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, January 26, 2012


Morning my precious angel face.

The last few days have been quite difficult. You are fine and absolutely healthy and strong, its mommy that hasnt really been ok. But at least today, its a bit better.

The day after daddy took you to the doctor for your check up, I was on my way to work and just out of the blue and ever so suddenly it was almost as if there was a tv in front of me and I was watching the night of your birth. From the moment we got to the hospital to moment I woke up the next morning.

Now this whole time I thought or believed I had cried my heart out, but what I was watching was the complete opposite.  I saw myself sitting on the theater bed waiting for the needle to take away all feeling - and that is exactly what happened. It took away ALL feeling. I saw the doctor take you out and heard you give a cry -  I could feel that heart wrenching feeling and heard myself saying "you are alive" and then it was quite, but the strange thing is, I wasnt watching you, I was watching me to see how I was reacting and what has been breaking my heart the last couple of days is .... I didnt react, there was no emotion whatsoever. This has been the hardest part because I keep asking myself, what kind of mother/monster am I if I had no emotion, no crying, no smiling, NO NOTHING ......., nothing but a bottomless pit of  ..... well .... of nothing.

Fast forward to when daddy came back to my room to tell me the doctors said you will probably die within an hour - I just looked at daddy and said No with a bit of a yelp but that was that. Still no emotion. I was concentrating on the hustle and bustle of people coming in and out of my room giving me condolensces - FOR WHAT !!!!!!! Everyones eyes were swollen and red from all their crying ....... and ME - NO CRYING, NO EMOTION, no nothing !!!!! what the hell is wrong with me, why cant I get the tears out, why am I not saying anything, why am I not demanding to see YOU - who am I, who is this person I am watching .... this "person" is just there and nothing else. Daddy, Ouma, Oupa, Granny, aunty Tich they are all there, but I am not saying anything, I am just looking at them, thinking GET OUT ...... JUST GET OUT WHAT THE HELL ARE YOU ALL CRYING FOR - JUST GO AWAY THERE IS NOTHING TO CRY ABOUT ...... but I say nothing. Councillors come and go - Religious councillors pray over me and go. The doctor comes in and asks us if we want to know everything that is wrong with you. I say No - whats the point. New doctors come and congratulate us and tell us we are being very mature with our decision. Hours later everyone leaves. A few minutes later I receive flowers from the hospital sending their condolensces at this difficult time - what freaking difficult time ...... what are you all talking about. Daddy needs to go to the girls .... they are crying and heartbroken. He turns to me with a heavy heavy heart and tears in his eyes and says "go see him, please go see him tonight" .... I pass out.

I am trying so hard to push this "TV" out of my mind .... I just cant take anymore - I DONT WANT TO SEE ANYMORE - but GOD wants me to see. My tears are falling, they are flowing like a raging river ... oh how I am hating myself right now.

Fortunately GOD has opened my eyes to the miracle of life. I am no longer blind and am full of emotion.

Love you sweet baby boy

Thursday, January 19, 2012

All good

Hello my little pumpkin.

Okay so daddy took you to see the doctor today and I am happy to say that everything is A - OK !!! Although you do have a little bit of a congested nose and a slight case of phlegmyness (nothing that some nose drops and saline nebs with a little pounding on your back wont sort out), otherwise the doctor is very happy.

Daddy says he is very surprised at all the solids you are getting and satisfied with your progress, even though you havent really put on any weight and you are now only weighing 6.3kg !!! When are you going to start putting on some weight my little munchkin. The doctor has suggested adding a but of pediasure to your bottles for extra calories, so will definately be trying that.

Okay so I figured out that you must be getting a little chilly in the evenings and thats why you have been so restless. For the last two nights I have put a long sleeve babygro on you and you have definately slept much better and not been so restless - yay for mommy ...... took me a while though.

We also had some visitors last night. Little Mia's mommy and daddy came to visit, they wanted to meet you and I am so glad they did. Such a wonderful couple and such precious and loving parents. It was heartbreaking to hear about the night little Mia received her angel wings, but you could just sense and feel all the love that they have for her and the awesomeness of their belief and cherished moments,  and I think some how it was a relief for them to be able to speak to someone who understands what they went through when Mia was still and earthly angel. I am glad they came and for us it was a priviledge to meet and spend some time with them.
Any way my precious angel boy, I am glad you are all well and full of beans.

Love you precious baby boy

Tuesday, January 17, 2012

Such restlessness

Morning my little sweetpea.

This morning mommy found it extremely difficult to leave you so that I could go to work, not sure why, but when I bent down to give you your morning kiss I got this overwhelming feeling that I just wanted to keep you really close by. Maybe its because for the last week or so you have been very restless. During the day you are fine, but its the evenings when you are like this.

On 10 January you had a really bad seizure  (you hadnt had one in a while) and I say bad because normally they dont last very long, a minute or two, and you usually go very rigid and arch your back with a screetching sound. But this time you seemed to have convulsions with the seizure, which is something you have never done before and it lasted much longer, 4-5 minutes. Now this doesnt sound very long but when you are in the moment, it is a life time. Needless to say you were really pooped after that and slept for a while. Now, a few days before that at a certain time of the day you would just start moaning and crying for a little while, but at the same time every day, and looking back this was about the same time in the afternoon that you had the seizure. So I am wondering  if the days before were leading up to it. Mommy will have to start keeping track to see if it happens again.

