My pregnancy with you, our little Tayvie-Doo, seemed completely normal...up until about 28 weeks. At 9 weeks, due to a horrible fall down our beautiful wooden staircase, it was confirmed that everything was "normal" and you were healthy, despite the bruises I suffered---thank goodness! At 16 weeks, it was confirmed that we would have another energetic boy and we were so excited for that we would another beautiful boy! Your brother, Tre'von, wanted a sister, but was OK with a brother also, as long as you would "play cars with him!" =0)
At 28 weeks when measured at my appointment, the doctor was shocked to find my belly only measuring 24 cm! There were no major concerns yet, at least for the doctor, as your daddy and I are both small people...I had only gained about 15 lbs. at this point also, which also wasn't a major red flag, since I only gained about 28 with your brother altogether and carried him to term. It was decided then that I would have a repeat ultrasound and meet up with the doctor again in a few weeks...at this point I was a little nervous, as I had noticed that you didn't "move" with the vigor that your brother had...I also was even more nervous that I didn't seem to be fitting into my materity clothing the way I had with him...I was gaining weight, but it seemed like it was in all the wrong places...
After the ultrasound, I met with the doctor and still wasn't measuring the way I should. He mentioned to me that the ultrasound showed you as being in less that the 5th percentile for head and femur length. "Maybe we messed up your due date," was all he had for me at this point...so we would repeat the ultrasounds every two weeks...this is when I began to be very nervous...why wasn't my baby growing? What if falling down the stairs really had hurt you? I began eating every few hours (healthy choices, of course) and decided that I would no longer exercise as I had been, to see if maybe you would grow better...had it only been so easy! At 35 weeks, FINALLY, it was decided that I would go for a Level 2 ultrasound in Albany, to see if there was something more going on that a level one ultrasound wasn't detecting...at this point I had had 5 regular ultrasounds and NOTHING had been detected...
On Monday of my 35th week, your Mima and Aunt Keisha joined me for a trip to Albany for a Level 2 ultrasound...I was very nervous, just wishing it were all a bad dream and hoping that you were healthy and everything would turn out just fine. One moment that sticks out in my mind now that I look back was when the ultrasonographer (?) asked me if I had opted to have any screening done for Down's syndrome? I immediately panicked and asked, "Why does he have Down's?" Of course, she could not say much about what she saw and told me that the doctor would be in to see me. When he came in, he gave me the same line, "You're small, baby's small..." Your heart was healthy and your brain seemed healthy, you were just very small---at that time, 35 weeks into my pregnancy, you only weighed 2 lbs. 15 oz. And if the doctor suspected anything else wrong, not a word was mentioned to me...it was also detected that the placenta was "thickened" and the umbilical cord was "marginally inserted," and in addition, the cord only had two instead of three vessels...I cried many hours for you after this appointment...I cried not knowing what was wrong with you, would I carry you to term, would you be healthy and able to live being so tiny when you were finally born...I loved you so much and just wanted you to be OK. I was ordered to have daily non-stress tests done if that's what I felt I needed for you to make sure you were OK...in addition to this, I was also ordered to see my regular doctor at least once a week until you were born...
That was on Monday and my doctor decided it was not important enough to call me back until Thursday...I was angry that he blew me off the way he did and even more angry at his response to me when I finally reached him after swearing at his secretaries (I apologized and felt badly, but was so worried about you)...when I questioned him as to why he took so long to get back to me after I was told to take all these precautionary measures to protect and monitor you, his response to me was, "well, if they thought you were that high risk, then why didn't they keep you in Albany?" He agreed to see me the next day, Friday, the day you were born, and also set up a non-stress test...
The day you were born seemed to go so slowly, yet things happened so quickly...God Bless the biggest angel in my life, your Aunt Keisha, for I do not know how I would have gotten through this day without her. We spent 6 hours together in the room for the non-stress test...and I never did figure out why it's called non-stress, because all I did was STRESS! You were not moving hardly at all this day and had slowed down your movement significantly since that Monday...your heart rate was very low and although you were not in any major distress, you only moved once in that 6-hour span...I was sent for a biophysical profile, which you failed, mainly due to lack of gross motor movements. At this point my doctor, who had left me there for over 6 hours without coming to see how I was doing or to tell me what was going on, came to tell me that an ambulance would be taking us to Albany Med where you would be delivered via C-section. I was devastated, scared, confused...I remember rubbing my belly hoping you would just start moving all around, like it was some kind of bad joke you were playing on us all for that day...Tre'von, your brother, was home with your dad, getting ready for his 3 year old birthday party for the next day.
