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. 

31 for 21: Day 2...At the Pediatrician

I remember a trip to the pediatrician after Hailey was born for a well visit.  After her exam and vaccinations, we discussed Andrew's progress at the time.  Although I will never remember how old either of my kids were at the time, I will never forget what their doctor said to me at that visit.



Andrew in the recovery room with me.

 As we talked about Andrew and his progress in Birth to Three, I remember saying something about being so happy with Andrew's progress and how hard we were both working to help him become successful in meeting his next milestone.  Dr. Sude, the kids' pediatrician told me that she remembers discussing me with the two other doctors in the practice shortly after Andrew was born.  Dr. Sude was the first of the doctors in the practice that came to visit us in the hospital the afternoon that Andrew was born.  I had already been notified of the hospital pediatrician's suspected diagnosis of Down syndrome.  She told me that she was so impressed with the way I was handling Andrew's diagnosis and my positive outlook of a potentially devastating time of my life.  I know that many families are devastated when they learn their newborn has Down syndrome.  At the time, I didn't consider myself more knowledgeable about Down syndrome than any other parent who receives the diagnosis post-natally.  She remembers how thrilled I was...Andrew is my first child, the boy that I always wanted and named after my beloved grandfather.  His diagnosis was secondary to me.  I knew that there would be time for research and time for reflection.  But, most importantly to me, she remembers that I told her that I was chosen to be Andrew's mother and there was a reason that he was chosen just for me.  And although I wasn't sure why I was chosen, I knew that someday during our journey together, I would come to realize why Andrew was sent to me.

As I remember my time in the hospital with Andrew, I remember how much love I felt for my little, fragile son on that morning that he was born.  I remember calling my mother with the wonderful news that her first grandson was born and the concerned, yet confident tone in her voice when she told me that everything would be all right and everyone will love Andrew, regardless of his diagnosis.  But most of all, I remember meeting Dr. Sude for the first time that afternoon and sensing her understanding of my philosophy of Andrew's birth.

31 for 21: Can I make it?

Well, I haven't blogged in forever, but I'm going to try to blog everyday in the month of October in honor of Down Syndrome Awareness Month!  I was blessed on December 12, 2006 with my first born, a son we named Andrew after my grandfather who passed away in September 2001, long before he could meet any of his great-grandchildren.  I was always Pop's girl, so it was fitting that his first great-grandson would bear his name.  Shortly after Andrew was born, we learned that the doctor's suspected that he had Down syndrome, which was later confirmed by a DNA test.

I begin my posts for this month with a little information about the morning of Andrew's birth:

It was Tuesday, December 12, 2006 at 8:05am. My first baby, Andrew was just born via C-section. I was waiting and waiting for his first cry, the cry that would let me know that he was indeed here and he was all right. Finally, it came--a tiny little cry that brought tears to my eyes. I looked over at Chris and we smiled together. Our son was finally here.
While we were waiting for the pediatrician who were working on Andrew to bring bring him over to us so we could get our first look at our son, we chatted with the anesthesiologist who was at my head. Finally a doctor came over to us, without Andrew. She looked at me and said, "It appears that your son has a genetic anomaly. We will need to do further testing." And with that she walked away. Chris and I looked at each other and then he looked at the anesthesiologist. He asked her what that meant. She said that she didn't know.

Finally, Andrew was brought over to us. Chris took him in his arms and showed him to me. He was beautiful and he looked just like his daddy. I looked into his eyes and then I realized what it was, the genetic anomaly that the doctor was talking about. Andrew has Down Syndrome. My first-born child has Down Syndrome. I looked at Chris and told him. I will never forget what he said to me. "Andrew was given to us for a reason. We were chosen to have him and we are being trusted to take care of him." And he was right! We were very lucky to have Andrew come into our life and we were going to help him become the best person that he can be. And we are going to learn from him, much more than he will learn from us.

Andrew's Birth Story

It was Tuesday, December 12, 2006 at 8:05am. My first baby, Andrew was just born via C-section. I was waiting and waiting for his first cry, the cry that would let me know that he was indeed here and he was all right. Finally, it came--a tiny little cry that brought tears to my eyes. I looked over at Chris and we smiled together. Our son was finally here.

While we were waiting for the pediatrician who were working on Andrew to bring bring him over to us so we could get our first look at our son, we chatted with the anesthesiologist who was at my head. Finally a doctor came over to us, without Andrew. She looked at me and said, "It appears that your son has a genetic anomaly. We will need to do further testing." And with that she walked away. Chris and I looked at each other and then he looked at the anesthesiologist. He asked her what that meant. She said that she didn't know.

Finally, Andrew was brought over to us. Chris took him in his arms and showed him to me. He was beautiful and he looked just like his daddy. I looked into his eyes and then I realized what it was, the genetic anomaly that the doctor was talking about. Andrew has Down Syndrome. My first-born child has Down Syndrome. I looked at Chris and told him. I will never forget what he said to me. "Andrew was given to us for a reason. We were chosen to have him and we are being trusted to take care of him." And he was right! We very very lucky to have Andrew come into our life and we were going to help him become the best person that he can be. And we are going to learn from him, much more than he will learn from us.