Letters to Lior
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 28, 2011
Tuesday, April 26, 2011
Ok so now its the count down 2 and a half days till your BIRTHDAY !!!! Whoo hoo !!!! cant wait, neither can daddy or the girls although you probably havent a clue why we are all so excited, but you will soon find out.
Loving you lots
Wednesday, April 20, 2011
In any event, you have been smiling so much more lately - and then when daddy gets hold of you, lots of giggles, some of them delayed reactions but nevertheless a wonderful sound.
From all the operations, you seem to have lost quite a bit of muscle tone but you are slowly building it up again. When you feel like it you try stand a little (with mommies help of course) and you hold your head up for a little longer each day - something you were able to do for quite a while before the operations.
You have also put on some weight, almost 600grams and now all of a sudden your 0-3 months outfits are looking a bit too snug - so now we have got you in the 3-6 months outfits which kind of seem a little bit too big - sigh ....... - you will grow into them ..... eventually :)
You were just too cute the other night - full of energy and trying to mimic mommies expressions. I was trying to make and O sound and showing you the shape of my mouth you tried so hard, eventually you went squint but managed to get the O shape going - just too gorgeous for words. Nevertheless your sisters thought you were absolutely histerical - such a little character you are.
So we are getting ready for your birthday party and have decided on a Mickey Mouse Pirate theme, - a) Mickey Mouse because of your Mic-Key and b) Pirate because your one eye is smaller than your other - Kudos to Jacqueline, Mommy and Tia - YAY !!! Cant wait. We never thought we would see the day, but here we are and it is so wonderful and exciting, and going to be so memorable.
Missing you much littke munchkin
Friday, April 15, 2011
So mommy is really thinking about aunty Taryn (litte Mik's mommy) , she is really not feeling well, she is very sick and feeling down. I read her blog today and I just wish I could be there to give her a great big hug and have a good cry with her and be able to comfort her and say I know how you feel, something I think we both need.
I know for people not in the same situation or as I would normally say, the same roller coaster ride as us, this may sound strange, but reading aunty Taryn's blog today has finally hit the nail on the head for me, let the bell ring (ting -ting), or the light shine or knocked some sence into me. We have both blamed ourselves for you and little Mikayla having T18, asked ourselves what we could have done to make you "healthy", we have both asked why God didnt answer our prayers, but in fact GOD DID ANSWER OUR PRAYERS . All through our pregnancies, we asked for healthy babies and although you and little Miks both have T18, you are still healthy. You are as healthy as can be for a Trisomy 18 baby. Although there are times that you stop breathing and have to be fed through Mic-key and although you have a cleft palet and rocker bottom feet and a slight case of club foot, and although there may be neurological problems and although your hands arent completely open as a normal baby's would be, and besides the nasty post nasal drip and the constipation, you are generally very healthy - and isnt that what we asked for? Healthy doesnt mean NO DISSABILITIES - healthy means no sickness. You dont have a sickness, you have an extra chromosome.
As hard as it is, it makes me feel better to know that God did think of me and daddy and of you, and that he did give us what we asked for. I didnt ask for a "normal" baby, I didnt ask for a baby that does not have Trisomy 18, I asked for a HEALTHY baby and that is exactly what I got. So thank you heavenly father for listening to my prayers, thank you for keeping our precious little boy healthy.
So I will be keeping aunty Taryn and little Mikayla in my prayers, I will be praying for their health and for them to keep strong. I will continue to pray for my healthy baby to remain healthy.
Love you lots little pumpkin
Friday, April 8, 2011
I have been reading a blog which Little Nolan's mommy has written (Nolan was also a full T18 baby) - "Life after loss" - I am sitting here and cannot contain myself, the tears are flowing and I seem unable to stop them. Little Nolan passed on not so long ago and his mother is doing so well but desperately missing her little boy and trying to go through the grieving process
I know that someday I will be feeling and going through the same motions - and I am only hoping that it wont be any time soon. I am sitting here and my chest is closing in, as if my heart is already broken and in need of mending. I feel like I can't breath and like everything is spinning out of control.
