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, October 13, 2011

Surgery

Morning my precious little bug. Thankfully that last two days have been good and you have been feeling much better, although from last week Tuesday up till yesterday has been a complete nightmare. We were home from your last hospital visit for two days and in those two days all you did was cry and cry. Last Thursday we decided enough was enough and took you back to the doctor and well can you believe it ....... straight back to hospital. So your lungs were good when we left the hospital and litterally within two days they were full again and this time you were battling with the pain and discomfort. This visit has made us realise that your pneumonia is actually aspiration pneumonia .... yes i know took us long enough to figure it out :-)

You never slept for almost 4 days and we were totally exhausted. All you did was cry and moan and it broke my heart cause I just felt so hopeless and kept on wishing that all your pain would be transferred to me so that you would feel comfortable. We had you on three diffferent pain meds every four hours. This seemed to help somewhat but not for long, maybe an hour or so and then you would start with the discomfort again. On Friday night I finally discovered that you had an ear infection. All this goo seemed to be pouring out your ears. Finally we had some direction we knew what was really bothering you. We saw the ENT and fortunately you grommets are still in so that the puss can drain, and I must say since it has been draining you have been much better - a little mizzy but much better. By Saturday you were so tired it was time to play catch up - you feel asleep at 15:30 and only woke up at almost 09:00 on Sunday morning !!! - nearly 17 hours of solid sleep - something your body - and mommies for that matter - were craving.

We are home now, but only for a couple of days - on Sunday we go back to hospital so that you can have your surgery on Monday. Now, I was completely fine with this until yesterday after daddy took you to see the surgeon. Oh yes it is a relatively simple procedure - BUT and a BIG BUT, because it is the second time that you will be having the nissen done, this may cause complications. It will be done laprascopically but if there are complications he will have to open up completely - I guess it is good that he is taking precaution - ordering blood for you just in case. Now my angel although I know in my heart and I pray that all will be well - this scares the living daylights out of me. Once again we are in a catch 22 - if we dont do the nissen you keep going to hospital almost every second week for pneumonia or we take a chance and do the operation and hope that is stays this time and we sort the problem out.

Aaah my little sweetpea - you have been through so much in the last three months and it kills me to know that you still have to go through more. So now its to make the most of our time at home till Sunday. But my heart is happy today cause I know you are feeling better and slowyly looking and acting like our precious happy little shining light.

Shine my little star - let your light shine every so bright.

Love you
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1 comment:

  1. AnonymousOctober 15, 2011 at 6:26 PM

    Kim I just want to tell you that I am thinking about you all and praying for Lior.
    He is God's little miracle and will change your lives forever. Live in the blessing of his time with you. People tell me this as well, but you are amazingly strong (I know its not by choice), just keep your head up and your focus on the Lord and let Him do the rest. Lots of love, Jeanne & Kaylee-baby

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