Please vote for my daughter! She is a beautiful five month old baby with a congenital heart defect. She is an incredible little person. I am so proud of her! Please vote and share.
Thank you <3
www.babyvote.co.uk/girls/kira-soffe
Sunday, 4 August 2013
Monday, 17 June 2013
Ehhh..
It's been a while since I blogged. I've been so busy with Kira, and any free time I have I like to spend sitting on facebook doing well... nothing. I honestly can't think what I do on there but I somehow manage to spend hours on it. Mmmmm
So quick update. I do aim to write in this at least once a day, but we'll see. At the moment, I'm pretty sure I am my only reader, haha. But in time, I'd like this to be a place where family and friends can be kept up to date with how Kira is doing. I'm pretty awful at staying in touch with people and letting them know where I'm at. I used to love being surrounded by people all the time - I felt I needed it. Now I find myself isolating and not really wanted to talk much to people, never mind be around them. I've kind of lost my trust in people lately and cut a lot of people out of my life. Which I still feel needed to be done. But I'm now having difficulty letting anyone in. I really need to work on that. But for now, this is a place where I can share Kira's progress with the people I love.
Kira has been back in hospital - another waste of a week. Her medication got stopped for her heart and not a whole lot else was done. She was supposed to be kept in for "observation" - yet no one was doin much observing. Infact I'm pretty sure she caught a bug in there since she's still having diahhrea a week later.
I can't get anyone to listen. They sent her home with a NG tube, which she hates. And they're talking about putting a more permanent one in her stomach, yet they're not looking into what's causing the problem.
I'm getting more and more frustrated and I feel completely helpless. I can't force them to do anything they don't want to do.
On the bright side though, the doctor she was first under who diagnosed her with her CHD, is now looking after her again so hopefully he will find out what's wrong.
So quick update. I do aim to write in this at least once a day, but we'll see. At the moment, I'm pretty sure I am my only reader, haha. But in time, I'd like this to be a place where family and friends can be kept up to date with how Kira is doing. I'm pretty awful at staying in touch with people and letting them know where I'm at. I used to love being surrounded by people all the time - I felt I needed it. Now I find myself isolating and not really wanted to talk much to people, never mind be around them. I've kind of lost my trust in people lately and cut a lot of people out of my life. Which I still feel needed to be done. But I'm now having difficulty letting anyone in. I really need to work on that. But for now, this is a place where I can share Kira's progress with the people I love.
Kira has been back in hospital - another waste of a week. Her medication got stopped for her heart and not a whole lot else was done. She was supposed to be kept in for "observation" - yet no one was doin much observing. Infact I'm pretty sure she caught a bug in there since she's still having diahhrea a week later.
I can't get anyone to listen. They sent her home with a NG tube, which she hates. And they're talking about putting a more permanent one in her stomach, yet they're not looking into what's causing the problem.
I'm getting more and more frustrated and I feel completely helpless. I can't force them to do anything they don't want to do.
On the bright side though, the doctor she was first under who diagnosed her with her CHD, is now looking after her again so hopefully he will find out what's wrong.
Tuesday, 11 June 2013
I'm pissed. And not the good kind.
Not sure where to start. Spent the last week in hospital with Kira. Only went in for a check up. We were discharged last night even more confused as to what her condition is. They aren't really planning to investigate it further; they're just fobbing us off as usual.
I'm so angry. I literally sat in the bathroom and just cried. They told me they were stopping her medication for her heart and were prepared to leave her for a few years before they'll do surgery. I really don't understand it. They sent her home with a NG tube for her feeds, her breathing is a lot worse, she's coughing and gagging all the time now and she's had five days of the most horrendous nappies - so bad she has nappy rash and blisters all over her. Why would you leave her if she's clearly just getting worse????
It's so unfair. I can't believe they would just leave a baby like this. I don't understand. I feel so fucking helpless. I keep complaining and asking to speak to people. I'm repeating myself over and over, asking the same questions hoping to get different answers. But it's not changing anything. Me and Avi are considering just taking her down to London and hoping that they will see her there. We've heard good things about the cardiologists there. Failing that, I guess we'll have to go private. That's the only way we can demand tests and treatment in this country.
