I had my counselling this morning. And it made me realise something -at no point have we actually celebrated Nates birth. As I've described previously the constant stream of bad/negative/bleak news given by professionals lead to a horrific first few weeks. My counsellor asked me to write down the two words which would best describe how I felt at that time. I chose grief and despair.
Grief- I felt I was grieving for the death of my child. According to everyone we spoke to he didn't have a future. So I experienced a taste of what it must feel like to lose a child, the difference being that event hadn't happened... Yet.
Despair- I couldn't comprehend how we could function as a family with this sentence hanging over us.
Because of these feelings I felt I couldn't be "congratulated" on the birth of my child. I wouldn't / couldn't put up cards, balloons or banners. there didn't seem to be anything to be happy about. As the weeks went on and we got him home we were so busy/stressed we never had time to appreciate our little man. I feel really guilty about that. So as we are in the run up to his first birthday, as I've said before, I feel sad. But now I can add an addition to my list of why I feel sad..
How can I celebrate Nates first birthday when I didn't celebrate his birth?
something I need to think on.
We must remember as well that Nates future is still uncertain. We don't know what scary symptoms or life threatening occurrences could be around the corner. we need to appreciate and celebrate him while we can.
The last few days have been quite positive. He's put on weight, been grasping and exploring while on his side and tummy, discovering his hair and playing with it, and trying to get his arms in a position to be able to push up. :)
however today we start him on preventative antibiotics while we await his kidney tests. Fingers crossed they come back normal.
the kids
Friday, 27 May 2011
Tuesday, 24 May 2011
My new working week...
I will be honest. Things didn't get off to the best of starts.
Saturday night, half one, and Nates heart rate went through the roof. This means either he is having carbon dioxide problems or he has a temperature. We shot awake and found him pale and shaking. His temp was 40.9. Neither of my little darlings has ever had a temp that high before. We have open access to our local hospitals children's ward so we took him off his nippy ventilator and took him up. He had various tests and has a urine infection. Fortunately the calpol, ibuprofen and antibiotics got to work quickly and we were home the next day!
It was always going to be hard leaving Nate and thea. But this additional stay in hospital just made things worse! The guilt I feel at leaving Nate in the care of my mam and mil is huge. But we have the mortgage from hell and we need the money. We have our house up for sale at the minute, so hopefully we sell soon and are rid of the "noose around our neck" as my husband refers to it. Our bank doesn't want to give us a mortgage as I now earn too little. We will try a mortgage broker but I'm not hopeful. Looks like we will be renting. But a bigger house will be a godsend as we are getting overtaken by Nates equipment in our little 2 bed terrace. I love my house but we have outgrown it. And Nate is squished into our room at the minute.
So I made it to work yesterday. It was lovely to see people again, but I haven't been there for a year and didn't recognise half the staff. My mam sent me loads of texts to say things were fine at home, which really put my mind at rest.
I have cajoled, praised, encouraged, and shouted at teenagers over the last two days. They have had a multitude of supply teachers while I've been away and my attempts to actually get them to work were met either with attitude or apathy. So not the best of starts. Faced with that I just kept thinking I should be elsewhere. So my two days of work are over for the week. I am exhausted. Being at work doesn't stop you from constantly worrying about your special needs child. Having a day at work doesnt mean you suddenly get a nights sleep where you aren't up 3 or more times when monitors alarm. There were asked tricky questions by staff and pupils. I have resorted to just saying Nate is "ok" when people enquire. It's simply too long a story, and I'm never sure if they are being polite, want gossip, or have a genuine interest. I've no idea how I'm going to keep this up. I really don't. It will get better, won't it?
Saturday night, half one, and Nates heart rate went through the roof. This means either he is having carbon dioxide problems or he has a temperature. We shot awake and found him pale and shaking. His temp was 40.9. Neither of my little darlings has ever had a temp that high before. We have open access to our local hospitals children's ward so we took him off his nippy ventilator and took him up. He had various tests and has a urine infection. Fortunately the calpol, ibuprofen and antibiotics got to work quickly and we were home the next day!
