Home again.......15 days later......

Wednesday, April 25, 2007

Current mood: indescribable Well, it's been 15 long days since I saw my baby for the final time......19 days since the last time I saw him alive. I am home again finally......for the first time since I left to go to Toronto to wait for Bennett-Chadlen's arrival....way back on February 26. Being home again is not as comforting as I had hoped it would be. Infact, it is rather unsettling. This is the only place where I have ever "lived" with Bennett. This is the place where he came from. This is the place where he grew inside of me.....day after day......week after week........month after month..... Just he and I......alone in our own little world......wondering what each new day would bring. In the beginning, things were so much different. I remember the day I found out that he was coming into my life. What a shocking moment that was.......I had to look at the test stick several times each minute throughout the day just to believe I was really seeing what I was seeing. Brendan and I drove all day that day.....to find Bennett's dad and share the news with him. I had made a comment before he had left here that I am not a lucky person.......that if anything was going to go wrong.....it will likely happen to me. I said that if I find out I am pregnant in a couple of weeks.....I am going to lose my mind. He asked if I would tell him. I didn't know what I should do...... He said if we were going to be having a baby together then he would want to know and that he wouldn't be happy to find out that I had kept this from him. I told him not to worry about it.....this was a stupid conversation, because it wasn't going to happen.....case closed....or so I thought. Once I got over the initial shock of it all......I began to look forward to having a new little life.....in my life. I wondered if it was a boy or a girl.....would he/she have mommy's hair.....or daddy's eyes...... I wondered if daddy would ever get over the initial shock of it all......it was so unexpected and neither one of us were really prepared to provide for a baby at this time in our lives. I tried not to worry about it.....this baby was coming whether we were prepared or not. Early on I had a bit of a scare....I ended up at ER wondering if I might be having a miscarriage. It was a Saturday morning and there wasn't anyone in the radiology department until Monday. An appointment was made for then to have an ultrasound. That was a long time to wait.....not knowing if my baby was still alive or not. The u/s showed a strong heartbeat, and the little guy measured perfectly for dates. I went home very happy and prayed for better days. Fast forward to October. I decided to allow my midwife to draw some extra blood for the maternal serum testing.....to check for an increased risk of having a baby with spina bifida, or some kind of chromosome abnormality. I had never had this test done before....I had always opted not to bother.....it wouldn't make a difference anyway. I always told myself that it wouldn't matter if my baby was going to have a problem.....I would never terminate, and I would love and accept this baby no matter what......and do my best to care for it......providing for its needs. The blood test results showed an increased risk for Trisomy 18.....a 1 in 8 chance. I had never heard of it.....that was also the first time I had ever heard of Trisomy 13....which the amniocentesis proved that my little one had......and that I was expecting another little boy. The prognosis was not good......."trisomy 13 & 18 are lethal conditions for the fetus.....incompatible with life"......etc.......if there was to be a live birth....then the baby was going to have an increased risk of many different birth defects. How could this be happening to me? Why? Why my baby? Why any baby? Then the acceptance of another boy.....how do I tell his dad? Contact up to that point had been quite limited......our relationship (which really wasn't one) was quite strained.....I couldn't leave this kind of information in an email.....how cruel that would be......but how do I find the words? Where do I get the courage to make that dreaded phone call? Small talk.....then, "I have to tell you something.....remember I said I was having some blood tests done......well they found something. I went to Toronto and had an amniocentesis done (explained the procedure)....and I just found out a couple of days ago that we are expecting a baby boy......."......................."yes......you're going to have a son.........but there's something else I have to tell you.......and I don't know how......."