I haven't updated my blog for a while as we have been so busy with the run up to Christmas and the house move...the whole time I have been getting bigger and bigger. The GTT test results were clear so I don't have diabetes...which was great news given that it was nearly Christmas! The actual test wasn't great, I forgot to take Lucozade with me as I'd been advised to by friends but I thought I'd be fine drinking the glucose drink, which I was initially. Then in the waiting room, where I'd been sent to sit for 2 hours, I felt like I'd drunk 50 espressos...not a great look sweating and twitching in the corner like a right weirdo, ended up on the verge of telling a nurse I really did not feel normal but after running my wrists under the cold tap for ages I started to feel better. Had a few growth scans along the way which show baby is on the large side and fluid at a more acceptable level(some good news!)...and most recently an echocardiogram with Dr Miller on the 22nd December. Apparently I'm echogenic...I'll take that as a compliment! It meant he got a really clear view of baby's heart and was able to confirm that it's not going to be a straightforward switch of the arteries locations, the aorta is just too thin and they really need the pulmonary and aorta to be the same size to do that part of the 're-plumbing' process. So it looks like they will deal with the hypoplastic aortic arch first and then decide what to do from there.
Christmas has been lovely so far, it's like the calm before the storm, we're all so excited to meet our baby but at the same time only too aware it's not going to be easy. The house move is all completed, there's just some unpacking left to do now. Grace has a new school to start in Jan and hopefully a new gym too. I have another scan booked for the 28th December and then I guess we wait for 'the letter' to tell us c-section itinerary and times!
Monday 26 December 2011
Monday 7 November 2011
Appointments and more appointments!
Not that I'm complaining too much, the level of care we are experiencing is excellent. The main problem is the logistics, still no moving date so care continues to be divided between Northampton and Birmingham. I had an appointment at BWH on 26th October to get the ball rolling up there, I can't recall much about what was said just that the Obstetrician agreed to a cesarean so we have it all booked for 18th January 2012!!!
He also said there is a less than 10% chance of other chromosomal issues although he wasn't specific as to what these were and suggested we talk more in-depth with the cardiologist.
I have O Rhesus negative blood which means I had to have an anti-d injection, I'd rather not say where they administer this particular injection! Anyway, I had it on the 1st November, I told the midwife I was nervous, her reply, 'Oh don't worry it only hurts as it goes through the muscle.' Hmm. That said, it didn't hurt too much.
Next appointment was on the 3rd November, this was with Dr Paul Miller the cardiologist we have heard such a lot about. After a nightmare journey driving cross country and missing trains we made it just in time. A midwife did a full scan of the baby prior to the cardiologists visit, this was hard going as the room was boiling and I began to feel really sick, the sensation of being scanned and lying on my back nearly made me faint. They sorted the air-con and gave me a drink of water, I made a right scene about getting my jumper off, as soon as I sat up it passed and I was fine.
Dr Miller came in to do his diagnosis of baby's heart, I promptly had another episode which again passed as soon as I sat up. Before nearly throwing up on him he managed to gather enough info to confirm Dr Mannings diagnosis. Although he referred to the coarctation of the aorta and added hypoplastic transverse aortic arch, I haven't looked this up but I assume it means not only is it too thin it is also the wrong way around?
Alan and I were sent to wait in a side room with tissues on the table and paintings of lillies on the wall, we have been in a few of these rooms for 'chats' lately.
A midwife, a doctor and Dr Miller joined us to discuss baby.
Dr Miller was very straightforward, he said baby will have the coarctation fixed within the first week of life, which we expected to hear. There is a problem with the following operations for the DORV and TGA as one part of baby's heart they need to stretch to the correct chamber will be too small to reach across so he suspects the best option is to fix a band around one of the valves to reduce flow to the lungs and allow baby to go home and grow! :)
This is both good and not so good, good he may get to come home much sooner than we first thought but not so good as he will still be struggling with the large hole in his heart. I can forsee many sleepless nights, I won't be able to take my eyes off him for a second.
Back to my biggest fear, the chromosomal issue. I asked again what syndromes apart from Downs could be linked to these heart defects, they told us DiGeorge syndrome. I have heard of this before and understand there is a wide spectrum of how this can affect people, from so mild you would never even know a person had it to a few learning disabilities, it's very rare though. However, the word 'rare' doesn't mean that much to us as we already fall firmly into the 'rare' category.