It was always going to be hard leaving Nate and thea. But this additional stay in hospital just made things worse! The guilt I feel at leaving Nate in the care of my mam and mil is huge. But we have the mortgage from hell and we need the money. We have our house up for sale at the minute, so hopefully we sell soon and are rid of the "noose around our neck" as my husband refers to it. Our bank doesn't want to give us a mortgage as I now earn too little. We will try a mortgage broker but I'm not hopeful. Looks like we will be renting. But a bigger house will be a godsend as we are getting overtaken by Nates equipment in our little 2 bed terrace. I love my house but we have outgrown it. And Nate is squished into our room at the minute.
So I made it to work yesterday. It was lovely to see people again, but I haven't been there for a year and didn't recognise half the staff. My mam sent me loads of texts to say things were fine at home, which really put my mind at rest.
I have cajoled, praised, encouraged, and shouted at teenagers over the last two days. They have had a multitude of supply teachers while I've been away and my attempts to actually get them to work were met either with attitude or apathy. So not the best of starts. Faced with that I just kept thinking I should be elsewhere. So my two days of work are over for the week. I am exhausted. Being at work doesn't stop you from constantly worrying about your special needs child. Having a day at work doesnt mean you suddenly get a nights sleep where you aren't up 3 or more times when monitors alarm. There were asked tricky questions by staff and pupils. I have resorted to just saying Nate is "ok" when people enquire. It's simply too long a story, and I'm never sure if they are being polite, want gossip, or have a genuine interest. I've no idea how I'm going to keep this up. I really don't. It will get better, won't it?
Friday, 20 May 2011
So counselling..
Well, I had my first session today. I self referred and it has taken 4 months to actually begin. I felt I needed to talk things through. To find a coping strategy as, to be honest, I can go weeks feeling superhuman, like I can take on the world. But then i come back to earth with a crash. Every hospital appointment leaves me drained. Fighting for everything Nate needs in life leaves me drained. Nothing is straightforward. I feel near to depressed sometimes, and this frightens me. Not depressed because of Nate being different, but everything that comes with it. On top of this I think I've mentioned before that I am feeling really weird about Nates birthday. It's hard to explain. And this is the last thing I discussed in my session today. I feel sad about it. Why the hell do I feel sad about Nate turning one? At various points over the last year it seemed that this momentous occasion wouldnt even happen. So why am I sad? And why do I suspect I will totally fall apart around his birthday?
I've done some thinking today and ive come up with several possibilities.
- I'm still traumatised by his birth and him being taken away. I never had that time after the birth when all the family stand round ooing and arhing at a newborn and demand a hold. And I am bitter and angry about this. I feel we ALL missed out. I also can't watch one born every minute or other birth things because of this. I resent missing that special time. Our time after his birth, that first weekend in particular was unfucking believably awful. Scuse language. At the time I wished I could fast forward 6months and see how he was doing. I look back now and know if the me back then could see him as he is now, I would have coped a lot better! God I'm actually feeling shakey and teary thinking about it.
- I'm sad in general about how his first year has gone. We've missed so much with frequent hospital stays, worrying about diagnoses etc. I'm sad about what he's had to go through, the MRIs, the xrays, the blood tests, the ultrasounds, the apnoea episodes and resuscitation.
- I'm sad because this wasn't how things were supposed to go.
Well as I have a stropy 4 yr old wanting a cuddle, and a crying teething baby I have been brought back to the here and now, better get on with things. Can't complain at an opportunity to snuggle both the kiddies :)
I've done some thinking today and ive come up with several possibilities.
- I'm still traumatised by his birth and him being taken away. I never had that time after the birth when all the family stand round ooing and arhing at a newborn and demand a hold. And I am bitter and angry about this. I feel we ALL missed out. I also can't watch one born every minute or other birth things because of this. I resent missing that special time. Our time after his birth, that first weekend in particular was unfucking believably awful. Scuse language. At the time I wished I could fast forward 6months and see how he was doing. I look back now and know if the me back then could see him as he is now, I would have coped a lot better! God I'm actually feeling shakey and teary thinking about it.
- I'm sad in general about how his first year has gone. We've missed so much with frequent hospital stays, worrying about diagnoses etc. I'm sad about what he's had to go through, the MRIs, the xrays, the blood tests, the ultrasounds, the apnoea episodes and resuscitation.
- I'm sad because this wasn't how things were supposed to go.
Well as I have a stropy 4 yr old wanting a cuddle, and a crying teething baby I have been brought back to the here and now, better get on with things. Can't complain at an opportunity to snuggle both the kiddies :)
Sunday, 15 May 2011
Some issues with ethics and an update
13/05/11Some issues with ethics and an update
Another busy week,
Nate has been full of snot, and by now you will know what that means..... But no he's doing ok at the minute!
