Monday, April 2, 2012

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 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.


  1. Steph Says:
    So great to hear positive news, thank you for you keeping us updated. Thinking fondly of you and praying for you all every day. Love to you all from Bonnie Scotland :- )
    February 18th, 2010

  2. Maria Conroy Byrne Says:
    What a lovely encouraging and positive post. Keeping you all in our thoughts and prayers.
    February 20th, 2010

  3. John Says:
    I was there!
    February 22nd, 2010

  4. Alice Says:
    Wonderful to hear that everything is as good as it can be – sending all our best wishes and prayers from Melbourne.
    P.S – All the best people are born in March!
    February 24th, 2010

  5. Claire C Says:
    Glad to hear things are ticking by without too much trauma just now… Well done on the shopping….its just so exciting when you actually have baby clothes ready to use… Will be thinking of you both a lot and enjoy these days when you have her SOOOO Close!! C
    February 26th, 2010

  6. Orla N.Ireland Says:
    Jennifer, I’ve just been Reading through ur blog, ur first scan blog when you found out, the tears are dripping from my face, I have felt all of that we have a little boy called Ben with Dandy Walker Syndrome he’s 2 and a half and honestly we went through so much just like yourselves in our pregnacy ESP the last 4 months. Ben doesn’t have a heart condition, but he does have a sizable cyst and an underdeveloped Vermis, this we were told would severly affect his ability to walk, learn and reach his milestones! This really upset us for so long but just like yourselves we knew this was OUR baby and as my mum always said “god won’t give you anything you can’t handle” also another lovely think one of our midwives said to us was that special children are given to special parents!
    Really Jennifer I just wanted to let you know that as long as you believe everything is ok it will be, I just couldn’t wait to hold ben in my arms although I could feel his every movement, the times when I was feelin really low, wither it was coming out from an appointment and being told the cyst had doubled in size or generally just saying why us? All I wanted to do was hold him in my arms.
    That day came and although at first he was blue a little oxegen sorted him out, I was laughing at ur reference to who’s going to be at the birth lol I was the same paed’s and sonographers all there but it’s all for the best!
    Ben is a perfectly normal little boy, he has had no problems whatsoever, never developed hydro and has mention every milestone today’s, he walked at 14 months and he’s a funny wee man.
    We do have another MRI scan in a few weeks so hopefully that goes well.
    I just wantto wish you and john all the beat with little louise, I wish you allege luck in the world, My mum does the novena in clonard in Belfast she prayed for me the whole time I was pregnant and I believe her prayers not only helped me cope but helped Ben, I will ask her to light some candles for you all.
    Lots of love Orla, Kirk, Ben and Eva Lillie (our newest addition)
    P’s Ben is in the YouTube video you have posted from Dandy Walker Alliance he’s the little boy with the furry army coat with the beach behind him after the little boy with the Santa hat on!
    March 14th, 2010

  7. Claire Kelly(Mangan) Says:
    Hello Jennifer,
    I bet you didnt expect to hear from me after all these years. I just read little louise’s story and thought what a wonderful little girl you have. Im not going to rabbit on too much but just to say my thoughts and prayers are with you and your family. Your dad(Mr Conroy or Joe which he informed me likes to be known as now) told me about your blog on louise and im so glad. Some time maybe when louise is stronger and you have more time (if that is possible with 6 kids) you might contact me. I am married to Liam with 3 kids, emma 19, siobhan, 16, and eoin 14 and back living in Timahoe would you believe. I hope you will keep up the blog on louise and her progress in the future. God bless claire (your OLD school buddie).x
    June 27th, 2010