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, December 15, 2011

Ever so thankful

Good morning precious angel - I Just have to start by saying mommy loves you so so much.

Well my big boy my thoughts have been wondering a lot lately and especially this last week, I have realised how thankful I am for your doctor who knows you so well. Last week Wednesday you were a little ..... okay very niggly :-)  so daddy took you to the doctor on Thursday morning, we would have gone on Wednesday but it was his day off - I guess even doctors need some time off. When he saw you, he didnt even hesitate to tell daddy to take you straight to the hospital. He said your colour was off and that your body temperature was way cooler than what it should be and that you were probably dehydrated nd needed to be put on oxygen - and that in no uncertain terms scared the hell of out me. I am begining to think that you like the hospital, cause once we were there you settled and went back to your normal self for a little while. Hmmmm little monster - mommies little monster :-). Anyway daddy and I could not quite figure out how you could be dehydrated, you were taking all your feed, you werent vommiting - well you cant vommit and you definately did not have a runny tummy.

Anyway we did all the nececessary blood tests and xrays of which we would only get the results in the morning. And this my baby boy is how well your doctor knows you. By 6 in the evening your tummy started running like crazy, so much so that within 20 minutes I had to change your nappy 6 times !!!!! Fortunately you were already on a drip so you couldnt really dehydrate.

The next morning when the test results came back it showed that you werent dehydrated but your sodium levels had dropped which indicated that you were on your way and that your infection count was at 71 when the normal is between 2 and 8, you were also in the begining stages of bronchial pnuemonia - Scary how well Dr Roelofse knows you. So yes big boy I am ever so grateful that we have a doctor that does all he can for you to keep you as healthy as can be and as comfortable as can be. I remember one day daddy had said to him that he just wanted to thank him for all that he does for us and for you, cause we know a lot of doctors dont like to treat T18 babies and he responded that one day he would have to stand in front of GOD and explain to him why he didnt or did. What a humbling experience.

Daddy also had the pleasure of Dr Roelofse having a student doctor with him on Tuesday and he showed her all of what is wrong with you - well in my mind there really isnt anything wrong with you, God made you as perfect as you can be, and perfect in our eyes  ......   just not perfect in others eyes. But we cant blame them, we are all human and if you are not in a position that our family is in, nothing will ever be perfect. Okay I am getting away from what I actually wanted to say - Dr Roelofse told the student doctor that he and all the other doctors had given you a zero % chance of survival and look at you know, you have proved everyone wrong..... and why ..... all because of the love of your parents. NOW THAT MADE MOMMY AND DADDY EVER SO PROUD, but we cant take all the credit cause your sisters and ouma and oupa and granny and grampa, aunty Tich, uncles Kev, Ced and Mathew and we cannot forget aunty Teressa, Tersia and Bren, and so many others, they all just love you so so much.

Glad you are better baby boy and that it was a quick hospital stay.

Love you so so much pumpkin pie !!!

Tuesday, December 6, 2011

The sound of a miracle

Morning mommies precious little pumpkin.

I got home from work last night and you were a little on the niggly side, neither daddy nor the girls could get you settled. So mommy decided to give a bath and try put you to sleep - you battled a little but once you were out ...... well you were out. You slept really well last night and while you were sleeping I lay in bed listening to your breathing, it was SO MUCH deeper and each breath seemed somewhat longer than normal, but it didnt concern me - because somehow in my heart I knew you were fine. Even though your breathing pattern was different you didnt have any difficulty breathing and you seemed more comfortable, as if your lungs were getting the much needed air that they want.

I must have layed there for an hour or two listening to your breathing before I fell asleep, but in those one or two hours, although I have always known, it really really dawned on me as to what a little miracle you are. How I have always prayed for God's richest blessings and I realised last night that he HAS given me his richest blessings, YOU, YOUR SISTERS AND DADDY !!! - what an awesome blessing to have and what a blessing it is to be able to listen to your breathing - the sound of a miracle. How many people get to hear the sound of a miracle every single day - not many !!

Love you baby boy

Wednesday, November 30, 2011

A .... MAZING !!!!

Morning precious angel.

Yesterday was your 19 month birthday - who would of thought, I mean after all the doctors only gave us a maximum of 18 months with you :-(   but here you are, happy, healthy (well as healthy as a trisomy baby can be) and full of life !! So HAPPY HAPPY HAPPY big boy - we love you loads !!!