I keep thinking will our little angel go peacefully, will we be with him when his time comes, will I be able to hold him and make him feel safe and loved, will we be able to whisper our goodbyes and be able to be strong for each other, will I be able to comfort the girls when they will need me most. Will I have made an impact on Lior's life and been the mommy that he wanted and needed and that God intended him to have .......... I know that God has sent him to us for a reason, I know he is "on loan" and I know it selfish but I am so desperate to hold on tight, I dont want Lior to be "on loan" - I want him to be mine to always be here - forever - I fear I am not strong enough.
I know he is still with us and I know it seems strange to some - "mourning a child that is still here" - but I am not mourning Lior, I am mourning what is to come, I am mourning the future, a future that I dont want.
Although we have learnt to "live in the now", live for every second of every day, we are still human and cannot keep these feelings at bay. Dont get me wrong, I love and cherish my little angel, but now I ask WHY .... why has God put us through this - Why does he feel I am strong enough to do this !! What is his plan for me.
Thursday, April 7, 2011
Daddy and I were expecting a sleepless night last night, but to our surprise you slept well, even though you had me awake from 12 to 4 this morning, we still felt like we had some sleep and this morning you looked just like yourself, our beautiful sleeping little angel. Thank you for being so strong my angel boy, thank you for giving us the strength to carry on ? we love you so so so much my precious precious angel.
Lets carry on - The nurses were not quite sure what to do with mommy or what to say to me cause I was basically hysterical I was crying so much I couldn?t talk (daddy was downstairs - I think trying to gather himself to be strong for me) and the nurses brought me a box of tissues and tried to console me ..... not quite succeeding. The time came when we had to take you to theatre - they allowed us to carry you in....... "walking the walk" - I felt like a prisoner in my own body, going to a death trap - I know it all seems so negative - but I am human after all and I do feel these things, as hard as I try not to. Anyway, you went into theatre later than scheduled but you were sucking so hard on your dummy and a little restless. Eventually when they came to get you I tried so hard not to cry and I remember saying to you that I would keep your dummy and that you had better come back and get it from me and that I love you so so so much - (I know it sounds silly - but when you are emotional, silly just does not matter. Every second felt like a million years, we now had to sit and wait for two hours and as hard as we tried to block it out, all the negative thoughts creep in - what if !!!! It felt like the doctor would come out at any second and say I am sorry, we did all we could. After two long heart wrenching hours the surgeon came out and my heart dropped straight to my toes, I think he saw the panic in my face because before daddy and I could get to him he put his hand up (as if to say don?t panic) and said that everything went well, there were no complications. Eventually they called us to get you from the recovery room and all you did was cry - I mean what else could you do - but the thing is it wasn?t really a cry it was more like you were saying a distinct owe. Even the nurses in the neonates had a good giggle cause it was so clear. My sweet little angel, hearing and seeing you like that broke my heart. You just wouldn?t settle, eventually the sister in neonates decided that they needed to put you on a pillow on my lap. The second they did this you stopped crying, just like that - like turning a tap off, but not for long. The anaesthetic obviously started wearing off and the pain set in. They gave you all the normal pain meds that a baby would receive post op, but this did nothing, so they eventually had to resort to giving you morphine to ease the pain. So little yet your little body resists so strongly. Even with the morphine running through your veins you refused to sleep, you forced your little eyes open and held on to daddy for dear life, but at least you were pain free, we at least we think you were. Eventually at 8 that evening your little eyes just couldn?t any more, you finally drifted off and had a good night. You slept most of the Tuesday which was good for you, but then we had to try and start weaning you off the morphine, you didn?t do too badly although we did have to up the dose every now and then just to get the pain under control and manage it. Wednesday was good, you also slept pretty much all day and all night - which I was really grateful for cause when you sleep your body heals quicker. Thursday night it all began, colic set in and from 9 in the evening to 3 in the morning all you did was cry - this still has not changed. You are on so many pain meds but nothing seems to work. The more you cry the more the tube leaks - which makes mommy panic (quietly). The surgeon says this is normal, but I still don?t like it. I just wish we could put the peg on, but I know we cant until your wound heals some more. I never dreamed this would be so difficult and so emotional. I mean I knew it would be trying times but not as difficult as it has been.
