Monday, June 18, 2007

being on the medical rollercoaster

It's a strange thing, seeing consultants every 2 weeks to try to work out how seriously ill your baby is. There's lots of guesswork and words like if, possible and may, while we - the parents - are left to analyse all of this and cope with the question - is our baby going to die?
Sine we were referred to Fetal Medicine at 22 weeks we have been told our baby's heart is fine, then it wasn't fine, we were told our baby could have a serious chromosome problem which would mean it wouldn't live - so we had an amnio and baby got the all clear - we were told out baby wouldn't grow very well - so far it is doing brilliantly and its estimated weight is almost 5lbs at 34 weeks. We were also told I would probably have too much amniotic fluid because of the potential stomach problem. In the last 2 scans my amniotic fluid has been high but still normal and I think this is just how I make my babies, this pregnancy is no different. This week my fluid level has actually gone down, but not down as much as they would expect whicih leaves me wanting to scream BUT IT'S GONE DOWN!! Surely if I had a serious fluid problem the level would be increasing not going DOWN????????

With each scan, since they told us about the heart problem about 2 months ago we have been waiting for the left side of the heart to deteriorate but it hasn't. The consultants were pleased this week to see that the left side of the heart is doing well.

I'm not criticising any of the consultants with any of this rant - they are fantastic and they are just doing their job but, at times, it has been so hard. To the consultants we are just another couple with a potential poorly baby, they do their scans, make their comments but we are left to cope with the reality of our situation.

As I'm 35 weeks now the consultants agree that they can't really tell us anymore - although I'm sure we will have more scans before the birth - and that I need to focus on the birth because the true diagnosis of the baby's condition can't be given until he or she is here. So we're back at he hospital next week to talk through the birth, what happens afterwards regarding testing the baby and how do we keep some control and understanding of everything.

Induction at 39 weeks has been suggested which I will not be having. I'm confident that my body can do this by itself, I've never had any problems before and I've never reached 40 weeks before. And I don't understand why the need to induce when the baby needs to be as big as possible to cope with surgery. The conversation involved lots of ifs, possiblys and mays so, in my eyes, it's open to discussion!



Blogger Simon said...

hey babe,

Sounds like you have really been going through the mill with this.

Always here for you, even if we dont manage to get together very often :-)

Love Si.

2:17 PM  
Blogger Annie said...

Awwww I've been thinking of you loads Hun

If you feel like a chat feel free to call...

Annie x

7:12 AM  
Blogger Carolyn said...

Hi Janine - Just wanted to let you know i'm thinking about you, even though i dont get to post on the other site much anymore.

Keep strong and positive

love Carolyn

4:12 PM  

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