Thursday 8 November 2012
In the green zone !
Well, it's been a while, sorry for not updating you all sooner. Here goes....
Big day today. We left the RVI for the last time, as Alice is currently being transferred to South Shields hospital as she's no longer classed as high dependency. Which I'm sure you'll all agree is amazeballs/awesomesauce
GREEN ZONE BABY!
Yep, after several weeks in the high dependency blue area she was moved through to the green area at the weekend. Which we were (and still are) amazed at. It's all started to move so quickly over the last couple of weeks to be honest, so I'll try and summarise:
Breathing - currently on low-flow oxygen, which is what she'll come home on. For how long we're not certain, but expectations are months rather than weeks.
Weight - A whopping 5 pounds and 3.5 ounces. Which is HUUUGE compared to my last update!.
Feeds - today she finally "latched-on" (sorry for the terminology Catherine!) and had a full feed from Mam!
Heart - No more apnea, de-saturations or issues with the open duct, but it still isn't fully closed so we'll keep a close eye on it
Temperature - She's currently in a normal cot, without any temperature control other than clothes, a small hat and socks (one of which she keeps hoofing off round the cot)
Noise - She's now shouting at feed times, nappy change times and generally at anyone who will listen, which is awesome, but I may regret saying that when it's 4am and she's at home doing it.... !!!
So, in a nutshell, I think we're not far off getting her home. Just to need to establish feeds and do a few more tests.... We can almost see the finish line!!!
However, it felt quite sad leaving the RVI. We've made some good friends over the last 13 weeks both patients and staff. I compared it to Stockholm syndrome, which the nurses didn't like as it suggests they're the prison guards.... :-P
Hopefully the next update will be my final one, as she'll be home and I probably won't have the time or energy to update this blog..... which, weirdly, I'm looking forward to.
Thanks
Geoff & Catherine
Big day today. We left the RVI for the last time, as Alice is currently being transferred to South Shields hospital as she's no longer classed as high dependency. Which I'm sure you'll all agree is amazeballs/awesomesauce
GREEN ZONE BABY!
Yep, after several weeks in the high dependency blue area she was moved through to the green area at the weekend. Which we were (and still are) amazed at. It's all started to move so quickly over the last couple of weeks to be honest, so I'll try and summarise:
Breathing - currently on low-flow oxygen, which is what she'll come home on. For how long we're not certain, but expectations are months rather than weeks.
Weight - A whopping 5 pounds and 3.5 ounces. Which is HUUUGE compared to my last update!.
Feeds - today she finally "latched-on" (sorry for the terminology Catherine!) and had a full feed from Mam!
Heart - No more apnea, de-saturations or issues with the open duct, but it still isn't fully closed so we'll keep a close eye on it
Temperature - She's currently in a normal cot, without any temperature control other than clothes, a small hat and socks (one of which she keeps hoofing off round the cot)
Noise - She's now shouting at feed times, nappy change times and generally at anyone who will listen, which is awesome, but I may regret saying that when it's 4am and she's at home doing it.... !!!
So, in a nutshell, I think we're not far off getting her home. Just to need to establish feeds and do a few more tests.... We can almost see the finish line!!!
However, it felt quite sad leaving the RVI. We've made some good friends over the last 13 weeks both patients and staff. I compared it to Stockholm syndrome, which the nurses didn't like as it suggests they're the prison guards.... :-P
Hopefully the next update will be my final one, as she'll be home and I probably won't have the time or energy to update this blog..... which, weirdly, I'm looking forward to.
Thanks
Geoff & Catherine
Monday 1 October 2012
Promotion at last!
Hi Everyone,
Alice is 7 weeks old tomorrow, yet still in 32nd week of gestation, so technically still 2 months early :-/
However, It's been quite a positive couple of weeks since I last updated you on progress, so here's the latest!:
Breathing: "See ya later CPAP!!!" - Alice has been promoted to Humacare and the nurses have been steadily reducing the flow, she's currently on level 3 (once it gets to 2 they move over to low-flow oxygen, which is the last stage :-D ). Oxygen between 22-28%, still has the odd dip but she doesn't need much help to pull it back to normal, normally just a bit of a wriggle. She has started a new game of "pull everything off my face and out of my mouth" recently, so the nurses have had to work a bit harder to replace tubes and keep her breathing prongs in her nose. Getting into mischief already, we're very proud!
