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

03-02-2011

morning my little pumpernickle - mommy is glad you are feeling better after last night.

Daddy and I decided to try you on Isomil. This is now the 6th formula we have had you on. Every formula we have tried you take to for a while and then you battle to keep it down, so we have to continously change it. In any event we tried you on the isomil last night and it made you so sick. Normally if you vomit you get it over with and are still happy and smiley, but last night you seemed to be in pain. You brought up pretty much all of your feed and then some. The flem that came up with it was so thick, you really battled. You cried for a long time after that and when mommy eventually got you settled, you did not want to know anything about being in your cot, so we snuggled for a while until I thought it safe to put you in your cot without waking you up. Once you were settled I fed you with the Novalac and although you still battled you managed to keep it down.

Last night was really difficult cause for the first time I have felt like you were suffering and I really had to restrain myself cause I did not want you to feel my anxiousness, I wanted you to feel that you were in a calm environment, but I think you sensed it, cause you just wanted to be with me and gladly so.

So daddy and I have decided to explore the option of the gastric tube. We will have to see all the specialists and make a decision from there. All we want is for your quality of life to be better and if having the tube in the tummy will be better, so be it, at least then we can give you solids without having to dilute it. I hope and pray my little angel, that the doctors will say that you are fine and your little heart and lungs will survive the op.

"Heavenly father, you have blessed us so much and it feels so wrong to ask for so much more, but we continue to ask for your blessings of health, love, strength and courage to make this decision, to know that with your guidance, that whatever we decide together with the doctors, will be the best for Lior. That your loving hands will comfort and nourish him and that he will snuggle under your "wing" and know that he is with the highest power - Amen.
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