Thank you once again for your warm, encouraging comments! Well we've nearly a week down at home now and it's been great! Ashling has found it all quite strange and we still haven't managed to get smiles from her, which we naively thought would happen the minute we got her out of the hospital. She still isn't really sure what's going on but she's pretty interested in all the new things she's experiencing. Ger and I are really enjoying being at home though it's been really full on! Not living in the house for a few months has left us with LOTS of things to do but we are delighted to be able to finally do them!
I thought that we'd be settled in a few days and that I'd been well and truly on the road to contacting friends who are long overdue calling or writing to, but it hasn't really happened like that. It’s going to take us a while to settle in so please forgive us if it takes us a while to get in contact properly.
Ashling is doing well. We have 2 tanks of oxygen, a big one and a smaller portable one. The big one has a long tube so we can pretty much walk around the whole house with her, taking care that we don't trip over the blooming thing! The portable one is great for when we go out for a walk or something. New tanks are delivered weekly. The plan is to leave her on the same amount of oxygen for a couple of weeks and then to try weaning it down slowly, with the hope that we can get her off it in a few months. In relation to her feeding, she's still finding it really hard. She has forgotten how to suck/swallow/breathe at the same time (since her surgery) so we have to be very patient with her. Unfortunately, she has no interest in my boobs (something Ger can't get his head around!) but I have been expressing since she was born so she's had breast milk to date. She's now starting to take some milk from a specialized bottle. She sucks for about 20 mins each feed (manages to fool us every time - we think she's sucked half the bottle!), but she usually only manages to get about 10-20 mls (of a 120mls feed). So we end up putting the rest of the feed down her nasal gastric tube (tube down her nose to her tummy). Again, this is another contraption that we're hoping will go with time cause she doesn't like it and tries to pull it out. She succeeded the other night and poor Ger had to put another one down, but did a mighty job I have to say despite the fact that she went absolutely mental! She's getting very strong now and when she doesn’t want something, she's not shy about letting us know! It's great though cause it's a good sign of her progress. Otherwise, she's continuing to wear splints on her hands and feet when she sleeps and she doesn't make any fuss about that, thank God.
That's about it for now. Thanks so much for your interest and ongoing comments on this site. Even though Ashling is home now, we will still keep this blog going occasionally, letting you know of any major updates, and we'll continue to put new photos of Ashling on it. We've really enjoyed doing this blog and it has saved us from repeating the same news about Ash over and over again. At least now it's good news so I don't mind repeating that half as much! It's been wonderful hearing from people whom we haven't talked to for ages, thanks again and keep it up. We are at home now and our landline is 09 4268812.
Take Care, Lots of love always, Car, Ger and Ashling xxx
Hello again
Tuesday, January 22, 2008
Thursday, January 17, 2008
We're home, We're home, We're home
Hi Everyone,
We are delighted to report that we arrived home this afternoon.Ashling was examined this morning and the Doctor gave us the green light to go home. She didn't have to say it twice; we had the car already packed!!!We spent last night in a parent room which was a room with just the three of us, a warm-up to being at home and it all went well so now we are at home and confident that we can manage on our own....time will tell!!We have been waiting for this day for so long it was very exciting coming home in the car, well for us anyway, Ashling slept all the way! She is finding her new surroundings strange but will hopefully settle in a few days.
We had a discharge meeting with some of the doctors involved in her case and they explained that although she was going home, she is still a very vulnerable little girl. Because she is reliant on oxygen due to her compromised lungs, even something as small as a cough or a cold could be a serious issue for her particularly over the next few months. They have asked us to be responsible parents and not to take her to any busy public places as she is susceptible to bugs that anyone carries. So we won't be taking her to shopping centres etc. The same goes for all visitors and while we welcome a visit from our friends and family once we settle back, we would ask that you please think twice about calling if you are in any way sick or living with anyone who is sick. Just postpone and come another time.This may sounds like we are going to wrap her in cotton wool, but 3 months is enough hospital for our little munchkin.
Anyway, we are delighted to be at home, another big step.
Thank you to everyone for your prayers and support they have really helped in getting us this far. We cannot thank people enough at the hospital, everyone has been so good to us and some have gone far beyond the call of duty, Caroline and I are deeply grateful for your professionalism and friendship in helping us to get our little ball of joy home. Also everyone at Ronald McDonald has been wonderful and staying there has made our life so much easier over the past 12 weeks.Finally to our family and friends, who have babysat, cooked us dinners, taken us out and come to visit us, thank you all, you have been wonderful and we expect you to continue to be wonderful!!! Only messing!
