Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Thursday, April 7, 2011

04-04-11 cont

My mind was just racing and screaming a deafening scream. Do we leave the hernia and it will start to strangle the bowl and poison your body, leaving you in so much pain and probably eventually the inevitable, or do we take a chance (another chance) and put you under again, knowing it could kill you . We really didnt have a choice. I think the doctor noticed I was about to crack cause he joked that he would prescribe mommy some valium ? at this stage I don?t think that would even help to settle my nerves, maybe about 40 bottles of vodka would do the trick ( and mommy doesn?t drink), other than that I don?t think anything would settle my nerves. So we went for a sonar and thank goodness the hernia had not strangled the bowl, so we still had some time. We scheduled the operation for Monday, and the doctor decided to give us a weekend pass, I mean after all you and mommy have been in the hospital for pretty much most of the March. So Friday came and we were a little excited that we could be going home ? AGAIN NO SUCH LUCK ? the surgeon came in for his rounds and decided that we would have to operate that afternoon, so yet again ? the long walk to my private little death trap ? and the long long long wait. You came out of theatre and this time you were crying, you didn?t even settle when they put you in my arms. When the nurses came to fetch you, I put you in the cot ? mommy didn?t want to walk with you, I mean heaven forbid I had to trip or something. We got you into the lift and just as the door was closing you started choking, even the nurse panicked a little ? straight back to theatre for a little suction. Ok so now your mouth is clear but you just won?t settle and the longer it takes the more you battle. It took a little over two hours but you eventually settled, mommy sang to you and somehow when you could hear me above all the crying you calmed down a little ? I just sat there saying to myself (~~~~~~I cant, I just cant anymore, but I have to, I have to be strong for you, but if I can?t be strong for me how am I going to be strong for you ? pull yourself toward yourself you silly woman ~~~~~) ? the anaesthetic had really affected you this time round, it has closed your chest and now you are on even more meds than ever. So now, no more hernia and the surgeon also decided to bring your testes down as well, considering they had not come down yet. Although the third anaesthetic was the hardest on you, you have recovered quicker. So finally we got to go home yesterday, it felt like heaven, and as though we haven?t been through enough, you decided to scare the living daylights out of me last night and stopped breathing, my heart did somersaults and spasms and heavens knows what else, I called for daddy, not sure how it did not come out as a scream, but subconsciously I think I knew I had to stay calm for the girls sake, so they would not start panicking. This has been the worst one yet, I have never seen your face so spasmodic and blue/black and then for you just so suddenly to go complete limp in my arm, no life in you whatsoever ? I really thought this was it. You came round relatively quickly after that you were as white as your babygro, you gurgled something to me as if to say I am ok mom and decided it was time to sleep ? leaving mommy shaking from head to toe and inside out and trying so hard not to cry in front of the girls (who in all this time, to my surprise stayed so calm) ? I just couldn?t anymore, the tears just flowed.
Daddy and I were expecting a sleepless night last night, but to our surprise you slept well, even though you had me awake from 12 to 4 this morning, we still felt like we had some sleep and this morning you looked just like yourself, our beautiful sleeping little angel. Thank you for being so strong my angel boy, thank you for giving us the strength to carry on ? we love you so so so much my precious precious angel.

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