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.
Tuesday, May 31, 2011
So back in hospital and still not settling, eventually after a whole lot of pain meds and close to midnight you fell asleep - something your little body so desperately needed - after all you only had basically 4 hours sleep from Thursday morning uptil you fell asleep at midnight on Friday. Your x-rays came back clear and it was such a relief for us, but we still did not know what was wrong. Eventually we thought maybe you have an infection in the Mic-Key - and boy what and infection it was - took almost 5 days of intravenous antibiotics and lots of cream with antibiotics in it to settle the infection - still a little inflamed but so so much better. Hilda came to have a look yesterday and said all was good. Mommy phoned the doctor and he was happy and asked when we wanted to go home ................. ummm let me think ....... TODAY WOULD BE NICE !!!!! So we went home last night and for the first time in almost a week you had a relatively good nights rest, but daddy had to sleep in the lounge cause he is not so well - umm lets reprhase that, he is as sick as a dog !!! But at least we all got a little more sleep last night.
Daddy and I were talking yesterday and decided that we just need to get over ourselves, before we never had an issue when you had one of your spells, we dealt with it and carried on ..... but now cause of last week when we had to rescuscitate you, I think we are just both petrified, this last week in hospital everytime you had a little spell we went screaming through the passage shouting for oxygen and suction - I guess we are also just human and panic a little - its been a hard knock for us, but we will pick ourselves up and carry on !!
Love you lots little Monkey !!
Wednesday, May 25, 2011
Last wednesday I got home from work and you were sleeping. Eventually you woke up and chatted a bit with me and you were a little restless. A while later I said to daddy I am going to put you in bed with me and we are going to sleep for the night. Well needless to say I put you in the bed with me and the minute I closed my eyes you were a niggly and moaning, so I took you and we went and sat in the lounge with daddy a bit. You started crying but it was a different cry to your normal niggly one. I thought you were at the start of a seizure so called daddy cause you normally calm down when he talks to you but no such luck. All of a sudden daddy screamed get the keys and told the girls to go next door, you were totally blue in the face and by the time I got to the door you had stopped breathing, your jaw was clenched and by the time we were out of the drive way and a little down the road I realised you were not going to come round yourself, and that I would have to rescusitate you. While daddy was driving, or should I say flying he was trying to keep mommy calm and telling me to breath into your mouth. I have never done CPR before so I guess was going according to what you see in the movies ...... how typical ....... but whatever I did worked, cause when we got close to the hospital you took a breath and slowly started to come round. I seriously think I need to do a first aid course !!!
Everything is such a blur I just remember getting out the car and running, I dont even know if I closed the door or not, we screamed through the hospital into casualty and screamed at the doctors to help - they were very quick on the mark and treated you with oxygen immediately and stabalised you and called your paediatrician who told them what to do. The doctor admitted you immediately. It took forever to get your file and then eventually when we got upstairs they had to put oxygen tubes in your nose, which you wanted none of, and began crying histerically again almost to the point that you nearly stopped breathing again. I was so nauseus and just had no idea of what to do with myself.
So once again we are in hospital where I know I cant leave you alone for one second, cause the nurses just dont know how to look after you. It was your sister's 16th birthday the following day and I felt terrible having to phone her and wish her a happy birthday, I had to try and hold back the tears when I spoke to her, but didnt do to well at it, so she landed up going to school a little on the sad side :( at least Tia thought of going to my cupboard and looking for her present to give to her, so at least she felt like she got something.
We got all the results back from the tests and everthing was negative, excpet for the fact that you had a viral infection .... what viral infection we have no idea, but again basically put down to a common cold. You have been having physio which you totally love, calms and relaxes you so much.
We saw the ENT on Monday and he told us that you would have to have grommets put in ..... which means anaesthetic again .... so daddy and I decided we had to do whatever it takes to make you comfortable and right now you were not comfortable. The anaethetist said she would do whatever she had to and called in some back up - I think you are the first one to have had THREE anaethetists in theater with you. I think she was seriously worried about you cause after theater she came and checked in on you after having phoned twice. Now thats what I like, a personal touch and not just treating us like we are objects.
All though everything went well, the after effects werent great, you cried and cried and cried and cried some more. Eventually with some pain meds we managed to settle you but you still did not sleep, even after all the crying. Those little eyes were so red and puffy. Last night was a very difficult night, you were acting so strangely, and it went on for hours. You seemed to have had all the strength in the world, fighting me every which way ..... you werent crying .... you were just .. I dont know, I dont know what you were last night. At one point you heart rate was over 200 but came down. Even the nurses/sisters did not know what to do. Eventually they gave you your "sleeping meds" which would normally knock you in ten minutes ... Bwha ha ha - lets try an hour and a half later, but once you were down you slept well. Mommy on the other hand passed out almost immediately after that, I remember telling the nurses to wake me at half past two so I could give you some cerelite, which I remember them waking me up, but only remember giving it to you some time after three. Then they eventually woke me up after seven this morning to my total surprise, it still felt like I had just fed you and climbed back into bed, if thats what you can call it (its more like a theater bed they give you to sleep on) I suppose I should be grateful at least I have something to sleep on. The doctors says if all goes well today hopefully you can come home tomorrow.
