The company I work for have a charity committee and this morning opened up the floor for staff to nominate charities who we felt the company should support.
I emailed the committee this morning and explained what has happened over the last few weeks and how I had a great deal of support and information from Little Hearts Matter after being pointed in their direction from a few ladies on the baby centre website I use.
I just had a phone call from the lady who runs the committee and they have agreed they are going to donate £3000!!
I'm so pleased and happy as it must be such a struggle for smaller charities and the work they do helps so many people.
So in a way having this diagnosis has had some good come out of it as now the charity can use the money to help more people.
Best day I have had in a while :-)
xxx
23 December 2010
20 December 2010
A little bit naughty.....
So I bought some little pink baby sleep suits. Just 2. They were in a sale and they were cute and it cheered me up a little. I might also have bought a little bunny comforter...... Which is also very cute and was only £1!
Been a bit up and down the last couple of days. Swing between feeling everything will be ok and then to being so so afraid that we will not bring our little girl home. Ian is being wonderful though and does all he can to make me feel better when I am having a low moment. I hope I am doing the same for him.
Little one has been kicking me a lot, Saturday night I couldn't get to sleep for a good hour because the little bugger seemed to wait until I was just about to drop off to sleep, then BAM!! WAKE UP I'M HERE AND I WANT YOU TO KNOW ABOUT IT!!!! Very nice and reassuring, but at 1am!! Baby you should be sleeping! (And so should I!!) :-)
First day back in the office today. Haven't been here since the day I left to go for my 20 week scan. To be fair, everyone here has been really nice. Some have asked questions but I do feel they are out of concern and not just nosiness! So it's not been too bad. I will be stopping work at the end of January now, which is a good 3 months before my due date, but I want to be comfortable, relaxed and ready for the birth. My midwife also said it may be beneficial for me to spend time with Ian, doing things we enjoy before all the really hard work and emotions take over.
All in all, I'm fairing pretty well, remaining hopeful but realistic about the future, as is Ian, and as for Emily floating around in there, if her kicks are anything to go by she's ok too :-)
xx
Been a bit up and down the last couple of days. Swing between feeling everything will be ok and then to being so so afraid that we will not bring our little girl home. Ian is being wonderful though and does all he can to make me feel better when I am having a low moment. I hope I am doing the same for him.
Little one has been kicking me a lot, Saturday night I couldn't get to sleep for a good hour because the little bugger seemed to wait until I was just about to drop off to sleep, then BAM!! WAKE UP I'M HERE AND I WANT YOU TO KNOW ABOUT IT!!!! Very nice and reassuring, but at 1am!! Baby you should be sleeping! (And so should I!!) :-)
First day back in the office today. Haven't been here since the day I left to go for my 20 week scan. To be fair, everyone here has been really nice. Some have asked questions but I do feel they are out of concern and not just nosiness! So it's not been too bad. I will be stopping work at the end of January now, which is a good 3 months before my due date, but I want to be comfortable, relaxed and ready for the birth. My midwife also said it may be beneficial for me to spend time with Ian, doing things we enjoy before all the really hard work and emotions take over.
All in all, I'm fairing pretty well, remaining hopeful but realistic about the future, as is Ian, and as for Emily floating around in there, if her kicks are anything to go by she's ok too :-)
xx
16 December 2010
Busy Busy Week!
Sooo, this week has been so busy! We had unexpected visits from family and trips to hospitals and a bit of a move around in our house.
On Monday we went to Great Ormond Street Childrens Hospital for a Fetal Echo. The Echo confirmed our consultants suspicions that our little baby does have HLHS. It brought it home a bit, but I think we had dealt with the initial shock over the weekend, so we were able to ask the cardiologist all the questions we had thought of.
The cardiologist we met with is Dr Sullivan and he was great. Very impartial and answered all our questions openly. He explained the operations and process that we would enter in to once our baby is born.
We have decided that we will be going for it with our little baby. We understand fully that once she is born she will be assessed to see how well she is. Whilst we are being positive and hoping for the best, and for her to be well enough for surgery, we are also being realistic and understanding that should she be very poorly when she is born, we will do all we can to make sure she is not in any pain and we will let her go.