We started you on solids - yes I know most people think what the heck, you should have been on solids long ago - and I agree, but with all the reflux and constipation problems it has caused a BIG problem and you just couldnt cope, so we had to wait until YOU decided your little body is ready. So now we put a spoon of porridge in each bottle - dont want to over do it and give you too much for now - and on Sunday we started giving you gem squash - mixed with butter (not so healthy for us, but a good one for you cause it will help you put on the weight you so desperately need) - all this liquidised and put through the tube and so far so good,  even your tummy decided to work on its own yesterday - poor daddy, a really big stinky one at that -I know how much he loves those :-). So maybe next week we can try some pumpkin or potato, will have to see.

We have also started trying to let you taste a little more by mouth and you seem to be a bit more patient. Normally its just a complete no go when we put something in your mouth but you seem to have developed a taste for RUM & RAISIN ICE-CREAM - of all things !!!!! but hey if you going to eat it who's complaining - definately not mommy. We have also tried candy floss, initially you dont like the fluffiness of it but as soon as it melts, well you dont complain either. Yoghurt - there you seem to be rather fussy, you dont really mind the strawberry flavour but dont really like it either - hard to explain and the berry, well lets no even go there. Ouma gave you some and it took daddy half an hour to settle you - you were not impressed. Zoo biscuits are also another favourite, you like to chomp on those, even though you dont have any teeth yet - maybe cause your gums are itching ...... (sigh) when are those toothies going to come.

Ouma has been very patient as well and getting you to drink about 20ml of water by mouth through out the day - not with a bottle though - we have to use a dropper and drip it into your mouth, but who cares at least it keeps your little mouth moist and helps with the thirst. That is one of the hardest things cause I never know if you are thirsty or not. Do you get thirsty even though your water and juice and feeds go down the tube?

You also seem to be sleeping really well lately - no more late nights for mommy :-) but it is also sad, cause now I dont really get to spend much time with you during the week. When I get home from work, its a quick bath, a feed and by the end of that you are ready for bed :-( and its not a bad thing, I just miss the bonding time we had before - even with all the frustration of no sleep, but what is best for you is what goes in our house !! So all in all lots of rest and a much happier baby - YAY !!!

We decided to take your mickey out and clean it on Monday and as usual mommy was a complete nervous wreck - you would think I am used to it by now. Your sisters were extremely nervous cause this was the first time that they were going to see clean it and they were expecting see this HUGE hole in your tummy - and they were quite pleasently surprised that it is a tiny hole and they COULDNT see the inside of your tummy - panic mechanics - look who is talking ... ha ha ha. Anyway my hands were shaking while I was cleaning your stoma and daddy was cleaning the mickey, but you just thought this was the funniest thing, maybe it was a bit ticklish - I dont know - but you were really having a good giggle - at least it all went well and we got it back in, no problem. Not that we ever have a problem, but I guess mommy just stresses that there is always a chance that we cant get it in and we were told that we have to do it within 10 minutes otherwise your stoma closes !!!

Saturday was a very sad day but also a very exciting day. Sad because our heavenly father came to fetch little Mia - another little T18 baby in Cape Town. Mia only lived for a few months but in her few months here she was a complete blessing to her mommy and daddy and to so many others. RIP in little Mia. I know you are dancing and rejoicing with all our other little T18 Angels.

Mommy has also  been thinking about aunty Taryn for a while now - I really must phone her. I know she misses little Miks so much. So aunty Tat, thinking of you  - always do - and sending you lots of love and hugs !!!

Saturday was also an exciting day, we got to meet aunty Gail. She has been following our blog for a while and we have been chatting, but never met. So saturday we met and wow what an awesome lady. Great to have met you Gail.

I guess that is all for now my precious little monkey. Mommy loves you lots and lots.

Wednesday, November 23, 2011

What most people take for granted, I cherish with all my heart

Hello mommy's precious little boy. Last night you fell asleep on my lap - like you normally do, but this time you grabbed my fingers and held on tight. It brought tears to my eyes, not because I didnt want you to, but because just that little moment which most people would take for granted, as a normal every day action, but for me, it is a moment I will cherish forever and all eternity which will remain imprinted within me, because I know that tomorrow or the day after, maybe in a week or two or in a year or a few, I may never be able to hold your hand or feel your soft baby skin against mine or marvel at every little thing that you do. Thank you precious baby boy, for reminding me again - (not that I have ever forgotten) - just how precious and special every moment is with you.

Loving you more and more each day.

