Firstly, a huge thank you to you all for your messages of support and love. I know I have been rubbish in replying to you all, but I have read every single one of them and they have helped immensely.
Since coming home yesterday H has been doing really well. He struggles to eat only if the pain relief is wearing off so we try and work around it. Last night was disturbed but not as bad as the night before. I am hoping tonight will be better still.
Funny thing just happened. I was flipping through my phone and came across a photo of H from a couple of weeks ago. It was only 2 days ago he looked like that, but it was a bit of a shock to see how big the cleft was. I'm not sure why I was shocked, I'm just surprised that I was. I sent the photo to a friend and she, unbidden, said exactly the same thing so I know it's not just me. It's amazing how quickly you forget.
I'll do a full blog about the op day when I get a bit more time. For now though I'm going to try and relax with Mr CD. If you're going to the CLAPA West Midlands Christmas Party on Saturday I hope you have a wonderful time. We can't be there sadly, but will try next year. If you are local to Warwick, Happy Faces is on tomorrow. I'll see you there!
Thursday 8 December 2016
Friday 2 December 2016
Smile
Last weekend was sponsored by Day Nurse and Dettol. Starting on Friday I managed to develop a heavy cold and my eldest spent Sunday battling a horrid sickness bug. This was not what we needed with less than 10 days until the operation. Skip forward to today and things are much better. Thanks to quarantining and liberal quantities of alcohol gel, we seem to have managed to keep H and the bugs separate. If we can keep this up until Tuesday then we will be happy.
Lots of people have been asking me how I am in the run up to the operation, and the honest answer has been 'fine'. I haven't been worried about it, or dreading it. In fact, in a perverse way, I have been slightly looking forward to it. Or if not looking forward to it, looking forward to getting it over with and putting it behind us. Its something we have been talking about for months and it feels like its time has come.
The last couple of days, however, I've had a new feeling. Its hard to explain what the feeling is, only what it isn't. It isn't fear. I am not scared for H, he will be in excellent hands, and although he will be in pain afterwards and that will be horrible he will be given painkillers so he can be comfortable. It's not apprehension, or worry. The closest thing I can get to it is sadness.
I'm sad because I'm going to miss him. Miss him as he is now, with his cleft making his wide smile that much wider. Miss him sticking his tongue through the gap in his gum when he's hungry. I'm going to miss the little boy he is. All babies grow up and change, but they do so gradually. This change will be big and sudden, and I'm not sure I'm ready for it. Then again I'm not sure you are ever ready for your child to change and grow. It tends to happen when you aren't looking.
I know this is for the best, that it needs to be done. I know that the surgeons will do an excellent job and that in a few weeks/months/years you may never know there was a cleft there. But that cleft is part of who H is, and its a part of him I will miss very much. I never thought I would feel this way but I do. I am looking forward to seeing what he will look like, but I will miss him for what he is now more than I can say.
_________________________________________________________________________________
After many conversations with Mr CD we have decided to 'live tweet' the day on the twitter & facebook to give a true account of our experiences on the day. You can follow us on @cleft_diary or https://www.facebook.com/CleftDiary - #HCleftOp
Lots of people have been asking me how I am in the run up to the operation, and the honest answer has been 'fine'. I haven't been worried about it, or dreading it. In fact, in a perverse way, I have been slightly looking forward to it. Or if not looking forward to it, looking forward to getting it over with and putting it behind us. Its something we have been talking about for months and it feels like its time has come.
The last couple of days, however, I've had a new feeling. Its hard to explain what the feeling is, only what it isn't. It isn't fear. I am not scared for H, he will be in excellent hands, and although he will be in pain afterwards and that will be horrible he will be given painkillers so he can be comfortable. It's not apprehension, or worry. The closest thing I can get to it is sadness.
I know this is for the best, that it needs to be done. I know that the surgeons will do an excellent job and that in a few weeks/months/years you may never know there was a cleft there. But that cleft is part of who H is, and its a part of him I will miss very much. I never thought I would feel this way but I do. I am looking forward to seeing what he will look like, but I will miss him for what he is now more than I can say.
_________________________________________________________________________________
After many conversations with Mr CD we have decided to 'live tweet' the day on the twitter & facebook to give a true account of our experiences on the day. You can follow us on @cleft_diary or https://www.facebook.com/CleftDiary - #HCleftOp
Friday 25 November 2016
Countdown
Tuesday of this week was an important day in our house in a couple of respects. Firstly it was my brothers birthday, but before you go thinking how lovely it is that I hold that day in such esteem you should know its less about the anniversary of his impinging on my status as only child, and more about that now it's out of the way I am allowed to get excited for Christmas. More importantly however, at least for the purposes of this blog, it marks 2 weeks until H's operation.
I genuinely cannot believe how quickly this has come around. The last 15 weeks have been a blur and I cant quite believe we have already passed on the first batch of clothes to pregnant friends. The rocking crib is up for sale, and H's personality is shining through. He is a very smiley boy and loves to play and be sung to. He has also started giggling over the last couple of weeks which is lovely, although he mainly giggles for his dad. His dad says its because he is funnier. I say its because he looks funnier.
The reflux has once again settled. He still has some but not so much he can't deal with it. He is back on the higher dose of Gaviscon and seems to be coping with it well although we do have laxatives on standby just in case.
Thank you for all your lovely messages wishing me well for my PND and my husband well for my constant singing of Evita. That particular obsession only lasted 5 days by which time I think Mr CleftDiary was ready to beat Andrew Lloyd-Webber with a hammer - moods are funny thing. I went from there to another obsession which needed headphones as it involved swearing. This had the added benefit of being much quieter. I am fine though, I caught it early and am feeling back to my normal(?) self.
No?
Well ok, moving on!
If you 'like' the page on facebook (and if not, why not!) you will have seen that last week was full of appointments. On Tuesday H had a scan on his kidneys, this involved having some dye injected through a cannula in his hand. Despite the nurses insistence that H would scream but it would be ok, he barely woke up. He was, however, wide awake while being scanned. This could have been an issue as he had to be very still for them to get the information they needed. He was brilliant though and stayed as still as you could possibly expect a baby to be. This made him the darling of the department as you can imagine.
Wednesday saw a return to BCH for the cleft clinic and pre-op. We were given plenty of information about what to bring, where to go and what would happen on the day. After the appointment we went and had a good nosey around. We found the play and admission centre and had a look around. It has an outdoor area, loads of toys, a sensory room and some games consoles, which Mr CleftDiary had to be steered away from. For my part, I had to be steered away by Mr CleftDiary from the Gruffalo statues. He was immune to my insistence that they would look great in the garden.
Although Wednesday was a little full of information, I think I have at least got the essentials of what I need to take with me. Mr CD has requested hospital accommodation so he can be on hand overnight which he will hopefully get but if we don't we know its because there are people who need it more than we do. Other than that I am trying not to think about it too much, other than getting as much Christmas shopping (or 'elfing' as we call it when in earshot of our oldest) done as possible. If the last 15 weeks has flown, the next 4 will do so even more.
I am considering live tweeting on the day of the operation (subject to the usual conditions of remembering and not being a complete mess on the day). It may have the downside of spamming your facebook/twitter page for the day, but the upside of giving me something to do. Let me know your thoughts.
I genuinely cannot believe how quickly this has come around. The last 15 weeks have been a blur and I cant quite believe we have already passed on the first batch of clothes to pregnant friends. The rocking crib is up for sale, and H's personality is shining through. He is a very smiley boy and loves to play and be sung to. He has also started giggling over the last couple of weeks which is lovely, although he mainly giggles for his dad. His dad says its because he is funnier. I say its because he looks funnier.
The reflux has once again settled. He still has some but not so much he can't deal with it. He is back on the higher dose of Gaviscon and seems to be coping with it well although we do have laxatives on standby just in case.
Thank you for all your lovely messages wishing me well for my PND and my husband well for my constant singing of Evita. That particular obsession only lasted 5 days by which time I think Mr CleftDiary was ready to beat Andrew Lloyd-Webber with a hammer - moods are funny thing. I went from there to another obsession which needed headphones as it involved swearing. This had the added benefit of being much quieter. I am fine though, I caught it early and am feeling back to my normal(?) self.
No?
Well ok, moving on!
If you 'like' the page on facebook (and if not, why not!) you will have seen that last week was full of appointments. On Tuesday H had a scan on his kidneys, this involved having some dye injected through a cannula in his hand. Despite the nurses insistence that H would scream but it would be ok, he barely woke up. He was, however, wide awake while being scanned. This could have been an issue as he had to be very still for them to get the information they needed. He was brilliant though and stayed as still as you could possibly expect a baby to be. This made him the darling of the department as you can imagine.
Wednesday saw a return to BCH for the cleft clinic and pre-op. We were given plenty of information about what to bring, where to go and what would happen on the day. After the appointment we went and had a good nosey around. We found the play and admission centre and had a look around. It has an outdoor area, loads of toys, a sensory room and some games consoles, which Mr CleftDiary had to be steered away from. For my part, I had to be steered away by Mr CleftDiary from the Gruffalo statues. He was immune to my insistence that they would look great in the garden.
Although Wednesday was a little full of information, I think I have at least got the essentials of what I need to take with me. Mr CD has requested hospital accommodation so he can be on hand overnight which he will hopefully get but if we don't we know its because there are people who need it more than we do. Other than that I am trying not to think about it too much, other than getting as much Christmas shopping (or 'elfing' as we call it when in earshot of our oldest) done as possible. If the last 15 weeks has flown, the next 4 will do so even more.
I am considering live tweeting on the day of the operation (subject to the usual conditions of remembering and not being a complete mess on the day). It may have the downside of spamming your facebook/twitter page for the day, but the upside of giving me something to do. Let me know your thoughts.
Saturday 12 November 2016
Up and Downs
Today was an exciting day in our house. My parents, who live next door to us, came back from 3 weeks election-rigging in the USA. My eldest son had missed them terribly, despite being assured that they were 'working' and not on holiday at all (ahem!)
What with them being away, half term, and what seems like endless medical appointments the last few weeks has disappeared in a flurry of school runs, running late and screaming (not all of it mine.) The one thing this last couple of weeks has taught me is that even if we could afford to privately educate our children we wouldn't, as that would mean having to keep them occupied for 2 weeks over a half term and 8 weeks in summer. We barely made it alive after only one week.
H is going on OK. He is 13 weeks now and we are only 3 1/2 weeks from his operation.You may remember from a previous post that he had reflux that had twice caused him to choke, once quite badly. Since then we had been giving him Gaviscon in every feed and it really seemed to help. We had no more reflux and no more choking, and the only side effect was that it made his poo a bit....playdoh-ey. A couple of weeks ago he started to reflux again but we had been told by the doctors that once he got beyond a certain weight we could increase the dosage of Gaviscon in his feed. Unfortunately, this had the effect of locking his poor little bowels solid, going from mild discomfort to screaming pain in a couple of days. After a quick chat with the cleft team and the GP's we took him off the Gaviscon and put him on something called Renitadine which works in a different way but has a similar effect. Whereas Gaviscon thickens the milk, Ranitidine decreases stomach acid production so in theory shouldn't turn his poo into concrete. Ranitidine does take a few days to get into the system so the reflux came back temporarily but in the end we decided to split it down the middle and give the Ranitidine and a lower dose of Gaviscon and that does seem to be working. As for H's solid bowels, we got some laxatives from the GP and that seems to have done the trick. This evening we have had a far happier baby than we've had for a couple of weeks.