We put the house on the market, desperate for more space. So now having to find a mortgage, ours is unhelpfully with northern rock and they keep telling us politely to naff off even though weve never missed a payment.
Awful day Wednesday. CCN ( community nurse) came as usual to check Nate, the result of his nasal swab taken Monday was in but when they rang the lab the lab wouldn't give them the result saying it had been passed on to the gp. Which, obviously, suggested he'd tested positive for something! Rang gp and receptionist said they were contacting Nates resp consultant for "clarification" and then would be in touch. Eh? Getting quite stressed by this point, worrying about what he had and the potential for disaster. I contacted the consultant's secretary who knew nothing. Contacted gp again and was told they'd chase it up and ring me back. Should it really be this difficult to get test results on a vulnerable child? Hmmm
In the mean time I picked up my daughter from pre school. An hr later she was on the loo and crying with blood on her knickers. Que panic! Took her to walk in centre and then children's ward. She told me shed crashed a scooter into a fence and banged her girlie bits against the screw bit half way up the scooters metal pole. My poor bairn. So I had several hrs of spanish inquisition as drs tried to get thea to change her story- "you fell off your bike didn't you thea" " you hit the handlebars didnt you thea". Complete nightmare . But she's ok now!
gp then rang back. What a snotty woman wanting to know who did the swab and why, why we had nurses coming out, how long they've been coming out etc. Nice to see she was up to date with my sons history! Told me Nate was positive for RSV, but that it was a common virus and not an issue!!!! I had to point out my son had been seriously ill with it before Xmas!!! FFS! But so far, he's managing. God bless our suction machine!
Today we had the dreaded genetics clinic appointment. We dread it as every time we see the geneticist she has some other life limiting syndrome to test for. This time her collegues had two things to test for, neither of which she thinks he has. Therefore we declined the tests. Im sick and tired of MRIs, ultrasounds and x rays, of DNA tests and pictures being taken. Apparently they had suggested these things based on his unusual appearance, I covered Nates ears and told him not to listen at that point. She then told us of a huge study we could be part of, where Nates whole DNA and genes would be read and matched to known syndromes. They are studying undiagnosed children with
developmental delay. I asked if the information would be used to discover new syndromes etc. She said yes eventually.
I am unsure whether to participate. It worries me when databases have lists of genes and what they cause. I worry
about the pursuit of perfection, and the pressure on mothers to abort less than perfect children. It is an ethical minefield I want no part of. it is one thing to screen embryos of parents who carry severe life limiting conditions to allow then to have a healthy child and another thing entirely to abort a foetus who might be what society decrees as less than perfect .
Nate has been full of snot, and by now you will know what that means..... But no he's doing ok at the minute!
We put the house on the market, desperate for more space. So now having to find a mortgage, ours is unhelpfully with northern rock and they keep telling us politely to naff off even though weve never missed a payment.
Awful day Wednesday. CCN ( community nurse) came as usual to check Nate, the result of his nasal swab taken Monday was in but when they rang the lab the lab wouldn't give them the result saying it had been passed on to the gp. Which, obviously, suggested he'd tested positive for something! Rang gp and receptionist said they were contacting Nates resp consultant for "clarification" and then would be in touch. Eh? Getting quite stressed by this point, worrying about what he had and the potential for disaster. I contacted the consultant's secretary who knew nothing. Contacted gp again and was told they'd chase it up and ring me back. Should it really be this difficult to get test results on a vulnerable child? Hmmm
In the mean time I picked up my daughter from pre school. An hr later she was on the loo and crying with blood on her knickers. Que panic! Took her to walk in centre and then children's ward. She told me shed crashed a scooter into a fence and banged her girlie bits against the screw bit half way up the scooters metal pole. My poor bairn. So I had several hrs of spanish inquisition as drs tried to get thea to change her story- "you fell off your bike didn't you thea" " you hit the handlebars didnt you thea". Complete nightmare . But she's ok now!
gp then rang back. What a snotty woman wanting to know who did the swab and why, why we had nurses coming out, how long they've been coming out etc. Nice to see she was up to date with my sons history! Told me Nate was positive for RSV, but that it was a common virus and not an issue!!!! I had to point out my son had been seriously ill with it before Xmas!!! FFS! But so far, he's managing. God bless our suction machine!