Since then you have been fine, full of life, laughing, playing and have so much energy - as you can see in the pic with your sisters - duirng that day that is You are still getting sleep, but its not a restful sleep and I just cant figure it out. I am not sure if you are getting cold, cause when I feel you, your skin is like a block of ice and you head is warm but when I put a blanket over you, you just go wild and kick it off - I guess you just dont like blankets. Or it could be that somehow you get your little feet stuck in between the railings of the cot and you cant seem to get them back in so you get irritated and let me know. Then, I never know if you are hungry or not, when I think you are I feed you and you never seem to complain, so maybe its that ....... sigh ...... I just dont know.

Two nights ago mommies heart fell straight to my toes and it really was the worst feeling. You were sleeping in your pram and you hadnt moved in a little while so I got up to have a look at you and you had a very strange glossy kind of look and it immediately sent a wave of panic through me, so i quickly checked your chest to see or feel movement and at that moment you decided not to take a breath for about 15 seconds !!!!!  It was the worst feeling ever, at that moment I though I had lost you. it felt as though someone had tied a rope around my heart and just pulled and pulled and finally squeezed the life out of me. Tia was sitting next to mommy and she picked up on my panic straight away and just quickly put her arms around me and held me tight. Oh my baby boy what will I ever do .....

So daddy is going to take you to the doctor today for a check up - you woke up this morning and your one eye was full of gunk - thinking you have a bit of conjunctivitus. So I think Dr Roelofse needs to do an all over check up. I just pray that is all it is.

Love you baby boy

Thursday, January 5, 2012

So beautiful

Hello my little pumkin. You have had a really good week, tolerating your feeds really well and full of energy. Mommy was reading another blog today and found a post that Kayli's mommy had put up a while ago and I found it to be so so beautiful.

This is what she posted:

The Brave Little Soul
By John Alessi

Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their hearts, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Love changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

And YOU my baby boy are one brave little soul and have unlocked the goodness and love in so many peoples hearts. YOU are our little miracle.
Love you sweat pea

Tuesday, January 3, 2012

Quiet Christmas and New Year

Hey hey santa's little helper <3 <3 <3

Well Christmas and New year's has come and gone - so quickly. Mommy is back at work and it was really very difficult to leave you this morning, especially since you dont sleep in anymore and were awake and ever so playful by the time I left for the office :-(

We had a quiet Christmas and new year, your sisters were'nt with us so the house was really quiet ..... well I cant say too quiet cause you seem to have become really vocal lately and surely let your opinion on everything be known, even learning to say NO ..... (not that you will ever say it when I want you to) and it is absolutely wonderful

Christmas was a lovely day spent with family, opening prezzies and I could even see the excitement on your face every time we sat with you to open one and this year you even played with your toys. Mommy asked Santa to bring toys that make a noise and things that you can hold onto and boy do you love them. You got a xilophone (however you spell that), a worm that plays music, drums, another toy which when you push the blue button it plays polly put the kettle on and you sway your head from side to side everytime it plays - almost as if you are dancing to the music !!!

You have been doing really well and I would even dare to say that you have put on some weight - will have to weigh you and see if the scale agrees :-) 

Mommy decided to really push you with your feeds and be a little daring and .....well you know just how domesticated mommy is (ha ha ha ) and I am very proud to say that I have been cooking up all these foods myself and liquidising them !!!!! Daddy and I are not really in favour of giving you purity (bottled food), although I do keep stock of it in case we are out and I dont have access to a liquidizer.
I have dropped you down to 3 formula bottles a day and have really pushed the other three with porridge (jungle oats) for breakfast,  lots of vegies and a portion of protein for lunch and supper. So far we have tried the following with you and you seem to be okay with it all:

Gemsquash, Butternut, Potato, Carrots, Spinach, Pasta
Rice, Baby Marrow, Hake (fish) ,Chicken, Peaches
Apples and Plums - quite a selection for you
You have been used to having an intake of about 600ml over a 24 hour period and with pushing your feeds you are now having an intake of about 750ml  and we can most definately see the difference, you are like a lilttle energiser bunny, talking away, banging your toys with such force and like never before and now you are even trying so hard to roll onto your tummy and seem to land up with your head face down in the blankets and the rest of your body in some strange kind of twist, but hey, you are not bothered cause you just keep trying and trying and trying.

So overall you are doing really well. Your sisters came home yesterday after being away for three weeks and well they werent very impressed cause you didnt really want much to do with them - they were so offended, but I know its just cause you were tired. We have managed to get you into a really good routine and by the time they were home, you had been playing all day and had ALL this food and were really bushed and ready for a bath and bed !!!

So I told them tomorrow is another day and they can play with you then and I do believe that is all that you have been doing today is playing with your sisters. They missed you so so much and I am happy to report, they missed mommy too (the mean old witch that I am) they even cried and held onto me so tight when they came home ({sigh}) just love you ALL SO SO MUCH.