It's a sad situation to be in, but we are going to keep smiling because, it is what it is and somehow we will cope and get through whatever happens. We have each other and our families for support.
We did talk about terminating, to be honest, at first we both thought that would be for the best, but then we didn't think we could live with the 'what if...' thoughts. Also, when we realised that I would still have to go through labour and give birth, it seemed wrong to think that we would go through that for it to be the end and for there to be no chance.... If that makes any sense? :-)
Today we met with Mr Lumb again at our local hospital in Peterborough and told him about our decision. He has assured us he will do all he can to support us and help us through this. We will be getting more scans so that the little baby can be monitored and to make sure she is growing well. He offered to scan us this afternoon!!! I was all for this (the chance to see our gorgeous baby!!) but Ian said we should wait a few weeks as we did only just see her last week so nothing much will have changed..... Spoil sport (but I do see his point!).
So we have a scan booked for mid January to have a little peek and see how she is doing. At this point also, if Mr Lumb notices any markers for any further problems we may have amniocentesis test carried out, as we feel should there be further problems we would like to be prepared, however, the Nuchal scan we had combined with my maternal serum tests, would indicate there will be no problems (i.e. chromosomal) further to the HLHS.
Other than hospital visits we have been putting up our Christmas Tree (at last) and doing bits around the house together. It was lovely to see my mum and sister and my little niece who traveled up from Cornwall to visit us. We're looking forward to Christmas and I am trying to get back in to feeling excited about being pregnant. I'm sure as I get bigger and we hopefully get more reassurance about what will happen as our little one starts to get ready for her grand entrance I will begin to feel better!
Oh and we decided on a name.... The blog name kinda gives it away, but she will be called Emily Rose :-)
Thank you to everyone that has clicked the follow button and to those who are taking the time to read, I have been reading a few HLHS blogs and that is what inspired me to start our own! I've been overwhelmed by how much hope there is when you do look, but thank you all for coming here and supporting us. xxx
On Monday we went to Great Ormond Street Childrens Hospital for a Fetal Echo. The Echo confirmed our consultants suspicions that our little baby does have HLHS. It brought it home a bit, but I think we had dealt with the initial shock over the weekend, so we were able to ask the cardiologist all the questions we had thought of.
The cardiologist we met with is Dr Sullivan and he was great. Very impartial and answered all our questions openly. He explained the operations and process that we would enter in to once our baby is born.
We have decided that we will be going for it with our little baby. We understand fully that once she is born she will be assessed to see how well she is. Whilst we are being positive and hoping for the best, and for her to be well enough for surgery, we are also being realistic and understanding that should she be very poorly when she is born, we will do all we can to make sure she is not in any pain and we will let her go.
It's a sad situation to be in, but we are going to keep smiling because, it is what it is and somehow we will cope and get through whatever happens. We have each other and our families for support.
We did talk about terminating, to be honest, at first we both thought that would be for the best, but then we didn't think we could live with the 'what if...' thoughts. Also, when we realised that I would still have to go through labour and give birth, it seemed wrong to think that we would go through that for it to be the end and for there to be no chance.... If that makes any sense? :-)
Today we met with Mr Lumb again at our local hospital in Peterborough and told him about our decision. He has assured us he will do all he can to support us and help us through this. We will be getting more scans so that the little baby can be monitored and to make sure she is growing well. He offered to scan us this afternoon!!! I was all for this (the chance to see our gorgeous baby!!) but Ian said we should wait a few weeks as we did only just see her last week so nothing much will have changed..... Spoil sport (but I do see his point!).
So we have a scan booked for mid January to have a little peek and see how she is doing. At this point also, if Mr Lumb notices any markers for any further problems we may have amniocentesis test carried out, as we feel should there be further problems we would like to be prepared, however, the Nuchal scan we had combined with my maternal serum tests, would indicate there will be no problems (i.e. chromosomal) further to the HLHS.
Other than hospital visits we have been putting up our Christmas Tree (at last) and doing bits around the house together. It was lovely to see my mum and sister and my little niece who traveled up from Cornwall to visit us. We're looking forward to Christmas and I am trying to get back in to feeling excited about being pregnant. I'm sure as I get bigger and we hopefully get more reassurance about what will happen as our little one starts to get ready for her grand entrance I will begin to feel better!
