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.

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 !!