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
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1 comment:

  1. RebekahNovember 4, 2011 at 1:41 AM

    What an awful, awful time. So very glad he's doing better and at home. He's such a little miracle and I'm glad he's sticking it out.

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