PH Parents of 09..
Discussion
redvictor said:
Slinky said:
Check in folks, expectant mums and dads.. We're all in the same boat together, hoping that our new arrivals will grow to share of petrolhedonistic love!
Mini-slinky is due to arrive 02/04/09, our first..
slinky
ahhhh................lmfaoMini-slinky is due to arrive 02/04/09, our first..
slinky
You got this out of the way years ago!funk odyssey said:
Slinky said:
Check in folks, expectant mums and dads.. We're all in the same boat together, hoping that our new arrivals will grow to share of petrolhedonistic love!
Mini-slinky is due to arrive 02/04/09, our first..
slinky
exactly the same as ours! Mini-slinky is due to arrive 02/04/09, our first..
slinky
funk odyssey said:
Slinky said:
funk odyssey said:
Slinky said:
Check in folks, expectant mums and dads.. We're all in the same boat together, hoping that our new arrivals will grow to share of petrolhedonistic love!
Mini-slinky is due to arrive 02/04/09, our first..
slinky
exactly the same as ours! Mini-slinky is due to arrive 02/04/09, our first..
slinky
slinky
Evening folks..
Well the last 48(ish) hours have been... hectic..
Daisy Dorothy May Perry was born @ 0847 on 27/03/09, weighing in at 6lb 12oz.. Unfortunately, Daisy has been born with Spina Bifida so was moved from Worcester Royal to Birmingham Children's hospital late last night. She has been through theatre today and initial signs are encouraging..
Daisy in NICU (Neo-Natal Intensive Care Unit) yesterday before transfer to BCH
Daisy post surgery @ BCH (who, incidentally, have f**king awesome staff)
Please keep Daisy in your thoughts, every positive one helps...
slinky, bert & Daisy
Well the last 48(ish) hours have been... hectic..
Daisy Dorothy May Perry was born @ 0847 on 27/03/09, weighing in at 6lb 12oz.. Unfortunately, Daisy has been born with Spina Bifida so was moved from Worcester Royal to Birmingham Children's hospital late last night. She has been through theatre today and initial signs are encouraging..
Daisy in NICU (Neo-Natal Intensive Care Unit) yesterday before transfer to BCH
Daisy post surgery @ BCH (who, incidentally, have f**king awesome staff)
Please keep Daisy in your thoughts, every positive one helps...
slinky, bert & Daisy
dave_s13 said:
Did you know about the spina bifida before Daisy was born or has it been a rather unwelcome surprise? I assumed this was something that might be picked up on in the scans, not that it would matter.
She is lovely, I have a few patients with spina bifida and they are just normal, fully functioning adults so stay positive and the very best of luck to Daisy. Nice name BTW
Daisy's condition was undiagnosed until birth, so it did come as a shock to be honest... What is good is the fact that everything else about her appears to be perfect.. Heart rate and breathing is all spot on.. She is lovely, I have a few patients with spina bifida and they are just normal, fully functioning adults so stay positive and the very best of luck to Daisy. Nice name BTW
As I posted in another thread (on an entirely different subject)
slinky said:
your life is not over, your life has taken a turn that you didn't expect.. what you have to do now is take whatever positives you can from the situation and work with them.. That route is the only option..
Life does this, it's how it works, sometimes the turns are more severe than you could imagine, but you'll get through it.. deal with a minute, then an hour, then a day, then a week etc ad infinitum...
Never have I thought more about "carpe diem" than the last 48 hours..
Life does this, it's how it works, sometimes the turns are more severe than you could imagine, but you'll get through it.. deal with a minute, then an hour, then a day, then a week etc ad infinitum...
Never have I thought more about "carpe diem" than the last 48 hours..
Funk Odyssey said:
cheers - hope all is well with you guys -- we're only up the road from you, near Kidderminster
We're getting there, learning a lot and not sleeping a great deal! I guess you're doing the same..We're walking distance from a pub, fancy getting together and discussing the finer points of post-midnight changes!?
BlackVanGirl said:
Slinky said:
We're getting there, learning a lot and not sleeping a great deal! I guess you're doing the same..
We're walking distance from a pub, fancy getting together and discussing the finer points of post-midnight changes!?
Congrats Slinky, she's absolutely beautiful. Glad to hear her op went so well - amazing that she's home so fast. How's it going this week?We're walking distance from a pub, fancy getting together and discussing the finer points of post-midnight changes!?
I guess we I should have posted an update since my last one.. Daisy was @ BCH for 7 days before being discharged.. The staff on the ward were amazed at how quickly she was discharged, commenting that none of their patients with Daisy's condition had ever been discharged as quickly as her! (we've obviously built a fighter!) ..
