My Story:  I have a beautiful little girl, who is now 7 years old.
She has a very rare genetic syndrome –NCBRS.
She has mental disabilities and several physical disabilities.
She is nonverbal, tube fed, she was tracheostomy dependent for 5 years of her life.
She does not walk or have fine motor skills. She, however, is the most beautiful person I know.

When I was pregnant with her, we had no idea something was wrong.
She always measured small and I was told it is because I am small…
She was born via C section at 39 weeks. We were expecting a 6 lb baby and out came a 4 lb 3 oz baby.
She did not cry. She needed immediate resuscitation. I never saw her immediately after she was born.
We were told the amniotic fluid was meconium stained.
She was rushed to the NICU.
I remember that day as if it was yesterday ….. my husband and I in the post op area, anxious, tearful and wondering what was going on with our baby girl and when we will get to see her.

I couldn’t believe it – this would have been the time when I would be holding my baby with tears of joy. My husband and I would be talking about who she looks like or how her big brother would react when he saw her! We would be sending pictures and announcing the arrival of our bundle of joy.
I remember thinking:
What did I do wrong? It is my fault that my baby is suffering.  
Why did this happen to my family?
God, why did you do this to us. We did everything right. Please, please make my baby OK. I will do anything. I will never ask for anything else. I just want my baby to be OK.
Everyone was calling us asking if the baby has arrived! When can they visit…..

​I asked for a breast pump right away so I could pump and make sure my baby would be able to get breast milk. Several hours go by and no one comes with a breast pump. I started to worry and cry that my milk supply will not pick up. This is the least I can do for my baby. I am a horrible mother.
I am shifted to a room upstairs. I see people walking by with flowers and balloons and proud family members with big smiles and older siblings running into rooms to meet their new baby brother or sister.
But our room was quiet. No baby there. No flowers or balloons. We don’t know just yet what to tell our friends and family. We were in shock.
The nurse practitioner from the NICU comes to room and says that they tried to intubate my baby and failed. 3 attempts! And that it had been traumatic intubation as they noticed some bleeding.
But that ultimately they had left her only on oxygen and that she was holding up ok so far.

I remember the sick feeling in my gut, I almost threw up. I had a pit in my stomach, I was crying.
​All this was just surreal.
When can I see my baby? Please take me to the NICU.
After a while I am wheeled down to the NICU – my husband and I couldn’t believe our eyes.
There she was…tiny little thing in the incubator with oxygen tube as big as her face on her.
Multiple wires for the cardiac monitors, pulse oximeter, NG tube on her.
This is not what we signed up for? What is happening?  We were not prepared for this.
I wanted to touch her so bad ...I wanted to hold her but it was so scary to even imagine holding her with all those contraptions on her.
We cried….all night.

The next couple of days we were told she is getting better. Still needed NG feeds. I tried my best to pump. I spent most of my day in the NICU. Sitting. Sometimes without a painkiller because “it was not time for my ibuprofen yet”. But too afraid to take Percocet for the fear of being drowsy when I am with the baby.
I washed the pump parts with hot water that would burn my hands to make sure they are adequately disinfected.

​I was discharged on the third day. But before discharge I was asked to attend a newborn care class with a few other new moms. They all had their babies with them while a nurse showed then how to bathe their babies. I just had to watch them. Smiling with their partners, making jokes. My baby was in the NICU. I still wonder was that class necessary? Why would you put a mom through that torture?

I saw photographers getting the newborn pictures.
Friends posting pictures of their babies on social media with each month marked on a blanket and remember thinking…will my baby even live that long? Will she achieve her milestones?
What will my son think of his little sister? Will he love her just the same? Will he be afraid when he sees her in a “box” in the NICU?

A couple of days later my son came to visit his little sister…. He was 4. He was so happy to see her! He thought it was so cool she was in a box. He had no fear of the tubes or wires hanging off of her and going into her nose. He was delighted. Pure love.

I started driving 5 days after my c sec.
I remember taking a break for a couple hours after the first week in the NICU and going to Target.
Oh all these cute little baby girl clothes….and the little shoes and bows. The nursing covers…so you can take your baby anywhere and nurse. And my baby is still in the NICU with those contraptions on her and still getting NG ​Feeds.
All the moms walking around with their babies in the baby carriers and I am walking alone like a zombie through those isles trying to find one outfit that I think I can out on my baby and wondering if she will ever play with those colorful rattles or eat the organic fruit purees and the baby snacks.

Finally, we gave her the bottle after she was off oxygen.
​But she couldn’t swallow well. It looked like she was choking or in pain. She grimaced.
The nice nurse thought that she might be in pain due to the traumatic intubation.
She was barely putting on weight after losing some initially.
We counted every little drop of milk she was able to drink. Even half an ounce was an achievement.
The last night in the NICU she was taken off the monitors and we were allowed to take her into a room and stay there overnight. Nesting they called this.
I was so nervous to not have those monitors. I was so used looking at the oxygen saturations and making sure she is OK.
The next morning, we took her home after the car seat test – this tiny little thing barely 5 lbs almost disappeared into the car seat.
Still spitting and coughing when she was fed….we were hoping this was all a bad dream and that in a few days she will catch up and we will have our healthy little baby girl.
Life had other plans…..

When R shared her story with me, her daughter was already 7 years old.  She hadn’t talked about her experience much before our conversation.  Sometimes parents are so busy trying to survive and manage all the demands of caring for a child with challenging health issues, that they don’t always take the time to process their birth trauma. Sometimes it is years later when that healing truly begins. I am so grateful for R’s courage in sharing her perspective with everyone and, in doing so, giving herself the opportunity for additional healing and posttraumatic growth.

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