Heart: The previously mentioned duct that hadn't closed is not causing any further problems, so other than keeping an eye on it, no further action required yet.
Eyes: First eye test done and dusted - no problems to report, although we already knew this from the wide-eyed staring she's started doing (mainly when my big ugly face is looming over the incubator!)
Lugs: no hearing tests just yet, so expecting this in the next couple of weeks
Weight: Alice joined the 1 kg club this morning (at last!), still on constant breast milk feed through a tube of around 7mm per hour. There is talk of moving to 2 hourly feeds through a syringe in the next couple of weeks, then eventually onto direct breast feeding at 34/35 weeks. Her arms and legs are filling out nicely too, so looking more like a baby and less like a baby bird :-)
Noises(!): Quite a few episodes of hiccups during our cuddles, which I've now named "squeekups" due to the tiny sound.
Other bits: her hair has gone a bit fairer, she doesn't like having her mouth cleaned (scowls at me!), she managed to sneeze 10 times in a row the other day (impressive), she now fits into some of her prem clothes which is a good sign too. last measurement was about 13.5 inches, but I'm sure she's a bit longer than that now too.
And now the headlines.... as of this morning she's been moved to the "Blue zone", which is much earlier than we expected. Needless to say we are both over the moon and a little bit in shock. The nurses and the doc's are all now talking about "when" she gets home, rather than "if".... so although she's still very small and needs a lot of help, we can almost see a tiny bit of light at the end of the tunnel. Almost.
Keep em crossed people
Geoff
p.s. I'm currently reading her "hippo's go beserk" as a bedtime story, I'm enjoying it more than she is I think, so thoroughly recommend it !
Alice is 7 weeks old tomorrow, yet still in 32nd week of gestation, so technically still 2 months early :-/
However, It's been quite a positive couple of weeks since I last updated you on progress, so here's the latest!:
Breathing: "See ya later CPAP!!!" - Alice has been promoted to Humacare and the nurses have been steadily reducing the flow, she's currently on level 3 (once it gets to 2 they move over to low-flow oxygen, which is the last stage :-D ). Oxygen between 22-28%, still has the odd dip but she doesn't need much help to pull it back to normal, normally just a bit of a wriggle. She has started a new game of "pull everything off my face and out of my mouth" recently, so the nurses have had to work a bit harder to replace tubes and keep her breathing prongs in her nose. Getting into mischief already, we're very proud!
Heart: The previously mentioned duct that hadn't closed is not causing any further problems, so other than keeping an eye on it, no further action required yet.
Eyes: First eye test done and dusted - no problems to report, although we already knew this from the wide-eyed staring she's started doing (mainly when my big ugly face is looming over the incubator!)
Lugs: no hearing tests just yet, so expecting this in the next couple of weeks
Weight: Alice joined the 1 kg club this morning (at last!), still on constant breast milk feed through a tube of around 7mm per hour. There is talk of moving to 2 hourly feeds through a syringe in the next couple of weeks, then eventually onto direct breast feeding at 34/35 weeks. Her arms and legs are filling out nicely too, so looking more like a baby and less like a baby bird :-)
Noises(!): Quite a few episodes of hiccups during our cuddles, which I've now named "squeekups" due to the tiny sound.
Other bits: her hair has gone a bit fairer, she doesn't like having her mouth cleaned (scowls at me!), she managed to sneeze 10 times in a row the other day (impressive), she now fits into some of her prem clothes which is a good sign too. last measurement was about 13.5 inches, but I'm sure she's a bit longer than that now too.