When I called your dad I tried not to be scared, but could do nothing but cry...I cried for many reasons; I never got to say good-bye to your brother that day and he was such a mommy's boy, I wanted to hugh him and tell him sorry for not being able to have his party the next day with all of us there, I wanted to wait to have you naturally so I could show everyone that you were fine, and somehow I instinctively knew deep down inside of me, that once you were born we would finally have answers, but life would never be the same...the ambulance ride remains a blur to me. And I know that the people riding with me were very nice, but do not have any recollection as to what they talked to me about. My mind wandered to so many places during that ride and I was so scared of what was to come. I longed to go home, start the pregnancy all over again, and have you grow and develop as you should have, and erase all that had happened up to this point...
If one thing in this life is true, I love your Aunt Keisha so much. She got me through child birth with your brother, and once again remained my angel on the day you were born. I believe that we were born for each other, as our mother has written in our baby books, and God knew how much we would need each other during times like the day you were born. She made sure lots of prayers were said for us that day and as I lay on the table for the c-section to begin, I knew that no matter what happened, we had lots of angels in our lives to love us and see us through no matter what may come.
I do not remember much about when you were born, but I do remember that when you finally came out, there was such a long silence from everyone in the room...all of the doctors and anesthesiologists who had encouraged me that "everything will be fine," were now silent and not answering my questions as I screamed them. I will never forget the stoic look on your father's face as he tried to keep himself together and comfort me at the same time. I screamed for someone to tell me what was wrong with you and then I heard you cry...all your father said to me was, "there is something wrong with his hands," and then it was decided that I would do better to go to sleep so they could finish operating on me and so I could see you when I woke up.
I was awoke to the vision of the chief of pediatrics at Albany Med holding photos in front of my face saying, "your baby has Cornelia de Lange Sydrome and this is what he looks like." I was so drugged up at this point that I could not talk...I had words in my head but couldn't move my mouth. I looked around the room from your daddy, to Aunt Keisha, and to grandma and grandpa longing for someone to make sense of it all for me...how could it be? How did we not know? Did I do this to you and how would I ever forgive myself if it were in fact MY FAULT? I was told that they did not know how long you would live and that several specialists were seeing you to assess how badly the situation was...all I knew was that you were my baby, my little Tayvion Marcus, and I wanted to hold you, nurse you, and love you so much while I could. I had to get to you, but couldn't move...my legs were still numb and I felt awful...my belly was sore and I felt like I would vomit at any moment. So, I fell back to sleep again, hoping to wake up and have it all be just a bad dream.
I will never forget the first time ever I saw your face...it was so very different from the first time I met your brother...I was overwhelmed with sadness for you; you seemed so tiny to me, all 3 lbs. 11 oz. of you, and so helpless...yet there was this overwhelming sense of a presence much higher than most of us ever get to experience while alive...you were like a tiny little angel and if I looked hard enough at you, I swore God gave you wings, which is why your hands and arms do not look like most everyone elses. And speaking of that, to this day your arms and hand deformities are the first thing people notice, of course, and I am sure that they are overwhelmed with the same sense of "pity" I felt for you when I first met you. It is difficult for me now to think back on my emotions those first few moments; it is difficult not to feel so guilty for the pity and sorrow I felt, but yet it was so raw and real to me in those first few moments...
You had so much hair, as did your brother, and the strangest little uni-brow and there seemed no distinction from your uni-brow to your hair line...there was just hair everywhere, all over you! And you had the tiniest little down-turned mouth and upturned nose. I saw subtle resemblences of your brother in you, you were as bronzed and brown like caramel, just like him when he was born, yet I also saw flash-backs of the photos of your "syndrome" that the doctor had shown me the night before. I was so sad not knowing how long we would have to get to know you, so sad not knowing what exactly CdLS was and how it would affect your life, and so overwhelmingly sad that I created this life for you...how could this have happened? Despite all of the questions we did not have answers to, I knew that I had answered some questions in my own heart and mind: I would love you forever, figure out how to care for you, and give you the BEST life I could for as long as we were blessed to have you with us. I was not allowed to hold you just yet since you were still fragile and being monitored so closely...I had never heard of a mother not being allowed to hold her baby and was a bit upset at that, but I touched your beautiful hair, rubbed your face and leaned in to kiss your beautiful skin...you smelled just as your brother did the day after he was born, that is something I will never forget! Shortly after our few moments alone in the NICU with you, where you would live for the next few months, we were taken away by a doctor to inform us of all tests done on you thus far.