Thursday, November 17, 2011

Tia's message for you

Morning my precious pumkin. Last night your sister Tia brought her journal to me, she had written something on your behalf and asked me to post it. Mommy had to fight back the tears like never before. This is what she wrote, pretty much hitting the nail on the head:

Hi I am a T18 baby, considered not to live longer than 18 months. I am a baby who was born with holes in my heart and something wrong with my lungs. I am a baby that is very strong. I am a baby with almost no immune system. I have no pallet in my mouth - I have a cleft pallet and will probably never talk. My feet are clubbed and my hands are a little bit bent. I have a curved spine and my hips are out of place and will most likely never be able to walk. I never know when I am going to say goodbye to my mommy and daddy and the rest of my family but I am sure to enjoy every moment I have with them. I am now nearly 19 months old and the hole in my heart has closed. I still have a valve that doesnt close that causes lesions in my heart. I am almost on my way to crawling - well in my terms anway - and I cant wait !! My daddy tells me everyday what a big boy I am and how strong I am getting and I think so too. My hands, arms and legs are always busy, i think I may even be getting some muscles :)

Well now you know me, I am a T18 baby and I have a story to be told.

I AM COMPATIBLE WITH LIFE

I am so so proud of your sister. Out of all of them she is the one that has battled the most emotionally - or at least shown it the most. They all love you dearly.

You have been doing really well the past few weeks, only really battling with the heat terribly, but thank you to some very special angels, we are able to buy an airconditioner for you so that life can be a little more comfortable and bearable.

We have started taking evening walks with you and boy do you love it. No-one can tell me you dont understand, we notice that you do. Lets put it this way - you normally spend your days in just a t-shirt or only your nappy because it is so hot and you cannot regulate your body temperature, but just before we go for our walk just to be on the cautious side I put some pants on you.  You just know we are going on a walk and you get so excited, you arms and legs just get going and you become so verbal - its just too precious. Needless to say your sisters keep fighting about who is going to push you :)

So all in all, even though for the last three nights you have been a little restless, you are doing really well.

Love you sweet pea

Tuesday, November 1, 2011

and .............................. wheeeeeeeeeew breath out

Hello mommy's precious little bumkins. It all just seems so ..... I dont know actually, but all I can say is wheeeeeew breath out .....

You see my little angel when I was pregnant with you, the doctors told us that you would never make it to full term and most likely be stillborn or that I would miscarry - you made it full term. The night you were born they told us that you would most likely live for 1 hour and no longer - you lived longer. They then gave us two days - still you lived longer. Then two weeks - you proved them wrong. Then 18 months maximum - and Woooooooohoooooo you are now 18 months and 3 days old. Yet again my sweet pea - you have shown your will to live, your will to love and your will to learn - you have surpassed ALL doctors expectations - you have even put smiles on their faces and made them think again and I guess you could say, you have allowed them to believe. You continue to put so much meaning into our lives and continue to teach us so much - things that we would otherwise never have learnt .... and for that I will be eternally grateful.

Although we know our time with you is limited and as hard we try not to, it is never far from our minds, but you have taught me to have faith and to cherish what is now - so although I do most definately look to the future at times, I will always cherish and live for now, live in the moment.

On another note - you are doing awesome, in fact I would go as far as saying you have never been better. You have soooooo much energy, talk the hind legs off a donkey, squeel when you want to, you have even learnt to say no to your sisters when they irritate you - with a real uhuuuuuuhhhhh and when they irritate you some more you kind screetch it out - just love it. You also play with three of your toys on the play gym and not only the one and it always amazes me cause you never seem to look at them, but you seem know exatly where they are so that you can it them with your rattle - or should I say bash them :-)



Tan has taught you to play roll over - she rolls you over a few times and then sings to you and you have picked it up rather quickly. Although you dont roll over by yourself, you try - and you get as far as rolling half way onto your tummy and squishing your face in the blankets, but cant seem to get your arm out from underneath you - so thats your next learning curb. It is just so delightful to see you this way, always smiling and laughing and even getting cheecky - but thats okay you are allowed to - shhhhhh dont tell your sisters that :-) they might think they can start being cheecky - ha who am I kidding, they are already cheecky !!!!

Love you pumkin pie !!!!!

Tuesday, October 25, 2011

A hell of a week

Aaah precious precious nunu – mommy loves you so so much.

