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
Friday, April 24, 2009
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
Wednesday, April 15, 2009
Wednesday, 15 April
Hi all
Well Friday is the day for Alannah's surgery - no confirmed time as of yet and there probably won't be until the day.
We learnt today that the procedure is not "open heart" surgery - we are on a learning curve as well as all of you so excuse us if we get it wrong occasionally! Alannah's heart itself will not be opened as the surgery is to connect a branch of the aorta to the pulmonary artery and these are outside the heart itself but she will be opened up in order for this to be done. We spoke to the surgeon, our cardiologist and the cardiac nurse specialist (CNS) today. The CNS explained everything to us from the consent form we will have to sign right through to the time when Alannah will be back on the ward. She even mentioned the "home" word a couple of times but we don't want to look that far ahead just yet :-). I have to say, the staff do prepare you well for what is coming up, and as we all know this surgery is not really an optional one for us. Alannah needs it and it's good to know what lies ahead. Tomorrow will see more discussions with the surgeon and CNS, signing of consent form, talking with the anaesthesiologist.
Alannah looks well at the moment and we are looking forward to her receiving her operation and getting off the drugs that are giving her so many unnecessary issues that she has to deal with. We are all a bit wrecked at the moment - each day morphs into the next one. Mikey is still being a gem - we're lucky he is so good.
Take care all
Love
Ev, Tom, Mikey & Alannah xx
Well Friday is the day for Alannah's surgery - no confirmed time as of yet and there probably won't be until the day.
We learnt today that the procedure is not "open heart" surgery - we are on a learning curve as well as all of you so excuse us if we get it wrong occasionally! Alannah's heart itself will not be opened as the surgery is to connect a branch of the aorta to the pulmonary artery and these are outside the heart itself but she will be opened up in order for this to be done. We spoke to the surgeon, our cardiologist and the cardiac nurse specialist (CNS) today. The CNS explained everything to us from the consent form we will have to sign right through to the time when Alannah will be back on the ward. She even mentioned the "home" word a couple of times but we don't want to look that far ahead just yet :-). I have to say, the staff do prepare you well for what is coming up, and as we all know this surgery is not really an optional one for us. Alannah needs it and it's good to know what lies ahead. Tomorrow will see more discussions with the surgeon and CNS, signing of consent form, talking with the anaesthesiologist.
Alannah looks well at the moment and we are looking forward to her receiving her operation and getting off the drugs that are giving her so many unnecessary issues that she has to deal with. We are all a bit wrecked at the moment - each day morphs into the next one. Mikey is still being a gem - we're lucky he is so good.
Take care all
Love
Ev, Tom, Mikey & Alannah xx
Tuesday, April 14, 2009
Tuesday 14 April 2009
Hi all, just to let you all know that today we found out that Alannah will need surgery. This is something that we expected to be honest, especially considering that Alannah has still a need for the drug to keep a duct open that adds to the blood flowing to her lungs.
Last week, as you may know, Alannah had a procedure to open a valve to allow blood flow to her lungs. This has worked but not enough blood is flowing through this valve - her heart needs more time to develop. This surgery will be to create a duct from the Aorta to the Pulmonary Artery which will increase blood flow from the heart to the lungs. It's open heart surgery this time - which of course is worrying - but it is a common procedure in the hospital and the surgeon is dedicated to performing this type of surgery.
We mentioned the possibility of a further catheter procedure (stent) in an earlier posting. This is no longer an option as there is a little flap in Alannah's duct that opens and closes. The doctors are afraid that if they tried to put a stent into this duct to widen it that it may rip and it is just too risky to do that procedure. That is why we are now looking at the open heart surgery - it's called a BT shunt repair. They still think that a 4 chamber fully functioning heart is a distinct possibility for Alannah in the long run. The plan would be that after a year, they can carry out a non-invasive catheter procedure to close the shunt and let the heart do all the work itself.
There is a slight infection in the lines she has for drips etc. but the doctors are happy that the antibiotics given so far are working. Tomorrow, we will find out if the infections will hold up the operation date and if not, we should know tomorrow when the operation is scheduled.
