Gracie had her big spine op on Wednesday and the actual op went very well but she was very sore afterwards. She has tethered cord syndrome so they have fixed that and are looking out for leaking fluid. She has been such an angel, even when she was nil-by-mouth she didn't have a grump and she didn't even cry much after the op! She has had to be flat for 4 days and we thought that would be such a struggle as not only does she always want to be sitting, she chokes if she lies down for too long because of her previous big operation- but she was so good for us.
We thought we would be able to pick her up normally today and allow her to be sitting up but it turns out her cerebral fluid has been leaking at her wound site... not good! The doctors are not too concerned at the moment (but a very worried mummy is, and 'just wait' doesn't sound too good to her) but they have said she needs to be laying down for longer and if she leaks more it is back down to surgery we go. If it continues to leak after they have added extra stitches then Gracie would need a shunt to be put in.
The nurses have been excellent though, although there are the odd few that don't seem like they should be in such a serious ward that is Neurosurgery, the majority have been very helpful and reassuring. We have also made some friends from our ward- with super cute babies!
We are just waiting for 'home' to be mentioned now and Gracie to stop leaking. Hospital seems to be one big waiting game...
I will add photos when home from the hospital with real internet connection!
Sunday, 26 June 2011
Monday, 13 June 2011
Silly sister...
So Gracie was waiting for her big girl food again and mummy and Hannah decided to be silly...
But Gracie sure did enjoy it! Her smile is so amazing, completely lights up her face...not including the whole room!
Grace is also so nearly (yet so far) from sitting up. We know she will do it in her own time as she is a very stubborn one! But she is very determined herself, she does not enjoy lying flat at all, possibly because she chokes if she stays laying for long and it scares her, but she lifts her head as if to try and sit up. She also absolutely loves to be sat up against something or if we hold her lower back! Mum is very undecided about bumbos, so many DS mums have said they have been great but our physiotherapist for Gracie said they do more harm than good and to definitely not get one... she also said we shouldn't be encouraging Googie to sit up as she can't roll from her back to her front, but she just loves sitting up so much!!
We sure do have one smiley, beautiful, determined baby!
Grace is also so nearly (yet so far) from sitting up. We know she will do it in her own time as she is a very stubborn one! But she is very determined herself, she does not enjoy lying flat at all, possibly because she chokes if she stays laying for long and it scares her, but she lifts her head as if to try and sit up. She also absolutely loves to be sat up against something or if we hold her lower back! Mum is very undecided about bumbos, so many DS mums have said they have been great but our physiotherapist for Gracie said they do more harm than good and to definitely not get one... she also said we shouldn't be encouraging Googie to sit up as she can't roll from her back to her front, but she just loves sitting up so much!!
Friday, 10 June 2011
Big Girl foods
Sorry I haven't posted much lately, I have been really busy with exams!
But Gracie is onto her 'big girl food', she has moved on to mushy foods, just stage 1, but considering she is only 6 months old and the doctors said that she wouldn't have her milk until she was 3 or 4! She has been doing great, eating small bowls, to start with she would just spit it all out onto her lovely clothes but she has started properly swallowing it now!
She also has her own spoon that she holds while she has her big girl food to get used to holding one, but all it ever seems to do is poke her in the eye!!!
We also got the news that the holes in Gracies heart have closed on their own so no need for an op! Her spinal op is on the 22st June and her oesophagus stretching went fine:)
But Gracie is onto her 'big girl food', she has moved on to mushy foods, just stage 1, but considering she is only 6 months old and the doctors said that she wouldn't have her milk until she was 3 or 4! She has been doing great, eating small bowls, to start with she would just spit it all out onto her lovely clothes but she has started properly swallowing it now!
She also has her own spoon that she holds while she has her big girl food to get used to holding one, but all it ever seems to do is poke her in the eye!!!
We also got the news that the holes in Gracies heart have closed on their own so no need for an op! Her spinal op is on the 22st June and her oesophagus stretching went fine:)
Sunday, 8 May 2011
Googies first time at the museum!
So today, mommie, sissy, daddy, Ethen and Gracie went to our local museum!
First we got the train (also for the first time), Gracie was laughing at the man standing next to her and didn't really like going through the tunnels.
We had lots of fun looking round in the museum. Sorry for the bad quality photos, mommies iphone isn't the best with a moving baby who wants to look everywhere at the same time!
But then the baby was far too tired and had had enough of looking at the museum.
So we went to Costa to feed Gracie.
When we got home we agreed it was time to have a chill out after the busy day.
We had lots of fun looking round in the museum. Sorry for the bad quality photos, mommies iphone isn't the best with a moving baby who wants to look everywhere at the same time!
But then the baby was far too tired and had had enough of looking at the museum.
So we went to Costa to feed Gracie.
JUST KIDDING!
Thursday, 5 May 2011
Bad news
Today we got the results from Gracie's MRI scan and it wasn't really the news we wanted.
She went for an MRI because they thought that something wasn't right on the ultrasound of the base of her spine. Mum went for the results today and they said that the original problem they thought it was, wasn't actually as bad as it first seemed but they found another problem, tethered cord syndrome. As humans we used to have tails so most of us still have a tiny thread (the size of a piece of cotton) where are tails used to be but Gracie's is thick and has some fat running through it. Although the doctor said we could go ahead without surgery there are a lot of things that can come along with tethered cord syndrome- and he would recommend surgery, so we have opted for the surgery option, in hope that it won't bother her at all in the future. This just means that she will be in hospital for another week after a small half hour surgery (nothing compared to her previous 9 hour surgery and 3 months in hospital).