The last week has been  .... lets just say not pleasant at all. On Sunday we were getting you ready for hospital and decided to take some family pics – not that you were too impressed after about the 50th photo. I guess daddy and I were on edge. Not really knowing what to expect,  so  - I guess you would say just for in case – sounds so negative but we knew we had to.
When we got to the hospital you were in such a playful mood and the nurses were so so happy to see you, especially Faith and Julia – they were the nurses that looked after you last time. They never really expected to see you again. Even Sister Helena who doesnt work there anymore found out you were there and came to say hello during the week– she was so excited to see you  !!!   You had a good day on Sunday – although you never slept well at all – but you were relaxed and happy and that was all that mattered.
Monday morning came and well .... my little bubble was just burst completely. The aneathetist came to see you and explained a few things to mommy. It was hard ......  it was very hard to listen. He had warned us that if the surgeon had to open you up completely  - and there was a good chance that they would have to, they would have to intubate you .... silence .... tears .................... NO NO NO NO NO NOOOOOOOOOOOOOOOOOOO ............... that is NOT what we want. I told him this and he politely, but quite frankly told me that he would do what ever he has to and if you need to be intubated he will. Legally he is not allowed to NOT intubate you if you need it, but also as a person he said he could never NOT if you have to.  I must say it is quite a refreshing change from what I hear from most mommies whose doctors are just not prepared to do anything really. I guess .......no, I know we are very blessed with our doctors.
In any event our nerves were shot. Your last feed was at 5am and only 80ml at that,  and I just kept praying to GOD  for you not to get hungry and miserable – he answered my prayers. Not once did you cry for food and you only went into theater at nearly 11am and you most definately were not miserable.
The time came and mommy and daddy had to walk that dreaded path with you again. Needless to say I was crying before we even got to the theater – but you – you just stayed happy and babbled away. Of course mommy and daddy nearly fell over backwards when they told us – see you in three hours !!!!! Now I was having second thoughts – will your little heart survive it for soooo long?
The wait began and it felt like forever and a life time. Each second felt like a year – I think mommy and daddy aged about 40 years in those three hours. It felt like i had been sealed in a little box with no way to move or breath and that there was no way I would even dare to try. My heart felt like it stood still for those three hours and didnt beat once.
The suregon eventually came out with thumbs up sign – I finally exhaled – I could breath at last, but there was one more hurdle. Would you breath on your own. I think the time that you were in recovery was actually more nerve wracking than when you were in theatre. Another life time of waiting and then finally the aneathetist came out and said all was well. He battled a bit with the theatre intubation cause of your cleft and small jaw and your tiny features but he got it right and most importantly – you my angel -  stayed true to yourself and showed us all again what a strong and amazing little boy you are – you were breathing on your own – obviously with a little oxygen – but no intubation – my heart raced in leaps and bounds – no words could ever ever express our relief.
You cried or should I say screamed for a while until the pain meds kicked in and you finally fell asleep.  And as per normal we had to go over and above the normal pain meds for anything to work. You had a good night and surpisingly only spent ONE night in neonates – I think this was really the easiest night of all for you. Your little body picked up an infection from the aneasthetic and a fever set in – many sleepless nights and lots of crying and frustration from us both. Eventually on Thursday night we couldnt anymore, we gave you some cholorol so you could sleep. Now this is something that you have had many many times before, but this time it affected you breathing. You kept inhaling but not exhaling until there was no air left in your lungs and then .................. nothing, you just stopped – I kept shaking you for your little brain to register that you needed to exhale. We had to keep doing this till the choloral wore off  - after that your beathing was normal but I was just way too scared to sleep. Finally on Saturday your fever broke – you were so exhausted my pumpkin, you basically slept for two days solid – much needed sleep.
All better now and finally home. Thank you sweet angel for coming back to mommy and daddy. Thank you for loving us the way you do. Thank you for being the miracle that you are.
Love you always

Monday, October 24, 2011

Some pics

Here are some pics we took with Lior on the Sunday before his operation.

Mommy and Lior

Daddy and Lior

Lior and Big Sister Tannyth

Lior and big sister Diana-Lee

Lior and big sister Tia

Lior and big sister Brenda-Leigh

Lior and big sister Toni

Thursday, October 13, 2011

Surgery

Morning my precious little bug. Thankfully that last two days have been good and you have been feeling much better, although from last week Tuesday up till yesterday has been a complete nightmare. We were home from your last hospital visit for two days and in those two days all you did was cry and cry. Last Thursday we decided enough was enough and took you back to the doctor and well can you believe it ....... straight back to hospital. So your lungs were good when we left the hospital and litterally within two days they were full again and this time you were battling with the pain and discomfort. This visit has made us realise that your pneumonia is actually aspiration pneumonia .... yes i know took us long enough to figure it out :-)

