Monday, January 5, 2009

Before the Blog Part III

January 15th. I woke up after a night of being drugged and sleeping very well. I had spent some time with Jacob before heading off to bed and once I woke up, I walked behind the wheel chair down to the ICN to see him and visit him again. Jacob was super responsive to Jason's voice the night before so when I was there, he just slept and didn't move about....when Jason was there, he opened his eyes and looked for him and put on a show....typical....I carry him for 9 months and then Daddy gets all the attention! :) I had a great morning checking on my sweet boy who was doing well.....he was on IVs with just sugar water to keep him hydrated, he was breathing room air and hanging out in the warming bed. His O2 levels were low but that was to be expected with his known heart condition. We had a few visitors and my mom came up to see him. A resident geneticist came in as planned to do an analysis to clear Jacob for his surgery. I watched him do all his measurements very quietly and since this was the first contact I had with this doctor, I had difficulty reading his responses to his measurements....he repeated a few and then came the attending geneticist, the attending neonatologist and the residents. They asked my mother to leave because the only ones allowed present during rounds were the doctors and the parents. My mother went to wait in the waiting room. The doctors all gathered around, the attending geneticist, we'll call him Dr. R, who took one look at Jacob, turned to the other doctors with his back towards me and said, "Ok, we have a Trisomy 18 case here." The look on my face must have been something because EVERY doctor that could see my face realized that that was the very first time this diagnosis was mentioned for my son. I stood up, went to my son's side, had the residents dismissed and told everyone that I didn't want to talk about a thing until my husband was there. They all scattered and realized what had happened....a mother's heart was devastated and they witnessed the very moment of brokenness. You see, Jacob's cardiologist had "greatly encouraged" us to get an amnio at 6 months in the womb and his reasoning was because if he told us for 3 months he could fix our boy and then he couldn't due to a genetic disorder we would be devastated......I quickly intently stared into his eyes and rebuttaled "No matter when you tell me you cannot fix my son, if it be now with an amnio or after his birth, I will be devastated." And what those doctors witnessed was not a mother's devastation of realizing her son cannot be fixed after being told he would be, but rather the devastation of knowing that her son will die soon and was not made fixable. This was no different than it would have been 3 months prior. They gave me the phone and I called Jason. He had just arrived at my parent's house to see the boys and my dad ran to the store to get something. I told Jason to "just come to the hospital." He asked if he could wait until my dad got home and I told him to pack up the boys and my mom will watch them here but he had to get there now. He packed up the boys and got there quickly. My mom stayed with the boys in the waiting room and Jason came with me to Jacob's bed side, he asked what was going on. I told him that they are saying it is Trisomy 18. I then witnessed the brokenness of a father realizing he was going to lose his son....Jason's head tuned to the side, he went to Jacob's side and said "Oh buddy." I am not sure what happened right after this.....it is a blur. At one point Dr. R and his resident and a nurse came into a family room with us and we talked about what the observations were that led to this diagnosis and what to expect of it. We cried....all 5 of us and we all prayed....Dr.R is a christian. I told Dr.R that we are going to proceed as if he was wrong until the actual test came back and then we would decide what to do. We didn't know what to tell Jacob's big brothers.....oh how they prayed for their little brother to be well and how they were so excited to have him.....and now, to tell them that we didn't know how long he would be with us......and to sit with Jason and see his brokenness....it hurt so bad.....it still does. The ICN pulled some strings for us and Jacob was put in a portable crib with portable monitors. I called my father to let him know what was going on and that if he wanted to meet Jacob, he should come up to the hospital. They brought Jacob into the private family room to meet and be held and loved on by Joshua, Jonathan, my mom and dad and me and Jason. We spent quite a bit of time together.....it was so strange looking at Jacob and realizing we didn't get to keep him....it just was so frustrating as a parent....he was so perfect and so sweet but we wasn't made fixable. We told the boys that we didn't know how much time we would have with Jacob and to kiss him and love him as much as they could now because he was made so special that God was going to take him back and he probably wouldn't grow up with them and all these things and I cannot believe we had to tell them....it hurts so much now just thinking about what we had to do. uh....













6 comments:

Staci said...

Karen,
Thank you again for sharing your story from "Before the Blog". I can't even begin to imagine how hard it must be to put this all into words. I cried for you when I read how you heard the news and then for your husband. I guess Jacob really liked all the loving he got in the family room so decided to stick around for a while to get more :) I am so glad you got that time with him and made so many wonderful memories.

Jessica mommy to Alex/ RTS said...

Thankful for your raw words. thank you for sharing this.

connie said...

I'm so glad for the chance to read this part of the story, but oh, Karen.

dollymama said...

Your entry not only brings on the tears, the heartache I can feel for you...but it reminds me of this song that is sung at every Baptism at our church...
"You are loved, you are beautiful, you're a gift of God, His own creation...you're a gift to everyone, His gift of love to all, You are loved, God danced the day you were born."
Jacob was and is still a gift to everyone who met him, he was beautiful, certainly an amazing gift of God, and surely God danced when he was born and the day they met in heaven!

Laurie in Ca. said...

Thank you so much for letting us into Jacob's beginning Karen. It hurt my heart to read, I can only imagine how hard it is to write it here. I hope it brings healing to your heart too. I love you.

Love and Hugs, Laurie

Julie said...

My heart is melting at the sweet pictures of your boys holding Jacob. Although Caroline doesn't fully understand what Magdalena has, she understands how special she is, and this makes her a ver protective "big sister". Thank you for always writing so that I know that I am not alone.