Today we had the dreaded genetics clinic appointment. We dread it as every time we see the geneticist she has some other life limiting syndrome to test for. This time her collegues had two things to test for, neither of which she thinks he has. Therefore we declined the tests. Im sick and tired of MRIs, ultrasounds and x rays, of DNA tests and pictures being taken. Apparently they had suggested these things based on his unusual appearance, I covered Nates ears and told him not to listen at that point. She then told us of a huge study we could be part of, where Nates whole DNA and genes would be read and matched to known syndromes. They are studying undiagnosed children with
developmental delay. I asked if the information would be used to discover new syndromes etc. She said yes eventually.
I am unsure whether to participate. It worries me when databases have lists of genes and what they cause. I worry
about the pursuit of perfection, and the pressure on mothers to abort less than perfect children. It is an ethical minefield I want no part of. it is one thing to screen embryos of parents who carry severe life limiting conditions to allow then to have a healthy child and another thing entirely to abort a foetus who might be what society decrees as less than perfect .
Whirlwind of a day
09/05/11Whirlwind of a day
Well. Where to begin. Today has been mad busy and it isn't over yet.
Nate has been snotty for weeks. But on saturday became much worse. We have been extremely worried as this is how all our hospitals stays begin. And much as I like the staff on ward 2 I could do without seeing them for a while!
Nate had a good night on his nippy. Didn't need more oxygen than normal. He woke this morning and when I transferred him from nippy to nasal canula his sats dropped loads. Fortunately we have a spangly new suction machine which sorted him out. But I was worried so we called the nurses ( who we could call at the weekend as their hours have been cut, thanks government). He's managing ok at the minute and we are on day 3 of whatever virus he has. Typically days 3-5 are the worst so we may still have problems and when Nate goes downhill he does it fast.
We had an insensitive ignorant bloke out to sort our energy certificate. He was "taken aback and shocked" at my beautiful son. He "thanked god for his two" and said when talking about a child he knew who had heart problems that "some things aren't meant to be". I am embarrassed to say apart from saying my son is
We had the estate agent out taking photos of the house today, and the for sale board is up. We are taking the advice of the very helpful adaptations department and trying to move as they don't want to help with space or storage of equipment.
Then we had some happy news nates respiratory consultant says we can wean him off oxygen when he's well, hooray!
Nate has been snotty for weeks. But on saturday became much worse. We have been extremely worried as this is how all our hospitals stays begin. And much as I like the staff on ward 2 I could do without seeing them for a while!
Nate had a good night on his nippy. Didn't need more oxygen than normal. He woke this morning and when I transferred him from nippy to nasal canula his sats dropped loads. Fortunately we have a spangly new suction machine which sorted him out. But I was worried so we called the nurses ( who we could call at the weekend as their hours have been cut, thanks government). He's managing ok at the minute and we are on day 3 of whatever virus he has. Typically days 3-5 are the worst so we may still have problems and when Nate goes downhill he does it fast.
We had an insensitive ignorant bloke out to sort our energy certificate. He was "taken aback and shocked" at my beautiful son. He "thanked god for his two" and said when talking about a child he knew who had heart problems that "some things aren't meant to be". I am embarrassed to say apart from saying my son is
We had the estate agent out taking photos of the house today, and the for sale board is up. We are taking the advice of the very helpful adaptations department and trying to move as they don't want to help with space or storage of equipment.
Then we had some happy news nates respiratory consultant says we can wean him off oxygen when he's well, hooray!
ME
11/04/11Me
So who am I now?
Things change when you have children, even more so when your child has special needs. So I think I've changed a great deal over the last 10 months.
I'm less selfish, more inclined to help, less inclined to whinge ( most days)
I'm more resilient
I'm less tolerant of crap. Don't bore me with your trivial day to day problems when I'm having a shite time. Seriously who said what to who about blah doesn't matter! and be prepared that I will tell you about inspiring people and children I have met. Keep things in perspective .