Oh and we decided on a name.... The blog name kinda gives it away, but she will be called Emily Rose :-)
Thank you to everyone that has clicked the follow button and to those who are taking the time to read, I have been reading a few HLHS blogs and that is what inspired me to start our own! I've been overwhelmed by how much hope there is when you do look, but thank you all for coming here and supporting us. xxx
15 December 2010
How we found out...
Ian and I went for our routine 20 week scan on Friday 10th December 2010.
A lovely lady called Lorna scanned me and when she had finished she explained that she had a few concerns about the baby's heart and so she would like her colleague to come and have a look. So a second lady came to scan me and there seemed to be a lot of 'umm'-ing going on!
Both the ladies then left the room to discuss and Ian and I sat having a few moments. I was still smiling saying how the information I was given on the anomaly scan said that quite often 'markers' were picked up on but that more often than not the babies were fine.....
Lorna then came back in and sat down to tell us that she had seen that we were having a little girl but that she suspected that there was a serious problem with her heart. She had tears in her eyes and I understood then that it really was serious. As Lorna was the sonographer she was unable to go into detail, but our consultant Mr Lumb was paged and he arrived about 10 minutes later, along with our midwife Lesley.
We were taken in to a family room and Mr Lumb explained that Lorna suspected Hypoplastic Left Heart Syndrome, where by our little girl's heart had not developed on he left side meaning blood would not be pumped around her body and to her organs. He told us it was a very serious condition and that whilst our little baby issafe while she is in me, as soon as she was born, that's when the problems would arise.
Mr Lumb went off for a few minutes and when he came back he advised he had made an appointment for us to go for a Fetal Echocardiogram at Great Ormond Street Hospital in London on Monday 13th December. We would have a more in depth scan on the baby's heart and meet with Dr Sullivan who would be able to explain to us in greater detail our options and how the condition can be managed. We understood that the heart is not able to be fixed to be like a normal heart but that there was a chance that using the building blocks of what was there, a circulation system may be built. Mr Lumb explained that most couples in our situation chose to terminate.
We found it hard to think of any questions to ask at that point in time, so once we had all our appointment details for GOSH and a follow up appointment with Mr Lumb off we went in a state of shock.
A lovely lady called Lorna scanned me and when she had finished she explained that she had a few concerns about the baby's heart and so she would like her colleague to come and have a look. So a second lady came to scan me and there seemed to be a lot of 'umm'-ing going on!
Both the ladies then left the room to discuss and Ian and I sat having a few moments. I was still smiling saying how the information I was given on the anomaly scan said that quite often 'markers' were picked up on but that more often than not the babies were fine.....
Lorna then came back in and sat down to tell us that she had seen that we were having a little girl but that she suspected that there was a serious problem with her heart. She had tears in her eyes and I understood then that it really was serious. As Lorna was the sonographer she was unable to go into detail, but our consultant Mr Lumb was paged and he arrived about 10 minutes later, along with our midwife Lesley.
We were taken in to a family room and Mr Lumb explained that Lorna suspected Hypoplastic Left Heart Syndrome, where by our little girl's heart had not developed on he left side meaning blood would not be pumped around her body and to her organs. He told us it was a very serious condition and that whilst our little baby issafe while she is in me, as soon as she was born, that's when the problems would arise.
Mr Lumb went off for a few minutes and when he came back he advised he had made an appointment for us to go for a Fetal Echocardiogram at Great Ormond Street Hospital in London on Monday 13th December. We would have a more in depth scan on the baby's heart and meet with Dr Sullivan who would be able to explain to us in greater detail our options and how the condition can be managed. We understood that the heart is not able to be fixed to be like a normal heart but that there was a chance that using the building blocks of what was there, a circulation system may be built. Mr Lumb explained that most couples in our situation chose to terminate.
We found it hard to think of any questions to ask at that point in time, so once we had all our appointment details for GOSH and a follow up appointment with Mr Lumb off we went in a state of shock.
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