She's been back for a couple of appointments and progress all round appears to be going well, she's now up to 9lb 10oz from a birth weight of 6lb 12oz, her head circumference is increasing slightly above the percentile it began on, but this is to be expected with Hydrocephalus..
Daisy now gets more post than we do for her many appointments, we have an appointment on Monday with the Paediatric Trauma and Orthopaedics crew, an MRI booked for 28/05 and then back into surgery shortly after then to have a shunt fitted.
I'll get some photos online at some point...
slinky
SBDJ said:
Thanks. I think the toughest part is not knowing exactly what is going on and exactly what to expect, especially given events so far. I wouldn't wish what has happened to me (and the other half obviously) on anyone, no matter how much I hated them. To all those having kids, I wish you the best of luck
Totally agree with you on that one... I said a few times during Daisy's first week that I both would, and wouldn't wish the week on anyone, the highest of highs combined with the lowest lows made it very very hard, but with no other option available, you just deal with it.. Here's something that I wrote mid way through Daisy's first week whilst she was still @ Birmingham Children's Hospital..
Philosophical slinky said:
I appreciate that this doesn’t really mean a great deal to a lot of people, but something that Ma said nearly a week ago now has stuck with me.. This rollercoaster ride of pregnancy and birth has
been much like getting ready for the holiday of a lifetime, getting on the plane at BHX and
expecting to land in Barbados, only we ended up in Belgium... and I have to report that, whilst
the canals are lovely and so is the chocolate, it wasn’t quite what we were expecting..
So, as I sit down to write an update email for you all, I realise that actually, although there
is a long road ahead of us, I don’t think we’re stuck in Belgium.. (ok, so it has it’s plus and
minus points, but quite frankly, although chips and mayonnaise is lovely, I’m not a fan of the
Belgians... ) .. Far from it... We’ve toured through Belgium en route to another
destination... Still not quite as sunny and idyllic as Barbados, but still full of sun and
laughter..
If you haven’t already guessed, we’re in a rather upbeat mood at the moment, tired, but upbeat..
Some very encouraging news from our consultant and registrars over the last two days has meant
that Daisy will most probably be coming home on Monday.. Her renal function appears to be fine
and, following a visit from the Urodynamics team (what a grand title!) her bladder function
appears to be relatively normal (although time will tell whether there are any further
complications)..
The results of an ultrasound of Daisy’s brain show that there is evidence of Hydrocephalus and
Chairi Malformation, but both of these tend to come hand in hand with Spina Bifida. We (and the
marvellous folk at BCH) will be monitoring her progress over the next few months to assess
whether a shunt is required, this is a relatively routine operation that will entail a few days
stay in BCH and ongoing monitoring.. but we shall wait and see on that front..
Other than that, Daisy is doing well, taking her feeds well and grizzling like any normal baby
does.. trying to care for your child in hospital is relatively challenging, surrounded by
machines that beep at the wrong moment and fill you with panic! But, we’re getting there.. We’re
both so excited about Daisy coming home on Monday, I dare say that neither of us will sleep a
wink on Sunday night!
If you would like to understand Spina Bifida (and its associated conditions) a little more, have
a look at http://www.asbah.org/ this is the website for the Association for Spina Bifida and
Hydrocephalus and is full of great information...
For info, Daisy’s condition is this; Spina bifida in the form of Myelomeningocele at L1-2,
Hydrocephalus and also Chiari Malformation (all of which are covered at asbah.org ... )
Keep thinking those positive thoughts and making those prayers, something’s making all of this happen!!
Love to you all
W, E & D...
been much like getting ready for the holiday of a lifetime, getting on the plane at BHX and
expecting to land in Barbados, only we ended up in Belgium... and I have to report that, whilst
the canals are lovely and so is the chocolate, it wasn’t quite what we were expecting..
So, as I sit down to write an update email for you all, I realise that actually, although there
is a long road ahead of us, I don’t think we’re stuck in Belgium.. (ok, so it has it’s plus and
minus points, but quite frankly, although chips and mayonnaise is lovely, I’m not a fan of the
Belgians...
) .. Far from it... We’ve toured through Belgium en route to another destination... Still not quite as sunny and idyllic as Barbados, but still full of sun and
laughter..
If you haven’t already guessed, we’re in a rather upbeat mood at the moment, tired, but upbeat..
Some very encouraging news from our consultant and registrars over the last two days has meant
that Daisy will most probably be coming home on Monday.. Her renal function appears to be fine
and, following a visit from the Urodynamics team (what a grand title!) her bladder function
appears to be relatively normal (although time will tell whether there are any further
complications)..