I don't even know what else to say. I'm sick to death of this now. I can't just treat her like a normal baby.She can't even sit up, hold her head up properly or even hold things in her hands and she's four months old. I can't sit and play with her cos me and Avi have had it drilled into us that we must feed her and let her sleep. Anything else is burning precious calories. ARGH. There's been so much pressure put on me these last few months to pile the weight on her to the point where it's become an obsession. I'd sit there for hours and hours.. literally, grabbing every chance I got to get more milk down her.I'd change her nappy, wash her face, tickle her.. anything to stimulate her in some way and get her to drink that little bit more. And every single god damn person , and by person I mean medical supposed professional, has said that I had had HAD to get her to gain weight so that she could have her surgery.
Now, this doctor who has known her for like.. a couple of days, and doesn't really know anything about her, has taken her off her medication and saying he isn't prepared to do surgery until she's in preschool. He's considered the top doctor, too so I can't really see anyone else goin against what he says.
Can I sue? What the absolute fuck am I supposed to do? At this point, I can either take my chances with another hospital, or stand on the corner of lime st in the hopes of finding me a chubby chaser, and pay for it privately.
Seriously. What the actual fuck!
I'm so angry. I literally sat in the bathroom and just cried. They told me they were stopping her medication for her heart and were prepared to leave her for a few years before they'll do surgery. I really don't understand it. They sent her home with a NG tube for her feeds, her breathing is a lot worse, she's coughing and gagging all the time now and she's had five days of the most horrendous nappies - so bad she has nappy rash and blisters all over her. Why would you leave her if she's clearly just getting worse????
It's so unfair. I can't believe they would just leave a baby like this. I don't understand. I feel so fucking helpless. I keep complaining and asking to speak to people. I'm repeating myself over and over, asking the same questions hoping to get different answers. But it's not changing anything. Me and Avi are considering just taking her down to London and hoping that they will see her there. We've heard good things about the cardiologists there. Failing that, I guess we'll have to go private. That's the only way we can demand tests and treatment in this country.
I don't even know what else to say. I'm sick to death of this now. I can't just treat her like a normal baby.She can't even sit up, hold her head up properly or even hold things in her hands and she's four months old. I can't sit and play with her cos me and Avi have had it drilled into us that we must feed her and let her sleep. Anything else is burning precious calories. ARGH. There's been so much pressure put on me these last few months to pile the weight on her to the point where it's become an obsession. I'd sit there for hours and hours.. literally, grabbing every chance I got to get more milk down her.I'd change her nappy, wash her face, tickle her.. anything to stimulate her in some way and get her to drink that little bit more. And every single god damn person , and by person I mean medical supposed professional, has said that I had had HAD to get her to gain weight so that she could have her surgery.
Now, this doctor who has known her for like.. a couple of days, and doesn't really know anything about her, has taken her off her medication and saying he isn't prepared to do surgery until she's in preschool. He's considered the top doctor, too so I can't really see anyone else goin against what he says.
Can I sue? What the absolute fuck am I supposed to do? At this point, I can either take my chances with another hospital, or stand on the corner of lime st in the hopes of finding me a chubby chaser, and pay for it privately.
Seriously. What the actual fuck!
Monday, 3 June 2013
Sleeping beauty
Finally settled Kira in bed. It's 9pm and I'm hoping to squeeze in one last feed before bed. She's been sleeping through the night for the last few weeks so it's hard to get that extra few mls down her. But I know sleep is just as important for her to grow.
It's so difficult trying to find the right balance, as well as encourage her to play and develop normally in other ways. I have to say though that I am really happy with how far she's come. Despite all her set backs and her problems, she's not far behind other babies of her ages. She's small.. incredibly small. But she is doing things that a 3 and a half month old baby should. Ie. holding her head up (almost fully on her own!), smiling, cooing and she's been copying me lately. It really gives me hope that she will get through this and she will be no different to any other baby.
It's really difficult trying to encourage such development when she has other things getting in the way. Like today, Avi and I took her to a baby massage group and it was hard having to sit there practising on a doll, while watching the other mum's with their, can I just say, HUGE babies. I mean, I guess that's the norm for babies her age but they seriously look overfed in comparison to Kira. It's really hard sometimes being stopped in the street and asked how many days old she is. And random strangers seem to think it's perfectly okay to touch her face and ask to hold her. I'm really going to have to start standing my ground on that one. I mean, I'm so afraid of offending people and upsetting people. But this is my daughter and they will just have to get over being told not to touch her. And I will just have to get over my one of many irrational fears. I guess you would call this one "fear of not being liked by every single random person in the entire world". Seriously. I hate people thinking badly of me but it's my downfall in so many ways. Days when I'm really "feeling the fear", I may as well have the words "doormat" tattooed across my forehead. But that's a whole other story.