I'm not a martyr. Im finding things hard. I need counselling, id like a drink but that's just not possible. I'd like to get shitfaced on occasion but when your baby is up in the night and you have to be "on the ball " in case of problems it's simply not possible
I want to get and about, sometimes it's difficult but please don't leave me out
I want to know how your children are doing. Please don't think you can't share their accomplishments and your stresses. But I will share mine and expect small things to be met with a face of sheer delight or horror ( as appropriate ) if I rant it's not fr sympathy it's because I need to rant!
I see things differently.
I'm not devastated my second child is "different". He is who he is.
I talk in abbreviations, ASD, BIPAP, etc. Sorry.
I google everything. I will not see a doctor unprepared or take any shizz from them
I have grown a pair ( not literally obviously) and will stand up for things. So just don't start ok!!!
I can be a bitch, I am candid.
I love my two children and appreciate sooo much the special times I have with my daughter. She's such a big girl and has to put up with such a lot. Lub oo.
I am not just "Nates mam, you know know, Nate with the problems" I am thea and Nates mam, I HAVE A NAME and its Rachel x
Things change when you have children, even more so when your child has special needs. So I think I've changed a great deal over the last 10 months.
I'm less selfish, more inclined to help, less inclined to whinge ( most days)
I'm more resilient
I'm less tolerant of crap. Don't bore me with your trivial day to day problems when I'm having a shite time. Seriously who said what to who about blah doesn't matter! and be prepared that I will tell you about inspiring people and children I have met. Keep things in perspective .
I'm not a martyr. Im finding things hard. I need counselling, id like a drink but that's just not possible. I'd like to get shitfaced on occasion but when your baby is up in the night and you have to be "on the ball " in case of problems it's simply not possible
I want to get and about, sometimes it's difficult but please don't leave me out
I want to know how your children are doing. Please don't think you can't share their accomplishments and your stresses. But I will share mine and expect small things to be met with a face of sheer delight or horror ( as appropriate ) if I rant it's not fr sympathy it's because I need to rant!
I see things differently.
I'm not devastated my second child is "different". He is who he is.
I talk in abbreviations, ASD, BIPAP, etc. Sorry.
I google everything. I will not see a doctor unprepared or take any shizz from them
I have grown a pair ( not literally obviously) and will stand up for things. So just don't start ok!!!
I can be a bitch, I am candid.
I love my two children and appreciate sooo much the special times I have with my daughter. She's such a big girl and has to put up with such a lot. Lub oo.
I am not just "Nates mam, you know know, Nate with the problems" I am thea and Nates mam, I HAVE A NAME and its Rachel x
My mothers day in hospital
03/04/11My mothers day in hospital
This time last year I was really excited. Pregnant and looking forward to the new baby. I remember saying " next mothers day I will be a mam of two" I did not envisage spending it in hospital with my baby boy 
But I have and this is how it went..
Woke up very early. Baby boy had a bad night, restless, fidgety, temp. Just teeth I think. He needed loads of oxygen as he wouldn't settle on his ventilator. It helps if he goes into a deep sleep and either works with the machine or lets it take over but he didn't. A few errors made on the ward last night, won't get into it, but I did speak to the sister today. So had a grumpy phone call with hubbie about when hed be over. Then had natie snuggles and he was sick. Nothing to do with my snuggles I hasten to add. Magic calpol made him feel better which was a relief.
Spent a fair bit time chatting to the other mothers in here. Familiar faces after repeated admissions or lengthy stays. One got to go home today - that made her mothers day
Hubbie and squeekles appeared at lunch time armed with a kfc cards and the lovely plate shed decorated. Love the things they make at pre school. I need a huge box to keep these "forever" things in! After loosing a bit of weight with my zumba antics the hospital stay has easily put a stop to that! Grrr to rustlers burgers and crisps !!!
It was lovely to see my daughter but she didn't let me forget that it wasn't right me being in hospital shed wanted to make me breakfast in bed, my fab little girl!
And that was it. Nothing dramatic. Just a bit different.
Better one next year I'm sure.....
But I have and this is how it went..
Woke up very early. Baby boy had a bad night, restless, fidgety, temp. Just teeth I think. He needed loads of oxygen as he wouldn't settle on his ventilator. It helps if he goes into a deep sleep and either works with the machine or lets it take over but he didn't. A few errors made on the ward last night, won't get into it, but I did speak to the sister today. So had a grumpy phone call with hubbie about when hed be over. Then had natie snuggles and he was sick. Nothing to do with my snuggles I hasten to add. Magic calpol made him feel better which was a relief.