You never slept for almost 4 days and we were totally exhausted. All you did was cry and moan and it broke my heart cause I just felt so hopeless and kept on wishing that all your pain would be transferred to me so that you would feel comfortable. We had you on three diffferent pain meds every four hours. This seemed to help somewhat but not for long, maybe an hour or so and then you would start with the discomfort again. On Friday night I finally discovered that you had an ear infection. All this goo seemed to be pouring out your ears. Finally we had some direction we knew what was really bothering you. We saw the ENT and fortunately you grommets are still in so that the puss can drain, and I must say since it has been draining you have been much better - a little mizzy but much better. By Saturday you were so tired it was time to play catch up - you feel asleep at 15:30 and only woke up at almost 09:00 on Sunday morning !!! - nearly 17 hours of solid sleep - something your body - and mommies for that matter - were craving.

We are home now, but only for a couple of days - on Sunday we go back to hospital so that you can have your surgery on Monday. Now, I was completely fine with this until yesterday after daddy took you to see the surgeon. Oh yes it is a relatively simple procedure - BUT and a BIG BUT, because it is the second time that you will be having the nissen done, this may cause complications. It will be done laprascopically but if there are complications he will have to open up completely - I guess it is good that he is taking precaution - ordering blood for you just in case. Now my angel although I know in my heart and I pray that all will be well - this scares the living daylights out of me. Once again we are in a catch 22 - if we dont do the nissen you keep going to hospital almost every second week for pneumonia or we take a chance and do the operation and hope that is stays this time and we sort the problem out.

Aaah my little sweetpea - you have been through so much in the last three months and it kills me to know that you still have to go through more. So now its to make the most of our time at home till Sunday. But my heart is happy today cause I know you are feeling better and slowyly looking and acting like our precious happy little shining light.

Shine my little star - let your light shine every so bright.

Love you

Wednesday, October 5, 2011

Been a while

Hiya my precious little pumpkin. It has been a little while since mommy wrote to you, I have tried so many times but every time find myself so tearful and emotional I just cant seem to write. So lets try again.
The last two and a half months have been emotional, tiring and full of fear. A few weeks back we came so close to losing you and being completely besides ourselves. We have had a few moments where you have had serious apena attacks, but nothing to what it was and what we felt when you were so so sick, when we were convinced it was time to say goodbye.  I think back to that day and my eyes fill with tears and they  just flow. I am so grateful big boy, I am so grateful that you are still with us, that God has given us more time.

The past few months have been really scary, so many beautiful T18 babies have recieved their angel wings and gone home to our Heavenly Father. It scares me tremendously, you are now 17 months and the 18 month mark is coming up, a day, a number,  that stays imprinted in my head, runs circles around my head.

You were in hospital for the last week - AGAIN with Pnuemonia - something we never seem to get a way from, and it happens so quickly. The week before I took you to the doctor and he said your chest was relatively clear, and you were doing well. You had a great week, laughing playing and just being happy old Lior - our precious happy Lior. Thursday you were perfect and then by 4am on Friday morning you were coughing. Daddy and I decided not to wait and take yous straight back to the doctor to catch what ever it was - we never thought it would be hospital - although you were a little mizzy you werent that bad, and then we were told you would be going to hospital again. My heart just sank - how much more is God going to put us through, how much more is my precious baby boy going to be able to take. By the time we left the doctors office and got you to the hospital and had your drip put in - really within a space of 2 hours you digressed so badly. It took empaped, lotum and veleron and two hours of cuddles from mommy to settle you and bring your temperature down. It broke mommies heart that I couldnt make you better.  Although it took three days to break your temperature, you responded to the antibiotics and with some physio your chest cleared nicely, so at least it was - in our terms a "quick" stay at the hospital.

We came home yesterday and well you just werent yourself. You were crying and coughing the whole day :(. Doc says we just need to neb and wait it out - not much else we can do. The nebs are better than cough mixture.

I jsut need to say that my heart swelled with pride in the hospital. You were having a quiet moment and I took the opportunity to keep repeating "mama" to you. You concentrated so hard, looking at mommies lips. I lowered my voice and in a quiet and small voice I kept repeating it, after a little while of you staring at mommy you started making quiet yet small little sounds - as if you were trying to mimic me. I know you most likely wont ever be able to say mama, but my angel all that matters is you tried. In your own little way you tried and THAT is what makes mommy so proud - your determination.