This was it, this is what has finally had me feeling broken and helpless and that I couldnt do anything for my baby. Still find myself crying and not being able to accept or deal with it. My mind is so tired, my body is so tired, emotionally, physically everything is tired. I have never been so petrified in my life, it keeps playing over and over in my head, I have to try and stop it.
Loving and adoring you so much my angel and praying with all my heart
Thursday, May 12, 2011
Although you love your bath water to be a bit warmer than luke warm, I think mommy made it a little too warm. You didnt complain or change your breathing pattern when I put you in the bath, you were perfectly fine. By the time I had washed all the soap of the front of your body and leaned you back to get your head in the water, it started - happened the same way every time !!! I think it takes a little while longer for your little brain to process that the water is a bit warm, but then again, you also have SUCH a high pain threshold (just like your daddy I might add) that I had no idea. It felt normal when I put my hand in the water, but obviously it wasn't.
I am feeling so guilt and terrible that I put you through that. That my little boy had to really battle and whats worse is it took a bit longer than normal to come out of it. I felt so helpless and stupid. As hard as I try, I can't stop thinking about it and keep crying. My heart is so sore, not for me but for you. You have been through so much already and through my stupidity I put you through more. Mommy is so so so SORRY my baby. At the moment I feel like I just dont want to bath you ever again, I am so scared it happens again.
You didnt have a bad night last night, but mommy's guilt kept me awake most of the night and because I am really tired today, I am battling to deal with it. Maybe I am just being emotional but I think this is going to be a big one for me to get over. I just dont know how to start the process. I know I cant always do and get everything right or perfect but this is one that has no excuse.
So so sorry my little pumpkin.
Wednesday, May 11, 2011
Tuesday, May 10, 2011
Yay yay yay- you have finally put on some more weight, you are now weighing 6kg and growing out your clothes like a little bean stalk. I put a babygro on you the other night which you wore a few days before and it just didnt fit you any more ..... it seems you have these little spurts and grow like crazy.
The doctor was so suprised yesterday, daddy said when he touched your ear you had an immediate reflex reaction to push his hand away and the doctor couldnt believe it. He looked at you and said "you are not supposed to be doing such things", then after your check up daddy put you in your chair and you were chatting away, also suprising the doctor to no end. He looked at you again and said, "stop it, you are not supposed to be doing these things" .... obviously in a joking and surprised way, and when daddy told him you had just turned one, I think he nearly fell over - so kudus to you my boy, showing everyone up - ha, just love it !!!! and then he told daddy you need a haircut .... GRRRRRRRR (thats mommy growling by the way - I dont want to cut your hair)
When I got home from work, you had a HUGE conversation with me, I think you were telling me everything the doctor said and what he did to you and then almost as if you thought I was not understanding you or listening to you (ok I was busy giving you lots of kisses) you just gave out one big scream as if to say MOM WILL YOU LISTEN TO WHAT I AM SAYING ....... Just too cute for words.
You were a little mizzies last night again and when daddy fed you at 12, some brown stuff came up your tube, but I think it is just from the coughing and loosening things, mmmm, will have to keep an eye on that. The one thing that does concern me though is yesterday when Tan was holding you, she said you brought up a little, which was one big surprise cause with you having had the nissan, you should not be able to vomit, although Tan said it was not a lot, probably a wind, it does worry mommy that the tummy is now coming loose and that we will be back to square one with you not keeping feeds down. Daddy is taking you to the surgeon tomorrow, so lets see what he has to say. One thing I do know is that I as sure as heck aint going to have you put under again to repair it - NOOOOOO WAY !!!!
All in all my little munchkin, you are doing well and showing us all how great your are and how great our father above is.
Loving you more and more each day my little sweet pea
Monday, May 9, 2011
Other than that we, had a wonderful weekend, ok could have been better if the girls were with us, but I suppose they also need to visit their daddy :( So it was mothers day on sunday and my present ........ YOU and the girls of course - yay the best present ever !!! I know this might sound strange to some people but every day with you is like a miracle - especially a special day like mothers day.
You slept relatively ok last night, could have been better - well only once you went down sometime after 11. You were your nomal bubbly self the whole day and slept for a little while in the afternoon - and I thought yay, we get to sleep tonight (you only seem to sleep well at night if you have had a good 2 hour nap in the afternoon). Your feeds went well, no problems, no cramping, no nothing, BUT then at 8 last night you just started screaming and screaming and screaming - we could hear it was a painful cry but had no idea what it was at the time - you didnt settle with me so daddy tried - no such luck there and back to mommy, eventually you settled laying on your tummy with your head on my shoulder, but the minute I tried to move you - well what can we say - some more screaming - granted it was only for an hour but and hour too long. Even though you never get any tears (part of the syndrome) - your litte eyes were swollen and red, as if you had been crying for hours and hours on end. You eventually settled after some ponstan and a porridge feed and slept for a few minutes (and I litterally mean a few minutes) and then after that - I guess it was your time to play. You were having such a ball, screaming at mommy and daddy and getting ever so excited, at times I thought you were going to jump right out of my lap to get to daddy and waiving your arms about. The best thing ..... normally when you hear daddy you will only move your eyes around to try and find him, but last night when mommy was holding you and daddy called you, you almost pushed yourself away from me to turn towards daddy ............ what a precious moment (things most parents take for granted). So now you are beginning to decipher where the sounds come from - all just so awesome and so overwhelming.