Just as an aside, my top tip for situations requiring laxatives is to give the stated dose about an hour before you are due to go out with some friends for the evening, leaving the baby with your significant other. I do not recommend doing this to babysitters as these people are like gold dust and you to not want to piss them off.
I am hoping that the reflux/constipation issues will sort themselves out now as it was affecting H's feeding and that is the last thing we want this close to the operation. He hasn't got the most relaxing week coming up either, what with test on his kidneys on Tuesday (not cleft related) where he will be injected with dye and scanned, followed by cleft clinic and pre-op on Wednesday and injections Thursday, he is going to be in a cracking mood for our family weekend away next Friday.
Mental note: Pack Calpol.
___________________________________________________________________________
One final thing to mention, and while not strictly related I think it is important to talk about.
This week, I was prescribed antidepressants for Post-Natal Depression. I have suffered from depression various times over the last 10 years, and been on these particular tablets before and they have worked well for me. What I have been feeling the last couple of weeks is not typical of the depression I have had in the past. Before there would be a slow decline in mood until one thing tipped me over the cliff and into the void. Once you have 'gone over' it is a long and difficult process to get back to where you were.
I am pleased to say that that void is not what I have been experiencing recently. Instead of a slow decline, my moods have been wildly erratic. While the lows have been awful they had been manageable until one particularly low moment last week when I realised (with the help of a wonderful midwife) that if I didn't get help I would go over the edge and soon. I owe it to my family to be mentally well enough to look after them and myself so I sought help.
I am confident, as is my GP, that these mood swings are hormonal in nature. I do have trouble with hormones and I think mine are just not settling down as quickly as they should. They are certainly nothing to do with H's cleft or his impeding operation. While I know it will be hard on the day, I have complete trust in the team at BCH and up to now I have had no worries or concerns about it. I am sure that will change closer to the time, that is only natural, but it is not the source of my depression at the moment.
It may seem self indulgent to write about this, or maybe it seems like a ploy to gain attention. I can assure you it is none of these things. I am evangelical about the need to talk openly about mental health issues, but I normally only do so when I am well. Talking about it when I haven't been myself is hard. It is harder when you seem well on the outside, which in public I am fairly confident I do. I know I avoid eye contact when I'm starting on a downward slope, it's one of my internal warning signs which tells me to monitor my mood closely.
The tablets take a good few days to get into your system properly, but I am already noticing some positive effects. Most noticeable today was giddiness, which this medication has been known to induce in me. It caused me to be dancing round the kitchen doing a rather fantastic (if I do say so myself...and I do) rendition of 'Oh What a Circus' from Evita for nearly an hour. In general though I feel the mood swings lessening in severity which is a massive bonus....if only for my poor husband.
For one thing, he hates musicals.
What with them being away, half term, and what seems like endless medical appointments the last few weeks has disappeared in a flurry of school runs, running late and screaming (not all of it mine.) The one thing this last couple of weeks has taught me is that even if we could afford to privately educate our children we wouldn't, as that would mean having to keep them occupied for 2 weeks over a half term and 8 weeks in summer. We barely made it alive after only one week.
H is going on OK. He is 13 weeks now and we are only 3 1/2 weeks from his operation.You may remember from a previous post that he had reflux that had twice caused him to choke, once quite badly. Since then we had been giving him Gaviscon in every feed and it really seemed to help. We had no more reflux and no more choking, and the only side effect was that it made his poo a bit....playdoh-ey. A couple of weeks ago he started to reflux again but we had been told by the doctors that once he got beyond a certain weight we could increase the dosage of Gaviscon in his feed. Unfortunately, this had the effect of locking his poor little bowels solid, going from mild discomfort to screaming pain in a couple of days. After a quick chat with the cleft team and the GP's we took him off the Gaviscon and put him on something called Renitadine which works in a different way but has a similar effect. Whereas Gaviscon thickens the milk, Ranitidine decreases stomach acid production so in theory shouldn't turn his poo into concrete. Ranitidine does take a few days to get into the system so the reflux came back temporarily but in the end we decided to split it down the middle and give the Ranitidine and a lower dose of Gaviscon and that does seem to be working. As for H's solid bowels, we got some laxatives from the GP and that seems to have done the trick. This evening we have had a far happier baby than we've had for a couple of weeks.
Just as an aside, my top tip for situations requiring laxatives is to give the stated dose about an hour before you are due to go out with some friends for the evening, leaving the baby with your significant other. I do not recommend doing this to babysitters as these people are like gold dust and you to not want to piss them off.
I am hoping that the reflux/constipation issues will sort themselves out now as it was affecting H's feeding and that is the last thing we want this close to the operation. He hasn't got the most relaxing week coming up either, what with test on his kidneys on Tuesday (not cleft related) where he will be injected with dye and scanned, followed by cleft clinic and pre-op on Wednesday and injections Thursday, he is going to be in a cracking mood for our family weekend away next Friday.
Mental note: Pack Calpol.
___________________________________________________________________________
One final thing to mention, and while not strictly related I think it is important to talk about.
This week, I was prescribed antidepressants for Post-Natal Depression. I have suffered from depression various times over the last 10 years, and been on these particular tablets before and they have worked well for me. What I have been feeling the last couple of weeks is not typical of the depression I have had in the past. Before there would be a slow decline in mood until one thing tipped me over the cliff and into the void. Once you have 'gone over' it is a long and difficult process to get back to where you were.
I am pleased to say that that void is not what I have been experiencing recently. Instead of a slow decline, my moods have been wildly erratic. While the lows have been awful they had been manageable until one particularly low moment last week when I realised (with the help of a wonderful midwife) that if I didn't get help I would go over the edge and soon. I owe it to my family to be mentally well enough to look after them and myself so I sought help.
I am confident, as is my GP, that these mood swings are hormonal in nature. I do have trouble with hormones and I think mine are just not settling down as quickly as they should. They are certainly nothing to do with H's cleft or his impeding operation. While I know it will be hard on the day, I have complete trust in the team at BCH and up to now I have had no worries or concerns about it. I am sure that will change closer to the time, that is only natural, but it is not the source of my depression at the moment.
It may seem self indulgent to write about this, or maybe it seems like a ploy to gain attention. I can assure you it is none of these things. I am evangelical about the need to talk openly about mental health issues, but I normally only do so when I am well. Talking about it when I haven't been myself is hard. It is harder when you seem well on the outside, which in public I am fairly confident I do. I know I avoid eye contact when I'm starting on a downward slope, it's one of my internal warning signs which tells me to monitor my mood closely.
The tablets take a good few days to get into your system properly, but I am already noticing some positive effects. Most noticeable today was giddiness, which this medication has been known to induce in me. It caused me to be dancing round the kitchen doing a rather fantastic (if I do say so myself...and I do) rendition of 'Oh What a Circus' from Evita for nearly an hour. In general though I feel the mood swings lessening in severity which is a massive bonus....if only for my poor husband.
For one thing, he hates musicals.
Monday 24 October 2016
Who Nose
I was coming out of the GP surgery the other day when I got caught a crowd of kids pouring out of the bus from our local high school. I was trying to steer the buggy through the mass of teenagers when I saw him.
He was tall, with his tie undone, shirt untucked and his bag slung casually over his shoulder. I watched him walk down the road in the centre of a large group of boys, laughing, joking and brimming with confidence.
I didn't initially notice any of that though.
What I saw, was his nose.
It was just like H's. Flat on his left hand side.
At BCH the consultant had discussed H's nose. For some reason I had thought that the flatness would be corrected as part of the lip operation however this is not the case. The hospital do offer a rhinoplasty but as a general rule they do not consider it until the child is in their mid teens so that they can make the decision themselves. When we thought about it, we completely agreed with that approach. It is one thing to consent to operations on medical grounds, but beyond that we feel that it is for H to make an informed decision about what happens to his own body.
My approach to this whole experience has been to take everything one step at a time, and not worry about the future until it is here. As such I hadn't thought any more about H's nose until I saw this young man getting off the bus. As soon as I registered what I was seeing I braced myself to feel panic. As someone who had a, frankly, shit high school experience, I am not relishing the thought of either of my boys attending the local high school. In that moment, it occurred to me that H could be in for a rougher ride than I had previously considered. But then I looked again, and the panic I was expecting wasn't there.
The boy was surrounded by a large group of young people, and shouting farewell and others as he headed for home. He was smiling and joking. He was clearly enjoying himself in a way I never did at his age.
I have made a commitment never to talk about my high school experience to my boys. My brother went to the same school 3 years behind me had a very different experience and a long time has passed since we were there. L & H's school experience will in all probability be completely different to mine, and I don't want to prejudice their experience. That said I wouldn't be human if I didn't worry a little bit.
I really hesitated writing this. I'm not sure what conclusion you as a reader are meant to draw and I am completely aware of how presumptuous and even hypocritical I sound. I am in no way saying that all children with clefts have a rough time at school. I don't even know that the boy I saw had a cleft. However, the point of this blog is to be honest, When I looked at that boy I saw my son in 15 years time, and my past experiences are bound to affect my hopes and fears for my children. That said, I walked away from that boy surrounded by his friends and I was smiling - oddly full of hope for something I wasn't aware that I was worried about until 30 seconds earlier.
Tuesday 11 October 2016
Birmingham Children's Hospital
It is with a certain amount of horror that I realise my last post was the 21st September. How is it October already? I am aware that time speeds by when you have children but it genuinely doesn't feel like a week ago that I posted last and a I could have sworn the Birmingham Children's Hospital appointment was a matter of days ago.
Generally everything is going well here. H is eating and sleeping well and weighed 12lbs today. He flew through his 6 week check with the GP (although I swear he was trying to gas the poor doctor, I've not heard that much wind come from something so small ever before) and he coped with his vaccinations really well. Or did I just calpol him through it? Either way he was and is fine.
Our first trip to Birmingham Children's Hospital was a couple of weeks ago. I wasn't particularly nervous in the run up, just conscious that this was my opportunity to ask intelligent questions.
Although I had heard from many people how good BCH was I genuinely wasn't expecting to be blown away by the place, but blown away I was. Admittedly, we only visited Outpatients, but the whole place felt happy. It was bright, bubbly and (and I really do mean it in the best possible sense) nicely chaotic. Any room with that many children is bound to be chaotic, but it was brilliantly managed. The outpatients department itself is full of comfy, funky chairs. There are lots of toys for the kids and screens showing Disney films as well as a coffee area for grown ups with a caffeine addiction.