So my angel face, all in all you are doing well, and you always seem to come back stronger.

Remember mommy loves you will all my might, and soul. And just as every single cell in your body has the extra 18th chromosome, every single cell in my body loves you with all intensity.

Love you sweet pea !!

Tuesday, September 13, 2011

Letter to Miks

Precious precious baby girl, a daughter that any parent would be proud of. You have brought so much sunshine and love to so many people, taught them the meaning of unconditional love, taught them how to cope in the most difficult of times and still to remain positive and upbeat and smile throughout. You brought so much joy to your family especially your mommy and daddy, who were never, and will never be embarrassed about your diagnosis - they shared and continue to share you with the world, a world that is so much better for having "known" you, a world that has learnt so much from such a little soul, a world that is yet to learn more.

Although I never had the privilege of meeting you, I know only what mommy has told me and what mommy has shown me and I cant stop thinking about you and your big blue eyes. I sit here and imagine or should I rather say, see how all the other angels will "fall under your spell" - just as we did - how your big bright blue eyes and coy little smile will draw everyone in and they will love you just as the outside world has loved you and I am comforted to know that when the time comes, you will be there with open arms to welcome our little Lior.

Your little soul is at peace sweet baby - continue to shine your big bright light on mommy and daddy, let them know of your presence, let them bask in your warmth, love and protection, because I know, they carry you under their wings. Guide your siblings, cause you are a part of them, and they a part of you. Let them feel your amazing spirit.

Help mommy and daddy to shed their tears and laugh out loud with their memory of you and your special moments - cause special you definitely are.

Use your angel wings baby girl and fly high.

Love always

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.

IF ITS GOD'S WILL, SHINE MY LITTLE STAR - SHINE EVER SO BRIGHT !!!!!

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 !!

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

Wednesday, June 29, 2011

14 months today !!!!

Morning my precious little baby boo, HAPPY 14 month birthday !!!!!! - WOW how time flies - and you are doing so well. We have our up and down days but they have definately been more up than down the last few weeks. Although on Sunday night or should I say morning you decided you only wanted to go to sleep at around 4 in the morning and mommy had to be up for work by half past 5 - so mommy and daddy are still trying to play catch up, feel a bit drained but nothing that some sleep wouldnt cure - if we could get some ((sigh))

So daddy has been doing a lot of physio with you and needless to say you just love every minute of it. Normally your little arms and hands are up in the air and in your face - well at least you are trying to get your little fingers in your mouth, but the minute daddy puts you on your pillow, you would swear you have just hit the beach and ready for a day of relaxation. Your little arms automatically go to your side, completey spread out and relaxed and ready and waiting. The cutest thing ever is the little grunting noises you make - imitating daddy - when your legs are going up and down. This really seems to be helping for you because you are more alert and stand a lot longer than you normally do and hold you head up for long periods of time and even try to bounce while we are holding you, and the strangest thing of all it actually gets your tummy going - who would of thought ((hmmmmm)).

We have still been battling with your feeds a little, some days you really wont keep most of your feeds down and have so much Pleghm but its usually for one day and then you are fine for a while. We tried decreasing your feeds but mommy worried that you werent getting the right amount of food for the day so we upped it again to your normal and now feed you half and wait about twenty minutes and feed you the rest. This seems to be working for now, just hope it stays that way.

I am glad to be able to say that little Mikayla is doing much better and is home from the hospital - although she really gave her mommy and daddy a very big scare - but like her mommy says, she has been writing her own little story and continues to do so - so so proud of you little Miks, keep it up precious little girl.

I guess we all just have to make it through the winter without any more incidents and then I think we will relax a little more, not be on edge so much wondering if every little cough you have is telling us you are sick - instead of maybe just clearing your throat - yes I know ...... paranoid I am, but the thing is with you it happens so quickly and before we know it you are really very sick, but touch wood my little angel and thank you heavenly father that our little boy has been well and pray that he continues to be so. 

We have continued giving you the Neulin (Stimulates breathing) which the doctor prescribed when you stopped breathing and it really seems to be working well, although sometimes you still lose breath when you are irritated or trying to pass a stool, at least you dont go as blue and dont pass out and then go limp, so I do honestly believe that it does make a difference. So definately going to be keeping you on that and doc has suggested it be a chronic mediation together with your seizure meds - oh that also seems to be working cause you havent really had one of those in a while - please lets keep it that way.

