I had a terrible night last night. I kept waking up feeling all tense and scared. I gave in at about 5am and got up. Even as we were in the car on our way to Burnie I still wasn't really decided on what I was going to do. Drew kept saying he was happy with what ever I decided so he was no help at all! I warned him though that he had to leave his sad eyes at home because I couldn't deal with holding myself together as well as him!
Doctor Hingston took one look at me and knew that I wasn't happy with doing the test. She explained the results of the scan again to us and said that because of the type of cleft there is a 50% chance that there are other defects present. She then said that because nothing else can be seen on the scan other than the cleft then our risk factor drops down to less than 15%. We were given a 52% chance of the 3 trisomy's with sophie based on her scans, so I'm happy enough to believe that nothing else is lurking around the corner for us.She did reiterate that it looks like one of the worst clefts that they have seen in a while and we will have a lot to deal with, but that we will be in very good hands.
In terms of what I was told yesterday about not being able to deliver at our hospital, I think the lady I spoke with probably didn't have all of the information at the time and was be overly cautious. But that's fine, I'd rather they start off over cautious than not cautious at all which is what I would have expected at our last hospital. Actually its pretty much exactly what we got at our last hospital with sophie considering they waiting so long to tell us there was a problem!
In the end she said she was pleased that we were so certain that the result wouldn't change our minds because it makes it easier for her to help us decide what to do. She said ultimately its about what we could live with easier - losing the baby now from a complication of the amnio or delivering a baby that has little chance of survival. And I know it might sound strange to some people, but losing the baby now would kill me more. I lost enough children I never got to meet for one lifetime.
My antenatal care does change without the amnio to confirm that everything is ok. They need to keep a closer eye on things, so I'm being transferred to Dr Hingston's high risk clinic and I'll be saying goodbye to Dr Jensen. I can't say enough how good he has been to us through the early stages, and I'll be a little sad to move on!
The plan is now that we have regular scans to check that she is growing properly, and unless her growth slows there is no reason to expect a problem. Dr Hingston is off to Fiji for a month (lucky thing!) so she had me meet her replacement today who I will see in 2 weeks time, and in the mean time they are organising for the surgeon and paediatrician to contact us, as well as the local cleftpals coordinator. We will have appointments coming out of our ears for the next 16 weeks so time is going to fly by so quickly.
I see my midwife in 3 weeks, and I'm going to just make sure that when we deliver the staff will be aware that we will have feeding complications and that they'll be prepared, and not trying to push the "breast is best" party line on me as I've heard that some midwifes still wrongly believe that cleft Babies can be breastfed and that sort of pressure will be the last thing I need.
I'm also going to sit down and make a big list of questions I need to ask everyone, and things I need to read up on like feeding with an NG tube, and financial assistance and all of that. Lots and lots of research coming my way, I'll be a cleft palate expert in no time!
So that's where we are at today. Who knows what tomorrow has in store....
No comments:
Post a Comment