Poor baby will have even more war-wounds!
She went for an MRI because they thought that something wasn't right on the ultrasound of the base of her spine. Mum went for the results today and they said that the original problem they thought it was, wasn't actually as bad as it first seemed but they found another problem, tethered cord syndrome. As humans we used to have tails so most of us still have a tiny thread (the size of a piece of cotton) where are tails used to be but Gracie's is thick and has some fat running through it. Although the doctor said we could go ahead without surgery there are a lot of things that can come along with tethered cord syndrome- and he would recommend surgery, so we have opted for the surgery option, in hope that it won't bother her at all in the future. This just means that she will be in hospital for another week after a small half hour surgery (nothing compared to her previous 9 hour surgery and 3 months in hospital).
Poor baby will have even more war-wounds!
Monday, 2 May 2011
Cheeky monkey keeping her momma and sissy on their toes
So yesterday Gracie gave us a HUGE scare. Momma put her lying down on her changing mat to change her and all of a sudden Grace started making horrible noises, as if she was trying to be sick and then struggling to catch her breath. So mommie picked her up and put her straight into the position we were taught for choking in resuss training but she carried on and then started frothing at the mouth. By this point all resuss training had gone out the window for both mommie and Hannah, mum was crying and shouting at Hannah to ring an ambulance. However once we actually calmed Grace down (because she not only scared us but gave herself the fright of her life) she managed to breath again and swallow her excess saliva, and then you would never guess what she did. She smiled. With momma crying, Hannah on the verge of a miniature Heart attack, Gracie smiled.
But all is well on Gracie land. After that episode she gave lots of smiling and chatting to everyone at Grandads BBQ and then slept right on cue.
We did some moulds of Googies feet and hands and decorated a little frame that momma got when Grace was born and there is room for a little picture too.
Look at her cutie little hands and feet!
Oh and guess who has got her head control!!! We were so excited, it seems to have come fully over-night but now she looks like a big grown up girl because she can hold herself much better. It is true what they say though, things will come when Grace feels like it and no amount of exercises and activities with help it!
The cheeky girlie had a late night tonight as she obviously wasn't very tired (she shouted her sissy until she went up to rescue her from bed) so we sat and read some nursery rhymes and watched Harry Potter.
We did some moulds of Googies feet and hands and decorated a little frame that momma got when Grace was born and there is room for a little picture too.
Oh and guess who has got her head control!!! We were so excited, it seems to have come fully over-night but now she looks like a big grown up girl because she can hold herself much better. It is true what they say though, things will come when Grace feels like it and no amount of exercises and activities with help it!
The cheeky girlie had a late night tonight as she obviously wasn't very tired (she shouted her sissy until she went up to rescue her from bed) so we sat and read some nursery rhymes and watched Harry Potter.
Saturday, 30 April 2011
Grumpy Girly
The last few days Gracie has been such a grump and has been sleeping and/or crying a lot, but in her defence we think she might have a little cold as her breathing and reflux have also been bad. She has had to sleep with 2 pillows underneath her, and because you are advised not to put pillows with little babies in case of suffocation, mum has been up and down all night checking on her, but it is the only way to help her reflux! When Gracie lies down her saliva pools and she chokes/ coughs and this is intensified when she is poorly.
We caught her in a moment of madness...
She was having a huge cry on Hannah's bed because she was put down while mummy and Hannah tried to get ready and do our makeup. Obviously, Gracie was not happy with being abandoned on the bed while we sat on her floor and quite loudy made her views known!
This is her titty lip and sad eyes that she uses to try make us sympathise with her and pick her up... notice no real tears there!
But then, Grace realised that mummy had her phone out and obviously phone means camera so what do you know,
The crying stopped straight away and a pout came out! She obviously knows how to 'work the camera'.
And then you would never guess, yes! a smile, the first smile we have had during her grumpy days and all because momma was taking pictures.
This is Gracies big smile she uses, the smile that reaches her eyes and brings meaning to the phrase 'from ear to ear'. Her tongue is also almost permanently out to say hello (and collect dog hairs that Hannah is forever picking off).
So there it is, we have found a new way to make Gracie smile, as well as holding her in the air and tickling the VERY tickley baby.
We caught her in a moment of madness...
She was having a huge cry on Hannah's bed because she was put down while mummy and Hannah tried to get ready and do our makeup. Obviously, Gracie was not happy with being abandoned on the bed while we sat on her floor and quite loudy made her views known!
But then, Grace realised that mummy had her phone out and obviously phone means camera so what do you know,
The crying stopped straight away and a pout came out! She obviously knows how to 'work the camera'.
And then you would never guess, yes! a smile, the first smile we have had during her grumpy days and all because momma was taking pictures.
This is Gracies big smile she uses, the smile that reaches her eyes and brings meaning to the phrase 'from ear to ear'. Her tongue is also almost permanently out to say hello (and collect dog hairs that Hannah is forever picking off).
So there it is, we have found a new way to make Gracie smile, as well as holding her in the air and tickling the VERY tickley baby.
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