Everyone we met and spoke to, without exception, was lovely. I mean really lovely. Everything was explained with a smile and a joke, we were encouraged to asked questions and they were always answered. The staff running the desks in outpatients were spinning plates dealing with patients and the clinical team but in the 3 1/2 hours we were there I never saw them drop one.
Although 3 1/2 hours seems like a long time, we were never kept waiting more than 20 minutes for any one thing. There were a lot of people to see and the breaks in between meant we could digest what had been said, discuss it and come back with any questions if we thought of any.
That afternoon we saw the following people/departments.
Nurse
To get weights and measurements. Of H, obviously. I don't think they'd have big enough scales for me.
Psychologist
To see how we were coping and to explain what her role within the Cleft team was. Essentially she said that she was there to help us if we felt there were any problems or worries we had.
Mum said she'd need to hire extra staff.
Consultant
Our consultant is Ms Rorison and we met her along with one of the cleft nurses and the speech and language therapist. Ms Rorison went through the procedure with us, explaining that she would be rectifying the cleft lip and the vomer flap which separates part of the nose. By doing this earlier it is believed that it aids with the development of speech and language.
The operation will take approximately 90 minutes although H will be away from us longer due to preparation and recovery time.
The operation has been set for 6th December.
Pre-Operative Assessment
We were asked a few questions about H's general health to see if a full pre-op assessment would be needed. Due to H's dilated kidney, one would be required.
Clinical Photography
To take photographs of the lip and palate for H's medical records. Of course he was catching flies outside the room and right up until the moment the camera came out, whereupon he shut his mouth and refused to open it.
We have now had confirmation of our admission on 6th December as well as a pre-op in mid November and a followup appointment the week after the appointment.
Although we were there for a few hours, it didn't feel like we were.
I really want to thank everyone at BCH, and particularly the cleft team, for making this process so much easier. I have said before that these are the people who make the NHS the best health service in the world, despite what certain sections of government and the media would have you believe. Thank you.
Generally everything is going well here. H is eating and sleeping well and weighed 12lbs today. He flew through his 6 week check with the GP (although I swear he was trying to gas the poor doctor, I've not heard that much wind come from something so small ever before) and he coped with his vaccinations really well. Or did I just calpol him through it? Either way he was and is fine.
Our first trip to Birmingham Children's Hospital was a couple of weeks ago. I wasn't particularly nervous in the run up, just conscious that this was my opportunity to ask intelligent questions.
Although I had heard from many people how good BCH was I genuinely wasn't expecting to be blown away by the place, but blown away I was. Admittedly, we only visited Outpatients, but the whole place felt happy. It was bright, bubbly and (and I really do mean it in the best possible sense) nicely chaotic. Any room with that many children is bound to be chaotic, but it was brilliantly managed. The outpatients department itself is full of comfy, funky chairs. There are lots of toys for the kids and screens showing Disney films as well as a coffee area for grown ups with a caffeine addiction.
Everyone we met and spoke to, without exception, was lovely. I mean really lovely. Everything was explained with a smile and a joke, we were encouraged to asked questions and they were always answered. The staff running the desks in outpatients were spinning plates dealing with patients and the clinical team but in the 3 1/2 hours we were there I never saw them drop one.
Although 3 1/2 hours seems like a long time, we were never kept waiting more than 20 minutes for any one thing. There were a lot of people to see and the breaks in between meant we could digest what had been said, discuss it and come back with any questions if we thought of any.
That afternoon we saw the following people/departments.
Nurse
To get weights and measurements. Of H, obviously. I don't think they'd have big enough scales for me.
Psychologist
To see how we were coping and to explain what her role within the Cleft team was. Essentially she said that she was there to help us if we felt there were any problems or worries we had.
Mum said she'd need to hire extra staff.
Consultant
Our consultant is Ms Rorison and we met her along with one of the cleft nurses and the speech and language therapist. Ms Rorison went through the procedure with us, explaining that she would be rectifying the cleft lip and the vomer flap which separates part of the nose. By doing this earlier it is believed that it aids with the development of speech and language.
The operation will take approximately 90 minutes although H will be away from us longer due to preparation and recovery time.
The operation has been set for 6th December.
Pre-Operative Assessment
We were asked a few questions about H's general health to see if a full pre-op assessment would be needed. Due to H's dilated kidney, one would be required.
Clinical Photography
To take photographs of the lip and palate for H's medical records. Of course he was catching flies outside the room and right up until the moment the camera came out, whereupon he shut his mouth and refused to open it.
We have now had confirmation of our admission on 6th December as well as a pre-op in mid November and a followup appointment the week after the appointment.
Although we were there for a few hours, it didn't feel like we were.
I really want to thank everyone at BCH, and particularly the cleft team, for making this process so much easier. I have said before that these are the people who make the NHS the best health service in the world, despite what certain sections of government and the media would have you believe. Thank you.
Wednesday 21 September 2016
The Kindness of Strangers
Afternoon!
I have managed to sneak upstairs on the pretext of tidying up (pffft!) to come and update you on what is happening in our world.
The gavisgon seems to be working really well and we haven't had a choking fit since. H seems a lot more settled and we are a lot calmer.
We went to our first Happy Faces group in Warwick on 9th September which was fantastic. It was so nice to meet other parents and prospective parents and have a bit of a natter. Thank you so much to Jo for organising it. The the next meeting for Warwick is the 14th October and you can register here.
Next week H has his first appointment with the cleft clinic and his consultant, Ms Rorison, at Birmingham Children's Hospital. I will post an update after that.
Otherwise there isnt much to report, so I thought I would write about peoples reaction to H when they saw him for the first time. It was something I thought a lot about before he was born and I know from messages I have had from other people, that they worried too.
_________________________________________________________________________________
One of the things I worried about when I found out that H had a cleft was the reaction of other people.
Before H arrived, we went for the 'loud and proud' method of notification. We told everyone who asked about me or the baby and everyone was amazingly supportive.
We looked for a way of informing our wider community. As odd as it sounds we didn't just want to put something on Facebook as we didn't want it to come across as attention seeking. I am aware how odd that is considering I am now blogging about it, but there you are. We found out that CLAPA were doing a sponsored walk in our area and that seemed to be a great idea. It would be good to raise money for a charity that would be doing a lot to support us over the next few years and to meet other families who had been affected by clefts. It also had the added bonus of being an excuse to put something on social media in the form of a 'Just Giving' link.
Our friends and family were incredibly supportive. The emails and messages I got from people were overwhelming and we raised an incredible amount for CLAPA. I almost felt guilty as we were, all told, going for a nice stroll around a lake followed by lunch. Hardly a trek up Kilimanjaro, but the money would go to a worthy cause so it didn't matter.
The day itself was lovely. We walked around Arrow Valley park in Redditch and were joined by our family, all in CLAPA t-shirts. There was a fantastic atmosphere and it was lovely to meet so many people.
New babies, as everyone knows, are people magnets and this is where the real worry lay for me. I had visions in my head of a nice old lady stopping me in the shop and asking to have a look, only to do a double take and stumble over her words as she tries not to say anything. I had visions of people looking shocked, or horrified, or shaking their head. From my, now rational, point of view I know how silly this sounds but at the time it was a real fear. If you are pregnant with a cleft baby and are reading this now, let me tell you that none of that has ever happened. People have been unfailingly polite, kind and positive about it.
The first person who saw H who didn't know was an elderly lady in the middle of M&S. It was almost exactly like the visions I had had while pregnant. I braced myself for the shock which never came. She simply said "Oh he has a hair lip, how soon do they operate on those nowadays?" That was it. Some people don't mention it, some ask if I mind them asking questions about it which I never do. Most people, though, are genuinely interested and caring.
A special mention must go to the two ladies who were in Aldi the last time that H had a choking fit. They saw me trying to clear his airway and came over to see if they could help. One began to tell me how her son had been sick a lot and asked if I was a first time mum. I think probably because of how panicked I looked. When I said I wasn't and explained about the cleft and how that made it more difficult to clear his airway they couldn't have been more helpful and lovely. I didn't get their names, but they really helped me be calm and rational when all I wanted to do was scream. Thank you
I have managed to sneak upstairs on the pretext of tidying up (pffft!) to come and update you on what is happening in our world.
The gavisgon seems to be working really well and we haven't had a choking fit since. H seems a lot more settled and we are a lot calmer.
We went to our first Happy Faces group in Warwick on 9th September which was fantastic. It was so nice to meet other parents and prospective parents and have a bit of a natter. Thank you so much to Jo for organising it. The the next meeting for Warwick is the 14th October and you can register here.
Next week H has his first appointment with the cleft clinic and his consultant, Ms Rorison, at Birmingham Children's Hospital. I will post an update after that.
Otherwise there isnt much to report, so I thought I would write about peoples reaction to H when they saw him for the first time. It was something I thought a lot about before he was born and I know from messages I have had from other people, that they worried too.
_________________________________________________________________________________
One of the things I worried about when I found out that H had a cleft was the reaction of other people.
Before H arrived, we went for the 'loud and proud' method of notification. We told everyone who asked about me or the baby and everyone was amazingly supportive.
We looked for a way of informing our wider community. As odd as it sounds we didn't just want to put something on Facebook as we didn't want it to come across as attention seeking. I am aware how odd that is considering I am now blogging about it, but there you are. We found out that CLAPA were doing a sponsored walk in our area and that seemed to be a great idea. It would be good to raise money for a charity that would be doing a lot to support us over the next few years and to meet other families who had been affected by clefts. It also had the added bonus of being an excuse to put something on social media in the form of a 'Just Giving' link.
Our friends and family were incredibly supportive. The emails and messages I got from people were overwhelming and we raised an incredible amount for CLAPA. I almost felt guilty as we were, all told, going for a nice stroll around a lake followed by lunch. Hardly a trek up Kilimanjaro, but the money would go to a worthy cause so it didn't matter.
The day itself was lovely. We walked around Arrow Valley park in Redditch and were joined by our family, all in CLAPA t-shirts. There was a fantastic atmosphere and it was lovely to meet so many people.
New babies, as everyone knows, are people magnets and this is where the real worry lay for me. I had visions in my head of a nice old lady stopping me in the shop and asking to have a look, only to do a double take and stumble over her words as she tries not to say anything. I had visions of people looking shocked, or horrified, or shaking their head. From my, now rational, point of view I know how silly this sounds but at the time it was a real fear. If you are pregnant with a cleft baby and are reading this now, let me tell you that none of that has ever happened. People have been unfailingly polite, kind and positive about it.
The first person who saw H who didn't know was an elderly lady in the middle of M&S. It was almost exactly like the visions I had had while pregnant. I braced myself for the shock which never came. She simply said "Oh he has a hair lip, how soon do they operate on those nowadays?" That was it. Some people don't mention it, some ask if I mind them asking questions about it which I never do. Most people, though, are genuinely interested and caring.