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.
We had a good but sort of strange weekend, mommy was on facebook T18 mommies site and I came across a video clip of a little boy called caleb, who also has Trisomy 18, also a gorgeous little boy. I managed to get daddy to have a look and he was so intrigued which got him wanting to see more. Now remember this has been very difficult for daddy, mommy's way of coping was and still is to do as much research as possible, but daddy not so much. Anyway we came across another video clip of a little boy called Lane whose mommy has asked to be friends on facebook, anyway he is now two years old and doing really well, but at the end of the clip there was a statement to the effect " we want to change the doctors perception of "Trisomy 18 - incompatible with life" - well my little angel I have never seen daddy so disturbed in all my life - which then turned to anger and then determination. How can someone tell us or decide for parents like us that our children are not worth living. We were so lucky with your doctors that they respected out decision to bring you into this world and support us as best as possible. Overseas this is not the case, children like you are considered not worthy of life - a complete disgrace and it is you my little angel and many more children like you, that prove them wrong. I am so proud of you !!
The last three nights you have been so restless that we have only managed to get at least two hours sleep every night. The night before last you had another seizure, not a severe one, but bad enough. You were fast asleep and I put you down in your cot for the night and quickly went out the room to make a bottle for your next feed, (something I never do, I never leave you alone, but you were sound asleep, breathing easy and restful). I was standing talking to daddy while shaking/mixing your bottle and next thing I knew there was a horrible screetching sound coming from the room, normally when you have a seizure, you dont cry or moan, but this one you just screetched with the rest of the symptoms you have. Fortunately it did not last as long as the previous one, so you settled very quickly. Although I know I couldnt have stopped it, I feel so guilty for having left you for two minutes. NEVER AGAIN !! Daddy and I have decided we will split your meds and give you half in the morning and half in the evening as it makes you sooooo restless, maybe it will be better this way and you can work most of it off during the day. I think daddy had enough of my umming and aahing every ten minutes last night and then to top it all off, not sure how the heck it happened but I knocked over a jug of water which fell into your cot and eveything was soaking wet. So I padded the pram with blankies cause during the day (when you decide to have a nap, which is not the norm) you love sleeping in it. SO I put you in there and well still every ten minutes umming and aahing (from me of course) - not sure if it is tiredness or frustration or what. It was a long day yesterday off to work at half 6, home by 6 and then off to youth with the girls for their little function and eventually home just after 9. I think right now mommies body is screeming for some sleep, but we will push along and try to remain calm and unemotional and patient. (easier said than done right now). I think you are teething more than normal right now cause dad says you had a really runny tummy this morning and you didnt keep any of your morning feed down. But I am not really too concerned about that, you have kept your feeds down very nicely the last week or so. I guess mommy is just feeling very, lets say - overwhelmed today and the fact that I am not with you is making it even harder. Missing you terribly today my little munchkin
We started you on the meds for the seizures. Daddy and I were scared to give it to you at first cause we were not sure how your body would react to it. Daddy still said to me that he was not going to let you sleep in your cot and that you would sleep in bed with us. So we decided to give you the meds early so that we could monitor you. Well it knocked you for a loop, within ten minutes you were fast asleep, there were no side effects except for a little restleness. My only concern was that the medicine would make you like a "zombie" but it hasnt, so my heart can rest. You have stayed as talkative and as happy as you always are. I think many people need to take a lesson out of your book, you have had so much going against you, yet you fight back and still stay happy and shine your little light on everyone around you, no matter what the circumstances are, no matter how crappy you are feeling your little light shines ever so bright!!