And now the headlines.... as of this morning she's been moved to the "Blue zone", which is much earlier than we expected. Needless to say we are both over the moon and a little bit in shock. The nurses and the doc's are all now talking about "when" she gets home, rather than "if".... so although she's still very small and needs a lot of help, we can almost see a tiny bit of light at the end of the tunnel. Almost.
Keep em crossed people
Geoff
p.s. I'm currently reading her "hippo's go beserk" as a bedtime story, I'm enjoying it more than she is I think, so thoroughly recommend it !
Wednesday 19 September 2012
Slowly but surely.... progress!
Hi all,
Apologies for the delay between updates, but it's been tough to get any time spare now that I'm juggling work with Hospital - I know, excuses excuses! (I'm currently typing this update from my desk in the office whilst munching down my lunch!).
So - what's the latest?, well, I'm pleased to say that it's been a positive few days.
Alice has surprised us a bit by continually progressing her breathing. I've mentioned previously about the mix of oxygen being quite low at around 24%, which is great and has continued. However, the level of pressure pumping the air in has also now been reduced. Just to give you context/reference point, the level has been stable at "7" for a good few weeks now, meaning that alice doesn't have to work as hard to draw the air in.
About a week ago, the doctors decided to reduce the level of pressure to 6. All good. No change. hurrah!So, it was reduced again to 5 a couple of days later. Still all good. As I type we're now on level 4, which is fantastic! (or "amazeballs" for the youngsters out there?!)
Now - We're keeping an open mind and not getting too carried away, as we all now know the rollercoaster is perfectly capable of going the other way at a moments notice.... But... Let's assume for a moment that she continued to be stable on low levels of oxygen and lower pressure over the coming days, the next steps would be to switch over to the final stage of breathing support - which is called humacare (spelling probably not accurate!). This is basically a small wire and prongs which go up the nose, removing the need for a full mask to be trapped onto her head. It provides only a small supplement of oxygen on a low pressure, meaning she's breathing more on her own, but just as importantly, we'll be able to see her face :-)
Other bits to update you on:
That's it for now, but coming soon.... clothes, more milk and hopefully entry to the "1 killogram club"
Thanks
Geoff
p.s. here's a pic the nurse got whilst her mask was off the other day :-D :
Apologies for the delay between updates, but it's been tough to get any time spare now that I'm juggling work with Hospital - I know, excuses excuses! (I'm currently typing this update from my desk in the office whilst munching down my lunch!).
So - what's the latest?, well, I'm pleased to say that it's been a positive few days.
Alice has surprised us a bit by continually progressing her breathing. I've mentioned previously about the mix of oxygen being quite low at around 24%, which is great and has continued. However, the level of pressure pumping the air in has also now been reduced. Just to give you context/reference point, the level has been stable at "7" for a good few weeks now, meaning that alice doesn't have to work as hard to draw the air in.
About a week ago, the doctors decided to reduce the level of pressure to 6. All good. No change. hurrah!So, it was reduced again to 5 a couple of days later. Still all good. As I type we're now on level 4, which is fantastic! (or "amazeballs" for the youngsters out there?!)
Now - We're keeping an open mind and not getting too carried away, as we all now know the rollercoaster is perfectly capable of going the other way at a moments notice.... But... Let's assume for a moment that she continued to be stable on low levels of oxygen and lower pressure over the coming days, the next steps would be to switch over to the final stage of breathing support - which is called humacare (spelling probably not accurate!). This is basically a small wire and prongs which go up the nose, removing the need for a full mask to be trapped onto her head. It provides only a small supplement of oxygen on a low pressure, meaning she's breathing more on her own, but just as importantly, we'll be able to see her face :-)
Other bits to update you on:
- Weight - a mighty 1 pound 10 ounces now.
- Heart - the duct that I mentioned previously that needs to close has shrunk a little bit, but still not closed. The approach is the same though, it's not causing her any problems so we continue to keep an eye on it. There is every chance that it might close on it's own, if not, medication and then surgery are the next steps.
- Head - She's really having a good look around now, although sight and hearing tests aren't conducted till around 6 weeks I'm told, it looks like she's already holding her gaze on us and reacting to our voices. Which is great!