A special mention must go to the two ladies who were in Aldi the last time that H had a choking fit. They saw me trying to clear his airway and came over to see if they could help. One began to tell me how her son had been sick a lot and asked if I was a first time mum. I think probably because of how panicked I looked. When I said I wasn't and explained about the cleft and how that made it more difficult to clear his airway they couldn't have been more helpful and lovely. I didn't get their names, but they really helped me be calm and rational when all I wanted to do was scream. Thank you
Saturday 10 September 2016
Off Topic - Pre & Post Natal Depression Awareness Week
Afternoon! I wanted to share this post from a fabulous blog regarding Pre & Post Natal depression. The blog is called 'Hurrah for Gin' (a sentiment I fully endorse) and can be found here.
I am evangelical about the need to openly discuss mental health issues in general but I wanted to share this because having a baby is HARD, in someways labour is the easy bit. It is hard and exhausting and your hormones are screwed and that's just a baseline. Add to that having a child with additional needs and it can feel like your drowning.
If you feel like you're not coping, talk to someone. Your partner, friend, family member, midwife, health visitor, GP or the even Samaritans - an amazing charity who are always there. Their number is 116 123.
I am evangelical about the need to openly discuss mental health issues in general but I wanted to share this because having a baby is HARD, in someways labour is the easy bit. It is hard and exhausting and your hormones are screwed and that's just a baseline. Add to that having a child with additional needs and it can feel like your drowning.
If you feel like you're not coping, talk to someone. Your partner, friend, family member, midwife, health visitor, GP or the even Samaritans - an amazing charity who are always there. Their number is 116 123.
If you are struggling, know that it isn't just you. You are not alone. It will get better and, most importantly, there is no shame in asking for help.
Tuesday 6 September 2016
Cough and Splutter
Well, we are 3 weeks and 5 days into the the reign of H and he's doing well. He is feeding well, around 120ml a time give or take. Given that, its no surprise that he is putting on weight well and at last check was nearly 1lb over his birth weight.
That's not to say its all been complete plain sailing, in fact H seems to have been delighting in scaring the crap out of me over the last week and a half. It started a week ago last Friday during an unusual period of quiet in the house. H was asleep in his basket and I was sat reading with a cup of tea. I noticed his legs move and thought he was waking up, but he wasn't crying so I left him to it. A few minutes later he started gurgling quietly but, assuming he was playing, I didn't pay much notice. A minute or so later I got up to let the dog out in the garden and happened to look over into the basket.
His eyes were wide and there was milky vomit around his face and head. He was pale - verging on blue. I picked him up, turned him on his front and tapped his back to clear his airway. A couple of taps did the trick and he soon was screaming.
I was not, but god knows I felt like it.
Thankfully my mum was around to help me get him cleared up and bring me down off the ceiling. I was used to him choking a little but when we gave him thick things, like Infracol and his antibiotics, but that isn't a problem when you're there on hand holding him. The fact that this was nearly two hours post feed, he was in his Moses basket and I was completely unaware until I happened to be passing...that freaked me out.
I spoke to the midwife, the cleft team and got H checked by the GP. Thankfully everything seemed ok with him. I was a bit of a wreck for a few days mind; jumping up every time he coughed or spluttered, or when he didn't cough and splutter, or for any reason at all really. It had happened once before in hospital, but elevating one end of the cot seemed to sort it and it hadn't happened again until that day. I am not generally a worrier where kids are concerned (although after reading this blog you may disagree). I generally take the line with my 3 year old that as long as it doesn't involve fire arms, a blade or poison, he will be fine and if he hurts himself he won't do it again in a hurry. This is in stark contrast to my sainted mother-in-law who has a coronary every time my eldest goes within 5 meters of a step. How she raised 3 boys, especially THOSE three, without having continuous breakdowns is beyond me.
After a few days I calmed down and carried on as normal, but then it happened again last Thursday. Thankfully it wasn't as bad this time, I was in Aldi (other supermarkets are available) and I noticed at the check out that he was struggling to breathe. I got him out and cleared his airway and he seemed fine. I think a combination of him being sat in his car seat and me noticing sooner helped.
Another call to the ever present and ever helpful cleft team and the GP, H has been put on infant Gaviscon and it does seem to be helping. There is less coming up and he seems a bit more chilled out generally. It's funny, but during all of the discussions we had as a family and with Doctors and Midwives after the diagnosis, it had never occurred to me that H's airway would be in any way compromised (for want of a better word).
So for now I'm keeping an eye on things, but the Gaviscon does really seem to be helping. We are also making sure we keep H upright for 20 minutes after a feed, which he isn't too keen on as he tends to go into a milk coma. In the mean time I am hoping H is getting all of his 'scaring mummy' urges out of his system, ideally before he reaches his teens and can start doing genuinely scary things!
In other news.
A massive welcome to any readers who found their way here via the BCH newsletter. I hope you find this blog helpful and that you enjoy reading it - even if it is only to laugh at me! If you would like to keep up to date with the blog and sporadic other posts, I have a Facebook page and a twitter account. Come and say hi!
https://www.facebook.com/CleftDiary/
https://twitter.com/cleft_diary
Finally, H and I are off to our first Happy Faces group on Friday in Warwick. Maybe I'll see some of you there.
That's not to say its all been complete plain sailing, in fact H seems to have been delighting in scaring the crap out of me over the last week and a half. It started a week ago last Friday during an unusual period of quiet in the house. H was asleep in his basket and I was sat reading with a cup of tea. I noticed his legs move and thought he was waking up, but he wasn't crying so I left him to it. A few minutes later he started gurgling quietly but, assuming he was playing, I didn't pay much notice. A minute or so later I got up to let the dog out in the garden and happened to look over into the basket.
His eyes were wide and there was milky vomit around his face and head. He was pale - verging on blue. I picked him up, turned him on his front and tapped his back to clear his airway. A couple of taps did the trick and he soon was screaming.
I was not, but god knows I felt like it.
Thankfully my mum was around to help me get him cleared up and bring me down off the ceiling. I was used to him choking a little but when we gave him thick things, like Infracol and his antibiotics, but that isn't a problem when you're there on hand holding him. The fact that this was nearly two hours post feed, he was in his Moses basket and I was completely unaware until I happened to be passing...that freaked me out.
I spoke to the midwife, the cleft team and got H checked by the GP. Thankfully everything seemed ok with him. I was a bit of a wreck for a few days mind; jumping up every time he coughed or spluttered, or when he didn't cough and splutter, or for any reason at all really. It had happened once before in hospital, but elevating one end of the cot seemed to sort it and it hadn't happened again until that day. I am not generally a worrier where kids are concerned (although after reading this blog you may disagree). I generally take the line with my 3 year old that as long as it doesn't involve fire arms, a blade or poison, he will be fine and if he hurts himself he won't do it again in a hurry. This is in stark contrast to my sainted mother-in-law who has a coronary every time my eldest goes within 5 meters of a step. How she raised 3 boys, especially THOSE three, without having continuous breakdowns is beyond me.
After a few days I calmed down and carried on as normal, but then it happened again last Thursday. Thankfully it wasn't as bad this time, I was in Aldi (other supermarkets are available) and I noticed at the check out that he was struggling to breathe. I got him out and cleared his airway and he seemed fine. I think a combination of him being sat in his car seat and me noticing sooner helped.
Another call to the ever present and ever helpful cleft team and the GP, H has been put on infant Gaviscon and it does seem to be helping. There is less coming up and he seems a bit more chilled out generally. It's funny, but during all of the discussions we had as a family and with Doctors and Midwives after the diagnosis, it had never occurred to me that H's airway would be in any way compromised (for want of a better word).
So for now I'm keeping an eye on things, but the Gaviscon does really seem to be helping. We are also making sure we keep H upright for 20 minutes after a feed, which he isn't too keen on as he tends to go into a milk coma. In the mean time I am hoping H is getting all of his 'scaring mummy' urges out of his system, ideally before he reaches his teens and can start doing genuinely scary things!
In other news.
A massive welcome to any readers who found their way here via the BCH newsletter. I hope you find this blog helpful and that you enjoy reading it - even if it is only to laugh at me! If you would like to keep up to date with the blog and sporadic other posts, I have a Facebook page and a twitter account. Come and say hi!
https://www.facebook.com/CleftDiary/
https://twitter.com/cleft_diary
Finally, H and I are off to our first Happy Faces group on Friday in Warwick. Maybe I'll see some of you there.
Monday 29 August 2016
Well....That happened!
I'm not entirely sure where the last two weeks have gone, although most of it seems to have been spent holding a bottle.
Of milk that is. Not gin.
Ok, sometimes gin. Anyway...
Yes, two weeks ago baby H arrived on the scene in the early hours of the morning. A little smaller than we expected (although not small by any means; anyone who describes 7lb 9 as small has clearly never had to push something that size out of their foo). I had started the induction process 3 days earlier and had been on the drip for almost 11 hours by the time he finally decided to make a dramatic appearance.
I will spare you the details. The chances are that if you are reading this you or your partner have been through labour and so don't need reminding, or you will be going through it soon and will find out for yourself.
Anyway, he is here. He is safe, and healthy and my husband and I are happy (if perpetually tired).
So what happened before/after the birth? Instead of a confusing chronology, and as I am an avid fan a list, I will set things out by subject.
Before Delivery:
What was the plan?
As I was in hospital for nearly 4 days before H finally showed his face, there was plenty of time to come up with a plan. However, even if I had only been there for a few hours before delivery I am confident the plan would have been the same.
I have to say at this point that all of the staff at the hospital were wonderful, with a special mention to all of the midwives who dealt with me for the three days before labour started. I only had one sense of humor failure and it was pretty spectacular, but they were always kind, generous, funny and a credit to the NHS.
All the midwives knew the plan and handed over the following shift fully so everyone knew what was going on. The plan was that on delivery there would be two midwives in the room, which is normal, and two pediatricians to check the baby over when he arrived. The best laid plans however....
When H did decide to make an appearance it was very, VERY, quick. So the pediatricians weren't there but thankfully weren't needed.
Did you have pain relief?
Yes. I am neither mental nor a masochist!
After Delivery:
Was the cleft diagnosis correct?
Yes. H has a left side unilateral cleft lip, palate and gum. The cleft palate goes front to back on the left side as well as some missing at the back on the right.
Did the baby have to go to Special Care Baby Unit?
About an hour after delivery (or was it 10 minutes? or 3 hours? To be honest I wasn't in my right mind, it may have been weeks!) my husband took H to the SCBU. This wasn't done immediately so there was plenty of time official introductions. The SCBU staff put a small tube into his stomach to check for acidity levels, although this was more to do with the fact that there had been increased amniotic fluid than the cleft. Then the SCBU staff showed my husband how to feed him with the special squeezy bottles that Jo from BCH had given them, and that we had miraculously not lost AND remembered to pack! Star on the star chart for us.
H and husband then returned some time later and the three of us were transferred to postnatal ward.
The midwives had been able to arrange a side room for us in the postnatal ward which was an incredible help not only in my recovery, but in bonding time with H as well. I'm not sure what the rule is about side rooms across the NHS but I would definitely recommend asking.
How is he Feeding?
