Over the last couple of days, little Nudgie has been doing his best to turn around. I was certain that I couldn’t feel his head above my navel anymore and thought he might’ve worked himself into a transverse position. This was confirmed on ultrasound yesterday. Then last night, he was so active I thought he might’ve been rearranging furniture or something! He was definitely head up again during the day but when I woke from my nap this afternoon, he was on the move again. Tonight I’m getting a lot of low kicks and I can’t feel his head up high at all. I’m hoping he’s settling into a head down position, probably with his feet tucked up. I would LOVE to have a little low-tech ultrasound machine at home!!

We had an excellent run to the hospital this morning; it took only 40 minutes to get there. We met with the high risk pregnancy midwife again and she ran us through the plan for the day and went over a couple of questions we had. The geneticist met with us at 11am and he went through our medical history, created a family pedigree and discussed the plan for Nudge. He seemed a little baffled when we said our previous geneticist had ordered subtelomeric testing and he requested our consent to contact her regarding this and to get copies of results of all previous testing. Of course we gave our consent and I will be interested to know if anything comes from this, especially as we haven’t been given those results yet. The best part of all is that he already knew about the recent discovery of the involvement of the RET gene in bilateral renal agenesis (this is the information I received directly from the lead researcher in the UK), and he recommended that we test Nudge for a mutation on the RET gene. This made me so happy, I cannot describe just how thrilled I am to have such a proactive team of doctors looking after us.

The midwife popped in to check on us then arranged to have a neonatal intensivist speak to us. This doctor was lovely but I was much too upset to speak to him and I am so grateful for the husband because he took everything in hand. He said all the right things and asked the right questions but they were all things I had no idea about. One thing that he was definite about was his request that if Nudge is born living then we want him supported to allow for baptism and family members to arrive to the hospital. I didn’t realise this was an option for us but the intensivist was wonderful and wrote up the order in our patient file to ensure Nudge will be given oxygen and whatever else might be necessary. Given the severity of the prognosis we have formally declined any intervention that will cause him pain and request that he just be kept warm and comfortable. The intensivist was happy to arrange these things for us.

The midwife found us again and arranged for the social worker to meet with us. She was a lovely older woman and we had a brief chat about our situation and our wishes. She said that there is a nursery that we’ll be given access to that has been designed for parents in our situation. We’ve requested baptism and the social worker has promised to arrange for the hospital’s chaplain to contact us in the coming weeks.

I am so glad that I pushed to transfer our care to this hospital. Our previous hospital haven’t done anything like this; when they changed the diagnosis, we fell between the cracks. The husband is very keen to lodge a formal complaint and while I agree that there are more than sufficient grounds to do so, I just don’t have the energy right now. If our case had been handled differently, I doubt I would have agreed to interrupt the pregnancy and the end result would still be the same. What’s the point of expending energy on a complaint when I can barely lift my head by the end of the day?

This entry was posted on Wednesday 6th January 2010 at 9:12 PM and is filed under Nudge, Pregnancy. Both comments and pings are currently closed.