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
Wednesday, April 15, 2009
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.
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