Well, actually. He likes his food but that is no suprise to anyone who has met his dad and brother - both gannets. At is 18days old H is regularly taking 90-120ml. He is taking on wind and we to spend a lot of time encouraging burping but he seems to be coping quite well. Sometimes we don't get it all and the wind 'goes south' and gets trapped in his lower stomach and which point we know about it!!!!
BCH Cleft Team visits.
Jo visited us in hospital on the day that H was born and again 2 days after we came home. She was very happy with how H was getting on. We have been assigned a Consultant and our first appointment with BCH is at the end of next month. At that point we will get our date for the lip operation.
So, that's where we are now. I think I've covered the basics.
Apologies for the rambling, nonsensical nature of the above. There is a reason sleep depravation is covered by the Geneva Convention.
Of milk that is. Not gin.
Ok, sometimes gin. Anyway...
Yes, two weeks ago baby H arrived on the scene in the early hours of the morning. A little smaller than we expected (although not small by any means; anyone who describes 7lb 9 as small has clearly never had to push something that size out of their foo). I had started the induction process 3 days earlier and had been on the drip for almost 11 hours by the time he finally decided to make a dramatic appearance.
I will spare you the details. The chances are that if you are reading this you or your partner have been through labour and so don't need reminding, or you will be going through it soon and will find out for yourself.
Anyway, he is here. He is safe, and healthy and my husband and I are happy (if perpetually tired).
So what happened before/after the birth? Instead of a confusing chronology, and as I am an avid fan a list, I will set things out by subject.
Before Delivery:
What was the plan?
As I was in hospital for nearly 4 days before H finally showed his face, there was plenty of time to come up with a plan. However, even if I had only been there for a few hours before delivery I am confident the plan would have been the same.
I have to say at this point that all of the staff at the hospital were wonderful, with a special mention to all of the midwives who dealt with me for the three days before labour started. I only had one sense of humor failure and it was pretty spectacular, but they were always kind, generous, funny and a credit to the NHS.
All the midwives knew the plan and handed over the following shift fully so everyone knew what was going on. The plan was that on delivery there would be two midwives in the room, which is normal, and two pediatricians to check the baby over when he arrived. The best laid plans however....
When H did decide to make an appearance it was very, VERY, quick. So the pediatricians weren't there but thankfully weren't needed.
Did you have pain relief?
Yes. I am neither mental nor a masochist!
After Delivery:
Was the cleft diagnosis correct?
Yes. H has a left side unilateral cleft lip, palate and gum. The cleft palate goes front to back on the left side as well as some missing at the back on the right.
Did the baby have to go to Special Care Baby Unit?
About an hour after delivery (or was it 10 minutes? or 3 hours? To be honest I wasn't in my right mind, it may have been weeks!) my husband took H to the SCBU. This wasn't done immediately so there was plenty of time official introductions. The SCBU staff put a small tube into his stomach to check for acidity levels, although this was more to do with the fact that there had been increased amniotic fluid than the cleft. Then the SCBU staff showed my husband how to feed him with the special squeezy bottles that Jo from BCH had given them, and that we had miraculously not lost AND remembered to pack! Star on the star chart for us.
H and husband then returned some time later and the three of us were transferred to postnatal ward.
The midwives had been able to arrange a side room for us in the postnatal ward which was an incredible help not only in my recovery, but in bonding time with H as well. I'm not sure what the rule is about side rooms across the NHS but I would definitely recommend asking.
How is he Feeding?
Well, actually. He likes his food but that is no suprise to anyone who has met his dad and brother - both gannets. At is 18days old H is regularly taking 90-120ml. He is taking on wind and we to spend a lot of time encouraging burping but he seems to be coping quite well. Sometimes we don't get it all and the wind 'goes south' and gets trapped in his lower stomach and which point we know about it!!!!
BCH Cleft Team visits.
Jo visited us in hospital on the day that H was born and again 2 days after we came home. She was very happy with how H was getting on. We have been assigned a Consultant and our first appointment with BCH is at the end of next month. At that point we will get our date for the lip operation.
So, that's where we are now. I think I've covered the basics.
Apologies for the rambling, nonsensical nature of the above. There is a reason sleep depravation is covered by the Geneva Convention.
Wednesday 3 August 2016
Meet & Greet
Sat here with cup of tea, flicking through my maternity notes, 'Show me, Show me' on in the background and it occurs to me that I haven't spoken on the blog about our 4d scan, and seeing our baby's face for the first time.
There are some very generous companies across the UK who offer free or discounted 3D/4D scans to parents in their area who have had a Cleft diagnosis. You can find a list of them on the CLAPA website here or ask your Cleft Nurse.
We visited Babyvision in Wolverhampton in mid June.
In the run up to the appointment, I was excited. I had never had one of these scans before and I was looking forward to seeing what our little boy looked like. This was coupled with a certain amount of fear. After all, we would see what see what our little boy looked like.
After the initial diagnosis and meeting with the cleft nurse, I didn't google. I didn't search out pictures, before and after photos or anything like that. I didn't want to build up an expectation as to the extent of the cleft. This turned out to have the opposite effect because I built a picture in my own mind that wasn't really based on any fact. I knew the cleft was 8mm unilateral but that didn't really mean a huge amount to me. So the prospect of seeing it was very daunting to both me and my husband.
We had talked about whether or not we were ready to face seeing the extent of the cleft, but it was an academic discussion really. We would have to face it at some point, and the earlier that could be done the longer we would have to get used to it in our own minds before seeing our son in the delivery room.
We had a bit of a drive from our home to Wolverhampton, and I was really apprehensive all the way. Part excited. Part terrified. In an odd way it reminded me of the feeling I had on the morning of my wedding, but far stronger.
We arrived in good time and were shown up to the waiting room. The building it was in had clearly once been a huge house, the kind that had 'staff', but now housed a doctors surgery as well as Babyvision.
The staff were lovely and put us completely at ease. The sonographer went through the notes and invited us through. It started off as looking like a 'normal' scan but she flicked a switch and like magic, there he was.
Our son.
The first thing we saw was his non-cleft side, and it was remarkable how much he looked like his older brother when he was a baby. I suppose that shouldn't come as a surprise but I think I spent so much time focusing on the cleft that I hadn't stopped to think about what the rest of his face would look like.
The next job was trying to get him to move so we could see the cleft side. I turned over one way, then another, then stood up and jiggled about a bit and eventually he let us see all of his face...
The sonographer laughed and said he was the grumpiest looking baby she had ever scanned. I said he looked like my dad. I'm not saying there's a connection but.......
To be fair the little one had every reason to be grumpy. The poor thing had been poked and prodded and scanned as much as me and I know I was fed up with it. At least I knew why it was happening. He was just in there trying to grow, sleep and suck his thumb and people kept squashing him.
The grumpiness didn't last for long though and we got a good look at him. The technology is amazing, we could pick out bits of me and bits of my husband. We were free to ask any questions and they were honestly answered. My main one was that on some of the pictures there seemed to be a disfigurement higher up the face to the right of the bridge of the nose (as in the above 'grumpy' photo). The lady explained that where the scan couldn't reach the machine fills in the gaps, and with a twist of the wrist the probe was moved to the area in question and it all looked normal.
As a final hurrah, and in an early show of defiance, the baby stuck his tongue out and gave us the finger. Charming. Clearly has his mothers attitude.
We were given some printed photos to take away and a disc full of images.
We headed home, not sure what to say to each other. I made it half way home before I needed to pull over to have a 'moment.' I'm not sure why I was crying, maybe it was a release of pent up anxiety, maybe it was finally facing reality. The moment didn't last long and we were soon home showing our parents their Grandson.
In the few days following the scan, we played the pictures on a slideshow on the TV in our house, just looking at them. And smiling. He is our son. We love him and, short of wearing a Liverpool FC shirt, we would love him through anything.
*********************************************************************************
I want to take this opportunity to thank Babyvision and all of the other companies who offer a free or discounted service to parents with a cleft diagnosis. It is an amazing thing to do and helps parents through such an uncertain time. Thank you.
There are some very generous companies across the UK who offer free or discounted 3D/4D scans to parents in their area who have had a Cleft diagnosis. You can find a list of them on the CLAPA website here or ask your Cleft Nurse.
We visited Babyvision in Wolverhampton in mid June.
In the run up to the appointment, I was excited. I had never had one of these scans before and I was looking forward to seeing what our little boy looked like. This was coupled with a certain amount of fear. After all, we would see what see what our little boy looked like.
After the initial diagnosis and meeting with the cleft nurse, I didn't google. I didn't search out pictures, before and after photos or anything like that. I didn't want to build up an expectation as to the extent of the cleft. This turned out to have the opposite effect because I built a picture in my own mind that wasn't really based on any fact. I knew the cleft was 8mm unilateral but that didn't really mean a huge amount to me. So the prospect of seeing it was very daunting to both me and my husband.
We had talked about whether or not we were ready to face seeing the extent of the cleft, but it was an academic discussion really. We would have to face it at some point, and the earlier that could be done the longer we would have to get used to it in our own minds before seeing our son in the delivery room.
We had a bit of a drive from our home to Wolverhampton, and I was really apprehensive all the way. Part excited. Part terrified. In an odd way it reminded me of the feeling I had on the morning of my wedding, but far stronger.
We arrived in good time and were shown up to the waiting room. The building it was in had clearly once been a huge house, the kind that had 'staff', but now housed a doctors surgery as well as Babyvision.
The staff were lovely and put us completely at ease. The sonographer went through the notes and invited us through. It started off as looking like a 'normal' scan but she flicked a switch and like magic, there he was.
Our son.
The first thing we saw was his non-cleft side, and it was remarkable how much he looked like his older brother when he was a baby. I suppose that shouldn't come as a surprise but I think I spent so much time focusing on the cleft that I hadn't stopped to think about what the rest of his face would look like.
The next job was trying to get him to move so we could see the cleft side. I turned over one way, then another, then stood up and jiggled about a bit and eventually he let us see all of his face...
The sonographer laughed and said he was the grumpiest looking baby she had ever scanned. I said he looked like my dad. I'm not saying there's a connection but.......
To be fair the little one had every reason to be grumpy. The poor thing had been poked and prodded and scanned as much as me and I know I was fed up with it. At least I knew why it was happening. He was just in there trying to grow, sleep and suck his thumb and people kept squashing him.
The grumpiness didn't last for long though and we got a good look at him. The technology is amazing, we could pick out bits of me and bits of my husband. We were free to ask any questions and they were honestly answered. My main one was that on some of the pictures there seemed to be a disfigurement higher up the face to the right of the bridge of the nose (as in the above 'grumpy' photo). The lady explained that where the scan couldn't reach the machine fills in the gaps, and with a twist of the wrist the probe was moved to the area in question and it all looked normal.
As a final hurrah, and in an early show of defiance, the baby stuck his tongue out and gave us the finger. Charming. Clearly has his mothers attitude.
We were given some printed photos to take away and a disc full of images.
We headed home, not sure what to say to each other. I made it half way home before I needed to pull over to have a 'moment.' I'm not sure why I was crying, maybe it was a release of pent up anxiety, maybe it was finally facing reality. The moment didn't last long and we were soon home showing our parents their Grandson.
