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.

Wednesday, August 31, 2011

Such a big boy !!!

Chomp chomp
oh mommy you are so funny

Hey you !!

Now this looks interesting - mom why didnt you put me in my walker sooner

Oh really .......

Is anyone looking ??
Sleep at last !!!!

Friday, August 26, 2011

YAY home home home !!!!

Yipee my little nunu, tomorrow we get to go home !!!!!

The last 5 weeks have been physically, emotionally and mentally exhuasting for all of us. 4 of those 5 weeks we have spent in hospital and to say that it definately has not been pleasant would be an understatement.

The last few days have been good for you. You have been feeling much better and getting back to the normal little shining light that we know. Yesterday we had to have a new mickey put in. With the fact that you have actually grown and lost so much weight in the last three weeks, it wasnt fitting properly and was leaking quite a bit. The rep came to change it for us and whala - although it still leaks a little when you cry - something we will never get away with - it is so much better.

Cant wait to get home and have you in a normal environment and be home with daddy and the girls. It is long overdue and will definately be so much better for all of us.

Keep going strong my baby - we all love you so so much !!!!!

Tuesday, August 23, 2011

Leaving it in Gods hands

My sweet sweet little angel, the past two weeks have been at the least a complete nightmare and totally draining and emotional on all of us. So many tears and heartache - I never thought it was possible to cry so much and feel like my heart is being ripped out so violently that it would stop any second and never beat again.

This is now week three that you are in the hospital.  Two weeks ago you were a little lethargic but we were not concerned cause you are normally a little tired if you havent slept the night before. By Monday morning you were running a fever and screaming. We phoned your doctor and he told us to come in straight away and once again the worst, he told us you had pnuemonia and had to be admitted and it all just went downhill from there. By Thursday you were no better and just seemed to be getting worse and the doctor said that things werent looking good. The intravenus meds werent working and your temperature still hadnt broken and you seemed to be in so much pain. Daddy and I spent the day crying, holding each other and talking to and holding you. I guess we were convinced that we would need to start preparing ourselves, - how does one prepare yourself for the loss of someone you love so so so much and that is so much a part of you. We phoned the family and told everyone that its not good and they need to come see you. Your sisters finally broke down and just couldnt any more. They have been so strong and so loving, but the emotion finally peaked. My heart was breaking even more knowing that they were in pain seeing you they way you were. I just wish I could take all the pain from all of you, including daddy and bury it somewhere where it will never be felt or seen again .... EVER !!!

It hurt so much to look at you and know you were not getting any better and there was nothing we could do. Even with the oxygen you could hardly breath. You were weezing and crying non stop, even the nebulsing didnt work. The doctor asked the physiotherapist to suction you and send it away for testing. The tests came back positive for the  RS VIRUS- a deadly virus in itself (especially for babies), and the fact that your lungs arent good as is and the fact that your features are so so tiny from the T18 and that you had pnumeonia was pretty life threatning itself. We changed your antibiotics and by Friday there was no change - not better but no worse either - which I suppose was better news, but not what we wanted to hear. Finally in the evening your temperature broke - 5 days later - my heart just burst, we were finally on the road to recovery.

But when it rains, it doesnt just pour, we have torrential thunderstorms - you had now also picked up the Rota virus, your feeds went in and came straight out. We were told if you werent on the drip you probably would not be with us, you would have dehydrated within hours. What more could go wrong? We now just had to wait for it to work out your system - how long would it take - more than long enough !!!

Another storm - a specialist came to see you so we could try and arrange for a little back brace - to help you sit - ..................... and now its flooding. Your little spine has curved too much and is causing so much pressure on your little lungs and rib cage, the brace will only make it harder for you to breath. No surgery for you - just no way  .............. and then another flood. Both your hips are out of their sockets (dislocated). You were most likely born this way cause you have never given any indication of pain in your legs - how much more can you take, how much more can we take. Is God testing you and us beyond our limits?

As each day has gone by you have been getting better and better, your lungs sound clearer and clearer - we are at the end - no more surprises, we should be going home soon ......... We are now at the end of week two and mommy had to go into the office while daddy looked after you duirng the day - which undoubtedly you love, you love your daddy so much - no one could ever say that you dont respond to him - because we notice it within seconds, how you cuddle up to him when he holds you and nudge your way into his neck so that you can feel his skin on yours. You are there, you are more than what anybody said you would ever be.