Your other big sister - Tia - started high school today, she was super excited and so proud to walk into the school with your other sister. It was just so heart warming to see Tannyth looking out for Tia - Enjoy the harmony while we can:).
Although I know Tia is so excited, her heart is not where it should be today. When I got home on monday, I saw that she had been crying and was not herself. It turns out her daddy was very ugly to her and she is so heartbroken and somehow I think you knew cause you talked to her non stop and made her feel a little better while daddy was trying to council her and keep her self esteem up. Sometimes I just dont know what I would do without daddy, he is definalty my rock.
You are also going to meet anuty Sharon for the first time day, she cant wait to meet you - shoo okay, getting a little emotional right now and battling to hold back the tears, so I think i will write some more a little later. Loving you so much. Love mommy
Tia is in her element, cause all your other sisters are sick so she is the only one that is allowed to hold you and she is just loving it .... having you all to herself. Well my little one, in the next few days the house is going to be very quiet, your sisters will be going back to school so at least they wont wake you up in the morning anymore, not that you really wake up before 10. When you want to sleep, nothing seems to bother you. I guess it will be back to fighting with Tia to try and drag her out of bed in the morning. she is like you, loves her sleep - when she wants to :-)
Missing you much and cant wait to get home to be my family. Love you lots!!
Lior is doing great, although he is a little snotty and coughing a bit, but nothing serious, as long as I keep nebbing him he will be fine. We had a wonderful christmas with the entire family and a quiet new year with the kids, I think I was asleep beore the new year even kicked in !!
Lior is now 8 months old and going from strength to strength every day. He has learnt to turn himself in a full circle when he is lying in his play gym and can entertain himself for ages. We figured out he just loves classical music, his whole demeanour changes. He has learnt to play peek a boo with us and is manouvering himself a little more in his walking ring. He is also trying to eat purity, yesterday we managed to get him to eat 6 mouthfuls and then he just gets tired and irritable so we have to tube the rest, but at least he is trying.
Not quite sure what to do about feeding tubes for Lior, the suppliers have discontinued the make that we use, or should I say the length and the next length is double the size of Lior. Its either this or using the weekly tube and I dont want to do that cause the older and stronger Lior gets, the more difficult it is to get the tube down, he fights so much and just stops breathing, and I think I would rather only go through this once a month than once a week !! I will have to phone the world to see if anyone of the hospitals may have stock lying around.
Was difficult coming back to work today, kind of felt like when I had to come back from maternity leave, just did not want to leave my little boy. In any event, I am sure he will love spending the time with his sisters and his ouma.
Lior has now started to try and roll onto his tummy, he gets it right, but now has to figure out that he needs to move his arm out from underneath him, baby steps - he is doing so well. He is just so full of life and bringing so much sunshine into our lives. Talks non stop, or should I say shouts non stop, loves the attention he gets from his sisters and has even started laughing in his own little way.
The girls are going to be spending christmas with us this year, it is actually their other parents turn but because this may be the only Christmas that we may have with Lior we have asked for the girls to be with us. They are all so excited and so are we.
Just want to wish everyone an awesome and blessed christmas, may all you wishes come true and may God be with you and Bless you in every way possible!!!!
I then get to work this morning to find out that one of my colleagues gave birth to her little boy over the weekend (at 26 weeks of pregnancy) and due to complications he passed on this morning, on the morning my little boy turns 7 months old. When will all this stop !! this year has just been horrendous. I cant say I know how she feels cause I still have hope, I still have my little boy. I wish you Gods richest blessing and all his strength through this difficult time my friend!!