The midwife was happy with baby's measurements, there was nothing else suspect they could see on the scan. Although Alan and I are pretty much at the stage where nothing would shock us it is reassuring to know baby has no other problems they can detect. They did offer me the amnio again, I politely declined.
The amniotic fluid has risen though, enough to make them concerned, it could be something or nothing, gestational diabetes, infection in the womb or this being down to a genetic or chromosomal syndrome. I am due to go to Northampton on the 11th November for a gestational diabetes test(GTT) to hopefully rule this out. I have to fast from 10pm on Thursday night, in the morning they do the GTT, consisting of two blood tests with a glucose drink in between, the midwife confessed the concoction is foul so I'll look forward to that. They will also scan again to see what level the fluids are at...please let them have decreased!!
If it turns out I have this gestational diabetes they will handle the pregnancy differently....what that entails I do not know? If it's because of anything else then there's not much they can do.
I have cut sugar out of my diet all the same and invested in some really healthy/boring food to eat from now on. I was happy with my Jamaican ginger cake and golden syrup cake and really any type of cake, particularly Alans Mums cakes, or biscuits, or snickers and mars...and Twix's....
We have 2 more appointments lined up, one for a routine scan on the 23rd November and one on 22nd December with Dr Paul Miller just to check if there are any changes to baby's heart. We have been given the contact of Kay Dyer, a cardiac liaison nurse at BCH, we plan to arrange a meeting with her soon. Grace will come along too to have a look where babies with heart defects are treated. We think this meeting will benefit all of us, including Grace and start to prepare her for things she may see in January. Dr Miller has warned us in no uncertain terms, nothing can prepare you for seeing your own baby like this.
I had a revelation the other day, after feeling down and depressed and miserably sorry for our situation I decided enough was enough. Up until this point I have refused to buy a thing for baby and not even looked at any baby clothes, it dawned on me if he was born premature he wouldn't have a stitch! So I have bought him some socks! I am on the lookout for a few hats next and Grace is going to pick his first cuddly toy. Alan and I continue to have a sense of humour and are looking on the bright side more often than not.
I'm over the scare mongering and figure the Dr's have to do their job and entertain my morbid fascination with the world of syndromes and chromosomes but I really need to give it up. We won't know till he's here and so, in the meantime whats the point in obsessing over the if's, but's and maybe's!
He also said there is a less than 10% chance of other chromosomal issues although he wasn't specific as to what these were and suggested we talk more in-depth with the cardiologist.
I have O Rhesus negative blood which means I had to have an anti-d injection, I'd rather not say where they administer this particular injection! Anyway, I had it on the 1st November, I told the midwife I was nervous, her reply, 'Oh don't worry it only hurts as it goes through the muscle.' Hmm. That said, it didn't hurt too much.
Next appointment was on the 3rd November, this was with Dr Paul Miller the cardiologist we have heard such a lot about. After a nightmare journey driving cross country and missing trains we made it just in time. A midwife did a full scan of the baby prior to the cardiologists visit, this was hard going as the room was boiling and I began to feel really sick, the sensation of being scanned and lying on my back nearly made me faint. They sorted the air-con and gave me a drink of water, I made a right scene about getting my jumper off, as soon as I sat up it passed and I was fine.
Dr Miller came in to do his diagnosis of baby's heart, I promptly had another episode which again passed as soon as I sat up. Before nearly throwing up on him he managed to gather enough info to confirm Dr Mannings diagnosis. Although he referred to the coarctation of the aorta and added hypoplastic transverse aortic arch, I haven't looked this up but I assume it means not only is it too thin it is also the wrong way around?
Alan and I were sent to wait in a side room with tissues on the table and paintings of lillies on the wall, we have been in a few of these rooms for 'chats' lately.
A midwife, a doctor and Dr Miller joined us to discuss baby.