I have phoned to check in on you and all good - you are cheerful and playing. Not so long after ........... the call I have always dreaded - come to the hospital quick - how, why, how why, how why, GOD PLEASE !!!!! - from one extreme to the next. I heard daddy 's voice and I knew. I went completely cold. You had stopped breathing again and this time it was not good. They took you from daddy and wouldnt let him in the room. My mind, body and soul went cold - almost as if a calm went over me - how, why ?????

Mommy just got to the hospital when daddy phoned to say you were breathing and okay. It felt like years before  I got to you and when I saw you, besides your breathing being a bit laboured it was as if nothing had happened. How do you bounce back so quick? Is it cause we love you so much and you fight so hard to stay ??? Is it because you feel we will fall to pieces. I know we will, but we love you so much we know we will need to keep going.

After everything your little body has been through, your little light keeps shining, brighter than ever. It shines so bright I can feel the glow on my skin, the tingle through my veins and smiles it brings to all of us.


Thursday, August 4, 2011

So thankful

Oh my pumpkin, after mommies last little letter to you I got home and you were all smiles and talking away. Eventually you were tired and had a sleep and not long after I put you down in your cot you started crying and I couldnt get you to stop, daddy tried and he couldnt either. At one point I asked daddy if he could hear your airways swelling and closing off and before I knew it I could see it coming. I ran straight for front door to unlock the security gate and then the main gates. I fumbled with the keys and just really battled to get everything open in my state of panic. My legs were so heavy and felt like they wouldnt carry me., all the while I could hear daddy shouting your name and then shouting for the girls and the more I could hear the heavier my legs became. When I got back inside you had already stopped breathing, your little body was so limp and so blue. We took you and ran for the car, by the time we got to the front door you took a breath, just one, and then a few seconds later another and then another. Very laboured and rough breathing. We got you to the ER and they gave you oxygen to bring your colour back and the doctor on call decided to massage your precious little heart - of which you wanted none of - cause then you started crying again - which was a music to my ears !!!

We spent the next four days in hospital, with a little blue spell here and there but the minute we noticed we gave you oxygen and you settled very quickly. The doctors are not sure why this happened and I guess we will never really know. One paed says its just one of those life threatning incidents and another says it could have been the start of croup - the xrays showed your lungs to be clear.

We finally made it home on Monday and you yourself were so happy to be home. I put you in your walking ring and for the first time you were happy to stay in there and play for a little over an hour. You have had a few good days since.

Mommy got home from work yesterday and you were sleeping. When your sister wanted to bath you yesterday afternoon, you began having a seizure, a mild one. Tan called for daddy and they got you semi settled, but as soon as it stopped another one started and not such a great one at that. It drained you so much, you didnt even budge when I got home, let alone bat an eye lid when daddy spoke - and when you normally hear daddy's voice you go wild. We decided to let you sleep so your little body could get some rest. Eventually you woke up at about 9 or so and decided it was time to play. Yes it amazes me, after all your little body has been through, you still have the energy to play and cuddle.

I took you to the lounge and a few minutes later the lights were out - no electricity whatsoever. I must say it was actually quite nice sitting in the dark. the house was quiet and you were in awe of the lead lights from the lamp. Daddy was making shapes on the ceiling and you couldnt move your eyes away - it really was a special moment for me. We had some cuddle time and then you went to sleep and didnt really have a bad night after that.

I am thankful for every day that we have with you my precious. I am thankful that I get to see the gleem in your gorgeous little eyes. I am thankful for your smile and your little giggles every now and then. I am thankful that you try so hard to stand. I am thankful to be able see you get frustrated when you try and get your finger in your mouth. I am thankful that I can feel your skin against mine. I am thankful that I can see your daddy and your sisters cuddle you and shower you with love. I am thankful that I can hear you cry. I am thankful that at times you can feel my tears. I am thankful that I am able to put little socks and shoes and your tiny little feet. I am thankful that you can reach out and touch my face. I am thankful that you can wrap your tiny little hand around my finger. I am grateful that at times you will look directly into my eyes . I am thankful that I can breath your scent in and most of all I am thankful that God gave you to us and made you as special as you are.

Love you sweet pea !!