I also want to say Happy 7 month birthday my little boy, a true miracle indeed
Lior is doing well - a little flemy at the moment, so started nebulising him with saline and adrenailine again and giving him physio (which to my surprise he loves - falls asleep). The only problem is when he is so flemy he doesnt really keep his feeds down, but like the doc says as long as it is only a little and its the only way he gets it out, no problem. I started him on purity this weekend, gave him a little per mouth, although he battled a little he took it in his stride and swallowed (takes him a while though), he seemed to enjoy it - well the banana one at least, will have to see how he takes to the vegies - but he did let me know when he was tired and did not want to swallow any more, so gave him the rest via his feeding tube. Was quite a mission trying to feed him with a spoon cause with the cleft palet there really isnt anything for him to grip the spoon with so I figured out that I had to turn the spoon upside down and sort of scoop it off the spoon with his lower gum. Feeding the purity through the tube is confusing cause I have to dilute it with boiled water to ensure that it is thin enough to run through the tube, so in the end I am not sure if I am giving him enough, cause now the feed seems to be double with the water, so I try to ensure that he has half a bottle (small) of purity - I suppose it is enough for him, considering his milk feeds are only at 120ml - will slowyly start to increase it weekly. The only other thing that concerns me is that we have had to drop a bottle, so now instead of 5 he is only having 4 - been so long since we had a baby in the house, I cant remember all these things, and with Lior its just sooooooo different - we dont really know when he is full or when he has had enough or is still hungry, okay the hungry part we are getting a little better at figuring out, he tends to really suck my finger when he is, but he is also teething now so he sucks and bites my finger cause of that as well, at least we are giving him vydalin which also helps (just cant stand the smell of the stuff, sometimes I am glad we giive it to him thorugh the tube cause that stuff is just soooooo ugh !!! . He really is getting to be full of beans now. Loooooves his rattle, has a few bruises from konking himself on the head !! We have also been putting him in the walking ring more often and he is managing to move around a little, mostly out of frustration, but atleast he is trying - one step at a time, after all he is doing things we were told he never would.
I received an e-mail from taurus inc (the baby competition) to tell us that the babies with the least votes would again be taken out and Lior is still in !!! Considering I havent told anyone, besides daddy and the girls and besides my last post - I am really chuffed !!! All in all we had a good weekend, he has been sleeping well and been very cheerful !!
I just hope and pray that I can keep him from getting ill with this weather constantly changing and I just cant keep him covered at night, even if I put a little sheet on him he kicks it off and if I put warm clothes on him he just sweats terribly and I dont want him to be "wet" during the night - just a no win situation at the moment.... what to do ......
I entered Lior into a baby competition - thought what the hell, he is who he is and I am proud of him and love him to bits and iether people will vote for him or they wont. We got an e-mail this morning telling us to go to the site (http://www.taurusinc.co.za/results.asp?category=266200917237) to see which babies have been eliminated from the competition for not having enough votesd and Lior IS STILL IN THE COMPETITION !!! Yay my little pumpkin is soooooooooo gorgeous !!!
I met another lady at the hospital - she was in the room next door to us - yes we were lucky enough, or the doctor was kind enough to arrange a private room - her little boy is now 8 months old, he has been in and out of hospital for the last few months. They know he has muscular distrophy ..... how ever you spell that - and suspected cerebal paulsy - he is just the most gorgeous little boy, red hair, huge blue eyes and just full of life. On Friday last week they were discharged and re admitted on Tuesday night, it now turns out that the blood tests indicate that he has a virus called SMA and will probably not live to see his second birthday. Mommy my heart goes out to you, for once I can say I know how you feel. We at least knew before and chose our path, you have only just found out and your path has been chosen for you. Be positive and cherish every moment that you have, the good and the bad, this is what will help you stay strong.
Lior is back home and we cant tell you how lovely it is to be home and in our own environment and to know that we have a little more time with our boy. Love you my angel !! I also just want to thank all my friends and loved ones and especially my colleagues who have been so full of love and support and been a huge shoulder to cry on !!