Spent a fair bit time chatting to the other mothers in here. Familiar faces after repeated admissions or lengthy stays. One got to go home today - that made her mothers day
Hubbie and squeekles appeared at lunch time armed with a kfc cards and the lovely plate shed decorated. Love the things they make at pre school. I need a huge box to keep these "forever" things in! After loosing a bit of weight with my zumba antics the hospital stay has easily put a stop to that! Grrr to rustlers burgers and crisps !!!
It was lovely to see my daughter but she didn't let me forget that it wasn't right me being in hospital shed wanted to make me breakfast in bed, my fab little girl!
And that was it. Nothing dramatic. Just a bit different.
Better one next year I'm sure.....
bad week
01/04/11Bad week
So. Not blogged for a few days as pie took a turn for the worse. He seemed on Tuesday so I came home for a night and hubbie came in. The night was ok hubbie went to work wednesday morning and I dropped squeekles at pre school, picked her up,dropped her at my mams and made my way over to hospital.....
Walked into ward to find pie on his ventilator looking seriously ill. Nurse hooking up to iv for fluids and it was awful. I got such a shock. I hadn't hurried over to hospital as he had been ok.the guilt was unimaginable. Pie had come off his vent and then suddenly started turning pale, blue by the time the drs got there. He had apparently blocked an airway with mucus and it was quickly rectified by repositioning and hoofing up the oxygen. But it gave everyone a hell of a shock. The rest of the day was pretty awful. Things werent looking good.
He has a viral infection - human metapneumovirus. And it made him very Ill. They tell me day 5 is the worst and that was Wednesday when his turn happened. He's fed with an ng tube at the mo while he recovers. Today he is looking better, playing and being stroppy. More pies usual self. So hopefully he's on the road to recovery....
I'm braving going home again tonight. He better behave!!!!!!
On a positive squeekles got into the primary school we wanted - literally 2 mins away.
So now looking forward to mothers day in hospital... My first mothers day as a mam of 2
So that's the short short version, add many tears and sleepless nights and that pretty much sums things up...
Pie, when your older I will relate to you your dramatic first year of life through my blog, you monkey!
Walked into ward to find pie on his ventilator looking seriously ill. Nurse hooking up to iv for fluids and it was awful. I got such a shock. I hadn't hurried over to hospital as he had been ok.the guilt was unimaginable. Pie had come off his vent and then suddenly started turning pale, blue by the time the drs got there. He had apparently blocked an airway with mucus and it was quickly rectified by repositioning and hoofing up the oxygen. But it gave everyone a hell of a shock. The rest of the day was pretty awful. Things werent looking good.
He has a viral infection - human metapneumovirus. And it made him very Ill. They tell me day 5 is the worst and that was Wednesday when his turn happened. He's fed with an ng tube at the mo while he recovers. Today he is looking better, playing and being stroppy. More pies usual self. So hopefully he's on the road to recovery....
I'm braving going home again tonight. He better behave!!!!!!
On a positive squeekles got into the primary school we wanted - literally 2 mins away.
So now looking forward to mothers day in hospital... My first mothers day as a mam of 2
So that's the short short version, add many tears and sleepless nights and that pretty much sums things up...
Pie, when your older I will relate to you your dramatic first year of life through my blog, you monkey!
The rollercoaster dips again
29/03/11The rollercoaster dips again
So after my stupidly positive last entry guess where we are again .... That's right hospital.
Back on the respiratory ward. Pie has been teething again and we have all had colds and coughs. What I put down to teething was actually the starts of him being unwell. So he was working harder breathing, high temp, and needed more oxygen Sunday night. He's slept most of today and is now on his nippy needing a lot of oxygen. He has a huge amount of snot which isn't helping.
Im just sitting watching his sats and thinking about things. Is this going to be his life back in hospital every other month? My poor baby he was doing so well. And I miss my daughter it's so hard on her. And my husband too. I want us all home back to our special type of normality. I'm sick of rooms in hospital, spending money on crap at the shop, eating rubbish, being stressed out and lonely., not getting many visitors- we are in so often I don't think people see it as a major event! , sick of being asked the same questions and going through the same motions. I'm worn out from worrying, I want to go to sleep and wake up with us all at home happy being silly having fun.
