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

Morning my precious precious little angel. Mommy and daddy thought the last two weeks were from hell, I guess we were wrong ....... the week we came home from the hospital, the first two nights were bliss and then from there it went downhill. All you did was cry and the more you cried the more the g-tube leaked, what were we to do. On Tuesday daddy decided to take you back to the surgeon as he was concerned the wound was not healing the way it should be. The appointment was scheduled for 10:30. We thought that we would have to put you on antibiotics to clear any infection, WE COULDNT HAVE BEEN MORE WRONG !!!! Daddy phoned me, (mommy was at work, didn?t think it would be necessary to take time off, after all I want to keep that time for when we really need it), the second I heard his voice ( or should I say he heard mine), for the first time daddy broke down and cried and as quickly as he cried, he stopped ............. again wanting to be strong for mommy (sigh) ..... men ....... why can?t they just let it out ? ...... My heart went straight to my feet, you had an infection and not one that antibiotics could clear. You would have to go under anaesthetic again for an emergency operation. With all your crying, the acid in your tummy had damaged the tissue around the wound and the surgeon would have to close the hole and we would have to go back to the nasal tube. ALL OF THIS FOR NOTHING, ALL THE PAIN, TEARS, FRUSTRATION AND FEARS, HOW COULD WE DO THIS TO YOU. SO MUCH FOR COMFORT CARE, SO MUCH FOR PUTTING OUR WANTS ASIDE AND FOR WANTING WHAT IS BEST FOR YOU AND NOT FOR US !!!!!!!!!! Mommy finally made it to the hospital with the help of aunty Teressa (mommy definitely was not in a state to drive) ? I think it took about 30 minutes but it felt like a life time. I walked into the ward and when I saw you on the drip and oxygen and all that I just fell to pieces .... again. You went into theatre at about 14:00 and yet again I felt like I was walking into a death trap ? the longest wait of our lives ? I think even longer than the last one (even though you were in for only an hour) ? I just thought ..... will your heart stand it again and yet again I was waiting for them to come out and say I am sorry, we did all we could, his little heart just couldn?t stand it ? but the little miracle that you are you came out perfectly fine, you weren?t even crying !!! ? you are so so so strong, and such an inspiration my little pumpkin. The surgeon, bless his heart, managed to save the g-tube, so we have not had to close the hole and go back to the nasal tube (hala freaking luja) and now you have the mickey which is so much more comfortable for you. You slept for most of the day and night, the doctors decided to sedate you for the evening and you slept like a bomb. I laid there and listened to your breathing for what felt like an eternity, I was so scared that something would go wrong, I mean after all it couldn?t be that easy. Not sure what time I fell asleep, but that was the first night mommy actually got a few hours sleep. I woke up the next morning feeling very groggy and tired but so grateful that you were fine. In mommy and daddy?s state of mind we sort of forgot to bring all your bath stuff and clothes (we had clean clothes and nappies in your day bag, but didn?t have a hospital bag for you) ? how silly could we be ? so mommy decided to go take a break from the hospital and go and buy a few things while daddy stayed with you, in the mean time, one of the nurses/sisters decided to give you a bath so you could settle and feel more comfy, and my worst nightmare, she found a lump just above your groin. When the surgeon came in that evening to check on you, he felt around and promptly stated that you would have to be operated on again ? how much freaking more can we take, how much more can you take !!!!

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