Hi all
On Tuesday 22 December, Tom and I went back to the hospital to meet with Alannah's surgeon, cardiologist and CLN. The purpose of these meetings after a person has passed is to go through the case with the team. In our case, we wanted to make sure that what we knew was right - and it was.
The surgeon told us that since Alannah he has had two more cases with clotting problems and he has performed another procedure on these children. It's a form of patch that has been successful on both. If he had to do Alannah's operations again, he would have performed this patch instead of successive shunts. This did not upset us. There always has to be one case that changes how future ones are carried out. Unfortunately for us, we had to lose Alannah but we like to think that she has played a part in giving these children a chance of a future. I am sure though that others have lost in order for us to have had what we did with her.
Alannah's corneas were not used as donor tissue and they did not know exactly why. It is thought that perhaps they were too small. This was a pity because Alannah's eyes were open so seldom, it would have been great to know that someone else was given the gift of sight because of her. But that's the way it goes at times.
We have had a lovely Christmas with Mikey and our families. It has been emotional and hard - something that I had not expected for some bizarre reason.
We will be holding a fundraising event in the Phoenix Park on 27 March 2010 to celebrate Alannah's birthday and would love it if you could all support it. We have created another blog page Forever Blowing Bubbles Day for it. Click on the link on the left to read all about it.
We are looking forward to a happier and less eventful 2010 filled with good health, happiness and positivity and would like to wish you all the same. Thank you for your continued support and love.
Love
Eveline, Tom and Mikey xxxx - we'll always add a fourth kiss from Alannah
Sunday, December 27, 2009
Tuesday, May 19, 2009
One month on ............
Dear all
I've thought long and hard about updating the blog today. It's been a long month with lots of ups and downs. We got Alannah's ashes back on 29 April and have her here at home with us. This site was never meant to be a "woe is me" site for when she had gone and it won't be. This may well be the last post. Thank you all for your support.
I actually just read the poem below for the first time today - it couldn't be more apt.
Hugs From Heaven
When you feel a gentle breeze
Caress you when you sigh
It's a hug sent from Heaven
From a loved one way up high.
If a soft and tender raindrop
Lands upon your nose
They've added a small kiss
As fragile as a rose.
If a song you hear fills you
With a feeling of sweet love
It's a hug sent from Heaven
From someone special up above.
If you awaken in the morning
To a bluebird's chirping song
It's music sent from Heaven
To cheer you all day long.
If tiny little snowflakes
Land upon your face
It's a hug sent from Heaven
Trimmed with Angel lace.
So keep the joy in your heart
If you're lonely my dear friend
Hugs that are sent from Heaven
A broken heart will mend.
Missing and loving Alannah every minute of every day.
Love Eveline, Tom and Mikey xxxx
I've thought long and hard about updating the blog today. It's been a long month with lots of ups and downs. We got Alannah's ashes back on 29 April and have her here at home with us. This site was never meant to be a "woe is me" site for when she had gone and it won't be. This may well be the last post. Thank you all for your support.
I actually just read the poem below for the first time today - it couldn't be more apt.
Hugs From Heaven
When you feel a gentle breeze
Caress you when you sigh
It's a hug sent from Heaven
From a loved one way up high.
If a soft and tender raindrop
Lands upon your nose
They've added a small kiss
As fragile as a rose.
If a song you hear fills you
With a feeling of sweet love
It's a hug sent from Heaven
From someone special up above.
If you awaken in the morning
To a bluebird's chirping song
It's music sent from Heaven
To cheer you all day long.
If tiny little snowflakes
Land upon your face
It's a hug sent from Heaven
Trimmed with Angel lace.
So keep the joy in your heart
If you're lonely my dear friend
Hugs that are sent from Heaven
A broken heart will mend.
Missing and loving Alannah every minute of every day.
Love Eveline, Tom and Mikey xxxx
Friday, April 24, 2009
Eyes wide open
Dear all
One of the things that I have found hard is that Alannah's eyes were rarely open. I think I've said before that in her 20 days with us, if she had her eyes open for a total of 10 minutes that would be all we had seen. We only have one photo of Alannah with her eyes partially open.
One day when Tom and I were just about to leave the ward, Alannah opened her eyes. We couldn't leave when she was looking at us. I took down the side of the cot and put my head down beside her - looking straight into her eyes and probably giving the poor mite the fright of her life! :-) - but it was so important to me that she could see us and know that both her mum and dad were there. She went back to sleep after about 2 minutes and we left - happy with the knowledge that she had seen us and that we had seen her gorgeous eyes.