Back on the respiratory ward. Pie has been teething again and we have all had colds and coughs. What I put down to teething was actually the starts of him being unwell. So he was working harder breathing, high temp, and needed more oxygen Sunday night. He's slept most of today and is now on his nippy needing a lot of oxygen. He has a huge amount of snot which isn't helping.
Im just sitting watching his sats and thinking about things. Is this going to be his life back in hospital every other month? My poor baby he was doing so well. And I miss my daughter it's so hard on her. And my husband too. I want us all home back to our special type of normality. I'm sick of rooms in hospital, spending money on crap at the shop, eating rubbish, being stressed out and lonely., not getting many visitors- we are in so often I don't think people see it as a major event! , sick of being asked the same questions and going through the same motions. I'm worn out from worrying, I want to go to sleep and wake up with us all at home happy being silly having fun.
He'll get there
24/03/11He'll get there
He'll get there. Not words we normally hear.
Today Nate had his weekly physio. Normally he finds it highly amusing to lie like a sack o spuds and refuse to even turn his head. The physio makes lots of "hmmmms" and looks unconvinced as I tell her what pie has been doing. But today .... Nate was on top form, lying on his tummy, lifting his head, turning it, pushing up and holding his head when the physio positioned his arms correctly ! I couldn't believe it and the physio was over the moon with him! She started talking about changes to exercises as his strength develops, and how strong he was today. Professionals are really careful in how they talk about nate. They focus on issues and problems and never talking about the future or what he will be able to do. So when the physio nodded at him saying "he'll get there " it made my day. It might seem silly to parents of children who are developing normally to get so excited about him lifting his head but this is a massive achievement for pie.
Then we had the hearing test.... Normal! Again, not a word used to describe pie.
So tonight I'm celebrating him doing these things by sharing them on here and leaving the bra off.
Rach xx
Today Nate had his weekly physio. Normally he finds it highly amusing to lie like a sack o spuds and refuse to even turn his head. The physio makes lots of "hmmmms" and looks unconvinced as I tell her what pie has been doing. But today .... Nate was on top form, lying on his tummy, lifting his head, turning it, pushing up and holding his head when the physio positioned his arms correctly ! I couldn't believe it and the physio was over the moon with him! She started talking about changes to exercises as his strength develops, and how strong he was today. Professionals are really careful in how they talk about nate. They focus on issues and problems and never talking about the future or what he will be able to do. So when the physio nodded at him saying "he'll get there " it made my day. It might seem silly to parents of children who are developing normally to get so excited about him lifting his head but this is a massive achievement for pie.
Then we had the hearing test.... Normal! Again, not a word used to describe pie.
So tonight I'm celebrating him doing these things by sharing them on here and leaving the bra off.
Rach xx
The start of things to come and the bra superstition
23/03/11The start of things to come and the bra superstition
So the bra superstition began in hospital. If I have one on I'm prepared mentally for anything. I'm not sure what it is about having my puppies tucked away but I sleep less worriedly and have more confidence in the night ahead. It all began in hospital you see. The last thing you want when an sho is taking blood in the middle of the night from your baby is one falling out and saying hello. If nate was having a bad night- bra on -cuppa tea- sorted. It's getting ridiculous now as it's quite hot in our bedroom with the concentrator. Also hubbie now thinks I'm odd. Hmmm
Start of things- I mean being ignored, not invited to things. Yes my son Is disabled but we do actually leave the house you know!!! Sigh. Make arrangements in front of me but don't invite me. Lovely. Snub to me or pie ? Not sure?
On a scarily good note pie has been going crackers, really lively and alert this week. When on his tummy he is moving his head great and lifting it up to change sides.!!!!! Also he's started pushing through his feet when held up. Can't believe it!!!!
Busy day tomorrow let's start learning group physio then hearing test.
Night x
Start of things- I mean being ignored, not invited to things. Yes my son Is disabled but we do actually leave the house you know!!! Sigh. Make arrangements in front of me but don't invite me. Lovely. Snub to me or pie ? Not sure?
On a scarily good note pie has been going crackers, really lively and alert this week. When on his tummy he is moving his head great and lifting it up to change sides.!!!!! Also he's started pushing through his feet when held up. Can't believe it!!!!
Busy day tomorrow let's start learning group physio then hearing test.
Night x
How to fit it all in
20/03/11 How to fit it all in
So I'm wondering, and I have been for a while - how to fit everything in to 24hrs.
