Quiet Christmas and New Year

Hey hey santa's little helper <3 <3 <3

Well Christmas and New year's has come and gone - so quickly. Mommy is back at work and it was really very difficult to leave you this morning, especially since you dont sleep in anymore and were awake and ever so playful by the time I left for the office :-(

We had a quiet Christmas and new year, your sisters were'nt with us so the house was really quiet ..... well I cant say too quiet cause you seem to have become really vocal lately and surely let your opinion on everything be known, even learning to say NO ..... (not that you will ever say it when I want you to) and it is absolutely wonderful

Christmas was a lovely day spent with family, opening prezzies and I could even see the excitement on your face every time we sat with you to open one and this year you even played with your toys. Mommy asked Santa to bring toys that make a noise and things that you can hold onto and boy do you love them. You got a xilophone (however you spell that), a worm that plays music, drums, another toy which when you push the blue button it plays polly put the kettle on and you sway your head from side to side everytime it plays - almost as if you are dancing to the music !!!

You have been doing really well and I would even dare to say that you have put on some weight - will have to weigh you and see if the scale agrees :-) 

Mommy decided to really push you with your feeds and be a little daring and .....well you know just how domesticated mommy is (ha ha ha ) and I am very proud to say that I have been cooking up all these foods myself and liquidising them !!!!! Daddy and I are not really in favour of giving you purity (bottled food), although I do keep stock of it in case we are out and I dont have access to a liquidizer.

I have dropped you down to 3 formula bottles a day and have really pushed the other three with porridge (jungle oats) for breakfast,  lots of vegies and a portion of protein for lunch and supper. So far we have tried the following with you and you seem to be okay with it all:

Gemsquash, Butternut, Potato, Carrots, Spinach, Pasta
Rice, Baby Marrow, Hake (fish) ,Chicken, Peaches
Apples and Plums - quite a selection for you
 
You have been used to having an intake of about 600ml over a 24 hour period and with pushing your feeds you are now having an intake of about 750ml  and we can most definately see the difference, you are like a lilttle energiser bunny, talking away, banging your toys with such force and like never before and now you are even trying so hard to roll onto your tummy and seem to land up with your head face down in the blankets and the rest of your body in some strange kind of twist, but hey, you are not bothered cause you just keep trying and trying and trying.

So overall you are doing really well. Your sisters came home yesterday after being away for three weeks and well they werent very impressed cause you didnt really want much to do with them - they were so offended, but I know its just cause you were tired. We have managed to get you into a really good routine and by the time they were home, you had been playing all day and had ALL this food and were really bushed and ready for a bath and bed !!!

So I told them tomorrow is another day and they can play with you then and I do believe that is all that you have been doing today is playing with your sisters. They missed you so so much and I am happy to report, they missed mommy too (the mean old witch that I am) they even cried and held onto me so tight when they came home ({sigh}) just love you ALL SO SO MUCH.

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 !!!

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

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.

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 !!!!!