part of me tried to focus on the positive and think about my baby girl’s face free of the ET tube. Free to breastfeed and to smile without a tube taped to her mouth.

I struggled to stay positive at times.

There were days where I felt everything would be alright. And there were other days where I just wanted to cry and scream.

I didn’t want my baby girl to have a tracheotomy. But there was nothing I could do about it.

Once again, I had to accept and let go.

It was Sunday. Her surgery was scheduled for Thursday. I decided to make the days before the surgery very positive. I wanted baby girl to feel loved and safe going into the operating room.

I was finally able to find a couple of onesies small enough for her. I dressed her for the very first time.

Those were the moments that gave us a sense of normalcy and joy amidst it all.

We had so much fun dressing her that we tried on both outfits. The pink and then the green.

I spent the next three days holding baby girl as much as possible. I knew that after the surgery she would be fully sedated for 5 days, as is it a very high risk time because the stoma is fresh and healing. They needed baby girl immobilized during those 5 days.

I knew I wouldn’t be able to hold her for at least 5 days. After that, the ENT would do a trach change and if the stoma was healing well, then she would be off sedation.

I remember thinking that I had never heard my baby girl cry yet. And now, I would have to wait even longer to hear her at all.

The tracheotomy would not allow her to make sounds.

I looked at my little girl and cried. It was the first time I cried in front of her.

I didn’t want to cry, but I couldn’t contain it. Those were very emotional days. There was something deeply heartbreaking about accepting the reality of my baby girl needing a tracheotomy.

I started to feel guilty again. I struggled to keep the negative thoughts away…

I knew I had to stay strong but a part of me felt like a failure. Like I had failed my baby girl as a mom.

I asked God why this was happening to my baby girl. There was no answer at that time. Only uncertainty.

I realized that the only way to calm my uncertainty was to have faith that my tiny, mighty little warrior angel would be alright.

I had to forgive myself and know deep in my heart that I had not done anything to cause my baby girl any harm.

This was easier said than done…but for now I forced myself to let go of the guilt. Forgiveness would come later…

It was Thursday. It was the day of my baby girl’s tracheotomy surgery.

I went to the hospital very early that morning. I spent all morning holding her. Looking at her. Telling her how perfect and precious she was. Telling her how grateful I was to have her in my life.

I held my baby girl close to my heart and once again, she gave me the strength and the hope I needed.

I told her she was strong and brave, and that everything was going to be alright.

I told her she would soon be free of the tube and she would be able to smile.

I told her I loved her.

I looked at my baby girl one last time before putting her in the transport incubator.

I knew this would be the last time I saw her little neck as she had been born.

It was time to take baby girl to the operating room.

It was time to be strong and believe.

It was time to have faith.

It was time to go down the rabbit hole.