In the few days following the scan, we played the pictures on a slideshow on the TV in our house, just looking at them. And smiling. He is our son. We love him and, short of wearing a Liverpool FC shirt, we would love him through anything.
*********************************************************************************
I want to take this opportunity to thank Babyvision and all of the other companies who offer a free or discounted service to parents with a cleft diagnosis. It is an amazing thing to do and helps parents through such an uncertain time. Thank you.
Wednesday 27 July 2016
Bad Day
The first few posts have all been like story. Memories of what happened, recorded as honestly as possible but with the obvious benefit of hindsight. From now, posts will be more immediate, more 'in the moment' and possibly more rash. I may regret what I write a little more, but I will always try and be honest as to how I feel.
So, here goes....
Today is not a good day.
I can't tell you why exactly. I woke up feeling a weight of sadness in my chest. Sadness for the situation, and knowing what is to come.
The baby is kicking away in my stomach, quite oblivious to what is ahead for him. The operations, the hospital visits, the prodding and the poking. And I feel sorry for him because it has to be done, and it's undoubtably for the best. But that doesn't mean I want it for him.
I also know for sure that it is far better that all of the procedures happen while he is a baby. I imagine trying to explain what is going to happen to my 3 year old; independent, aware of and interested in everything. Of course it's better it happens when the baby is small. But that does not mean I want it for him.
I'm worried about what will happen in the hours after he is here. How will he feed? Bottle? Syringe? Tube?
Will we be separated? I know that he may need to go to Special Care Baby Unit so they can help with feeding. Will he know that he's away from us? Will he wonder where we are?
My rational brain knows that the midwives, the cleft team and everyone else will make sure he is fed. That if he does need to go to SCBU he won't be away from us. We'll be there, next to him, fighting everything alongside him so he will never be alone. But that doesn't mean I want it for him.
Finally I feel guilty, because I'm now 38 weeks pregnant and desperate for him to be here. I'm desperate to see him and be able to do something for him. The feeling of impotence I've had for the last 18 weeks is becoming unbearable. I am a do-er, and not being able to do anything is crippling. But with that is the knowledge that by wishing him here earlier I am wishing the operations, the hospital visits, the prodding and the poking on him all the sooner. Any that's not fair. He seem's to be happy where he is, even if I am not.
After the initial diagnosis I became very, very good at compartmentalising everything. I was able to have frequent, detailed conversations with family and friends about the cleft. What it was, what it would look like, what operations he will need and how I was absolutely fine with it. I would do all of that without actually thinking about what was coming. I would go through the conversation by rote time and time again, without ever actually dealing with it. I thought that by acting like I was fine, I would be fine. I knew deep down that it doesn't work like that, and when I was on my own, with the world locked out, I would cry and allow myself to not be ok for a while.
Days like this have become, thankfully, much less frequent as the weeks have passed, and for the most part I can honestly say I've become ok with it. Or, if not ok with it, used to it. Able to live with it rather than around it. That said, I reserve the right to revert to a bad day like today.
If you're reading this as a parent dealing with a new diagnoses, please don't be alarmed. You will have times like this, but by talking to someone about it you can work through the sadness and back towards being ok again. Talk to your partner, your parents, a friend, anyone. If you are carrying the baby yourself remember that pregnancy hormones are a bloody nuisance and have a way of distorting the magnitude of what you are feeling. That doesn't mean that what you are feeling is wrong, or that you are overreacting, but it does mean that the immediate pain and panic will pass and rational you will be back soon.
In the mean time you have my permission to grab a cup of tea (in leiu of Gin) and a packet of biscuits and to put your feet up. Homes Under the Hammer starts soon. Take your time to relax and be ok again, and know that however alone you may feel that you are not. There is huge support out there for when you need it.
Much love.
I'm off in search of cookies.
So, here goes....
Today is not a good day.
I can't tell you why exactly. I woke up feeling a weight of sadness in my chest. Sadness for the situation, and knowing what is to come.
The baby is kicking away in my stomach, quite oblivious to what is ahead for him. The operations, the hospital visits, the prodding and the poking. And I feel sorry for him because it has to be done, and it's undoubtably for the best. But that doesn't mean I want it for him.
I also know for sure that it is far better that all of the procedures happen while he is a baby. I imagine trying to explain what is going to happen to my 3 year old; independent, aware of and interested in everything. Of course it's better it happens when the baby is small. But that does not mean I want it for him.
I'm worried about what will happen in the hours after he is here. How will he feed? Bottle? Syringe? Tube?
Will we be separated? I know that he may need to go to Special Care Baby Unit so they can help with feeding. Will he know that he's away from us? Will he wonder where we are?
My rational brain knows that the midwives, the cleft team and everyone else will make sure he is fed. That if he does need to go to SCBU he won't be away from us. We'll be there, next to him, fighting everything alongside him so he will never be alone. But that doesn't mean I want it for him.
Finally I feel guilty, because I'm now 38 weeks pregnant and desperate for him to be here. I'm desperate to see him and be able to do something for him. The feeling of impotence I've had for the last 18 weeks is becoming unbearable. I am a do-er, and not being able to do anything is crippling. But with that is the knowledge that by wishing him here earlier I am wishing the operations, the hospital visits, the prodding and the poking on him all the sooner. Any that's not fair. He seem's to be happy where he is, even if I am not.
After the initial diagnosis I became very, very good at compartmentalising everything. I was able to have frequent, detailed conversations with family and friends about the cleft. What it was, what it would look like, what operations he will need and how I was absolutely fine with it. I would do all of that without actually thinking about what was coming. I would go through the conversation by rote time and time again, without ever actually dealing with it. I thought that by acting like I was fine, I would be fine. I knew deep down that it doesn't work like that, and when I was on my own, with the world locked out, I would cry and allow myself to not be ok for a while.
Days like this have become, thankfully, much less frequent as the weeks have passed, and for the most part I can honestly say I've become ok with it. Or, if not ok with it, used to it. Able to live with it rather than around it. That said, I reserve the right to revert to a bad day like today.
If you're reading this as a parent dealing with a new diagnoses, please don't be alarmed. You will have times like this, but by talking to someone about it you can work through the sadness and back towards being ok again. Talk to your partner, your parents, a friend, anyone. If you are carrying the baby yourself remember that pregnancy hormones are a bloody nuisance and have a way of distorting the magnitude of what you are feeling. That doesn't mean that what you are feeling is wrong, or that you are overreacting, but it does mean that the immediate pain and panic will pass and rational you will be back soon.
In the mean time you have my permission to grab a cup of tea (in leiu of Gin) and a packet of biscuits and to put your feet up. Homes Under the Hammer starts soon. Take your time to relax and be ok again, and know that however alone you may feel that you are not. There is huge support out there for when you need it.
Much love.
I'm off in search of cookies.
Saturday 16 July 2016
Mantra
Within two hours of leaving Birmingham Women's Hospital I had received a call from the Cleft Team at Birmingham Children's Hospital (BCH) and an appointment was made for our local Cleft Nurse to visit us at home in two days time.
The first thing the Nurse, Jane*, said when she sat down was this, and I want this to be a mantra to all cleft families out there.
"This is not your fault. This happened probably before you found out you were pregnant. This is nothing to do with anything you have done. It wasn't because you forgot to take your vitamins, or a cheeky drink at Christmas. Nothing you have done has caused this. It has just happened, and we are here to help you."
I would urge anyone affected by a Cleft lip and/or palate to have that stored somewhere. Keep it on your phone. Frame it. Hell, tattoo it on your eyelids. Just remember it. There are times when you will still blame yourself. Of course you do. As a parent you are 50% of the child's DNA. Half of him is you and all of you is in him. As a mother, you are given the responsibility of carrying this cluster of cells and protecting them.... and frankly you feel like you have fucked it up. There are times when you have to blame something or someone, but deep in your mind and in your heart remember that you DID NOT CAUSE THIS.
Jane was brilliant. She explained who she was and her role, as well as all of the people at BCH who dealt with clefts. She talked us through what would happen once the baby was here, from labour and birth through to future operations. She answered all of our questions (including my stupid ones) clearly and kindly and showed us lots of photographs of children who had been treated by the team. She gave us the details of a wonderful company in Shrewsbury who offer free 4d scans to families with a cleft diagnosis (more on that in a future post) and was generally just lovely and reassuring. Finally she introduced us to CLAPA, and the mine of information and network of support that they offer.
We had a long talk about feeding; the options and the possible problems. We were told not to worry about feeding, that was her job and she would be there to support us. We were given two special bottles to take to the hospital with us, and we would be given more when she visited me in hospital after the baby was born.
When she left we all felt a lot more informed and reassured to know that the support was there. For the first time we had a glimmer of 'it will be ok' that has stayed with us for the most part, although wont pretend we have always felt it. What we did know was that it was the end of the beginning, and we just had to keep putting one foot in front of the other to get where we needed to be. Wherever the hell that was.
__________________________________________________________________________
*If you're reading this and your name isn't Jane, please accept my humble apologies. In my defence i hadn't slept properly in a week, managed to get tonsillitis since visiting BWH and have had severe baby brain in the intervening 16 weeks!
The first thing the Nurse, Jane*, said when she sat down was this, and I want this to be a mantra to all cleft families out there.
"This is not your fault. This happened probably before you found out you were pregnant. This is nothing to do with anything you have done. It wasn't because you forgot to take your vitamins, or a cheeky drink at Christmas. Nothing you have done has caused this. It has just happened, and we are here to help you."
I would urge anyone affected by a Cleft lip and/or palate to have that stored somewhere. Keep it on your phone. Frame it. Hell, tattoo it on your eyelids. Just remember it. There are times when you will still blame yourself. Of course you do. As a parent you are 50% of the child's DNA. Half of him is you and all of you is in him. As a mother, you are given the responsibility of carrying this cluster of cells and protecting them.... and frankly you feel like you have fucked it up. There are times when you have to blame something or someone, but deep in your mind and in your heart remember that you DID NOT CAUSE THIS.
Jane was brilliant. She explained who she was and her role, as well as all of the people at BCH who dealt with clefts. She talked us through what would happen once the baby was here, from labour and birth through to future operations. She answered all of our questions (including my stupid ones) clearly and kindly and showed us lots of photographs of children who had been treated by the team. She gave us the details of a wonderful company in Shrewsbury who offer free 4d scans to families with a cleft diagnosis (more on that in a future post) and was generally just lovely and reassuring. Finally she introduced us to CLAPA, and the mine of information and network of support that they offer.
We had a long talk about feeding; the options and the possible problems. We were told not to worry about feeding, that was her job and she would be there to support us. We were given two special bottles to take to the hospital with us, and we would be given more when she visited me in hospital after the baby was born.
When she left we all felt a lot more informed and reassured to know that the support was there. For the first time we had a glimmer of 'it will be ok' that has stayed with us for the most part, although wont pretend we have always felt it. What we did know was that it was the end of the beginning, and we just had to keep putting one foot in front of the other to get where we needed to be. Wherever the hell that was.