Dr Miller was very straightforward, he said baby will have the coarctation fixed within the first week of life, which we expected to hear. There is a problem with the following operations for the DORV and TGA as one part of baby's heart they need to stretch to the correct chamber will be too small to reach across so he suspects the best option is to fix a band around one of the valves to reduce flow to the lungs and allow baby to go home and grow! :)
This is both good and not so good, good he may get to come home much sooner than we first thought but not so good as he will still be struggling with the large hole in his heart. I can forsee many sleepless nights, I won't be able to take my eyes off him for a second.
Back to my biggest fear, the chromosomal issue. I asked again what syndromes apart from Downs could be linked to these heart defects, they told us DiGeorge syndrome. I have heard of this before and understand there is a wide spectrum of how this can affect people, from so mild you would never even know a person had it to a few learning disabilities, it's very rare though. However, the word 'rare' doesn't mean that much to us as we already fall firmly into the 'rare' category.
The midwife was happy with baby's measurements, there was nothing else suspect they could see on the scan. Although Alan and I are pretty much at the stage where nothing would shock us it is reassuring to know baby has no other problems they can detect. They did offer me the amnio again, I politely declined.
The amniotic fluid has risen though, enough to make them concerned, it could be something or nothing, gestational diabetes, infection in the womb or this being down to a genetic or chromosomal syndrome. I am due to go to Northampton on the 11th November for a gestational diabetes test(GTT) to hopefully rule this out. I have to fast from 10pm on Thursday night, in the morning they do the GTT, consisting of two blood tests with a glucose drink in between, the midwife confessed the concoction is foul so I'll look forward to that. They will also scan again to see what level the fluids are at...please let them have decreased!!
If it turns out I have this gestational diabetes they will handle the pregnancy differently....what that entails I do not know? If it's because of anything else then there's not much they can do.
I have cut sugar out of my diet all the same and invested in some really healthy/boring food to eat from now on. I was happy with my Jamaican ginger cake and golden syrup cake and really any type of cake, particularly Alans Mums cakes, or biscuits, or snickers and mars...and Twix's....
We have 2 more appointments lined up, one for a routine scan on the 23rd November and one on 22nd December with Dr Paul Miller just to check if there are any changes to baby's heart. We have been given the contact of Kay Dyer, a cardiac liaison nurse at BCH, we plan to arrange a meeting with her soon. Grace will come along too to have a look where babies with heart defects are treated. We think this meeting will benefit all of us, including Grace and start to prepare her for things she may see in January. Dr Miller has warned us in no uncertain terms, nothing can prepare you for seeing your own baby like this.
I had a revelation the other day, after feeling down and depressed and miserably sorry for our situation I decided enough was enough. Up until this point I have refused to buy a thing for baby and not even looked at any baby clothes, it dawned on me if he was born premature he wouldn't have a stitch! So I have bought him some socks! I am on the lookout for a few hats next and Grace is going to pick his first cuddly toy. Alan and I continue to have a sense of humour and are looking on the bright side more often than not.
I'm over the scare mongering and figure the Dr's have to do their job and entertain my morbid fascination with the world of syndromes and chromosomes but I really need to give it up. We won't know till he's here and so, in the meantime whats the point in obsessing over the if's, but's and maybe's!
Wednesday 19 October 2011
6 weeks on since baby's diagnosis.
The last 6 weeks have flown by. I had such a fantastic response to the blog, thank you to everyone who messaged me, it definitely helped us get our heads around what can only be described as a nightmare. So many people have been in touch to offer support and we have been in contact with people who have faced similar problems and had happy endings, so this has been a major help!
I never thought at the age of 33 I would begin to study the workings of the human heart, my head is full to the brim with medical terms and procedures. I figured the more we know the better equipped we will be when Doctors are explaining details that quite frankly, baffle me.
We went back to Oxford for a follow up scan on the 7th October, this was as we expected, no changes to baby's heart.
The offer of an amniocentesis is still hanging in the air, I must have been asked about 20 times if I want to have this. We are aware there is a higher risk that babies with heart defects may also have other chromosomal abnormalities present at birth but the way I see it is, these are the cards we have been dealt and both Alan and I will love this baby no matter what. If baby does have any other problems then we will face them when he is here, I am praying he is 'normal' apart from what we already know and so far all the signs are good, we have an estimated 1:5500 chance of him having downs, as for anything else we will just have to keep our fingers crossed.
