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, July 28, 2011

confusion and fear

Morning my precious angel. This week has been a relatively tough week, you have been ever so niggly and between 8 and 12 at night you dont stop crying.

Mommy has been having a really emotional week but somehow without realising I have pushed it aside, but yesterday I was no longer able to keep it in anymore - my tears welled up and just kept sliding down my face, at the most difficult times of course - when I was driving - but I guess this is my alone time and when I can scream shout and cry without worrying about anyone else seeing me or offending them or making them tearful. My chest felt so tight and I kept hearing this awful sound, eventually realising it was me who was wailing, it was me who couldnt stop crying.

Daddy and I have both noticed some changes in you and it scares us, although you get more feeds per day you seem to be losing weight and just stay continiously hungry. The way you communicate with us has changed - not quite sure how but it has. What scares us the most is that your breathing patterns have changed. You lose breath far to quickly and when you get the slightest bit excited it tires you, and your breathing just seems to become too much of an effort for you - making you sound like you have the most severe case of croup and I can hear it hurts. It takes so long to settle you when you cry and it never used to. There are times when it seems like you are talking to your angels and then all of a suddden screaming at them - it confuses and scares us.

Although we know the statistics and what medical research tells us and as hard as you think you can prepare - we just cant. Daddy and I fear your time with us wont be as long as everyone expects. There are times when we feel as if God is calling you and you just keep fighting so hard to stay - especially this last week - and only now realising that this is why I have been emotional - I have pushed it aside and been in denial. We are scared beyond measures. I am scared I wont be able to go on,  that my heart will stop with yours. I am scared for Daddy and your sisters. I am scared I wont be strong enough for them that I will be unable to comfort them cause I will be in such a state of dispair. My heart is broken and everyday it feels like a piece is chpped away and I will never get it back - just like every second I spend with you, comes and goes and I want more and more and more and I am scared I wont get more. I am scared if I shut my eyes I will lose all perspective and that I wont be able to see you or feel you, that you will be gone within a split second.

I am scared I cant take the hurt away, I am scared that I havent loved you enough - not that I think I could love you more than I already do, but every day I do love you more and more. I am scared that I havent kept you comfortable enough. I am scared that I havent taught you what I was supposed to teach you and most of all I am scared I will never realise your reason for being here, for coming to me and daddy and giving us more joy than what we could have ever expected.

My heart is aching, it feels like its being torn in all different directions and then squeezed till it cant be squeezed anymore. I am scared I wont survive losing you and keep your memory going.

I love you prevcious angel - more than anyone could ever know !!!

Wednesday, July 20, 2011

Not so great weekend

Morning my angel - This weekend just passed was not too fantastic - I think I should just stop bragging when you are doing so well - think I just jinx it for you. You were totally and utterly miserable on Friday and Saturday, although having given you some sleeping meds you did sleep well through the night, but during the day ...... just plain miserable. I think maybe you are teething, your gums are so white but still nothing, snotty nose, but no runny tummy ..... so hard to say what could be wrong. The solid sleep in the evenings definately helped cause you were a lot better by Sunday and just wanting to play, jump and shout the whole day - was so good to see you happy and not mizzy

Saturday morning was a bit nerve wracking for mommy and daddy, we had to take your mickey out and clean it and this is the first time that we have done it ourselves (the rep did it previously and I only watched) - we were so scared that if we took it out we wouldnt be able to get it back in. We have been warned that we only have ten minutes and then the hole (stoma) will start closing  ..... not exactly what we want to hear, so to save time, daddy cleaned the mickey and I cleaned the stoma and whala we got it back in. Now while we were doing all of this my hands were very sturdy, but the second daddy got the mickey back in I kind of fell to pieces - couldnt stop my hands from shaking and feeling totally and uterlly dranined - What adrenlaine does to a person - quite scary really. I think daddy was expecting to see this huge hole in your tummy and be able to see inside (sort of what I expected until I saw it for the first time), but glad to say that it is not. I am also happy to report it all went well and definately not looking forward to having to do it next month again !!! But I guess as time goes we will get used to it and it will become normal - a new normal.

Okay so mommy's immune system has finally given into the flu so feeling really rotten at the moment, and thank goodness for daddy who has been absolutely wonderful in taking care of you in the evenings when I should be doing it but now I think I am making daddy sick as well - never ends. 

You were really really miserable this morning, didnt keep your feed down and brought up a lot of bile and really battled to recover. I just hope and pray that you are not getting sick again.

Sending you lots of love and plenty of hugs and kisses may little nunu - see you later

Friday, July 15, 2011

Sleepless but happy days

Morning my little sweat pea - Mommy hasnt written to you for a while.

Besides many sleepless nights and the vicious cycle of constipation and then a runny tummy you are doing really well.

Lately when you want to do something you seem to focus and concentrate a lot longer than normal. This past week when I hold you, you try so hard to touch my face and even though it gets very exhausting and frustrating you keep trying until you get it right and when you do touch my face, it is so soft and gentle as if in complete fascination - it probably is complete fascination to you cause its not something you do often and for me it brings pure happiness and tears to my face - for most people it is such a small feat and is taken for granted but for us it is the greatest accomplishment ever and is treasured and imprinted in our minds eternally.

Mommy went to the hospital on Tuesday night to be there when Jacky had her little baby and when I got home I could barely even get into the house without the girls storming me over. They were so excited to tell me what had happened.

Kayla's mommy came to our house to bring Kayla's overnight bag and she wanted to hold you - now I have to let you know that Aunty Kirsty is very in tune with the "spirit world" just like daddy and uncle Kevin - anyway when she held you she could not stop her tears they were flowing  fast and strong and the funny thing is you were niggly before she took you and when you were in her arms you settled immediately and were in complete awe. After aunty Kirsty had her moment she gave you back to your sister and you wanted none of it - so she knelt down beside you and spoke softly to you and you settled yet again. Aunty Kirsty decided she had to get home and wanted to leave but youl started crying when she walked away and again she came back to you and before she even got to you you very nearly threw yourself out of your sisters arms to to get to her. Once she left you litterally passed out - no matter what the girls and daddy did you wouldnt wake up, but the second Aunty Kirsty sms'd to say she had made it home you woke up. Now daddy and I are convinced that you had an out of body experiernce, that you travelled with aunty Kirsty until she was home safe and sound and then you came back to us - yes people will think we are crazy - hell I think I am crazy cause this is stuff that I am definately not in tune with, but it is what it is.

And the funny thing is, for the rest of the night you were so calm and content and your little hands which are normally freezing no matter what - were nice and warm and open. Aunty Kirsty believes that your souls connected and that you have an "old soul" and you have known each other for a long time - like I say - it is what it is.

Any way little nunu my hopes and prayers are that you will continue to be healthy and that your chosen path is one that will be with us for a long time to come !!! Love you my angel