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.

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

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 !!!!!

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 50^th 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

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

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 !!

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