We will update you as soon as we can, but in the mean time, many, many thanks for all your well wishes, prayers and comments.
Tom, Ev, Mikey and Alannah
Last week, as you may know, Alannah had a procedure to open a valve to allow blood flow to her lungs. This has worked but not enough blood is flowing through this valve - her heart needs more time to develop. This surgery will be to create a duct from the Aorta to the Pulmonary Artery which will increase blood flow from the heart to the lungs. It's open heart surgery this time - which of course is worrying - but it is a common procedure in the hospital and the surgeon is dedicated to performing this type of surgery.
We mentioned the possibility of a further catheter procedure (stent) in an earlier posting. This is no longer an option as there is a little flap in Alannah's duct that opens and closes. The doctors are afraid that if they tried to put a stent into this duct to widen it that it may rip and it is just too risky to do that procedure. That is why we are now looking at the open heart surgery - it's called a BT shunt repair. They still think that a 4 chamber fully functioning heart is a distinct possibility for Alannah in the long run. The plan would be that after a year, they can carry out a non-invasive catheter procedure to close the shunt and let the heart do all the work itself.
There is a slight infection in the lines she has for drips etc. but the doctors are happy that the antibiotics given so far are working. Tomorrow, we will find out if the infections will hold up the operation date and if not, we should know tomorrow when the operation is scheduled.
We will update you as soon as we can, but in the mean time, many, many thanks for all your well wishes, prayers and comments.
Tom, Ev, Mikey and Alannah
Monday, April 13, 2009
Monday 13 April 2009
Hi all
Alannah is fine but the frustrating thing about her condition is that we don't really know where we stand from day to day. One day she is doing really well and all the numbers are going in the right direction, the next all the numbers are down, medications are adjusted and we are nearly back to square one.
The doctors have told us that it is a matter of making adjustments and seeing how she tolerates them - these adjustments seem to have to be made not just on a daily basis, but sometimes a couple of times a day.
One of the main things they monitor and are concerned with is referred to as "sats". This is her oxygen saturation levels in her blood. For us it's 99-100%. Alannah's range from 50-75% and this is worrying.
Today saw Alannah being put back onto a high dosage of the medication to stop the duct from closing and they took her off the meds for her lungs and to slow down the heart beat. The doc felt that these drugs were having an affect on her blood pressure which has been low for the past couple of days. She has picked up an infection through one of her lines and is on antibiotics for that and she has also got "some bugs" in her system which they can't identify yet - we'll know more tomorrow. She's also back to being fed through her nasal tube. On the plus side her oxygen levels are up and her heartrate is good. It's swings and roundabouts at the moment. To look at her, you'd think everything was fine but inside she is fighting against so many things. As a parent, you want so much just to take her in your arms and kiss all her problems away - but unfortunately it's not quite that simple.
Before she was born, we said that the most frustrating thing was not knowing what we were facing. Now we have a diagnosis, but still do not know what lies ahead. It's tough alright but sure we have to just try and take one day at a time.
Thanks to all for your messages of support.
Take care all
Love
Ev, Tom, Mikey & Alannah xx
Alannah is fine but the frustrating thing about her condition is that we don't really know where we stand from day to day. One day she is doing really well and all the numbers are going in the right direction, the next all the numbers are down, medications are adjusted and we are nearly back to square one.
The doctors have told us that it is a matter of making adjustments and seeing how she tolerates them - these adjustments seem to have to be made not just on a daily basis, but sometimes a couple of times a day.
One of the main things they monitor and are concerned with is referred to as "sats". This is her oxygen saturation levels in her blood. For us it's 99-100%. Alannah's range from 50-75% and this is worrying.