The results of an ultrasound of Daisy’s brain show that there is evidence of Hydrocephalus and
Chairi Malformation, but both of these tend to come hand in hand with Spina Bifida. We (and the
marvellous folk at BCH) will be monitoring her progress over the next few months to assess
whether a shunt is required, this is a relatively routine operation that will entail a few days
stay in BCH and ongoing monitoring.. but we shall wait and see on that front..
Other than that, Daisy is doing well, taking her feeds well and grizzling like any normal baby
does.. trying to care for your child in hospital is relatively challenging, surrounded by
machines that beep at the wrong moment and fill you with panic! But, we’re getting there.. We’re
both so excited about Daisy coming home on Monday, I dare say that neither of us will sleep a
wink on Sunday night!
If you would like to understand Spina Bifida (and its associated conditions) a little more, have
a look at http://www.asbah.org/ this is the website for the Association for Spina Bifida and
Hydrocephalus and is full of great information...
For info, Daisy’s condition is this; Spina bifida in the form of Myelomeningocele at L1-2,
Hydrocephalus and also Chiari Malformation (all of which are covered at asbah.org ... )
Keep thinking those positive thoughts and making those prayers, something’s making all of this happen!!
Love to you all
W, E & D...
Thought you might like an update on Daisy dot..
She's doing really well, now weighing 9lb 14oz and gaining bags of character every day..
An appointment on Monday revealed that she has great strength in her quads (a prognostic indicator for SB babies around whether they're likely to be able to walk) and ultrasound shows that hips are in good shape (left slightly restricted, but no concern)..
MRI booked for 28/05/09, so we'll see what happens!
slinky
She's doing really well, now weighing 9lb 14oz and gaining bags of character every day..
An appointment on Monday revealed that she has great strength in her quads (a prognostic indicator for SB babies around whether they're likely to be able to walk) and ultrasound shows that hips are in good shape (left slightly restricted, but no concern)..
MRI booked for 28/05/09, so we'll see what happens!
slinky
Thought I'd fire a quick update up..
One of the many expressions of Daisy Dot.. Things are going relatively well, apart from a weeks stay at Worcester Royal Infirmary following an ecoli based UTI (still trying to work out how that happened!)... Daisy has now had an MRI (and a hip scan a little while back too) and has kidney ultra-sound and DMSA scans coming in the next couple of weeks.. but.. she's doing really really well, gaining weight nicely (apart from when she was unwell) and is now at a fighting weight of 11lb 13oz!
Fingers crossed all will continue to be this well.. We're waiting on reports off the back of the MRI, there's potentially more surgery required depending on what they find..
Will report back when we know more..
slinky, bert & Daisy Dot..
One of the many expressions of Daisy Dot.. Things are going relatively well, apart from a weeks stay at Worcester Royal Infirmary following an ecoli based UTI (still trying to work out how that happened!)... Daisy has now had an MRI (and a hip scan a little while back too) and has kidney ultra-sound and DMSA scans coming in the next couple of weeks.. but.. she's doing really really well, gaining weight nicely (apart from when she was unwell) and is now at a fighting weight of 11lb 13oz!
Fingers crossed all will continue to be this well.. We're waiting on reports off the back of the MRI, there's potentially more surgery required depending on what they find..
Will report back when we know more..
slinky, bert & Daisy Dot..
BlackVanGirl said:
Slinky - she's absolutely gorgeous! I really love her big eyes, she looks so alert - perky really. How old is Miss Daisy now?
Thanks, she is doing well.. She was born 27/03/09, so she's 16 days away from 3 months old..BlackVanGirl said:
How is she going on with her hydrocephalus, has she got a shunt or is that what's pending investigations?
No shunt as yet and head circumference isn't giving us massive reason for concern at the moment. The MRI was partly to assess whether or not a shunt is required, so we'll see what the consultants say when those results become available.BlackVanGirl said:
I've had an e-coli UTI recently, apparently most of us have some of the bugs in our gut and if you're unlucky they take a wrong turn on the outside and try to set up camp in yer bladder. Particularly so if your bladder isn't very good at completely emptying itself. I have the same/very similar bladder and bowel issues that a lot of people with spina bifida have, UTIs can be fairly common but you get very good at dealing with them and self-diagnosing when there's a problem - it's easy to manage it all once you're used to the routine.
Babies are brilliant. I'm so jealous of you all.
Well we've now been given the antibiotics that (apparently) Daisy should have been having daily since birth.. so hopefully we'll be able to guard against most of the future infections.. Although, having to give poor dot trimethoprim every day isn't nice, it must taste absolutely foul if the smell is anything to go by! Babies are brilliant. I'm so jealous of you all.slinky
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