The process to move our care to Birmingham has begun as we have bought a house there, so this stressful episode now has the purchase of a house and all that goes with that chucked in for good measure! Hopefully we should be in before Christmas so we're really looking forward to the move, it'll be a good distraction. The rooms have worked out well as the one for baby has a lovely brand new blue carpet in it!
Speaking of which, I discovered that he will also be quite blue when he is born, this completely freaked me out, BLUE!?? But having spoken to a few people this is the norm with heart problem babies, normal colour will be resumed when he is put onto the drug to keep his heart valves open and working.
Baby's due date is the 25th January and the plan so far is for me to have a c-section slightly earlier at Birmingham Womens Hospital, then Birmingham Childrens Hospital is where he will have his first operation, this will be to fix the coarctation of the aorta. We don't know how soon they will operate at this stage.
He will need to have the DORV(double outlet right ventricle) and TGA(transposition of great arteries) corrected aswell and also have the large VSD(hole in the heart) fixed, these will be done in one go or a series of op's, depending on the surgeon and also on how baby is doing.
We are seeing Dr Paul Miller on the 3rd November for another detailed heart scan at B'ham Childrens Hospital, hopefully at this appointment we can start to organise things and get a proper plan in place.
So that's where we are at right now, looking forward to Christmas with little Gracie and the prospect of a new home. There's not much else we can do other than sit tight, stay positive and wait.
Oh and decide on a name for the little chap, we have one or two in the pipeline...
I never thought at the age of 33 I would begin to study the workings of the human heart, my head is full to the brim with medical terms and procedures. I figured the more we know the better equipped we will be when Doctors are explaining details that quite frankly, baffle me.
We went back to Oxford for a follow up scan on the 7th October, this was as we expected, no changes to baby's heart.
The offer of an amniocentesis is still hanging in the air, I must have been asked about 20 times if I want to have this. We are aware there is a higher risk that babies with heart defects may also have other chromosomal abnormalities present at birth but the way I see it is, these are the cards we have been dealt and both Alan and I will love this baby no matter what. If baby does have any other problems then we will face them when he is here, I am praying he is 'normal' apart from what we already know and so far all the signs are good, we have an estimated 1:5500 chance of him having downs, as for anything else we will just have to keep our fingers crossed.
The process to move our care to Birmingham has begun as we have bought a house there, so this stressful episode now has the purchase of a house and all that goes with that chucked in for good measure! Hopefully we should be in before Christmas so we're really looking forward to the move, it'll be a good distraction. The rooms have worked out well as the one for baby has a lovely brand new blue carpet in it!
Speaking of which, I discovered that he will also be quite blue when he is born, this completely freaked me out, BLUE!?? But having spoken to a few people this is the norm with heart problem babies, normal colour will be resumed when he is put onto the drug to keep his heart valves open and working.
Baby's due date is the 25th January and the plan so far is for me to have a c-section slightly earlier at Birmingham Womens Hospital, then Birmingham Childrens Hospital is where he will have his first operation, this will be to fix the coarctation of the aorta. We don't know how soon they will operate at this stage.
He will need to have the DORV(double outlet right ventricle) and TGA(transposition of great arteries) corrected aswell and also have the large VSD(hole in the heart) fixed, these will be done in one go or a series of op's, depending on the surgeon and also on how baby is doing.
We are seeing Dr Paul Miller on the 3rd November for another detailed heart scan at B'ham Childrens Hospital, hopefully at this appointment we can start to organise things and get a proper plan in place.
So that's where we are at right now, looking forward to Christmas with little Gracie and the prospect of a new home. There's not much else we can do other than sit tight, stay positive and wait.
Oh and decide on a name for the little chap, we have one or two in the pipeline...
Monday 12 September 2011
Next stop...The Diagnosis.
Oxford John Radcliffe hospital moved pretty quick and tried to get us in to see a specialist heart consultant on the same day as the 20 week scan! We couldn't get there in time so arranged an appointment for 6pm on Friday 9th September.
I told Grace as little as possible, just that one side of baby's heart was a little bit smaller than it should be and they needed to check it out, Grace is 8 so she kind of gets it. She's happy she's going to have a little brother and has promised she is going to be chief story reader!