It is scary how children can get sick, literally over night. We went to visit Jacqueline on saturday and had a lovely day, no indication whatsoever that you were not feeling so great - you were your normal happy bubbly self. On Saturday night you were niggly so we did not get much sleep and then on Sunday you just didnt stop screaming to the point that you kept on losing your breath and then being completely pooped. We would get you settled for an hour or so and then it would start all over again. We took you to your paed on Monday and you still screamed in the waiting room, but the minute we walked into the doc's office, you were chatting away as if to say, look at me I am fine - nothing wrong. Wish that were the case. Yet again you have developed flem on the chest and we have to nebulise you and put you on antibiotics . The doc says with Trisomy babies it is common to have the chest infections - my worry is that it will get harder and harder for you to recover from the infection every time you get one. He also held your legs and noticed how your one little leg shakes, as if you are resting it on a nerve, he says it is a common example or sign that you are not neurologically normal. Although we knew that this would be one of the downfalls of your syndrome - but it does not seem that you are not neurologically normal, yes you may not be as advanced as other babies but your are learning. He was also amazed that you were "talking" and responding to us and like wow he can hear you and respond thats amazing. No, its not amazing, you are as normal and as perfect as can be !! Anyway we got you home and nebulised you, boy did you scream and at 5 months you are so strong that I battle to hold you. You were a little better after that, no more screaming. Gave you a nice bath and nebulised you again, this time I think you were just too tired to even bother fighting, even your llittle eyes were bloodshot. We fed you and put you to bed. You had such a good night, restful, and are all smiles again today. I am so glad we did not wait to see what was wrong. We just cant take any chances
When I got home yesterday I could see daddy was not entirely himself and he told me he had a very emotional day yesterday. Now dad being dad and I suppose being a man, it is very hard for him to show emotions, besides the fact that he tries not to because he feels he needs to be strong for mommy and your sisters. I am glad he did. It has been a long hard road so far - loving every minute we have with you - but as hard as we try it always remains in the back of our minds - will today be the day, will you prove the doctors wrong again and continue life past 18 months. Every day with you is such a blessing
Today I found myself in complete and utter awe ...... tomorrow Lior will be 5 months old ............ how quickly time goes by. We will celebrate his "birthday". I have been looking at photos of our little miracle since birth and although he is still so little (the size of a new born baby and weighing just over 4kg) he has grown soooooo much. Doctors said he would never do things and would be severly deformed and have severe mental retardation and that it would be best for us to abort. NEVER did we ever consider this, we needed to give our little boy a chance at life and he has grabbed it with both hands and holds on tight.
I look at the milestones he should be reaching, yes he has not reached all of them but he has reached most of them for his age - he has learnt to role onto his back and to his side again, he lays on his tummy and lifts his head and shoulders (doesnt like this position at all) although he does not smile as much as "a normal" baby would he still smiles (something the doctors said he would not do). He holds his hands together and manages to get his two fingers linked. When he is on his little play gym, it takes a while but he does eventually try and reach for the toys, although he cant grab them he still tries. On Saturday he also figured out how to suck his thumb, so yes he has not reached all the milestones that a 5 month old baby would normally but he has far exceeded everyones expectations. ALthough he is susceptible to infections and sickness he still fights and stays strong and continues to be a happy baby, dont get me wrong, he still has his litle tantrums when he wants to - and the difference for us ..... although it scares us at times we cherish every moment, every tantrum every little sound that he manages to get out, even the frustration on his face when he can't get the sounds out (due to the cleft palet).
I got an e-mail from Jay yesterday and after a lilttle discussion her advice to me was .................. "live for each day you have him enjoy the love and joy he brings you and love him like there is no tomorrow, because in the end that will help you. The love and joy you shared........" Very hard words to read but ever so true !! Just looking at his pictures and remembering our moments the day before gets me through the next day when I am at work.
Jay's little girl passed on in November last year - little Jess also had Edward Syndrome. She was 18 months old. I dont know Jay well, but I look up to her, she is kind and generous and is more than willing to share her feelings and advice with me. This means so much to me, she has been through what we are going through at the moment, she knows every incling of feeling that passes through us as we experience every day. Together we want to let the world know !! Support groups/information in South Africa is very limited and doctors etc are not very forthcoming with the information. I must say though we have been very lucky with our doctors, they have supported us through all our decisions and not treated us any differently, this has made the world of difference to us and we want to acknowledge and give thanks to them.