- "plumbing" - yes, it all works. Enough said. Although she is developing a habit of waiting for the nappy to come off before "opening fire"!
- Noise - no sustained crying yet, which is apparently normal, just the occasional squeek or shout. I'm assured that she'll make up for this in time, so no complaints here.
That's it for now, but coming soon.... clothes, more milk and hopefully entry to the "1 killogram club"
Thanks
Geoff
p.s. here's a pic the nurse got whilst her mask was off the other day :-D :
Thursday 13 September 2012
Afternoon all,
It seems like a good time to give an update on how things are progressing:
The rollercoaster "dipped" on Sunday night unfortunately. We recieved a call at 6am Monday morning to notify us that Alice was needing lots of help breathing and as a result she had to go back on to the more powerful version of CPAP with a heavier mix of oxygen. At the same time she encountered some problems with her tummy and bowels, so feeding was stopped whilst the doctors reviewed her. The decision was quickly made to get her on a broad spectrum of anti-biotics to treat any potential infection. (Each time any symptons of an infection are presented a blood test is taken and senf off to the lab, this takes at least 48 hours for the results to show, but rather than wait the doctors just pump in the anti-biotics anyway. Better to be safe than sorry!).
What didn't make it any easier was that I'd decided to go back to work on Monday morning, so was a little pre-occupied whilst we waited for her to stabilise. But as usual, my awesome colleagues at Sage were more than understanding :-)
The good news is that by Monday afternoon breathing had improved - so back onto CPAP. Amazingly, within a day of going back onto CPAP, Alice's required levels of oxygen were lower than before the weekend, needing only 24% (remember - we breath 21.8%). Even better news was that yesterday we recieved the results of the blood test which showed no infection.
So, It's Thursday today and the rollercoaster climbs once more. We started slowly once more with the milk and some nutrients so as not to overload her, keeping a close eye on tummy and digestion as we go. Despite all this, her weight remains at 1lb 9 ounces, but she has grown a bit in length and her features look a bit more developed.
Other good bits include:
Thanks
Geoff
It seems like a good time to give an update on how things are progressing:
The rollercoaster "dipped" on Sunday night unfortunately. We recieved a call at 6am Monday morning to notify us that Alice was needing lots of help breathing and as a result she had to go back on to the more powerful version of CPAP with a heavier mix of oxygen. At the same time she encountered some problems with her tummy and bowels, so feeding was stopped whilst the doctors reviewed her. The decision was quickly made to get her on a broad spectrum of anti-biotics to treat any potential infection. (Each time any symptons of an infection are presented a blood test is taken and senf off to the lab, this takes at least 48 hours for the results to show, but rather than wait the doctors just pump in the anti-biotics anyway. Better to be safe than sorry!).
What didn't make it any easier was that I'd decided to go back to work on Monday morning, so was a little pre-occupied whilst we waited for her to stabilise. But as usual, my awesome colleagues at Sage were more than understanding :-)
The good news is that by Monday afternoon breathing had improved - so back onto CPAP. Amazingly, within a day of going back onto CPAP, Alice's required levels of oxygen were lower than before the weekend, needing only 24% (remember - we breath 21.8%). Even better news was that yesterday we recieved the results of the blood test which showed no infection.
So, It's Thursday today and the rollercoaster climbs once more. We started slowly once more with the milk and some nutrients so as not to overload her, keeping a close eye on tummy and digestion as we go. Despite all this, her weight remains at 1lb 9 ounces, but she has grown a bit in length and her features look a bit more developed.
Other good bits include:
- Both eyes open regularly and having a good look around, she's holding her gaze on us a bit now when we talk, which is a good sign.
- Shes still very active and as soon as the nappy comes off her legs and arms are waving all over the place
- She's smiled a few times, although we're not sure if this is wind or general contentment!
- Her legs are now a mighty 75 milimeteres long!!!
Thanks
Geoff
Saturday 8 September 2012
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