That’s it for now from a very happy Mammy and Daddy
We are delighted to report that we arrived home this afternoon.Ashling was examined this morning and the Doctor gave us the green light to go home. She didn't have to say it twice; we had the car already packed!!!We spent last night in a parent room which was a room with just the three of us, a warm-up to being at home and it all went well so now we are at home and confident that we can manage on our own....time will tell!!We have been waiting for this day for so long it was very exciting coming home in the car, well for us anyway, Ashling slept all the way! She is finding her new surroundings strange but will hopefully settle in a few days.
We had a discharge meeting with some of the doctors involved in her case and they explained that although she was going home, she is still a very vulnerable little girl. Because she is reliant on oxygen due to her compromised lungs, even something as small as a cough or a cold could be a serious issue for her particularly over the next few months. They have asked us to be responsible parents and not to take her to any busy public places as she is susceptible to bugs that anyone carries. So we won't be taking her to shopping centres etc. The same goes for all visitors and while we welcome a visit from our friends and family once we settle back, we would ask that you please think twice about calling if you are in any way sick or living with anyone who is sick. Just postpone and come another time.This may sounds like we are going to wrap her in cotton wool, but 3 months is enough hospital for our little munchkin.
Anyway, we are delighted to be at home, another big step.
Thank you to everyone for your prayers and support they have really helped in getting us this far. We cannot thank people enough at the hospital, everyone has been so good to us and some have gone far beyond the call of duty, Caroline and I are deeply grateful for your professionalism and friendship in helping us to get our little ball of joy home. Also everyone at Ronald McDonald has been wonderful and staying there has made our life so much easier over the past 12 weeks.Finally to our family and friends, who have babysat, cooked us dinners, taken us out and come to visit us, thank you all, you have been wonderful and we expect you to continue to be wonderful!!! Only messing!
That’s it for now from a very happy Mammy and Daddy
Thursday, January 10, 2008
Light at the end of the tunnel!!!!
Well the word on the street is that - if Ashling keeps doing what's she's doing....she'll be going home in the next couple of weeks!
She's been getting stronger and stronger and her oxygen requirements are minimal now. So hopefully, all things considered, once her latest casts are off, her oxgyen remains stable and her vaccinations are done, we'll be ready for home. Unfortunately, she'll go home on some oxygen and with a feeding tube, but both of these should only be required in the short term only. Certainly - looking at the improvement she has made over the last 2 weeks, we wouldn't expect her to need them for very long.
We are thrilled!!!
She's been getting stronger and stronger and her oxygen requirements are minimal now. So hopefully, all things considered, once her latest casts are off, her oxgyen remains stable and her vaccinations are done, we'll be ready for home. Unfortunately, she'll go home on some oxygen and with a feeding tube, but both of these should only be required in the short term only. Certainly - looking at the improvement she has made over the last 2 weeks, we wouldn't expect her to need them for very long.
We are thrilled!!!
Tuesday, January 1, 2008
Happy New Year Everyone!
Sorry for being so slack over Christmas. We had intended on doing a little Christmas video etc but it just never happened. We did take photos though and we will upload them in the next few days.
Just a quick update on Ashling. She has made great progress over the Christmas period. The doctors have been able to reduce her oxygen, and finally, there seems to be an end in sight!
More on her progress over the next week. It's a gorgeous day and I want to get out for a walk while she's asleep!
Hope you all had an enjoyable New Year's Eve.
Just a quick update on Ashling. She has made great progress over the Christmas period. The doctors have been able to reduce her oxygen, and finally, there seems to be an end in sight!
More on her progress over the next week. It's a gorgeous day and I want to get out for a walk while she's asleep!
Hope you all had an enjoyable New Year's Eve.
Saturday, December 29, 2007
Happy Birthday Mam
Happy Birthday Mam
We put this quick video clips together to wish you a Very Happy 60th Birthday from the three of us. We are really sorry we are not there to celebrate it with you but we will celebrate again when you come over.
Lots of love
Ger, Caroline and Ashling
Click on the below links to view
http://www.youtube.com/watch?v=m9ZcYbUVWK8
http://www.youtube.com/watch?v=SjJQ1elOLbA
We put this quick video clips together to wish you a Very Happy 60th Birthday from the three of us. We are really sorry we are not there to celebrate it with you but we will celebrate again when you come over.
Lots of love
Ger, Caroline and Ashling
Click on the below links to view
http://www.youtube.com/watch?v=m9ZcYbUVWK8
http://www.youtube.com/watch?v=SjJQ1elOLbA
Monday, December 24, 2007
Happy Christmas Everyone.
Hello there,
Happy Christmas to one and all.
Things are pretty much the same from this end. But I am delighted to say that Ashling is still making progress bit by bit every day. "Slow and steady wins the race" they say, we certainly are hoping so.
Our good friends Lavina and Tom arrived from Ireland on Saturday and it is great to have them around for Christmas. We are slighted restricted in what we can do with them as we try to stay as close to the hospital as possible, so there will be no boozy nights out but we are all older and more mature nowadays anyway!!! (or so they say). We also have my cousin, Mairead and her other half, Keith, arriving for a few days, and to top it all off, we have 2 close friends from Sydney, Sonia nd Luis arriving on the 26th so we have a very social time ahead!! Poor Ashling will be completely forgoten about...NOT!