Anyway my little munchkin - mommy just wanted to you know that I love you lots and think of you every second of the day !!

Monday, June 20, 2011

Sending lots of Love, Hugs and Prayers

Morning sweet pea. You have had a really good weekend and been your normal playful self, so not much to really update on, but mommy wants to take this time and send all our love and hugs and prayers to Aunty Taryn. Little Mikayla is in hospital and her mommy says she is not doing well at the moment, her lung has collapsed and her little heart is taking strain. So I want Miks and her mommy to know that they are in our thoughts every second of the day, and that we know little Mikayla is strong and such a spirited little fighter and that she will pull through this and prove every body wrong like she does all the time !!!

Get well soon little Miks, and lots of love and ((hugs)) to you and your mommy !!!!!!

Friday, June 17, 2011

All sorts

Morning my baby angel - so this last week hasnt been too bad, although we have had a couple of sleepless nights and mommy at times just not being able to keep her eyes open. Literally falling asleep standing up !!!!

You seem to be a little on the pleghmy side again, thank goodness I have some pulmicort at home - been nebbing you with that twice a day and giving you physio and you seem to be a litte "clearer" this morning. Yesterday was particullarly iffy, you were very snotty and mizzy most of the day and with all the heaving through out the day, eventually at about 4 you managed to get out a huge amount of phlegm and were promptly better after that - having your normal cuddle with daddy and for a change getting excited with mommy !!! My heart did somersaults - for the first time I could visibly see your excitement, so much so that you very nearly threw yourslef right out of daddy's arms - the best thing ever !!!!!!

We decided to give you some sleep meds last night, cause you had a bit of an iffy day and decided that you, as well as us, were in much need of some sleep - and we had to change your freaking formula again. We are just at our wits end cause every formula you are on seems fine for the first few weeks and then ......... well ja. So the Similac has really started making you cramp but really badly - and we need to keep you comfortable - so going back to the lactose fee and daddy said that this morning you had no cramping - what a relief. Hopefully we dont have to change it again - but if we do Daddy and I though we should try the Novalc AC - especially for cramping and flatulance - okay I suppose everyone is wondering why we didnt use that ages ago - umm we only discovered that yesterday !!!!

So sleeping now - nice and peaceful - wish I could be home with you, daddy and the girls !!!

Monday, June 6, 2011

Peaceful

Well hello my precious little angel !!! Since we have been home from the hospital you have been so peaceful and content - except for feed times ..... your appetite seems to have doubled, so no longer am I feeding you every four hours, its now almost every two and half to three hours and when you want your food .... you want your food !!! You wont stop crying/screaming/moaning and when you cry/scream or moan I cant get your feed down .... what to do !!! I cant feed you earlier than the time to try and prevent you crying cause then I am scared that I will over feed you and you will get sick. I cant give you more than 130ml per feed for the time being cause once we get to about 125ml you already start moaning as if to tell me your tummy is full and thats enough. Well I guess I cant complain, your appetite is up and you are putting on weight - will have to weigh you on Saturday, I am curious to see how much weight you have put on in the last week. The Mic-key is looking better and you have just been your normal bubbly self and ever so talkative. As for sleeping, well I guess I cant really complain on that one, except for last night you were a little niggly but otherwise all good. I just never know how many blakets to put on you cause it is flippen freazing and you sweat like crazy, but on the up side, you havent really been trying to kick the blankets off, so you must be comfortable.

Another achievement YAY - when mommy or anyone for that matter, says YES YES YES you nod your head. At first I thought it was just coincidence but its not cause as we say it we nod our heads and you have learnt to do the same !!!!! The problem comes in when we try and stop you cause once you start - you can carry on for hours :)

We are putting you in your bumbo chair a little more and you seem to be holding your head up a lot longer, although we still have to put a little blanky in to prop you up a little - you have definately got stronger. When I look at you in the bumbo, I actually realise how little you are, a child of your age would never even be able to fit into one and here we have room to prop you up with a blanky and your little head just reaches over the edge :-) - so so small and so so precious !!!

So, another birthday this week, Tia will be turning 14 !!! - wow how time flies..... not fast enough for Tia (ha ha ha ha) but definately too fast for mommy.

Daddy is finally getting better .... ummm just ...... but he is getting there. It has been so frustrating for you both cause daddy so wants to hold you and you so want daddy to hold you, but we just cant take the chance :-(

Its been awesome having you health again my little angel and mommy prays that it will stay this way for ever more.

Love you little munchkin

Tuesday, May 31, 2011

Back home .....