..........and then the tears.......and those dreaded words had to be spoken.......the words that no parent wants to hear........the rest of this story has been chronicled through my past blogs.....or a condensed version can be found at http://www.livingwithtrisomy13.org/MemoriesOfBennett.htm March 29, 2007.....8:06 am.....Bennett-Chadlen Roy arrives. Scans prior to his birth indicated a "not-severe Congenital Diaphragmatic Hernia"....which translates to a hole in the diaphragm, which is the muscle separating the chest cavity (heart & lungs) from the abdominal cavity (stomach, liver, intestines, etc....). Treatment at birth for this condition requires that these babies are intubated and not allowed to cry or breathe on their own......for fear that they will swallow air leading to other complications. Surgery for repair of the hole is to be perfomed as soon as the baby is stable. Bennett-Chadlen was whisked away quickly.....taken to the resuscitation room to be put on the ventilator as per the treatment plan. I had ordered aggressive treatment despite his trisomy 13 condition. Some of these children do survive and do better than anyone expects.....just give them a chance at birth.....and see what happens next. I was not frightened of raising a mentally or physically disabled child......I just wanted the chance to do so. When I first saw him a couple of hours later......he was beautiful. I spoke his name and he turned his head and looked right at me.....he was so alert and attentive! I never expected such a wondrous sight.....I will never forget that beautiful face....and those big dark eyes......we memorized each others faces during that next hour or so.....I never expected to be able to spend so much time with him.....but he was doing so well that I got to spend that extra time before he was transferred to the children's hospital across the street. Bennett-Chadlen remained on the ventilator and maximum life support for his entire 8 days......trials of different meds.....and tweaking of the ventilator & oxygen settings were made throughout that time..... Many family members & friends came to visit during those days...... Bennett-Chadlen met his two Grandmas (my mom & Chadlen's mom), his Grandpa Roy & my stepmom Carolyn, his Auntie Laurie (my sis), his Auntie Christine (Chadlen's sis), his Uncle Jason (Chadlen's half-brother) and Jay's partner Therese. My friends Barb & Tim (the wonderful people that I lived with for a month prior to Bennett's arrival) came by.....a new friend Louise......a new friend named Heather, who was also the photographer that took some of the beautiful photos of Chadlen & I with Bennett on his 5th day as well as my prenatal shoot (www.lifespark.ca/clients/Roy1/ & www.lifespark.ca/clients/Roy2/ ).....hospital chaplains for his blessing (his 1st night) & for his baptism (on his last night).......hospital staff that had heard about this special baby boy who was loved so much came by to meet him.....and to support us... On Bennett-Chadlen's final day.....he got to meet 3 of his brothers......Tristan 8, Mason 6, & Tanner 4. It was so difficult taking those boys in to meet him, knowing that it was also going to be Bennett's last day. I have pics posted that chronicle this event. Chadlen & I had been at the hospital night and day....never far from Bennett-Chadlen's side.......the NICU is open to parents 24 hrs a day.....we spent time just the 3 of us......as well as spent individual time with him long into the early hours of the morning......those were the best moments. The room was quiet and dark.....Bennett rested so peacefully. We would just go in and look at him.....take turns holding his hand, feeling him squeeze our finger....he was so strong and aware of our presence around him.......I read him stories in the night......Daddy & I sang to him.......and told him how much he was loved. Good Friday, April 6th, 2007.......Bennett-Chadlen's health was fading.....he was not expected to make it through the day. His father & I had to make the agonizing decision to take him off the ventilator......and let him go. Bennett-Chadlen spent the morning surrounded by his entire family......many tears were shed........it was time to say goodbye. The room was cleared......2 rocking chairs were placed side by side, in preparation. We sat down. It was time to hold our son for the first time since he was born. Bennett-Chadlen was placed into my arms......the breathing tube removed......we got to see his face for the first time without all the tape and the tubes...... He was beautiful.....so handsome......I will never forget that moment in time...... I rocked him......and sang him a lullabye.......we told him how much we love him......someone brought Chadlen his guitar....and somehow he managed to play it through his tears.....and we sang to him......"Bennett we love you.......oh Bennett we love you"........ We took turns holding him.....and comforting each other......Bennett-Chadlen looked so peaceful and happy in our arms......he gave us 2 hours like that before he left us............. 19 days ago......... We miss you Bennett-Chadlen.......you shall forever remain in our hearts.....and in my soul......