Not many people know about Edward Syndrome/Trisomy 18, we also thought it to be very uncommon/rare, but research has shown that this syndrome is the most common after down syndrome, the only difference is, T18 is not compatible with life, 85% of babies are born to heaven or the mother miscarries in early stages, 10% of children born with the syndrome do not live past their 1st birthday, that is why it is so important for us to drown ourselves in little Lior's spirit and bask in his light that shines continously.
We had a good public holiday, spent the day with family at your aunty's house and she just kept you entertained most of the day. By the time we got home we were all pooped - it was a long day. Mommy put you down for the night but you didnt sleep well, kept coughing most of the night. I was not taking any chances, took you to the doc and you seemed to have caught some kind of virus - which in your case is very dangerous. So yet again mommy has to do what you hate most, nebulise you. Fortunately its only for a week this time and not 3 weeks, so I think we caught it at beginning stages. The doc says we can't put you on antibiotics cause you have just come of a course of them. But in any event, you were much better last night. I put you down after your feed and you were quite happy to be in your cot, but when I kissed you goodnight, you decided no more I want to be in bed with mommy and daddy - and yes you got your way - and only with the greatest of love and pleasure !!
Daddy and I decided we needed a day out yesterday and went shopping, yet again you just loved all the different things to see, and again it never seizes to amaze me how complete stranges just want to touch and cuddle you - it is as though you have this light shining through you that everyone can see and wants to be a part of.
God willing my little angel - your light will continue to shine. We love you so much !!
Your little footprints are travelling all over - shining lots of light and love on so many people.
You almost gave your ouma a heart attack yesterday, either you were trying to clear your throat or trying to get your tummy to work, but you stopped breathing aand went blue, you took longer than normal to recover. Ouma has not experienced it with you yet, so needless to say she panicked and so did your Diana - Yay Tan to the rescue, cause she has been around us when it happens and sees what mommy does, she kept a calm head and told ouma to put you on your side, blow in your face and pat your back and then phoned daddy and told him to hurry home. Its amazing that a 15 year old can stay calm in a situation like that. - Needless to say you were pooped after that, had no energy whatsoever. I spoke to daddy this afternoon and he says you had another little episode today. Mommy needs to keep an eye on that, you seem to be having apnea a little more often than normal and that really scares me, I am not ready to let go :-(
Caroline came to see mommy yesterday and it was great talking to her, but it also opened a whole mine of emotions. I think yesterday was the most difficult day I have had since being back at work. My thoughts just spun out of control. When I am with you it is so natural and nothing else but my family matters. But When I am not with you the fear sets in.
I fear most that I will not be with you when your angles come and get you, that I will not be able to hold you and cuddle you, that I will not have a chance to say goodbye and whisper to you that i love you one last time. I fear the pain and loneliness that your daddy and your sisters will feel.
Little Ethan came to visit yesterday and normally I wouldnt think of it, but yesterday it hit home, that I may never get to see you reach those milestones, walking around with our keys in your hand, and trying to kick an apple, walking under my desk and hearing you laugh, this is why I treasure every second I am with you. Your different cries, your coughing, your sneezing, the way you love to be without a nappy, and how you arch your back when you are in the bath until your head is in the water. How you talk to your sisters when I am dressing you, how you love to have your doekie against your face when you want to sleep and how at times you dont want to suck your dummy but my finger, I try so hard to keep these imprinted in my mind, I am so scared that I will forget.