All of the medical terminology was so confusing---we learned that you had a cleft plate (hard and soft, not to be confused with cleft lip, which you did not have), a VSD in your heart that should repair itself with time, congenital hypothyroidism, which meant you would be followed by an Endocrinologist, you failed the infant hearing screen, which meant you would need an official hearing test later on, you were anemic, which meant you would need iron, and for now, you would be fed by a NJ tube through your nose until you could tolerate nursing or drinking from a bottle...all of the other medical terms will come at a later date! Who knew I would know more than the doctors about you in the later months to come?!? The important piece was that your heart and brain seemed "OK" and you were breathing on your own without oxygen support (at that point)...
The next 24 hours were crucial, so the doctors told us...during that time, you would be seen by a Cardiologist, a Plastic Surgeon (for your hand deformities, as well as your cleft palate), a Geneticist, to confirm your diagnosis, a Pulmonologist, a Gastroenterologist, a Nutritionist, and a plethora of other "ologists" to make sure you were healthy and able to survive...you were a fighter from the beginning...however, eating was such a difficult process for you...I tried so hard to nurse you, but you were so tired, and never woke up to eat...therefore, a feeding tube was placed through your nose to sustain you. Well, you made it through the first 24 hours, and several hours to come...the doctors were amazed at your ability and desire to live, and we only wanted to have you in our lives to love...
I was released from the hospital after five days and one of the worst days of my life was leaving the hospital without you! I longed for the "normal" home-coming with my baby, longed for our "normal" life to pick back up where it was left off on that day you were born...your brother visited you often at the hospital and although just three years old, I will never forget what he said the moment he met you: "Mommy, can I give him three of my fingers so he will have some and I will have some?" Tre'von is and has always been your biggest hero, your best buddy in the world...and I do believe to this day that he would give you his fingers, if he could. He never asked many questions, as three year olds do, but just instinctively knew that something was "different" about our lives now that you were born...he wanted to bring you home each time he saw you, wanted you to open your eyes to play with him, wanted me to be the mommy he knew before you were born...after I came home from the hospital, your father and I did rotating shifts to be with you night and day---I dropped your brother off at daycare in the morning to rush to Albany to be with you, 35 miles away, and at 4:00, I left and your father showed up after to be with you until late in the evening...each night around midnight or so, when you were in the NICU with only the nurses, I could call to see how you were doing...I HATED not being there with you, but knew that your brother needed me at home as well...you had good nurses to care for you around the clock, but it still felt so odd to not have you home. I cried many nights wishing you well enough to be here with us, in your bed next to mine...I was so emotionally drained and still searching for answers as to how this could happen to you, how we didn't know, how we would care for you once you were home, how would we keep our home for you to live in if I couldn't work, how long would you live, would you ever walk and talk, would we be able to care for you by ourselves after so much nursing and doctor support? I prayed to God each night to give me answers, help me through this difficult time, and teach me how to care for you to get you home...and that's when it happened...
I woke up one morning before getting Tre' to daycare and decided that I was your MOTHER and I was going to feed you, I was going to care for you all day long and not ask for help from the nurses...I wanted to know you better than they did, I wanted to research everything and find the BEST situation for you to live in, I wanted to give you the BEST life possible...life in the NICU can be very enabling, but can also give you a sense of hopelessness that they (doctors/nurse) know better/more than you...so, from that moment on, I decided I was going to know MORE!
You still were not feeding well after two weeks and refluxing incessantly...upon reflux, you were aspirating and requiring such a significant amount of oxygen while eating...after contacting the Foundation for your syndrome, I decided it was time for an upper GI series of tests to be done...sure enough, you had SEVERE reflux and could not tolerate feeds without aspirating...two days later, at only two weeks old, you were scheduled for surgery...our nightmare had just BEGAN! The doctor decided that you would need a Nissen Fundoplication due to the severity of your reflux, and in addition to this, he would place a feeding tube, since your suck/swallow/breathe reflux was very poor.