Today saw Alannah being put back onto a high dosage of the medication to stop the duct from closing and they took her off the meds for her lungs and to slow down the heart beat. The doc felt that these drugs were having an affect on her blood pressure which has been low for the past couple of days. She has picked up an infection through one of her lines and is on antibiotics for that and she has also got "some bugs" in her system which they can't identify yet - we'll know more tomorrow. She's also back to being fed through her nasal tube. On the plus side her oxygen levels are up and her heartrate is good. It's swings and roundabouts at the moment. To look at her, you'd think everything was fine but inside she is fighting against so many things. As a parent, you want so much just to take her in your arms and kiss all her problems away - but unfortunately it's not quite that simple.
Before she was born, we said that the most frustrating thing was not knowing what we were facing. Now we have a diagnosis, but still do not know what lies ahead. It's tough alright but sure we have to just try and take one day at a time.
Thanks to all for your messages of support.
Take care all
Love
Ev, Tom, Mikey & Alannah xx
Saturday, April 11, 2009
Update on Alannah April 11th
Quick Update... Alannah took a couple of bottles today. Ev was delighted to give Alannah her first bottle - 43mls in one go! The action tires her, so she sleeps soundly after her food. The medical team are still finding the balance for her medication and will take some time. Despite this Alannah continues to do well and we're delighted with her.
Friday, April 10, 2009
Update on Alannah April 10th
Hi All, Just to let you know that Alannah is out of ICU and back onto the wards. She is still delicate there and may need to return to the ICU but we'll see how she gets on. In the meantime, the doctors are gradually reducing her medications while Alannah is maintaining her heart and breathing rates.
Mikey visited Alannah today and was delighted to give his sister lots of rubs and love. He was telling all the nurses that he was her big brother and was asking the nurses if she her heart was still sick - poor fella. Mikey has been brilliant through all of this - we're very proud of him. Of course the other attraction for Mikey in the hospital has to be the giant fish tank on the ground floor by the lifts. In fact the fish tank is sometimes the main attraction for Mikey in the hospital and not his sister!
We've added a link to explain what are the details of Alannah's diagnosis. It's under the links section to the left labelled "Alannah's case explained".
Mikey visited Alannah today and was delighted to give his sister lots of rubs and love. He was telling all the nurses that he was her big brother and was asking the nurses if she her heart was still sick - poor fella. Mikey has been brilliant through all of this - we're very proud of him. Of course the other attraction for Mikey in the hospital has to be the giant fish tank on the ground floor by the lifts. In fact the fish tank is sometimes the main attraction for Mikey in the hospital and not his sister!
We've added a link to explain what are the details of Alannah's diagnosis. It's under the links section to the left labelled "Alannah's case explained".
Thursday, April 9, 2009
Update on Alannah April 9th
Last night myself and Ev were delighted to visit Alannah without her ventilator! She was on it since Thursday and it took a while to get the balance of meds and fluids right. Over the last few days the ventilator was only a back up. Ev got to give Alannah a long awaited cuddle and whilst it seems that Alannah is ready for the ward, there doesn't appear to be any beds free at the moment. At least it's a matter of "when" and not "if" at this stage.
Alannah is still on a number of medications. One drug is to keep a naturally occuring duct in the heart open (this normally closes shortly after birth). This duct is allowing blood to flow to the lungs. Weaning her off this drug is the next step in her recovery. It will be done slowly to see if she can cope without this duct. If she can't manage without it, another catheter procedure will be necessary to place a stent in the duct to keep it open. At the moment, the cardiologist is hopeful that this procedure won't be necessary.
Alannah's right ventricle is small and the muscle around it is thick. She is on another drug to relax the muscle around the right ventricle to allow more blood into the heart and to allow it to pump more efficiently. The muscle in this ventricle needs to break down to enlarge the chamber and allow the heart to function more normally. This will take a lot of time. She is also on another drug to reduce the pressure in her lungs to allow more blood pass through.
Nothing can prepare you for the rollercoaster of emotions that you go through in these circumstances. It's only been a week, but we feel like we've been here for an age! Mikey has been an absolute gem through all of the madness. He is coping really well and is missing his sister already! It goes without saying that our families have been fantastic support for him and we'd be totally lost without them.
