Getting More Prepared

February 17th 2010

Well it's a while since I've had anything new to add but there's been a lot going on..mainly inside my head!  The intense emotions of the first days and weeks following diagnosis have waned dramatically and have been replaced very subtly with equally strong emotions of a completely different nature.  After a while it really was time to start replacing all the baby items I had so generously donated to charity what seems like a lifetime ago now.  The children and I spent a very enjoyable weekend choosing some special blankets from e-bay stores in the US..we wanted some that were extra nice and knowing that Gymboree and Carters aren't available in Ireland added to the attraction.

When the first super-soft beautiful pink and pale green traditional blanket arrived a few days later it suddenly struck me that it's a little baby that's coming along so soon and not a 'condition' !!  No matter what her health is she's still our little baby girl, she'll look and feel like a new little baby and most special of all...she'll have that beautiful new baby smell..you know the one where you see mothers looking like they're kissing the little head but in reality they're drinking in that smell and storing it in their memory bank.   I cleared out some wardrobe space for Louise's things and it's now almost ready with her essentials.  Normally I can prepare for a baby in a few hours but this time I'm not quite so sure exactly what she and I will need as  everything's still hanging in the air so to speak.

Last Monday we had our latest visit to the maternity hospital and as usual I was very apprehensive that the scan would show a deterioration in the heart or an enlargement of the cyst or amount of excess  fluid around the brain.  Happily the cyst has remained in the exact proportion since first detected and there's no increase in the brain fluid.  Both of these are good news although with Dandy-Walker  hydrocephalus often doesn't develop until after birth.  I presume the neurologists in Crumlin Hospital will keep a close eye on that but at the moment the Prof of Obs doesn't think a shunt will be urgently necessary.  That'd be one early operation less so hopefully would increase our chance of getting the baby home quickly (that's my surmise) .  The doctor doesn't think anything new should show up at this late stage as regards more organs affected etc...I was delighted to hear her say that as she's been warning us all along that as the pregnancy developed more things sometimes show up.  Great to get an optimistic glimmer.   Still we won't know till after delivery.   She had a good look at the baby's face and as far as ultrasound can show, none of the facial malformations sometimes connected to DW seem to be present.  A  little peep at the baby's 'modesty'  confirmed that indeed Louise is a good choice of name and the little pink matinee jacket I've knitted wasn't a waste!!

After another wait the Pediatric Consultant and Registrar came down to meet us.  The consultant told us as far as he can tell he's not expecting the baby to be very unwell at birth and gave us a rough idea of what will happen.   Basically everybody except Dublin Fire Service will be present at the birth ( I'd better make sure I look my best!) and depending on her colour we may or may not get a quick cuddle.  She'll be taken to special care immediately and if we give them half an hour to get her looked over and a line put in for medication to keep the vessels open, John can join her.  They'll decide then when to transfer her to the Children's Hospital depending on the time of day etc.  God knows when I'll see her but I suppose her health is the first priority.

Anyway, back to the first paragraph where I said my emotions have been replaced.  I'm now really looking forward to meeting Louise.  She's been to the forefront of my mind for the last 12 weeks and I've pondered, cried and prayed about every possible angle.  I'm not cried out yet but I've managed to get through my first tear free appointment.  I'm still filled with apprehension about the future and the possibility of seeing my child die before me.  Any song or remark can still set me back to square one, but I can honestly say that I have benefited from the prayers of so many people and most days I don't feel afraid or negative.  John is still the one keeping the ship in keel as his whole process of acceptance was almost instantaneous as opposed to my many meanders.   Now though I just want to see our baby and the strong emotion I feel  is Love for her and Thanks to God for sending her!

Finally, I can't over-emphasise how much we appreciate the prayers from so many parts of the world.  I'm genuinely overwhelmed with the beautiful e-mails, letters  and messages we've received.  If you took your view of the world only from the media it'd be pretty negative, but I can truly vouch for the goodness of so many people I've experienced these  past few months.  Thank You.

Next appointment is 15th March, then only 12 days before due date.