Wow what a week my little munchkin ..... Last Thursday you came home from the hospital all chipper and talkative - in the best mood ever, but thinking back now I think you were actually shouting as us and trying to tell us something. That evening you really didnt want to sleep, we battled and battled and battled, daddy eventually got you down at 03:00 am and by half past 6 you were awake AGAIN !! - I just dont know how your little body does it. A little while later daddy phoned me and told me you were just crying and crying and crying and that the Mic Key was leaking and that you had been vomitting a bit - which you shouldnt be able to do with having had the nissan, your head felt like it was on fire and the rest of your body was ice cold, now normally your head always feels a little hot and your hands and feet are like ice blocks, so it didnt really send off any alarm bells, but daddy decided to take you to the doctor anyway, to my dismay and horror daddy phoned and said we would have to go back to hospital cause it is probably pnuemonia. Mommy left work straight away and rushed home (think I got a few speeding fines on the way) ..... never have I seen my precious little boy look the way you did .... not even after all your operations. Daddy and I took you to the hospital and we were both very emotional - or lets say mommy was emotional and crying and daddy once again held back to keep strong for mommy ..... our hearts were breaking cause we just did not know what to do. I was stressed beyond measures and couldnt possibly imaging how daddy was feelinng cause he had been with you the whole day in the state you were in - we were and felt so helpless. No position that we put you in eased your pain, your sats were low and your heart rate was over 200 !!!!! Needless to say this scared the living daylights out of mommy and daddy - I was so scared that your little heart was going to give in any second. At times I thought God please please dont let my little boy suffer - if you have to ..... take him, but whatever you do, dont let him be in pain and suffer.

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

Feeling broken

Mmm my precious baby, where does mommy start ...... This last week has been simply horrendous and probably taken 20 years off my life. When no one is with us I find myself crying and some mornings have woken up with tears on my face.  I am so tired and feel like I havent slept in over a week and as though I have been steam rolled (granted I have had very little sleep but it really feels like I havent had any)

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

So sorry my precious Angel

Hello my precious little boy. Today is a really tough day for mommy, you had another seizure when I was bathing you last night, the third one in a space of three weeks, and each time it has been when I have had you in the bath and I figured out last night that either it is really a very bad coincidence or its mommy's fault and I am definately leaning very strongly towards it being mommy's fault.

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

How gorgeous is that ....

Hey little sweet pea - looky looky .... see what aunty Janine did to your pics. They are just so stunning. Thanks my friend - just love them





Tuesday, May 10, 2011

Surprised ???

Hey little nunu - so daddy took you to the doctor yesterday and ....... mommy was right. You have a middle ear infection, no wonder you have been mizzies for a couple of days. Daddy got your meds and we are hoping it will clear quickly. The best is, your chest is clear - I was so worried about that, with the change of season and it now getting really cold and with you having had a little cough, whew what a relief.

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

Giving thanks

Morning little munchkin - ok so we are both a little on the tired side, not been sleeping so great, but all par for the course. You had another seizure on Friday night. It was so strange though I was taking your clothes off and getting you ready for a bath and once I put you in the water you still seemed okay and then all of a sudden you pushed your arms in front of you and they went stiff (thinking back now obviously it was involuntary) and then your legs went stiff and you arched your back - at the time I thought you were just trying to get your head in the water, cause thats what you love to do, you love the feel of your head floating in the warm water - BOY WAS I WRONG - it took a little while before I realised your breathing was laboured - I guess cause mommy was making so much noise while I was singing to you (I need to be a little more careful and observant, I could kick myself that I didnt realise sooner), so I eventually realised your were having a seizure and quickly took you out the bath and wrapped you in your towel and by that time you were now screaching and if I tried to straigthen you out I probably would have snapped you in half - thats how stiff you went. I screamed for daddy and he put you in the "rescue poistion" and some how daddy's voice seemed to calm you down and you came out of it relatively quickly. I think you feel mommies anxiousness and tend not to settle as quickly with me. You were pooped after that but ok.

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

The number 18

Birthday celebrations over - for the next week at least and then they start all over again.  You had a good night last night my little pumpkin, mommy only had to get up twice - not used to so much sleep :).

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

Weekend Celebration

Wow what a busy weekend, parties parties parties. Friday was a very special day - it was your 1st Birthday !!!!! Aunty Teressa decided to have a little get together for you at mommies work, and it was really special. Mommy works with such fantastic people, who are always so supportive and caring.
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.