Anyway, the reason we couldn't involve Kira today was because we aren't sure if it's safe with her heart condition. And also, because she has hip dysplacia and has to wear a brace that's meant for a four month old - a normal sized four month old. It's pretty useless like - she pulls her foot out or kicks it off. But just incase there's even the tiniest of chances it will her prevent her from needing surgery, we're giving it a try. So yeah, that pretty much rules out bending her legs about for a massage.
As I said, I'm finding it really difficult to handle right now, as well as her reflux, the horrendous poo's, and the three hours it can take to feed her - EACH and every feed. But I keep telling myself it's not forever and the love that I feel for her, that I didn't know I could feel for anything, makes it all worth while.
It's so difficult trying to find the right balance, as well as encourage her to play and develop normally in other ways. I have to say though that I am really happy with how far she's come. Despite all her set backs and her problems, she's not far behind other babies of her ages. She's small.. incredibly small. But she is doing things that a 3 and a half month old baby should. Ie. holding her head up (almost fully on her own!), smiling, cooing and she's been copying me lately. It really gives me hope that she will get through this and she will be no different to any other baby.
It's really difficult trying to encourage such development when she has other things getting in the way. Like today, Avi and I took her to a baby massage group and it was hard having to sit there practising on a doll, while watching the other mum's with their, can I just say, HUGE babies. I mean, I guess that's the norm for babies her age but they seriously look overfed in comparison to Kira. It's really hard sometimes being stopped in the street and asked how many days old she is. And random strangers seem to think it's perfectly okay to touch her face and ask to hold her. I'm really going to have to start standing my ground on that one. I mean, I'm so afraid of offending people and upsetting people. But this is my daughter and they will just have to get over being told not to touch her. And I will just have to get over my one of many irrational fears. I guess you would call this one "fear of not being liked by every single random person in the entire world". Seriously. I hate people thinking badly of me but it's my downfall in so many ways. Days when I'm really "feeling the fear", I may as well have the words "doormat" tattooed across my forehead. But that's a whole other story.
Anyway, the reason we couldn't involve Kira today was because we aren't sure if it's safe with her heart condition. And also, because she has hip dysplacia and has to wear a brace that's meant for a four month old - a normal sized four month old. It's pretty useless like - she pulls her foot out or kicks it off. But just incase there's even the tiniest of chances it will her prevent her from needing surgery, we're giving it a try. So yeah, that pretty much rules out bending her legs about for a massage.
As I said, I'm finding it really difficult to handle right now, as well as her reflux, the horrendous poo's, and the three hours it can take to feed her - EACH and every feed. But I keep telling myself it's not forever and the love that I feel for her, that I didn't know I could feel for anything, makes it all worth while.
Beyond Frustrated
Kira was weighed today and it turns out she's losing weight again. I'm so frustrated because the doctors in the hospital won't do anything. They literally won't. They just throw medication at the situation and it's just not good enough. And furthermore, it's not f-ing working. It's as though they just don't care. She's been in and out of hospital for the past five weeks or so now and the last time they discharged her, despite the fact she'd lost weight and was refusing to eat. They couldn't have made me and Avi (her father) feel more unwelcome if they'd tried, and they treat Kira like she's just a fussy eater - despite the fact that they KNOW she has this serious condition. I feel so helpless, but knowing just how helpless she is and how much she needs me right now keeps me going. It almost gives me the strength to keep fighting them, as I had to do before anyone would do tests to find out why she wasn't growing.
Why does it all have to be such a fight?
I'm currently sat in bed as I write this, watching Avi struggling to syringe-feed her the rest of her bottle. And it's pretty safe to say there's more on the bib than in her stomach right now.
I don't know what to do. I keep googling her condition, hoping I'll find something new. Something that will give me a better insight into what on earth is going on and how I can make it better. I'm so scared her heart is just going to stop beating. I just want her to be okay.
Why does it all have to be such a fight?
I'm currently sat in bed as I write this, watching Avi struggling to syringe-feed her the rest of her bottle. And it's pretty safe to say there's more on the bib than in her stomach right now.
I don't know what to do. I keep googling her condition, hoping I'll find something new. Something that will give me a better insight into what on earth is going on and how I can make it better. I'm so scared her heart is just going to stop beating. I just want her to be okay.
Sunday, 2 June 2013
A little history
I'm a little late starting this. Kira is 15 weeks old on wednesday and currently weighs 7lb 15oz. She was born 5lb 4oz. The nurses are coming to the house today to weigh her. Praying she's 8lb now. The last few months have been so difficult; a three month obsession with getting her to take more milk and, in the last month, trying to keep it down.