Today Noelle and mum came over with a lovely gift - a photo from Noelle's phone of Alannah with her eyes open! It's the best gift that anyone could have given us. I've put it up on her profile here so that you can all see.
Take care all
Love
Ev, Tom & Mikey xxxx
One of the things that I have found hard is that Alannah's eyes were rarely open. I think I've said before that in her 20 days with us, if she had her eyes open for a total of 10 minutes that would be all we had seen. We only have one photo of Alannah with her eyes partially open.
One day when Tom and I were just about to leave the ward, Alannah opened her eyes. We couldn't leave when she was looking at us. I took down the side of the cot and put my head down beside her - looking straight into her eyes and probably giving the poor mite the fright of her life! :-) - but it was so important to me that she could see us and know that both her mum and dad were there. She went back to sleep after about 2 minutes and we left - happy with the knowledge that she had seen us and that we had seen her gorgeous eyes.
Today Noelle and mum came over with a lovely gift - a photo from Noelle's phone of Alannah with her eyes open! It's the best gift that anyone could have given us. I've put it up on her profile here so that you can all see.
Take care all
Love
Ev, Tom & Mikey xxxx
Thursday, April 23, 2009
Remembering Alannah
Dear all
You must think I'm crazy still updating this blog - but it appears that writing (or typing) is my way of getting through this surreal time. I don't know what I'm going to do when I've nothing more to write! :-)
It has occurred to us that no-one, besides immediate family, got to know Alannah. You may wonder how you get to know a little child over such a short period of time - most of which was spent under the care of the nursing staff of the hospital - but we did get to know her and we would like to share what we learnt with you.
You must think I'm crazy still updating this blog - but it appears that writing (or typing) is my way of getting through this surreal time. I don't know what I'm going to do when I've nothing more to write! :-)
It has occurred to us that no-one, besides immediate family, got to know Alannah. You may wonder how you get to know a little child over such a short period of time - most of which was spent under the care of the nursing staff of the hospital - but we did get to know her and we would like to share what we learnt with you.
Remembering Alannah
Her hair was black, her skin so soft, her eyes were navy blue
Although they seldom opened, they now watch over you.
She slept often and soundly, with her hands curled up under her chin
It’s a pose we remember fondly – as if guarding herself from within.
Alannah was a fighter – determined, stubborn and brave
She knew just what she wanted and what we could, we gave.
From sucking on her soother to spitting it out when done
This determined young lady always tried to make sure she won.
One day she blocked a receptor, her hand was in the way
I tried to move it gently but Alannah had something to say.
She kept the hand there firmly, it was nearly impossible to move
As I lifted the fingers individually, Alannah put them back and proved
The strength within her was fierce and she knew what felt right for her
We smiled and said - Good on you. Who are we to deter?
But I was still her mammy and not to be outdone
Prised the hand away from the receptor and said – Now remember hon, I’m the mum!
We fed her some bottles and changed her nappy too
We held her close a number of times and rocked her to and fro.
Alannah gave such strength and comfort, we were amazed from one so small
But we will always remember the feeling, she gave it to one and all.
So when you see the cherry blossom fall slowly from the tree
Remember our Alannah who’s beautiful, strong and free.
For Alannah with all our love
Mammy, Daddy and your brother Mikey
xxxx
Her hair was black, her skin so soft, her eyes were navy blue
Although they seldom opened, they now watch over you.
She slept often and soundly, with her hands curled up under her chin
It’s a pose we remember fondly – as if guarding herself from within.
Alannah was a fighter – determined, stubborn and brave
She knew just what she wanted and what we could, we gave.
From sucking on her soother to spitting it out when done
This determined young lady always tried to make sure she won.
One day she blocked a receptor, her hand was in the way
I tried to move it gently but Alannah had something to say.
She kept the hand there firmly, it was nearly impossible to move
As I lifted the fingers individually, Alannah put them back and proved
The strength within her was fierce and she knew what felt right for her
We smiled and said - Good on you. Who are we to deter?
But I was still her mammy and not to be outdone
Prised the hand away from the receptor and said – Now remember hon, I’m the mum!
We fed her some bottles and changed her nappy too
We held her close a number of times and rocked her to and fro.
