31 for 21: Day 3...In the NICU

It seems as though I'm writing a lot about Andrew's birth and our first days with him.  I've never actually recorded the memories and my thoughts from that time.  Although I was thrilled to finally have my baby, I was equally uncertain about the future.  When you are expecting a child, you dream about your child's future.  After receiving Andrew's diagnosis, I was wondering how much of my dreams for him were going to change.  I worried about his future.  However, while Andrew was in the NICU at Yale-New Haven Hospital, I met a nurse who changed my perpective and changed my focus.



Andrew with me in the NICU.

 Andrew was sent down to the NICU a few hours after he was born.  He was jaundiced and the doctors on the maternity floor were concerned about his heart.  To be cautious, they recommended that he visit the NICU so the doctors could take a better look at his heart.  They thought he might have a murmur from the way it sounded through the stethoscope.  We later found out that Andrew has a VSD, and a few small holes which have almost closed on their own.

I visited him back and forth and provided breastmilk to feed him while I couldn't be there to nurse him.  I was exhausted from the recovery of my c-section ansd traveling across the hospital to see him every few hours.  On the first afternoon, a Tuesday, I met Andrew's nurse.  Her name was Jennifer Papa.  I quickly learned that we had something in common.  She lives in Madison, the town I grew up.  And. when my sister-in-law came to visit Andrew in the NICU, I learned that my niece was a friend of her daughter; they went to preschool together.  Jennifer told me about her family and that her son has cerebal palsy.  I didn't know what that was, but she explained it to me.  She was a wealth of information, explaining the Birth-to-Three program to summer camps when Andrew was older.  But more than that, I felt comforted that she understood what I was going through.  It's not that I was sad for Andrew or myself, but I just kept wondering how our "planned" future was going to change, what challenges were in store for us.  Even then, I knew that Andrew was going to have more difficulties learning and accomplishing his developmental milestones, but since he was my first child I didn't know what that really meant.  Just knowing that Andrew's nurse also had a child with special needs, made me feel more confident and secure as I looked around at the other newborns on the maternity floor whose parents were feeling sorry for me because my son was not with me, but in the NICU.

Everytime I visited Andrew that weekend, I saw Jennifer hovering my his bed, smiling down at him.  As I approached his crib, I was always waiting for news...I had hoped that Andrew would be discharged from the NICU before I was discharged, but setbacks in his health kept coming up.  Never any major health concerns, but fluctuations in his oxygen saturation levels and red blood cell count, caused some concern for the doctors.  Jennifer always greeted me with a thumbs up...he had a good nap or a good night, he was eating better, but still by a feeding tube through his nose.  This red blood cell count was the final hurdle to overcome before Andrew could be discharged.  I will never forget the phone call on Sunday morning, the day after I had been discharged, and left the hospital without my son.  It was from Jennifer, and she was speaking to me in a hushed tone...I was immediately worried...what had happened overnight.  But, it was good news!  Jennifer told me that although the final decision had not been made yet, the hospital's pediatrician was almost certain to approve Andrew's discharge that afternoon and we should be sure to bring Andrew's car seat with us to the hospital.  I quickly thanked her for the call, and rushed as fast as I could to get ready to go see my son.  Almost knocking Chris to the floor in my painful haste to get up the stairs to get the car seat from Andrew's bedroom, I started crying.  I wasn't sure why, but now I realize that I was suddenly overwhelmed.  While Andrew was in the hospital, there were experts helping me to take care of my baby.  I didn't even know what I would do once we were home.  Andrew still wasn't nursing properly and I wouldn't have the monitors to ensure that he was still breathing as he slept.  How would I know that he was doing okay once those monitors were no longer attached to his body?

Andrew right before discharge.

Upon arriving at the hospital, I headed straight for Andrew's crib, only to find it empty.  Slightly panicked, my eyes scanned the room for him and found him across the room.  He was sleeping as I sat down in the rocking chair next to him and I immediately noticed that he was dressed and free from the wires that were attached from his body to the monitor above his crib.  The feeding tube had also been removed from his nose.  Someone walked up behind me, and asked, "Are you ready to take him home?"  I turned and started to cry again, unleashing my fears onto this kind, dedicated nurse who had been by Andrew's side every night since he was born.  I will never forget her advice, as I still try to live by it today.  She said, "Live in the moment and enjoy every opportunity that you have with him.  Andrew is going to be everything that you dreamed about and more.  You will find that you will learn much more from him, than you could ever teach him.  Cherish every milestone that he achieves.  He will do everything in his own time, but he will accomplish it all."

As I now struggle to potty train Andrew at 3 1/2 years old, I laugh when I remember these words of advice from a woman who is not only a nurse, but a Mom of a child with special needs.  Andrew will do it; he will understand the concept of potty training, but yes, he will do it on his own time, not mine.