Before the appointment we we're in good spirits, I said to Alan that my worst case scenario is they will suggest we terminate the pregnancy. My best case scenario was that they can fix our baby.
(Immediately before we went in we got a call to say our house had sold, months of worry about that particular problem gone in an instant, isn't it strange how things go?)
Anyway...we met with Dr Nicky Manning and she began a detailed heart scan of our baby, this took an hour, she was thorough and didn't really speak as she was working. She took a lot of data and told us to wait whilst her colleague joined her to view the findings, one thing she did say to us was, 'yes, your baby does have a heart problem.' I thought that was funny when she said that, probably because the situation was about as unfunny as you can get and probably because we already knew.
Dr Manning called us into her office...The Diagnosis.
The first thing she said is what I have been hanging onto all weekend, 'We have seen this before and it is treatable.' I was elated.
She went on to explain that our baby's condition is very rare, they see about 1 to 2 babies a year with this particular set of problems. 4 problems in total. He has an 80 - 90% chance of survival.
When our baby is born he will be put on Prostin and before he can come home he will need open heart surgery. We we're devastated at this news, our perfect baby boy is going to be very poorly indeed.
Dr Manning passed me a box of tissues, I may have to invest in a few boxes myself! She drew us a diagram of our baby's heart and of a normal heart. (I will scan it and post it onto the blog.)
The diagnosis so far is-
- Double outlet right ventricle
- Large subpulmonary VSD
- Transposition of arteries
- Likely coarctation of the aorta
Armed with this information we headed home. I sent out texts to close friends to explain the situaiton, it made me feel terrible, noone wants to hear this stuff, it's awful.
To say the support we have received is fantastic is an understatement, we couldn't be more grateful. Obviously our close families are upset but there is hope and that is what we have to focus on from this point onwards.
Baby is doing fine right now and will continue to do so as long as I am pregnant, his problems will start as soon as he is born so everyone knows it will be a rocky road in January 2012.
We have a while to prepare ourselves and a while to pick a name too, we did like the name Harry but somehow this doesn't fit with this baby. Harry was meant to be a happy, bonny, healthy baby. I want something with a bit more clout, something that will give our baby strength...hmm, that should keep us busy!
I told Grace as little as possible, just that one side of baby's heart was a little bit smaller than it should be and they needed to check it out, Grace is 8 so she kind of gets it. She's happy she's going to have a little brother and has promised she is going to be chief story reader!
Before the appointment we we're in good spirits, I said to Alan that my worst case scenario is they will suggest we terminate the pregnancy. My best case scenario was that they can fix our baby.
(Immediately before we went in we got a call to say our house had sold, months of worry about that particular problem gone in an instant, isn't it strange how things go?)
Anyway...we met with Dr Nicky Manning and she began a detailed heart scan of our baby, this took an hour, she was thorough and didn't really speak as she was working. She took a lot of data and told us to wait whilst her colleague joined her to view the findings, one thing she did say to us was, 'yes, your baby does have a heart problem.' I thought that was funny when she said that, probably because the situation was about as unfunny as you can get and probably because we already knew.
Dr Manning called us into her office...The Diagnosis.
The first thing she said is what I have been hanging onto all weekend, 'We have seen this before and it is treatable.' I was elated.
She went on to explain that our baby's condition is very rare, they see about 1 to 2 babies a year with this particular set of problems. 4 problems in total. He has an 80 - 90% chance of survival.
When our baby is born he will be put on Prostin and before he can come home he will need open heart surgery. We we're devastated at this news, our perfect baby boy is going to be very poorly indeed.
Dr Manning passed me a box of tissues, I may have to invest in a few boxes myself! She drew us a diagram of our baby's heart and of a normal heart. (I will scan it and post it onto the blog.)
The diagnosis so far is-
- Double outlet right ventricle
- Large subpulmonary VSD
- Transposition of arteries
- Likely coarctation of the aorta
Armed with this information we headed home. I sent out texts to close friends to explain the situaiton, it made me feel terrible, noone wants to hear this stuff, it's awful.
To say the support we have received is fantastic is an understatement, we couldn't be more grateful. Obviously our close families are upset but there is hope and that is what we have to focus on from this point onwards.