__________________________________________________________________________
*If you're reading this and your name isn't Jane, please accept my humble apologies. In my defence i hadn't slept properly in a week, managed to get tonsillitis since visiting BWH and have had severe baby brain in the intervening 16 weeks!
Monday 11 July 2016
Confirmation
Tuesday finally dawned after the longest weekend of my life. I dont know how much I slept that night, but I know it wasn't much. I couldn't so much as look at food without feeling sick, and when I thought too much about anything at all I would have to run to the sink to dry wretch and sob.
The appointment was at lunchtime so I spent the morning in a haze. My inlaws arrived so my mother in law could come with us, and my father in law could take my son out for the day with my dad. We all sat around trying to act as normal as possible, as much for our own sanity as anything else. I tried, but I wasn't coping at all well. It was cold outside, the wind was bitter, but i kept finding excuses to go and sit in the garden away from everyone else.
Finally, after what seemed like days, it was time to go.
My mum drove us all the hour or so to the hospital. Oddly, as we headed for the motorway, my nausea lifted. We were doing something. I wasn't just sat at home staring at a wall. We were doing a something, a positive action rather than passive thought. It was amazing what a difference that made. I remember even laughing on the way there. Aside from feeling groggy with a sore throat (which I put down as the result of near constant sobbing) it was the most normal I had felt in nearly a week.
All that changed in the waiting room. The longer I sat there staring at the TV, the worse I felt. Sick. Shaky. Light headed. The minutes dragged by, and every time one of the staff came into the waiting room I jumped about a foot in the air. Several times I nearly passed out. I was sat doing nothing but thinking and thinking was not a good thing.
We knew the Doctors were running behind, but we didn't really mind. If they were running behind it probably meant that somebody had had some devastating news to deal with, and although we didn't know what was in store for us, we took some comfort in knowing that we would be looked after and given time.
Eventually, it was our turn. We filed into the scanning room with the consultant and stared at the screen. The consultant was lovely and explained what she was looking at, but she didn't need to. I saw the cleft as plain as day. She did lots of measurements and looked in detail at every part of the baby, measuring sizes and spaces and God knows what else.
Just as she finished we asked if she could tell us what we were having. A week ago we didn't want to know, but now we were desperate. We wanted to build a personality for our child, and not have them defined by what lay ahead regardless of what it was. She had a look and there was no doubt.
A boy. Another little boy.
We were delighted to know. It didn't matter to us either way but we knew and it made all the difference.
After wiping the conductive gel off my stomach (how does that stuff get EVERYWHERE?) we were shown into another room and left for a few minutes while the Doctor colated everything. She came in with a midwife and went through what she had found.
The diagnoses of a cleft lip was confirmed, and a cleft palate was probable although always difficult to confirm.
It was a unilateral cleft on the left hand side, and unilateral clefts are less likely to be connected to chromosome abnormalities. This coupled with the fact that all other measurements were completely normal meant that she thought that there was a less than 0.5% chance of a chromosome abnormality. The risk to the baby of a miscarriage through amniocentesis is 1%. The decision was made for us. If we were to have the amniocentesis test and it caused a miscarriage, the likelihood is we would have miscarried a healthy baby.
I must stress again here that this was our decision. I would never ever judge anyone for making a different decision.
It was the best outcome we could have hoped for. We knew they were never going to say 100% that everything was going to be ok. We knew that they would never 100% rule out chromosomal issues, but if you had asked me that morning I would have bitten your hand off for 0.5%.
The Doctor and Midwife explained everything clearly, answered all of our questions and gave us all the time and space we needed. They fully explained that amniocentesis proceedure and, although we declined, said we could contact them if we changed our mind. They arranged for the cleft team from Birmingham Children's Hospital to make contact with us but otherwise all other antenatal care and delivery could take place at our local hospital.
We left with a numb relief and started phoning our immediate family to tell them the news.
We knew we had a long way to go, but knowing what we were facing gave us a starting point. We hadn't come to terms with it yet, not by a long way, but by knowing what we were dealing with meant we could work towards accepting it and moving forward. I was 21 + 2. What a difference a week makes.
The appointment was at lunchtime so I spent the morning in a haze. My inlaws arrived so my mother in law could come with us, and my father in law could take my son out for the day with my dad. We all sat around trying to act as normal as possible, as much for our own sanity as anything else. I tried, but I wasn't coping at all well. It was cold outside, the wind was bitter, but i kept finding excuses to go and sit in the garden away from everyone else.
Finally, after what seemed like days, it was time to go.
My mum drove us all the hour or so to the hospital. Oddly, as we headed for the motorway, my nausea lifted. We were doing something. I wasn't just sat at home staring at a wall. We were doing a something, a positive action rather than passive thought. It was amazing what a difference that made. I remember even laughing on the way there. Aside from feeling groggy with a sore throat (which I put down as the result of near constant sobbing) it was the most normal I had felt in nearly a week.
All that changed in the waiting room. The longer I sat there staring at the TV, the worse I felt. Sick. Shaky. Light headed. The minutes dragged by, and every time one of the staff came into the waiting room I jumped about a foot in the air. Several times I nearly passed out. I was sat doing nothing but thinking and thinking was not a good thing.
We knew the Doctors were running behind, but we didn't really mind. If they were running behind it probably meant that somebody had had some devastating news to deal with, and although we didn't know what was in store for us, we took some comfort in knowing that we would be looked after and given time.
Eventually, it was our turn. We filed into the scanning room with the consultant and stared at the screen. The consultant was lovely and explained what she was looking at, but she didn't need to. I saw the cleft as plain as day. She did lots of measurements and looked in detail at every part of the baby, measuring sizes and spaces and God knows what else.
Just as she finished we asked if she could tell us what we were having. A week ago we didn't want to know, but now we were desperate. We wanted to build a personality for our child, and not have them defined by what lay ahead regardless of what it was. She had a look and there was no doubt.
A boy. Another little boy.
We were delighted to know. It didn't matter to us either way but we knew and it made all the difference.
After wiping the conductive gel off my stomach (how does that stuff get EVERYWHERE?) we were shown into another room and left for a few minutes while the Doctor colated everything. She came in with a midwife and went through what she had found.
The diagnoses of a cleft lip was confirmed, and a cleft palate was probable although always difficult to confirm.
It was a unilateral cleft on the left hand side, and unilateral clefts are less likely to be connected to chromosome abnormalities. This coupled with the fact that all other measurements were completely normal meant that she thought that there was a less than 0.5% chance of a chromosome abnormality. The risk to the baby of a miscarriage through amniocentesis is 1%. The decision was made for us. If we were to have the amniocentesis test and it caused a miscarriage, the likelihood is we would have miscarried a healthy baby.
I must stress again here that this was our decision. I would never ever judge anyone for making a different decision.
It was the best outcome we could have hoped for. We knew they were never going to say 100% that everything was going to be ok. We knew that they would never 100% rule out chromosomal issues, but if you had asked me that morning I would have bitten your hand off for 0.5%.
The Doctor and Midwife explained everything clearly, answered all of our questions and gave us all the time and space we needed. They fully explained that amniocentesis proceedure and, although we declined, said we could contact them if we changed our mind. They arranged for the cleft team from Birmingham Children's Hospital to make contact with us but otherwise all other antenatal care and delivery could take place at our local hospital.
We left with a numb relief and started phoning our immediate family to tell them the news.
We knew we had a long way to go, but knowing what we were facing gave us a starting point. We hadn't come to terms with it yet, not by a long way, but by knowing what we were dealing with meant we could work towards accepting it and moving forward. I was 21 + 2. What a difference a week makes.
Sunday 26 June 2016
Limbo
Good Friday to Easter Monday are a bit of a blur to me. I seemed to exist in 3 states. Nausea/Vomiting, Sobbing and zombie numbness. I fluctuated between them in varying and interesting combinations, but they were all there.
The nausea/vomiting began in earnest on Good Friday morning. On Thursday night my husband and I, mistakenly thinking it may reassure us, read through all of the information which was sent to us by our referral midwife. It was the start of a thought we have had a lot over the last 3 months, which is 'We know you have to tell us all of the possibilities and risks, but we really REALLY wish you wouldn't.' I'm not a believer in sugar coating generally, but occasionally it has its uses.
The next morning I woke up feeling sick. Within an hour or two I was being sick, barely able to keep anything down.
I'm slightly phobic about vomiting, so have been lucky that neither pregnancies have resulted in morning sickness as such, more 6 weeks of constant nausea and the ability to tolerate a very narrow range of foods. I never actually vomited with either pregnancy until this point. Over the next few days I seem to remember that's all I did.
I was lucky enough to be on holiday for Easter but my poor husband had to work all weekend except Sunday and I still have no idea how he managed to do it without cracking. The waiting was unbearable. On Easter Day, normally a bright and happy day in our family, my husband and I took our son to a local National Trust house to walk the grounds. We didn't feel bright or happy. We didn't feel joyful at Easter Day. We felt numb. We walked in the bright sunshine, chasing our little boy up and over fallen trees. We tried to be happy and normal for him but we wanted to run away ourselves.
What the hell were we going to do?
Would we have to have an amnio?
What would it show?
Was it something I had done?
I am never great at remembering tablets at the best of times. Did I miss one too many Folic Acid or Multivitamin?
Was it the cold and flu medication I was taking before I found out I was pregnant?
Was it the quarter glass of champagne on Christmas Day?
Was this all my fault?
In my heart of hearts I think I knew it hadn't been anything I had done, but when you are in limbo like that for 5 days rationality goes out of the window.
In the end, over the days and days of existing, we made a decision on the amnio test. If the scan showed anything, other than the cleft, that pointed to a genetic abnormality we would have the amnio. We would rather know and prepare for the future than spend the next 4 months in limbo.
I want to stress that this was OUR decision. I am certainly not advocating it as the correct one! You must do what you feel is right for you, your family and (frankly) your mental health.
We also decided to find out the gender of the baby. This was something we hadn't planned on doing. We hadn't found out with our son and had no intention to with this baby. As the weekend dragged on though, I began to want to know. In fact I think I needed to know. I wanted the baby to be a person with an identity, not an unknown. Not a 'thing with a thing'. I talked it through with my husband and he agreed. It would give us something to focus on. Something positive in the midst of this utter nightmare.
By Easter Monday, news had got around to people we knew about what was going on. The text messages and emails we got, both direct to us and via our parents, were wonderful. Kind words and reassurances from friends who had had experiences with clefts professionally (as Doctors, Teachers or Speech and Language Therapists), personally, or not at all, was overwhelming.
Now, Im going to have to be careful here. I don't want to offend any of the lovely people who supported us that week. However the point of this blog is to (hopefully) help other parents know they are not alone in their feelings. Therefore I feel I need to be honest. If you are one of the people who have messaged us or another family offering support please don't be upset or offended by what I am about to say.