Alannah gave such strength and comfort, we were amazed from one so small
But we will always remember the feeling, she gave it to one and all.
So when you see the cherry blossom fall slowly from the tree
Remember our Alannah who’s beautiful, strong and free.
For Alannah with all our love
Mammy, Daddy and your brother Mikey
xxxx
Wednesday, April 22, 2009
Alannah's Farewell
Dear all
Well yesterday Alannah started her official journey from this world to a far more peaceful place. Everything was wonderful - just as we wanted it to be. We had a small service in the chapel at the hospital - the staff were great and created a booklet with the nicest reflections I have ever seen. I may post some at a later date.
A number of you came to see Alannah before she went and it was lovely to meet you - we know that you were pleased to have the opportunity to see this beautiful little one who touched so many people. Alannah has the capacity to give such great comfort. I got great strength from her when I held her close, touched her face or held her hand. Amazing that someone so small had such a strong force within her that it could leave you feeling content. I know that our families got great comfort from her also when she came home and they too held her close and said goodbye.
The cremation was lovely - perfect for her. To those of you who were able to come, thank you. When we arrived I saw this huge crowd of people and said to Tom "Are all of these here for Alannah?" - we then thought there was another funeral on, but as the car drew nearer we recognised so many faces and were delighted that you came to say goodbye. Tom was so proud to bring her in. We have carried her every step of this journey from the time she was conceived to the time she physically had to go. I have put a link onto this blog to the song that we played at the end of the cremation - I just came across it on U-Tube. It's a song from a Celine Dion album that I have had for years. It was written for her niece who passed away aged 10. As Tom has said so many times - it is perfect.
Please do not cry for Alannah - we don't. She is in a much better place - her time with us was not easy for her - but we did get to spend some time with her, getting to know her and we will always be grateful for the time we had with her. We are sad for the time we will not have. The chance to see her grow up, the chance for Mikey and her to play together, the chance to use her name when we want her to come in for dinner. But we will cope with that in time.
If you see us when you are cradling a newborn or walking into a room with your little daughter, please don't feel you should avoid us or not know what to say. We are delighted for you and what you have. We would never wish this on our worst enemy - not that we have any! - or more importantly on any friend or family member. We do have to go through the whole grief process and we don't know how long it will take - but we are still Ev, Tom and Mikey and are probably even better and stronger people than we were before Alannah arrived.
We look forward to seeing you all soon.
Take care all
Love
Ev, Tom & Mikey xxxx
Well yesterday Alannah started her official journey from this world to a far more peaceful place. Everything was wonderful - just as we wanted it to be. We had a small service in the chapel at the hospital - the staff were great and created a booklet with the nicest reflections I have ever seen. I may post some at a later date.
A number of you came to see Alannah before she went and it was lovely to meet you - we know that you were pleased to have the opportunity to see this beautiful little one who touched so many people. Alannah has the capacity to give such great comfort. I got great strength from her when I held her close, touched her face or held her hand. Amazing that someone so small had such a strong force within her that it could leave you feeling content. I know that our families got great comfort from her also when she came home and they too held her close and said goodbye.
The cremation was lovely - perfect for her. To those of you who were able to come, thank you. When we arrived I saw this huge crowd of people and said to Tom "Are all of these here for Alannah?" - we then thought there was another funeral on, but as the car drew nearer we recognised so many faces and were delighted that you came to say goodbye. Tom was so proud to bring her in. We have carried her every step of this journey from the time she was conceived to the time she physically had to go. I have put a link onto this blog to the song that we played at the end of the cremation - I just came across it on U-Tube. It's a song from a Celine Dion album that I have had for years. It was written for her niece who passed away aged 10. As Tom has said so many times - it is perfect.
Please do not cry for Alannah - we don't. She is in a much better place - her time with us was not easy for her - but we did get to spend some time with her, getting to know her and we will always be grateful for the time we had with her. We are sad for the time we will not have. The chance to see her grow up, the chance for Mikey and her to play together, the chance to use her name when we want her to come in for dinner. But we will cope with that in time.
If you see us when you are cradling a newborn or walking into a room with your little daughter, please don't feel you should avoid us or not know what to say. We are delighted for you and what you have. We would never wish this on our worst enemy - not that we have any! - or more importantly on any friend or family member. We do have to go through the whole grief process and we don't know how long it will take - but we are still Ev, Tom and Mikey and are probably even better and stronger people than we were before Alannah arrived.