In any event, daddy is taking you to the doctor for a check up, mommy thinks you may have had earache last night cause when I fiddled with your one ear you quite literally lifted your shoulder to block any touch to your ear, so we put some sweet almond oil in your ears and covered them up with cotton wool. Seemed to have done the trick, but we just want the doc to have a quick look overall just in case, so we can stop what ever is comming.
Sunday was little Mikayla's birthday as well and her mommy is so proud of her, well I guess her entire family is so proud of her, including us !!! The two of you have exceeded all expectations, stayed alive and held on tight with both hands, done things the doctors said you would never do, and most of all just been the most precious and special little lights or our lives - thank you for being MINE and DADDY's little angel boy. Thank you for changing our lives for the better.
Love you so so much !!!
Wednesday, May 4, 2011
Today is a bit of an emotional day for mommy, the number 18 keeps running in my head, as hard as I try I cant seem to stop it.
The doctors have given you a life expectancy of 18 months, you are now twelve months, and according to them it gives us another 6 months ...... it feels like I have only had you for a couple of weeks .... I NEED more time, I WANT more time, I EXPECT more time, just GIVE me more time pleeeease !!!! The more I love you the harder it gets, and I know that it is the love that I have for you that will help us through, but each day seems to be smacking me in the face so hard and fast I dont know what has hit me. Before I know it the day is over and another day begins, another week and then another month.....
In my heart I know, you are a healthy Trisomy 18 baby and I do believe you will be with us a lot longer than expected, but those thoughts seem to be creeping in, no the seem to be forcing their way in and I need to force them straight back out and I can only do this by holding and cuddling you, so while I am away from you, I look at your picture and they make me smile, fills my heart with so much love and laughter - this at least helps.
Tuesday, May 3, 2011
Mommies boss, Aunty Tersia even sent me home early so I could spend some more time with you - such special people, just love them to bits. Friday night you went down quite easily, but did not sleep that well, you were very niggly - waking almost every hour
Saturday we had a good day, we went for breakfast and did some shopping and you just love the mall, so much to see, but were really pooped by the time we got home. Saturday night mommy and daddy went for dinner with grampa to celebrate his 60th birthday and it really broke my heart to leave you at home, but I just couldnt take a chance and take you out in the cold, and grampa thought it would be good for mommy and daddy to get out a bit. We had a lovely evening, but not without thinking/worrying about you. ( it was a really long three hours or so, not because we didnt enjoy ourselves cause we did, jut the longest I have been away from you - besides work) When we got home you just woke up from a little nap and didnt battle to go down again, but you were very restless again, so hardly any sleep for mommy and daddy.
Sunday was a great day - we had your birthday party - although you were a little niggly in the beginning, eventually mommy figured out that you were just getting too hot. Once we sorted that out, well, no-one could stop you. You were passed round like a little parcel and had a good chat with everyone, even got to cuddle with your uncle and your niece and had no problems when she decided to grab hold of your hair and not let go - was quite cute actually. Eventually you fell asleep but we had to wake you so we could cut your cake and sing to you, although you didnt moan, I dont think you were too impressed about being woken up. Daddy said a few lovely words to the family, to thank them for all their love and support, but then I think it just got a bit too emotional for him when he looked down and saw mommy crying - tears of joy cause you exceeded everyone's expectations, but also tears of sadness cause I dont know how many more days/weeks/years we will have with you, but like daddy said, we have gotten this far, so now onwards. Anyway we got lots of pics and mommy wants to say a very big thank you to aunty Tich and uncle Leon for your cake - it was so gorgeous and sooooo yummy - just wish you could have eaten some. (tears again) and then thanks to all the family for being there, for their love and support and generosity - we love you all.
I think grampa had a bit of an emotional moment, cause daddy asked him to make a song for his video that he is busy with - and we all know grampa with music - just loves it and sings to anyone and everyone - everything and anything is his audience. I think it was just a very proud moment for grampa being asked to do something so meaningful and special - he even gave daddy a hug ~!!!! All in all it was a great day and I think everyone enjoyed it, you more than anything cause you passed out just after 6, but not for long, once again a niggly night and very little sleep. Mommy is a bit of a walking zombie right now because of lack of sleep, but we just cant seem to figure out what is bothering you, cause whatever it is, its only at night. Maybe we will have to take you to the doctor and find out what is what.
Its your sister Toni's birthday today and she is the big 12 - jip one more year to go and she is in her teens and not her tweens !!! She was ever so excited cause this is the first time that she could have a cellphone (her daddy gave her one) - yes mommy is very strict - they are only allowed one from the age of 12. So she has been waiting for this forever !!! - so Happy birthday to mommies big girl - love you lots my angel, I am so glad you get to have your birthday with your brother.