While the messages were a massive comfort, they almost all focused on the Cleft which at the time was the least of our worries. It was the genetic disorders. The unknown. That's what terrified us. I really don't mean that to sound ungrateful or disingenuous to anyone who offered support. We know it was heartfelt and really did appreciate it, but at the same time it increased our (well certainly my) feeling of isolation. A feeling that other people didn't quite 'get it'. This is not a criticism in any way, but it's an honest account of how I felt.
If you know someone who gets a cleft diagnosis please do contact them. Offer thoughts/prayers/cake. ANYTHING. Because it will be appreciated and leaned upon over the following weeks and months. And if you have had the diagnosis, don't feel guilty about what you feel. Everyone deals with things in different ways. No one is right. Just do what you've got to do to get to the next day.
And if you were one of my amazing friends and family who offered support, THANK YOU. I have looked back on your messages many times during the weeks and I will never be able to tell you how much they have helped.
Monday 20 June 2016
Start Spreading The News
The diagnosis was made on the Wednesday before the Easter
weekend. I spent the rest of that day in something of a daze. I know what I
did, but my memories of it are a bit foggy. One thing I didn't do was tell many
people
This was a conscious decision by me and my husband. We didn't want people to know, and to have to deal with the inevitable questions, until we had got our heads around it ourselves. Our immediate family knew, and I told my best friend, L, by text the same morning, but that's it. I'll be honest, I didn't want to talk about it. I didn't want to explain, to be asked questions I didn't know the answers to, or to deal with the sideways tilt of the head. I knew that everyone would mean well and be supportive, but I didn't want to have to deal with that support.
I spent the next 24 hour waiting for the referral phone call, jumping whenever my phone beeped. The phone did not leave my hand all day and all night. I remember sleeping with it on loud, in case they had nocturnal staff at the women's hospital. When sleep eventually came it was deep and exhausted. But I still woke up if an email came through, and snatched my phone up to look.
When the phone call did come, I was in the middle of a National Trust field. L had invited me out to walk with her husband and 2 girls. The two girls would keep my son entertained, and I could walk. I like walking. It sorts my head out. Topics for discussion was anything and everything, including the cleft and what we knew which was essentially nothing. I'm a big believer in not googling anything medical, and L agreed having had her own share of medical issues over the years. The phone call came and the appointment was scheduled for the following Tuesday due to the long weekend.
5 whole days.
What the hell was I going to do for 5 days.
That said, after a morning with L and her family, I felt close to normal. I went home and did things. Couldn't tell you what but i do remember feeling like I had accomplished something. I felt like I was okay with this, that I could deal with the world and lie my way till Tuesday until I had more information and could start telling everyone.
I was wrong.
That evening, Maunday Thursday, marks the start of Holy Weekend. I sing in a church choir, so was due to sing with my friends in a quiet service that evening. I thought I would be fine, and that I could do it. That I could talk and laugh with friends and say "oh fine," as they asked how I was and how the baby was doing, I thought that if i kept telling myself I was fine, I would be.
I lasted two minutes.
Walking into that room my head filled with white noise, and my stomach dropped. I had to get out. I had to leave before anyone saw me. I hid at the back of Church wondering what the hell I was going to do and then I left. I tried to keep calm as I drove home. The white noise still filled my head and I felt sick. I was in no fit state to drive really, but I needed to get as far away from the white noise as i could.
Once home I collapsed onto my bed and sobbed, and sobbed, and sobbed. It must have been nearly two hours. My husband and I just lay there, me sobbing, him just being phenomenal and telling me it would all be alright. My mum came home and hugged me and we all just sat there, me a wreck, everyone else incredibly strong.
We talked about our fears, and my fear specifically of having to tell people. To have to go over everything repeatedly to everyone. To have to explain, to be asked questions I didn't know the answers to, and to deal with the sideways tilt of the head.
We came up with a plan.
We emailed and telephoned a handful of family and friends and asked them to pass on the news to other people. I was worried at the time that this was a cop out, and that it was unfair to pass our bad news to others to pass on. In retrospect it was the best thing that we could have done, neither husband or I were in the right frame of mind to repeatedly go over what we knew and didn't know, and our friends and family were wonderful to do that for us.
Over the next few days, the news filtered out and the support we got was unbelievable.
Meanwhile, I was not sleeping and vomiting frequently. My nerves had gone.
This was a conscious decision by me and my husband. We didn't want people to know, and to have to deal with the inevitable questions, until we had got our heads around it ourselves. Our immediate family knew, and I told my best friend, L, by text the same morning, but that's it. I'll be honest, I didn't want to talk about it. I didn't want to explain, to be asked questions I didn't know the answers to, or to deal with the sideways tilt of the head. I knew that everyone would mean well and be supportive, but I didn't want to have to deal with that support.
I spent the next 24 hour waiting for the referral phone call, jumping whenever my phone beeped. The phone did not leave my hand all day and all night. I remember sleeping with it on loud, in case they had nocturnal staff at the women's hospital. When sleep eventually came it was deep and exhausted. But I still woke up if an email came through, and snatched my phone up to look.
When the phone call did come, I was in the middle of a National Trust field. L had invited me out to walk with her husband and 2 girls. The two girls would keep my son entertained, and I could walk. I like walking. It sorts my head out. Topics for discussion was anything and everything, including the cleft and what we knew which was essentially nothing. I'm a big believer in not googling anything medical, and L agreed having had her own share of medical issues over the years. The phone call came and the appointment was scheduled for the following Tuesday due to the long weekend.
5 whole days.
What the hell was I going to do for 5 days.
That said, after a morning with L and her family, I felt close to normal. I went home and did things. Couldn't tell you what but i do remember feeling like I had accomplished something. I felt like I was okay with this, that I could deal with the world and lie my way till Tuesday until I had more information and could start telling everyone.
I was wrong.
That evening, Maunday Thursday, marks the start of Holy Weekend. I sing in a church choir, so was due to sing with my friends in a quiet service that evening. I thought I would be fine, and that I could do it. That I could talk and laugh with friends and say "oh fine," as they asked how I was and how the baby was doing, I thought that if i kept telling myself I was fine, I would be.
I lasted two minutes.
Walking into that room my head filled with white noise, and my stomach dropped. I had to get out. I had to leave before anyone saw me. I hid at the back of Church wondering what the hell I was going to do and then I left. I tried to keep calm as I drove home. The white noise still filled my head and I felt sick. I was in no fit state to drive really, but I needed to get as far away from the white noise as i could.
Once home I collapsed onto my bed and sobbed, and sobbed, and sobbed. It must have been nearly two hours. My husband and I just lay there, me sobbing, him just being phenomenal and telling me it would all be alright. My mum came home and hugged me and we all just sat there, me a wreck, everyone else incredibly strong.
We talked about our fears, and my fear specifically of having to tell people. To have to go over everything repeatedly to everyone. To have to explain, to be asked questions I didn't know the answers to, and to deal with the sideways tilt of the head.
We came up with a plan.
We emailed and telephoned a handful of family and friends and asked them to pass on the news to other people. I was worried at the time that this was a cop out, and that it was unfair to pass our bad news to others to pass on. In retrospect it was the best thing that we could have done, neither husband or I were in the right frame of mind to repeatedly go over what we knew and didn't know, and our friends and family were wonderful to do that for us.
Over the next few days, the news filtered out and the support we got was unbelievable.
Meanwhile, I was not sleeping and vomiting frequently. My nerves had gone.
Monday 13 June 2016
The Beginning
Easter 2016
"I think I can see something," the sonographer said, looking closely at the screen.
"Okay" I replied brightly as my husband squeezed my hand. I moved my eyes towards the screen, and I saw her looking at the baby's face. I remember thinking that it looked like Pob, but with a dark shadow across one side.....
"I'm afraid I can see a cleft lip on your baby".
"Oh"
I didn't say anything at first. Then tears started coming. Slowly at first, and then faster. I remember not being sure why I was crying. I suppose we had gone in there with the arrogance of parents with a 'normal' child. We'd even taken my Mother in Law as a surprise. I hadn't expected anything like this.
The scan finished, and the sonographer explained that we would need to be seen by Birmingham Women's Hospital, and that a referral midwife would be in contact soon to explain everything.
I remember nodding a lot.
We walked to the car. I was still a bit teary, but in control. After all, a lip could be fixed. I kept telling myself that a lip could be fixed.
I remember pulling up outside my dad's office.
I remember my husband ringing my dad asking him to come down.
I remember seeing my dad, and breaking down.
I remember how worried he looked as I couldn't get my words out, how gasped for breath between sobs, and how eventually my sainted mother in law explained what we had been told.
I remember waiting for my mum to arrive with my son. And waiting. And waiting. It was probably only 2 minutes. It felt longer.
I remember explaining to her in between sobs what had been said.
I remember my son in the back of her car crying because I was upset and he didn't understand why.
I remember sitting at home watching a cup of tea go cold.
I remember laughing at conversations I wasn't really listening to.
I remember the referral midwife calling, explaining the referral process and the information about amniocentesis testing she would send through.
I remember saying that we'd had the Down Syndrome test and that we hadn't needed amniocentesis. After all it was just a lip. A lip can be fixed.
I remember her saying, delicately, that a diagnosed cleft can be a symptom of a genetic disorder such as Edwards or Patau's Syndrome.
I'll be honest, I don't remember a great deal after that.
"I think I can see something," the sonographer said, looking closely at the screen.
"Okay" I replied brightly as my husband squeezed my hand. I moved my eyes towards the screen, and I saw her looking at the baby's face. I remember thinking that it looked like Pob, but with a dark shadow across one side.....
"I'm afraid I can see a cleft lip on your baby".
"Oh"
I didn't say anything at first. Then tears started coming. Slowly at first, and then faster. I remember not being sure why I was crying. I suppose we had gone in there with the arrogance of parents with a 'normal' child. We'd even taken my Mother in Law as a surprise. I hadn't expected anything like this.
The scan finished, and the sonographer explained that we would need to be seen by Birmingham Women's Hospital, and that a referral midwife would be in contact soon to explain everything.
I remember nodding a lot.
We walked to the car. I was still a bit teary, but in control. After all, a lip could be fixed. I kept telling myself that a lip could be fixed.
I remember pulling up outside my dad's office.
I remember my husband ringing my dad asking him to come down.
I remember seeing my dad, and breaking down.
I remember how worried he looked as I couldn't get my words out, how gasped for breath between sobs, and how eventually my sainted mother in law explained what we had been told.
I remember waiting for my mum to arrive with my son. And waiting. And waiting. It was probably only 2 minutes. It felt longer.
I remember explaining to her in between sobs what had been said.
I remember my son in the back of her car crying because I was upset and he didn't understand why.
I remember sitting at home watching a cup of tea go cold.
I remember laughing at conversations I wasn't really listening to.
I remember the referral midwife calling, explaining the referral process and the information about amniocentesis testing she would send through.
I remember saying that we'd had the Down Syndrome test and that we hadn't needed amniocentesis. After all it was just a lip. A lip can be fixed.
I remember her saying, delicately, that a diagnosed cleft can be a symptom of a genetic disorder such as Edwards or Patau's Syndrome.
I'll be honest, I don't remember a great deal after that.
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