We look forward to seeing you all soon.
Take care all
Love
Ev, Tom & Mikey xxxx
Monday, April 20, 2009
Alannah is now a guardian angel
Dear all
It is with a heavy heart that we write this blog update. For those of you who have not already heard, our gorgeous and courageous daughter passed away at 9:10 yesterday morning.
All 3 of the shunt operations she had on Friday failed due to clotting. On Saturday the team thought that they had spotted a reason for the third one closing and they did not think it was a clotting problem. They performed another catheter procedure to investigate it and discovered that it was another clot. They brought her down for a fourth operation and it seemed - just like all the others - to have worked. Unfortunately at approx 2:30 am Alannah had a cardiac arrest and required open heart massage to be resuscitated. At that stage, even before talking to the team, Tom and I decided that she had had enough and that we didn't want anything else to be done for her. Upon meeting the team, we all agreed that if her sats went down again, we would let her go. At 6am her sats went down drastically and we requested that her medication be turned off. Tom and I got to hold her and spend some time with her. At 9am we requested that the ventilator be turned off and at 9:10 she passed peacefully away.
We brought Alannah home with us and Mikey got to see her and spend some time with her. We are of course devastated but are taking comfort from little things. It's the next few days, weeks and months that will be the hardest - watching other little girls walk down the street with their family and knowing that we will never do that with Alannah but we know that we will get through this. Thank you all for your love, support and prayers over the last few months. We have been inspired by Alannah's spirit and fight. We will always be the parents to two children - Mikey and Alannah, both of whom make us so proud.
Alannah will be cremated tomorrow but will always be with us in our hearts.
Love
Eveline, Tom and Mikey xxx
It is with a heavy heart that we write this blog update. For those of you who have not already heard, our gorgeous and courageous daughter passed away at 9:10 yesterday morning.
All 3 of the shunt operations she had on Friday failed due to clotting. On Saturday the team thought that they had spotted a reason for the third one closing and they did not think it was a clotting problem. They performed another catheter procedure to investigate it and discovered that it was another clot. They brought her down for a fourth operation and it seemed - just like all the others - to have worked. Unfortunately at approx 2:30 am Alannah had a cardiac arrest and required open heart massage to be resuscitated. At that stage, even before talking to the team, Tom and I decided that she had had enough and that we didn't want anything else to be done for her. Upon meeting the team, we all agreed that if her sats went down again, we would let her go. At 6am her sats went down drastically and we requested that her medication be turned off. Tom and I got to hold her and spend some time with her. At 9am we requested that the ventilator be turned off and at 9:10 she passed peacefully away.
We brought Alannah home with us and Mikey got to see her and spend some time with her. We are of course devastated but are taking comfort from little things. It's the next few days, weeks and months that will be the hardest - watching other little girls walk down the street with their family and knowing that we will never do that with Alannah but we know that we will get through this. Thank you all for your love, support and prayers over the last few months. We have been inspired by Alannah's spirit and fight. We will always be the parents to two children - Mikey and Alannah, both of whom make us so proud.
Alannah will be cremated tomorrow but will always be with us in our hearts.
Love
Eveline, Tom and Mikey xxx
Saturday, April 18, 2009
Update on Alannah's operation
Hi all
Five years ago yesterday Tom and I got married. If you had asked us then the old famous interview question "Where do you see yourself in five years time?" , we would never have thought of the absolute nightmare that we all went through yesterday.
Alannah was first on the list for her operation yesterday. We brought her down to the theatre and kissed her good luck. We were nervous but happy that she was getting what she needed. At around noon our CNS told us that Alannah had been a bit unstable throughout the procedure. Her blood pressure was very low and her oxygen saturation levels were also low. Then she dropped the bombshell that upon return to ICU, they did an echo on her and it showed a clot in the shunt they had just put in. It would have to be redone. We were devastated.
We went in to see her in ICU and she looked terrible. Bruised and pale, hands down by her side (Alannah likes to have her hands up under her chin or on her chest). There were five nurses working around her frantically and everyone looked at one another with "that look" when they saw us. We left quite quickly as we felt we were in the way.
At around 2 o'clock she went down for a replacement shunt. At 5.30 the CNS told us all had gone very well and she had tolerated the procedure very well - we were so relieved. 30 mins later we were told that her sats had gone down again and they had to do another echo - another clot was detected. At this stage we were worried at how someone so small would be able to cope with another procedure. The team assured us that her heart has a mechanical problem, the rest of her is good and strong and healthy and they would do another procedure.
