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

01-10-2010

Wow the last two days/nights have definately not been the greatest. The night before last we were cuddling on the couch and about ten minutes before your feed, you decided you didnt want your feeding tube in any more and promptly pulled it out - okay not on purpose, you were playing and managed to get your little finger hooked on the tube and pulled it out. Some how you have managed to learn to tighten your stomach muscles when we put the tube in, so now we have to wait until you take a breath and slowly inch the tube into your tummy, and boy can you hold your breath. Last night mommy only got you into bed close to 12pm and by 2am you were a little niggly. I cuddled you and got you to settle. I put yo back in your cot and by 3am you were niggly again, so I turned you over to your other side and in the process I somehow managed to pull the tube out !!! I feel so guilty. It took a while to settle you and once you were settled you decided it was time to play, in the mean time, daddy was sterilising your tube so we could put it back in. So, now we have you settled and have to unsettle you again, my heart broke, you cried terribly - surpised your sisters didnt wake up. We eventually got you settled by 4am and put you in bed with me to sleep, by 4:30 am you decided you did not want to be in the arms any more and I put you back in your cot. By this time I feel like my eyes are going to pop out my head I am so tired. Daddy decided he would feed you so I could try and get some sleep before having to go to work, but I did not sleep to well, I just felt terrible that I pulled your tube out and had to put you through all the trauma again. Sorry my little bunny, love you lots !!

When I got home yesterday I could see daddy was not entirely himself and he told me he had a very emotional day yesterday. Now dad being dad and I suppose being a man, it is very hard for him to show emotions, besides the fact that he tries not to because he feels he needs to be strong for mommy and your sisters. I am glad he did. It has been a long hard road so far - loving every minute we have with you - but as hard as we try it always remains in the back of our minds - will today be the day, will you prove the doctors wrong again and continue life past 18 months. Every day with you is such a blessing
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