Saturday, May 23, 2009

Almost 6 months down the track

Wow - I cant believe that Sarah is soon to be 6 months Actual age.

What a 6 months it has been and how far we have come from that day back in November.

That day changed my life, it changed everything I stood for, it allowed me to grow, it allowed Michael to grow.

NICU can be the most daunting place on earth, it can put so much pressure on your outside life and I think for alot of people it can either make you or break you and you deal with the effects for months after you come home.

I kinda like to think of it as a holiday, probably not the best example and there probably is a better word but its 430am and its the best my brain can do!

When I fell pregnant it was like we were taking a holiday to Paris! paris is great, its the city of love, its prestine, its where we were going.

So I boarded the plane and our vacation was to begin.

Only we touched day well before it was meant to and we heard "Welcome to Thailand"

Thailand I say, we are meant to be in Paris and we are not meant to be there yet.

So we accept that we are on a detour and we embrace Thailand, we start to explore out new destination, but I still dont want to be here, I want to go home and wait until we are meant to leave for Paris.

As time goes by we get use to Thailand, we start seeing things differently, ok so its not what we had planned but we have to do the best with what we have.

4 months later and we love Thailand, we cant even imagine wanting Paris anymore, this place has grown on us, it has its challanges but when we face them head on together they dont seem so bad after all. Thailand has become such a special place for us and a place we will never forget.

But its time to go home, we have learnt so much here, and we have met so many people from all walks of life and they have taught us some very precious lessons.

So the burning question is " How is Sarah doing"

The answer is "better than expected" she continues to amaze us day in and day out. She smiles all the time now, even smiles at strangers and not just us, she would look and play with her hands all day long! Tonight I thought she was going to chew her arm off!!!

We have had a few follow-up appointments with Neonates this week, overall they are extremely happy with her, she has her issues but on the grand scheme of things she has far surpassed there expectations. Her Dr said on Wednesday that it really makes his job worthwhile when babies such as Sarah beat the odds, he doesnt actually take on alot of longterm patients anymore, much prefers the "fatfarm babies" that are in and out in a few weeks, but I am glad he took Sarah on because he kept on digging until he found an answer, he got all the right people involved in her care and his quick diagnosis and treatment quite likely is what enabled her to beat the odds.

What is the longterm outcome for Sarah?

Unfortunately we have no idea, Sarah could slip away at anytime, she could also go on to live a happy, healthy long life. What is known is currently the oldest survivor is 6 years old, that is the known survivor there could well be others out there that are not documented. Pancreatic Agenesis is so rare that there in no name for the Syndrome, it depends what you read on the net as well, alot of sites say that the condition is "incompatible with life" well there 3 out there proving them wrong!

One of the big concerns with this condition is Liver Damage, Sarah is showing signs that slowly the condition of her liver is getting worse, but its slowly degrading and the Liver does regenerate itself.

Is Transplant an option

The quick answer is Maybe. Liver transplants are well advanced and the success rate is great, it can also be a live donation, so I could donate to Sarah, the Liver is one organ that does regenerate so I could donate a portion of my liver to Sarah. Pancreas transplant is another matter though, pancreas alone transplants are not as advanced as Liver's and certainly not in a child. I am not aware of the RCH transplant team performing one on a baby before, not a Pancreas alone. The issue is as she doesnt have a pancreas does she have the other structures surrounding the pancreas for a donor pancreas to take, this is the big unknown and maybe the only way of knowing if to try it, or for one of the 3 children to try it.

There really is no easy solution, however with Stem Cell research being opened up in the USA a better way t manage these kids will be just around the corner.

Managing a baby with Diabetes - how do we cope?

I wont lie, its hard, its really really hard. Some days we are chasing low sugars all day long, the next we are chasing high's and just when we think we are seeing a pattern things change and it just confuses us even more, the joys of Diabetes.

I would say on average we hit out target Blood Glucose levels about 70% of the time. the other 30% we are chasing either high' or lows. High's dont actually bother me too much, sarah rarely develops the dangerous Ketones, the lows however are concerning. A low is considered anything under 4.0 quite often Sarah drops down to between 1-2, ive become so immune to it though it just forms part of our day and we just get that Sucrose out and sarah sucks it down like a lolly pop!

Anyway its now 5am and its feedtime again, so I shall sign off her.

I promise to come and update abit more tomorrow.


1 comment:

genol said...

i thank God for u and your baby. i wish i was that lucky. i born my daughter at 6 mos and had to watch her die because of lack of resources