Tuesday, April 10, 2012

Because I'm LOUISE you know...

January 30th 2011

I've been meeting up with some friends recently who have been asking why I've added nothing to my blog for quite some time now. I've been posting pretty regular updates on Louise's progress on Facebook but there are those of course who aren't getting them so I'm going to try to be more diligent from now on. Of course the high drama and emotional moments of the last year are hopefully a thing of the past and I truly am praying that we don't have to live through such a roller coaster ever again. I know the prospect of more surgery is still ahead of us but my prayer is that maybe Louise will be one of the few children who get away without needing the final Fontan procedure. When Louise had her last cardiology appointment a few months ago the doctor was really pleased with her and said he was actually surprised to see her looking AS well. He wasn't expecting her colour to be nice and pink as the norm is that the child doesn't pink up until after the Fontan. I was pleased he did an echocardiograph as of course my niggling thoughts like "what if the shunt is leaking" or "what if the internal sutures burst" etc etc...I think anyone who's been following this story so far by now know that's the way my thoughts tend to run away with themselves!! I need to take them in hand and rule them more!! Of course the doctor confirmed that nothing untoward had happened and the operation has been a success.

I think I might have forgotten to mention that before Louise was released from hospital the Neurologist had requested a head circumference measurement which had led to a bit of a panic as it measured an increase from from before the operation! We almost didn't get home as he wanted an urgent cranial ultrasound and at this stage in the evening it was unlikely it would be done and read that day. I was sitting in the little ward cubicle which is for the next baby going home with tears of disappointment in my eyes and a nurse sitting with me trying to contact the neurology team when Louise's specialist nurse came in.

"I thought you were going home?"
"No we're not.."
Etc etc..
"WHAT!!?? Wait here..."
A few minutes later..
"come with me, Louise is having her cranial ultrasound NOW"

As it turned out she had been just walking along giving out to God for nothing going too well that day when she spotted we were still there. A few hours previously she had done a good turn for one of the neurologists who now owed her one!! She had gone to her and asked her to repay the favour by doing the scan immediately. This was extra lucky as because the other neurologist was a consultant she was able to read it straight away and told me Louise definitely had NO hydrocephalus and we could go home!! Sometimes letting off steam to God just pays off. It was actually better in the end as we had the extra reassurance of the scan that all was well.

That was almost five months ago and since then Louise has come on in leaps and bounds. She is now cruising the furniture and I am convinced she'll be walking well before her first birthday. Some of our other babies were ready to walk long before they actually took that step but lacked self belief and just wouldn't let go!! Louise believes in herself and is not afraid of letting go. I have to be on constant guard with her as she has eagle eyes and everything has to be investigated and popped into her mouth..it's paid off once or twice when she discovered a dropped malteser and another time a marzipan ball!! She's very very well and we've had no scares with her as regards temperatures and so on in spite of the harsh winter. She's a tough little nut.

Louise's Dandy Walker is certainly having no impact on her motor skills and co-ordination and maybe the only thing I'm noticing is that she doesn't really babble or have any baby-talk which she really should be doing by now. She makes a sound like a mix between a baby seal and a baby crow. I'm not overly concerned as I can see her intellect is good and if she has any difficulty she'll be able to apply herself to solving it. Louise is one determined lady!! We're seeing the Neurologist in February so we can mention it to him then if she hasn't come on. The other funny thing is that even though she can crawl and cruise she CAN NOT roll!! If you put her on her back she's like an upturned tortoise, completely beached. Her cot is still at the newborn setting as she doesn't move at all in her sleep but I suppose we should lower it as these milestones can be reached suddenly! SLEEP...that's another issue!! Louise is a curious little girl so breastfeeding during the day isn't top of her priorities as she's afraid of missing anything. Solution? "Well Mammy's available ALL night and it's dark and the others are all asleep and so is Daddy and Mammy doesn't mind because I'm her girl and why waste good daylight hours when I can be in Mammy and Daddy's bed feasting and it's so cosy and snuggly in there and there's loads of room because Mammy will teeter at the edge and try to convince herself she's asleep but she'd better not expect me to unlatch because I'm LOUISE you know..."

Cardiologist appointment tomorrow, I'll update then.

Christmas Morning

I love this Santa Claus guy!


  1. Nuala Brennan Says:
    Oh my God Jennifer . It is absolutely brilliant to see this beautiful WATER BABY . SO HAPPY TO RECIEVE NEWS . lots of love Nuala
    January 30th, 2011

  2. Miriam Kennedy Says:
    When looking at waterplaying gurgling funloving Louise and comparing these happy images to the ones where she was weak and needing the operation, and those heartrending pictures of her full of tubes post-op…… She is such a wonderful symbol of Hope…. For Life and Love and connectedness!
    February 20th, 2011

  3. Melanie Bennett Says:
    Jennifer, I will probably never meet you or your family this side of heaven- but I LOVE your Louise! She is such a beautiful little miracle! I know I haven’t known you long, but I feel a kinship to many of the parents I “meet” of DW kids. Who knows, maybe someday we’ll win the lottery and I’ll hop on a plane to Ireland!
    February 20th, 2011

  4. Orla xx Says:
    I love the last paragraph lol the fact that she knows she can catch up on her feeding through the night lol… Poor u!! Clever girl tho:)
    Regarding the talking and making sounds I wouldn’t worry about it Ben was the same he didn’t really say much for the first year and a half!! But I knew he was aware of everything I was saying!
    Lots of love to you and your beautiful family!! Keep up the updates:)
    February 20th, 2011

  5. Mags Says:
    She is gorgeous and hilarious. I wonder where she got that from……..
    February 20th, 2011

  6. Lou Says:
    I hope Dolly is still with her! You have a great gift for writing you know!
    February 21st, 2011