How can you heart feel so much Joy and happiness and also feel like it has been shattered into a million pieces at the same time
I love you
Boy oh boy did you give me a hard time with your evening feed - it took almost two hours to feed you. We got you into bed at about half past ten and I think Mommy and Daddy just fell into bed we were so tired, but that didnt last long. At 00:30 you had me awake and for the life of me I just could not figure out what it was that you wanted so we were up and down - in the bed with mommy and then back in the cot - changed your nappy - back in bed with mommy - back in the cot and so it went on. When you finally fell asleep it was 04:30 and time for mommy to wake up and feed you - What a night. Feeling and looking a little like a zombie today but I dont mind - you are most definately worth it !!
We had a good weekend spent time quality time with the family and went out for a change. We dont normally take you out that often cause I dont want to make people feel uncomfortable with your feeds - but now I just dont care - its not natural for others but its natural for us.
We took you to the mall on Saturday and you just loved every minute of it, you did not want to be in the pram, you wanted to be in our arms just so you could look at everything, you were in your element "talking away" looking at the lights and as daddy says - talking to your angels!!
Everyone kept asking us how old you are and were so suprised when we told them 4 month - they all thought you were only a couple of days old !! - okay you are tiny, but you are a lot bigger than a few months ago.
The morning did take a bit of an odd turn though, two ladies asked us how old you are and why you have a tube in your nose - so i explained to them that you had Trisomy 18 and naturally they asked what it means and I told them all about it - I definately did not expect the reaction I got - the two of them looked at me and started crying - two people I have never met before !! - I rubbed the one ladies arm and said its ok and then I had to walk away - Your sister was very uspet with me, she kept on saying that I must go back and talk to them, but the thing is, how do you comfort someone you dont know and especially when it is something that is so close to your heart. I know one of the ladies is expecting so I am sure millions of thoughts went through her mind, but I am sure her and the baby will be fine and I wish them all the best.
Mommy is a bit on the tired side today - sort of living on maybe 3-4 hours sleep a night - Daddy stayed awake with you the whole of Saturday night so that mommy could sleep but without the both of you in the room, mommy did not sleep much. Right now, if we are lucky we get maybe 3 hours sleep a night. You didnt have such a fantastic night last night, you were very restless and needless to say I jumped up every time you ummed and aahed. Somehow you manage to wiggle yourself under the blankets - maybe you are like daddy - you like to sleep with the blanket over you face. We eventually got you settled before I left for work this morning - you fell asleep straight away - oh how I wished I could snuggle up with you. Back at work and missing you terribly - longing to be home
Wow , what a busy day for you today, driving around with daddy - I am sure you were not too impressed, after all you dont like the car very much.
I missed you this morning, not having done your feed seemed to take away a vital part of my day. I cant wait to get home to you and your sisters. Yay - your sisters arent going to their daddy this weekend, they will be spending it with us, cant wait. Although they are not impressed, they had things planned - teenagers what can we do. At least we get to have family time this weekend, and we are going to meet your little neice tomorrow, so excited
At least when I got home last night you showed your excitement to have me home and that just made my heart swell with so much love. Your sisters are loving every minute that mommy is not there cause they get to change your nappies and entertain you for most of the afternoon and when I get home I think they are quite relieved to hand you over! - Ha they thought having a baby was easy !! I love the fact that they get to do these things with you, they are building memmories that will be with them for ever
It gets harder and harder every day and I feel more guilty every day cause I know that the girls are not getting as much of the attention that they should or want to get - I just need to be with you every second I can !! I know they understand but I am sure they feel it the lack of it right now - I dont know how to divide myself :-(
I found a website today where a father has made an amazing dedication/memmory of his little girl who has passed on. She also had Trisomy 18. I managed to get in contact with him and he is quite happy to help us answer some questions - obviously to how it pertained to their little girl - but maybe some of it can help us and give us support.
On to happy news - Your little niece will be welcomed with loving arms into this world tomorrow. Your uncle is so excited and cant wait to meet his little angel - I cant wait to meet her either. I am not sure of her name yet, they havent told anyone, they want to introduce her when she is born. We will have to take you to meet her in a little while.
I am sitting here and counting the minutes to when I can leave and get home to my family. I love you all so much