We are heading to Caroline's sister, Siobhan's, for Christmas day/evening for dinner with some of her family so we are looking forward to that.
I hope you all have a peacful and happy christmas. All the very best for the new year and I hope Santy comes!!
Finally a quick word of thanks to you all. We cannot believe the warmth, love and support we are receiving through this blog, little did we know when we were setting it up. We have heard for friends far and near, some people we have hardly talked to since our college days. Its fantastic and great to be back in contact. I hope we can keep it up.
Merry Christmas Everyone.
Ger, Caroline and Ashling
Happy Christmas to one and all.
Things are pretty much the same from this end. But I am delighted to say that Ashling is still making progress bit by bit every day. "Slow and steady wins the race" they say, we certainly are hoping so.
Our good friends Lavina and Tom arrived from Ireland on Saturday and it is great to have them around for Christmas. We are slighted restricted in what we can do with them as we try to stay as close to the hospital as possible, so there will be no boozy nights out but we are all older and more mature nowadays anyway!!! (or so they say). We also have my cousin, Mairead and her other half, Keith, arriving for a few days, and to top it all off, we have 2 close friends from Sydney, Sonia nd Luis arriving on the 26th so we have a very social time ahead!! Poor Ashling will be completely forgoten about...NOT!
We are heading to Caroline's sister, Siobhan's, for Christmas day/evening for dinner with some of her family so we are looking forward to that.
I hope you all have a peacful and happy christmas. All the very best for the new year and I hope Santy comes!!
Finally a quick word of thanks to you all. We cannot believe the warmth, love and support we are receiving through this blog, little did we know when we were setting it up. We have heard for friends far and near, some people we have hardly talked to since our college days. Its fantastic and great to be back in contact. I hope we can keep it up.
Merry Christmas Everyone.
Ger, Caroline and Ashling
Tuesday, December 18, 2007
What exactly is wrong with Ashling?
Hmmmm - an interesting question indeed and one that MANY doctors have been pondering over for a couple of months now.
Many of you have asked me this question and the answer is - we don't know yet! We don't know what exactly is wrong with Ashling or what caused this.
Both Ashling and Ciara came into this world with stiff limbs. This is not because they were squashed in the womb. On the contrary, I had excess fluid in both sacs so they had plenty of room to move around. However, when an autopsy was done on Ciara, it showed that she also had stiff limbs, but this did not cause her death. The coroner expected to find a heart defect or a brain haemorrhage, but found neither. Unfortunately this means that we will never know why she died but it wasn't due to any obvious "event", as they put it.
As you know, in addition to having stiff limbs, Ashling's diaphragm was elevated. Again, a mystery!
What will happen over the next few months is that, depending on how Ashling develops, they will be able to diagnose her problem properly (hopefully) i.e give it a name! Then we will get some idea of her future prognosis. And we will hopefully find out the cause and look at its implications.
The only thing we know right now is that Ashling is improving everyday and it looks like she'll lead a normal enough life. Only time will tell with Ash but it looks like she has normal intellect and that her problems are mostly physical, which will hopefully be rectified with time. Whatever happened to the girls was not the result of all the drugs and alcohol that I consumed while I was pregnant (Not!). The doctors have reassured me hundreds of times that this was not my fault in any way.
Anyway, hope that this answers some of your questions - for now.
Many of you have asked me this question and the answer is - we don't know yet! We don't know what exactly is wrong with Ashling or what caused this.
Both Ashling and Ciara came into this world with stiff limbs. This is not because they were squashed in the womb. On the contrary, I had excess fluid in both sacs so they had plenty of room to move around. However, when an autopsy was done on Ciara, it showed that she also had stiff limbs, but this did not cause her death. The coroner expected to find a heart defect or a brain haemorrhage, but found neither. Unfortunately this means that we will never know why she died but it wasn't due to any obvious "event", as they put it.
As you know, in addition to having stiff limbs, Ashling's diaphragm was elevated. Again, a mystery!
What will happen over the next few months is that, depending on how Ashling develops, they will be able to diagnose her problem properly (hopefully) i.e give it a name! Then we will get some idea of her future prognosis. And we will hopefully find out the cause and look at its implications.
The only thing we know right now is that Ashling is improving everyday and it looks like she'll lead a normal enough life. Only time will tell with Ash but it looks like she has normal intellect and that her problems are mostly physical, which will hopefully be rectified with time. Whatever happened to the girls was not the result of all the drugs and alcohol that I consumed while I was pregnant (Not!). The doctors have reassured me hundreds of times that this was not my fault in any way.
Anyway, hope that this answers some of your questions - for now.
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