Kira was diagonised at 10 weeks old with a large 1.5cm ASD (Atrial Septal Defect - in other words, a hole in her heart). As a result, she has an enlarged liver, fluid on her lungs making it difficult to breathe, heart failure and the right side of her heart is enlarged. I could be wrong here but researching more on the subject has suggested that these other symptoms don't tend to happen until the child is well until adulthood. So why has it happened now?
Following diagnosis, she was put on two diuretics to take the pressure off of heart and, subsequently, her other organs. This actually seems to be working. Kira used to be tired constantly; she'd sleep, wake up for a feed, take a small amount then fall asleep again. It was such a battle to keep her awake long enough to take even an ounce of milk. I tried everything from changing her nappy, tickling her to washing her face. For her size, she only needed (according to the hospital she was born at) around 45mls to gain weight. This wasn't working and she was gaining weight so slowly, despite sleeping all the time. The nurses from the neonatal unit who were coming out to weigh her at home accused me of keeping her up, playing with her and said that was why she wasn't putting on weight. She was never awake long enough to play with her and well, she was never really interested. She just seemed so tired all the time and to be honest, I wanted her to sleep. The nurses fill you with fear that any movement at all will burn calories and she'll lose weight. But as the weeks went on, it was becoming more and more obvious that there was something very wrong. Well, to me, at least.
I took her to several doctors at my gp surgery, to the children's hospital, to the walk-in centre. Every nurse that came out to the house, and my health visitor, would be bombarded with questions as soon as they walked through the door. They would witness me trying to feed her and how much of a fight it was. Her breathing was becoming worse and I could see she was sucking in under her ribs with every breath - which is a sign that it's taking extra effort for her to breathe. She was taken by ambulance to a&e several times for various things and everytime I'd point out her breathing and the fact she wasn't really growing. and no one seemed interested. she wasn't even on the bottom line of the centile growth chart, and she'd gained around just over a pound in two months.Not a single person thought there was anything wrong with this. She spent a month in the NICU when she was first born, (something I'll go into another time as it'd take about three days to write about) and she didn't gain a single ounce. She left the same weight as she was born. I couldn't get anyone to listen to me. People treated me like I was just being an overly worried mother and I was starting to think I was going crazy.
(To be continued)
Kira was diagonised at 10 weeks old with a large 1.5cm ASD (Atrial Septal Defect - in other words, a hole in her heart). As a result, she has an enlarged liver, fluid on her lungs making it difficult to breathe, heart failure and the right side of her heart is enlarged. I could be wrong here but researching more on the subject has suggested that these other symptoms don't tend to happen until the child is well until adulthood. So why has it happened now?
Following diagnosis, she was put on two diuretics to take the pressure off of heart and, subsequently, her other organs. This actually seems to be working. Kira used to be tired constantly; she'd sleep, wake up for a feed, take a small amount then fall asleep again. It was such a battle to keep her awake long enough to take even an ounce of milk. I tried everything from changing her nappy, tickling her to washing her face. For her size, she only needed (according to the hospital she was born at) around 45mls to gain weight. This wasn't working and she was gaining weight so slowly, despite sleeping all the time. The nurses from the neonatal unit who were coming out to weigh her at home accused me of keeping her up, playing with her and said that was why she wasn't putting on weight. She was never awake long enough to play with her and well, she was never really interested. She just seemed so tired all the time and to be honest, I wanted her to sleep. The nurses fill you with fear that any movement at all will burn calories and she'll lose weight. But as the weeks went on, it was becoming more and more obvious that there was something very wrong. Well, to me, at least.
I took her to several doctors at my gp surgery, to the children's hospital, to the walk-in centre. Every nurse that came out to the house, and my health visitor, would be bombarded with questions as soon as they walked through the door. They would witness me trying to feed her and how much of a fight it was. Her breathing was becoming worse and I could see she was sucking in under her ribs with every breath - which is a sign that it's taking extra effort for her to breathe. She was taken by ambulance to a&e several times for various things and everytime I'd point out her breathing and the fact she wasn't really growing. and no one seemed interested. she wasn't even on the bottom line of the centile growth chart, and she'd gained around just over a pound in two months.Not a single person thought there was anything wrong with this. She spent a month in the NICU when she was first born, (something I'll go into another time as it'd take about three days to write about) and she didn't gain a single ounce. She left the same weight as she was born. I couldn't get anyone to listen to me. People treated me like I was just being an overly worried mother and I was starting to think I was going crazy.
(To be continued)
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