Baby is doing fine right now and will continue to do so as long as I am pregnant, his problems will start as soon as he is born so everyone knows it will be a rocky road in January 2012.
We have a while to prepare ourselves and a while to pick a name too, we did like the name Harry but somehow this doesn't fit with this baby. Harry was meant to be a happy, bonny, healthy baby. I want something with a bit more clout, something that will give our baby strength...hmm, that should keep us busy!
What a week!
I have decided to start a 'blog' to document the journey we have somehow found ourselves on.
Here goes...
This time last week I was enjoying my pregnancy and looking forward to my 20 week scan, the scan took place on Thursday 8th September at 9.30am at Northampton Hospital.
This was to change the course of our lives, mine, my husbands and my daughters.
Having suffered a miscarriage in May 2010 at 10 weeks this pregnancy started with a fraught first 12 weeks, I was constantly on alert looking for signs of another miscarriage, I was neurotic about what I was eating and drinking, I can't say it was enjoyable, I was terrified every single day!!
...but the 12 week scan was a breeze, baby was alive and looked perfect!
We were so happy and really started to look forward to our future with a little baby brother or sister for Grace!
The next 8 weeks I began to relax a little, I even had the odd glass of wine (about 2 in total!)
Then came the 20 week scan, should we find out what we're having or not?
This went on for weeks, should we shouldn't we, anyway in the end we decided to find out!
I really wanted a boy and Alan said he didn't mind, (but I think he really wanted a girl.)
The morning of the scan I was confident that it would be a girl....we had picked the name Florence and pretty much thought it was a done deal.
To my complete surprise I got what I really wanted, a BOY!
The first part of the scan was routine, checking he had his arms and legs and a perfect little face.
The sonographer began to take a close look at baby's heart, she took measurements and kept going back to re-take them. Not a reassuring sign! When she said she was going to ask a colleague to confirm something I froze.
Alan and I looked at each other confused but I knew right away something was up.
Another lady came in and agreed there was a problem, we were told our baby's aorta was measuring small at 2.7mm. The aorta should be roughly the same size as the pulmonary apparently but that was measuring 4.3mm.
When the sonographer said she would be referring us to Oxford I burst into tears, what did this all mean??
We we're told to wait for a call from Oxford about our appointment.
So we went home, upset and confused but happy we we're expecting a boy, worried sick what was wrong with him.
Here goes...
This time last week I was enjoying my pregnancy and looking forward to my 20 week scan, the scan took place on Thursday 8th September at 9.30am at Northampton Hospital.
This was to change the course of our lives, mine, my husbands and my daughters.
Having suffered a miscarriage in May 2010 at 10 weeks this pregnancy started with a fraught first 12 weeks, I was constantly on alert looking for signs of another miscarriage, I was neurotic about what I was eating and drinking, I can't say it was enjoyable, I was terrified every single day!!
...but the 12 week scan was a breeze, baby was alive and looked perfect!
We were so happy and really started to look forward to our future with a little baby brother or sister for Grace!
The next 8 weeks I began to relax a little, I even had the odd glass of wine (about 2 in total!)
Then came the 20 week scan, should we find out what we're having or not?
This went on for weeks, should we shouldn't we, anyway in the end we decided to find out!
I really wanted a boy and Alan said he didn't mind, (but I think he really wanted a girl.)
The morning of the scan I was confident that it would be a girl....we had picked the name Florence and pretty much thought it was a done deal.
To my complete surprise I got what I really wanted, a BOY!
The first part of the scan was routine, checking he had his arms and legs and a perfect little face.
The sonographer began to take a close look at baby's heart, she took measurements and kept going back to re-take them. Not a reassuring sign! When she said she was going to ask a colleague to confirm something I froze.
Alan and I looked at each other confused but I knew right away something was up.
Another lady came in and agreed there was a problem, we were told our baby's aorta was measuring small at 2.7mm. The aorta should be roughly the same size as the pulmonary apparently but that was measuring 4.3mm.
When the sonographer said she would be referring us to Oxford I burst into tears, what did this all mean??
We we're told to wait for a call from Oxford about our appointment.
So we went home, upset and confused but happy we we're expecting a boy, worried sick what was wrong with him.
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