Appointments and more appointments!

Not that I'm complaining too much, the level of care we are experiencing is excellent. The main problem is the logistics, still no moving date so care continues to be divided between Northampton and Birmingham. I had an appointment at BWH on 26th October to get the ball rolling up there, I can't recall much about what was said just that the Obstetrician agreed to a cesarean so we have it all booked for 18th January 2012!!! 
He also said there is a less than 10% chance of other chromosomal issues although he wasn't specific as to what these were and suggested we talk more in-depth with the cardiologist.
I have O Rhesus negative blood which means I had to have an anti-d injection, I'd rather not say where they administer this particular injection! Anyway, I had it on the 1st November, I told the midwife I was nervous, her reply, 'Oh don't worry it only hurts as it goes through the muscle.' Hmm. That said, it didn't hurt too much.


Next appointment was on the 3rd November, this was with Dr Paul Miller the cardiologist we have heard such a lot about. After a nightmare journey driving cross country and missing trains we made it just in time. A midwife did a full scan of the baby prior to the cardiologists visit, this was hard going as the room was boiling and I began to feel really sick, the sensation of being scanned and lying on my back nearly made me faint. They sorted the air-con and gave me a drink of water, I made a right scene about getting my jumper off, as soon as I sat up it passed and I was fine.
Dr Miller came in to do his diagnosis of baby's heart, I promptly had another episode which again passed as soon as I sat up. Before nearly throwing up on him he managed to gather enough info to confirm Dr Mannings diagnosis. Although he referred to the coarctation of the aorta and added hypoplastic transverse aortic arch, I haven't looked this up but I assume it means not only is it too thin it is also the wrong way around?
Alan and I were sent to wait in a side room with tissues on the table and paintings of lillies on the wall, we have been in a few of these rooms for 'chats' lately.
A midwife, a doctor and Dr Miller joined us to discuss baby.
Dr Miller was very straightforward, he said baby will have the coarctation fixed within the first week of life, which we expected to hear. There is a problem with the following operations for the DORV and TGA as one part of baby's heart they need to stretch to the correct chamber will be too small to reach across so he suspects the best option is to fix a band around one of the valves to reduce flow to the lungs and allow baby to go home and grow! :)
This is both good and not so good, good he may get to come home much sooner than we first thought but not so good as he will still be struggling with the large hole in his heart. I can forsee many sleepless nights, I won't be able to take my eyes off him for a second.
Back to my biggest fear, the chromosomal issue. I asked again what syndromes apart from Downs could be linked to these heart defects, they told us DiGeorge syndrome. I have heard of this before and understand there is a wide spectrum of how this can affect people, from so mild you would never even know a person had it to a few learning disabilities, it's very rare though. However, the word 'rare' doesn't mean that much to us as we already fall firmly into the 'rare' category.
The midwife was happy with baby's measurements, there was nothing else suspect they could see on the scan. Although Alan and I are pretty much at the stage where nothing would shock us it is reassuring to know baby has no other problems they can detect. They did offer me the amnio again, I politely declined.
The amniotic fluid has risen though, enough to make them concerned, it could be something or nothing, gestational diabetes, infection in the womb or this being down to a genetic or chromosomal syndrome. I am due to go to Northampton on the 11th November for a gestational diabetes test(GTT) to hopefully rule this out. I have to fast from 10pm on Thursday night, in the morning they do the GTT, consisting of two blood tests with a glucose drink in between, the midwife confessed the concoction is foul so I'll look forward to that. They will also scan again to see what level the fluids are at...please let them have decreased!!
If it turns out I have this gestational diabetes they will handle the pregnancy differently....what that entails I do not know? If it's because of anything else then there's not much they can do.
I have cut sugar out of my diet all the same and invested in some really healthy/boring food to eat from now on. I was happy with my Jamaican ginger cake and golden syrup cake and really any type of cake, particularly Alans Mums cakes, or biscuits, or snickers and mars...and Twix's....


We have 2 more appointments lined up, one for a routine scan on the 23rd November and one on 22nd December with Dr Paul Miller just to check if there are any changes to baby's heart. We have been given the contact of Kay Dyer, a cardiac liaison nurse at BCH, we plan to arrange a meeting with her soon. Grace will come along too to have a look where babies with heart defects are treated. We think this meeting will benefit all of us, including Grace and start to prepare her for things she may see in January. Dr Miller has warned us in no uncertain terms, nothing can prepare you for seeing your own baby like this.


I had a revelation the other day, after feeling down and depressed and miserably sorry for our situation I decided enough was enough. Up until this point I have refused to buy a thing for baby and not even looked at any baby clothes, it dawned on me if he was born premature he wouldn't have a stitch! So I have bought him some socks! I am on the lookout for a few hats next and Grace is going to pick his first cuddly toy. Alan and I continue to have a sense of humour and are looking on the bright side more often than not. 
I'm over the scare mongering and figure the Dr's have to do their job and entertain my morbid fascination with the world of syndromes and chromosomes but I really need to give it up. We won't know till he's here and so, in the meantime whats the point in obsessing over the if's, but's and maybe's!