We've learnt that the advice given to us by the nurses is good advice - set no goals and just take each hour as it comes. Alannah is a real fighter and we will wait for as long as she needs to get her home. Thanks for your continuous support, prayers and love. We couldn't get through it all without you.
Alannah is still on a number of medications. One drug is to keep a naturally occuring duct in the heart open (this normally closes shortly after birth). This duct is allowing blood to flow to the lungs. Weaning her off this drug is the next step in her recovery. It will be done slowly to see if she can cope without this duct. If she can't manage without it, another catheter procedure will be necessary to place a stent in the duct to keep it open. At the moment, the cardiologist is hopeful that this procedure won't be necessary.
Alannah's right ventricle is small and the muscle around it is thick. She is on another drug to relax the muscle around the right ventricle to allow more blood into the heart and to allow it to pump more efficiently. The muscle in this ventricle needs to break down to enlarge the chamber and allow the heart to function more normally. This will take a lot of time. She is also on another drug to reduce the pressure in her lungs to allow more blood pass through.
Nothing can prepare you for the rollercoaster of emotions that you go through in these circumstances. It's only been a week, but we feel like we've been here for an age! Mikey has been an absolute gem through all of the madness. He is coping really well and is missing his sister already! It goes without saying that our families have been fantastic support for him and we'd be totally lost without them.
We've learnt that the advice given to us by the nurses is good advice - set no goals and just take each hour as it comes. Alannah is a real fighter and we will wait for as long as she needs to get her home. Thanks for your continuous support, prayers and love. We couldn't get through it all without you.
Monday, April 6, 2009
Welcome
To those of you new to our blog - welcome.
When I was 22 weeks pregnant we found out that our daughter had a serious heart condition. When we were initially diagnosed, things did not look good but as time went by and we had more and more scans and the baby grew, we were given a more optimistic outlook. When our daughter Alannah finally arrived on 31 March 2009 at 11:44am, she was delivered by c-section so that all the doctors would be ready for her. The following blogs were posted by Tom and I to chart her progress for all who were keen to know. Below is the first posting.
Dear all,
Alannah is doing very well so far. She is currently in the intensive care unit and the doctors are very happy with her progress. Before she was born the cardiologists felt that the best course of action was to complete a series of three operations that would effectively leave Alannah with a two chamber heart. However, scans after birth revealed that there could be a chance to save the right side of the heart. On Thursday April 2nd Alannah had a four hour operation in the hope that normal blood flow could pass through a closed valve and an underdeveloped chamber could begin to repair itself. The long term goal of this procedure is to allow Alannah have a four chamber heart. If this is not successful, there are other options available for a three and a half chamber heart.
Currently Alannah is on a ventilator, feeding tube, and some medication to help her heart. There are lots of tubes, but you quickly see past these and see how beautiful Alannah is.
When I was 22 weeks pregnant we found out that our daughter had a serious heart condition. When we were initially diagnosed, things did not look good but as time went by and we had more and more scans and the baby grew, we were given a more optimistic outlook. When our daughter Alannah finally arrived on 31 March 2009 at 11:44am, she was delivered by c-section so that all the doctors would be ready for her. The following blogs were posted by Tom and I to chart her progress for all who were keen to know. Below is the first posting.
Dear all,
Alannah is doing very well so far. She is currently in the intensive care unit and the doctors are very happy with her progress. Before she was born the cardiologists felt that the best course of action was to complete a series of three operations that would effectively leave Alannah with a two chamber heart. However, scans after birth revealed that there could be a chance to save the right side of the heart. On Thursday April 2nd Alannah had a four hour operation in the hope that normal blood flow could pass through a closed valve and an underdeveloped chamber could begin to repair itself. The long term goal of this procedure is to allow Alannah have a four chamber heart. If this is not successful, there are other options available for a three and a half chamber heart.
Currently Alannah is on a ventilator, feeding tube, and some medication to help her heart. There are lots of tubes, but you quickly see past these and see how beautiful Alannah is.
Subscribe to:
Posts (Atom)