At 11:15 Alannah bravely went down for her 3rd operation. When she came back from theatre, her oxygen blood levels (sats) were in the 50's - the team had expected around 100 as this was a different type of shunt that would push the blood to the lungs with a brute force. One of her lungs had also partially collapsed. We were called at 2:15 to see her and it's fair to say that we just felt sheer despair and anger looking at her sats. What has our little girl done to deserve this? She looks so fragile but is so strong.
At 6:00 this morning her sats were between 75 and 85. The nurse looking after her was thrilled. At the moment - as far as we know (cos we took a quick trip to mums) - her sats are between 60 and 80. Alannah still has a long road ahead. Yesterday showed us just how unpredictable life in a hospital can be. I know I don't have to ask you to pray for her or think positive thoughts for her as you're doing so much already. We just have to wait and see how she recovers.
We bumped into her surgeon this morning and he is pleased and cautious. He told us he had never had to do 3 shunts on a baby but hastily added - there's always a first! I'm wondering at this stage if Alannah has developed an early crush on the man and that's why she's required these surgeries! ;-) He is a remarkable man. He carried out all of her procedures yesterday. The staff in the hospital are totally amazing and the care and dedication they are giving both us and Alannah is second to none. That being said, we are anxious to get out of this hospital and get back to normal life. We are taking one day at a time though and are staying in the hospital again tonight. Let's hope today is a good day.
Take care all
Thanks again
Love
Ev, Tom, Mikey and of course, Alannah xxx
Five years ago yesterday Tom and I got married. If you had asked us then the old famous interview question "Where do you see yourself in five years time?" , we would never have thought of the absolute nightmare that we all went through yesterday.
Alannah was first on the list for her operation yesterday. We brought her down to the theatre and kissed her good luck. We were nervous but happy that she was getting what she needed. At around noon our CNS told us that Alannah had been a bit unstable throughout the procedure. Her blood pressure was very low and her oxygen saturation levels were also low. Then she dropped the bombshell that upon return to ICU, they did an echo on her and it showed a clot in the shunt they had just put in. It would have to be redone. We were devastated.
We went in to see her in ICU and she looked terrible. Bruised and pale, hands down by her side (Alannah likes to have her hands up under her chin or on her chest). There were five nurses working around her frantically and everyone looked at one another with "that look" when they saw us. We left quite quickly as we felt we were in the way.
At around 2 o'clock she went down for a replacement shunt. At 5.30 the CNS told us all had gone very well and she had tolerated the procedure very well - we were so relieved. 30 mins later we were told that her sats had gone down again and they had to do another echo - another clot was detected. At this stage we were worried at how someone so small would be able to cope with another procedure. The team assured us that her heart has a mechanical problem, the rest of her is good and strong and healthy and they would do another procedure.
At 11:15 Alannah bravely went down for her 3rd operation. When she came back from theatre, her oxygen blood levels (sats) were in the 50's - the team had expected around 100 as this was a different type of shunt that would push the blood to the lungs with a brute force. One of her lungs had also partially collapsed. We were called at 2:15 to see her and it's fair to say that we just felt sheer despair and anger looking at her sats. What has our little girl done to deserve this? She looks so fragile but is so strong.
At 6:00 this morning her sats were between 75 and 85. The nurse looking after her was thrilled. At the moment - as far as we know (cos we took a quick trip to mums) - her sats are between 60 and 80. Alannah still has a long road ahead. Yesterday showed us just how unpredictable life in a hospital can be. I know I don't have to ask you to pray for her or think positive thoughts for her as you're doing so much already. We just have to wait and see how she recovers.
We bumped into her surgeon this morning and he is pleased and cautious. He told us he had never had to do 3 shunts on a baby but hastily added - there's always a first! I'm wondering at this stage if Alannah has developed an early crush on the man and that's why she's required these surgeries! ;-) He is a remarkable man. He carried out all of her procedures yesterday. The staff in the hospital are totally amazing and the care and dedication they are giving both us and Alannah is second to none. That being said, we are anxious to get out of this hospital and get back to normal life. We are taking one day at a time though and are staying in the hospital again tonight. Let's hope today is a good day.
Take care all
Thanks again
Love
Ev, Tom, Mikey and of course, Alannah xxx
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