MOUNT SINAI Spring/Summer 2013 Newsletter
“I became his advocate. I knew his preferences. I spoke up for him.”
- Fabiana Bacchini
October 10, 2012 – I dreamed about this day for a long time. I planned how it would look like and I even felt the exhilarating feeling of the moment I would take my baby home every time I left the hospital through the Murray Street exit doors.
That morning I drove to the hospital with tears in my eyes. Tears of happiness and tears of gratitude. It was the very last time I drove to Mount Sinai with an empty car seat. On day 146, my baby fighter was coming home.
Gabriel was born at 26 weeks +1 weighting in at 900 grams and 36 cm in length. It had been a long journey leading to this day. First the IVF, then the successful pregnancy result, followed by the exciting news I was expecting twins, just to find out a few weeks later that my twin A wouldn’t make it to birth due to a heart malformation. It was 6 weeks of uncertainty with several doctors’ appoint- ments. My doctors kept my spirits up and reassured us that whatever happened, we would focus on saving twin B.
To their surprise I went into premature labor and on May 17th, Michael was born sleeping and Gabriel was rushed to the NICU. I couldn’t even see his little face.
I was wheeled into the NICU 24 hours later. As the doors opened I entered a new world with new language, an overwhelming room full of bells and a different smell. When I saw Gabriel for the first time I felt like I was going to pass out. Such a tiny purple baby covered in wires, IV’S, a blue light, breathing support, a strap around his chin. I closed my eyes wishing that it was a bad dream and when I woke up everything would go back to ‘normal’. It took me a few days to realize that this would be our new life.
I was scared of the unknown but I knew that Gabriel was going to come home. My husband held me together and kept reminding me that we could do it. During the first few weeks, I did not want to know anything about his condition. In my mind he was healthy, he was just born 14 weeks prematurely. My husband called the unit to get updates everyday before I went in.
“I became his advocate. I knew his preferences. I spoke up for him.”
- Fabiana Bacchini
As the days passed by, I started to talk to our primary nurses about his progress. Slowly I started to ask questions, and slowly I started to learn about the bells and all the equipment. I started to attend the classes and getting involved in his care. The nurses taught me how to be his mommy when I could hardly touch him. I started to live in the NOW. I learned to stay present and celebrate every hour of the day, every breath, every gram he gained. My little fighter was growing. He was fighting for his life. He gave me the strength to carry on every- day. Every day was a new day with new hopes no matter how bad the day before was.
I developed a strategy to cope with the NICU. I focused only on what was going right. I focused on the success rates. Gabriel was ventilated for 7 weeks and developed severe chronic lung disease that kept him on breathing support the whole time. Weeks were passing and we were still there. Spring turned into summer, sum- mer into fall. I learned all the new terms, the new language, I participated in the rounds, I learned all about his medical condition. I became his advocate. I knew his preferences. I spoke up for him.
We had several set backs. It felt like a long road with no end. But Gabriel had a huge desire to succeed and I knew that when he looked into my eyes. He reassured me that he was fighting and everything would be just fine.
He got transferred to level 2 in September. It was a day of celebration. It was one step closer to home. The cele- bration however came with the news that he was going home on oxygen.
I was overwhelmed again. I didn’t want to take the hospital home. I wanted to have a ‘normal’ life again but my doctor said to me that would be my ‘new normal’. OMG, was she right!
I questioned my ability to care for my preemie baby, but everyone in the NICU – doctors, nurses, RTs, so- cial workers, the front desk ladies, all guaranteed that I was ready to take him home. My husband, always so pos- itive, kept saying, “It’s just an oxygen tank”.
So, on that beautiful morning in October, among hugs and tears as we said good bye to our NICU family, Gabriel’s grandparents, my husband and I left the 7th floor all dressed with a special thank you t-shirt while big brother Thomas proudly pushed his baby’s brother stroller.
My dream had finally come true as I opened the exit doors onto Murray Street with my miracle baby. Life as I knew it has definitely changed. But I’m grateful for all that happened. Now I appreciate the small things in life, I enjoy my family today; I celebrate who my kids are today. As Gabriel gets stronger, he is coming off the ox- ygen and as a family we celebrate everyday because that is all there is.
Pictured; Gabriel - Now 8 months corrected.
Comments