I'm simply not sure how to do it. And I'm having to go back to work at the end of may, only 2 days a week, but that in itself poses many more problems to an already busy schedule. I have friends who want to catch up and I have to say, oh not this week maybe next week. And then the following week is full. So I ask you how can I fit it all in? Being mam to squeekles, natie, doing housey things, and working as a teacher and doing all the , excuse my language, shit that comes with teaching? So what I do...
Thea been taken and picked up from pre school each day
Nates physio with physiotherapist
Me doing physio daily with nate
A community nurse visit
Some sort of hospital appointment
Oxygen delivery every other week
HV every 4 weeks
Paeds every 3 months
Resp clinic every 3months
Put this all together with house stuff and it makes fr a very full week!
Squeekles had a sleepover at the outlaws last night.. Gone are the days when we would take the opportunity to do
something nice, just me and hubbie. Even if it was just copius amounts of alcohol a film and a pizza. So last night he went out and I had natie cuddles. We asked for overnight respite for natie, and were allocated one night every 5 weeks with a foster carer. Um I think not. We had someone with health training in mind. If we thought just anyone could look after him we'd ask a relative !
But anyway I've had a fairly restful weekend overall doesn't happen often, and 2 nights decent sleep defo doesn't
happen often!
So any ideas of how to fit everything in my life into 24hrs greatly appreciated.
Rach x
I'm simply not sure how to do it. And I'm having to go back to work at the end of may, only 2 days a week, but that in itself poses many more problems to an already busy schedule. I have friends who want to catch up and I have to say, oh not this week maybe next week. And then the following week is full. So I ask you how can I fit it all in? Being mam to squeekles, natie, doing housey things, and working as a teacher and doing all the , excuse my language, shit that comes with teaching? So what I do...
Thea been taken and picked up from pre school each day
Nates physio with physiotherapist
Me doing physio daily with nate
A community nurse visit
Some sort of hospital appointment
Oxygen delivery every other week
HV every 4 weeks
Paeds every 3 months
Resp clinic every 3months
Put this all together with house stuff and it makes fr a very full week!
Squeekles had a sleepover at the outlaws last night.. Gone are the days when we would take the opportunity to do
something nice, just me and hubbie. Even if it was just copius amounts of alcohol a film and a pizza. So last night he went out and I had natie cuddles. We asked for overnight respite for natie, and were allocated one night every 5 weeks with a foster carer. Um I think not. We had someone with health training in mind. If we thought just anyone could look after him we'd ask a relative !
But anyway I've had a fairly restful weekend overall
doesn't happen often, and 2 nights decent sleep defo doesn'thappen often!
So any ideas of how to fit everything in my life into 24hrs greatly appreciated.
Rach x
So the nateosaurus finally got baptised and other stories
19/03/11So the nateosaurus finally got baptised and other stories
So , finally, Nate was baptised. You will be pleased to learn that Nate is his Christian name and not nateosaurus, natie pie, natie sausage, natie capers I could go on....
Anyway it went well and it's such a relief, especially after the stopping breathing and having to be resuscitated shenanigans of the autumn! I don't believe that if we had lost him without him being baptised he wouldn't have gone to heaven, but I didn't want to risk it. These are things you think about after a near miss. Things you haven't really spent time considering before but are suddenly vitally important.
His paediatrician was pleased this week with him. I was so pleased she didn't mention all the things he can't do and focused on positives! He has to have a few referrals. The hunt for his testes continues, poor lad, she found them once but now he's a chunk she couldn't manage. Oh and his weight is so good we can stop the high calorie milk
Physio commented on his improved body strength but his neck is the problem. So rigorously sticking to the program we've been given to try to help.
My daughter seems to have been abducted by aliens and replaced by a stroppy teen, sigh. Love her soo much but she's testing my patience! She's at her grandparents tomorrow so we can bin some furniture and make space in our living room for all nates kit. We got some fantastic sensory equipment on loan from a charity called tabithas toys. They were lovely!!!!! Just have to find space for it...
Anyway it went well and it's such a relief, especially after the stopping breathing and having to be resuscitated shenanigans of the autumn! I don't believe that if we had lost him without him being baptised he wouldn't have gone to heaven, but I didn't want to risk it. These are things you think about after a near miss. Things you haven't really spent time considering before but are suddenly vitally important.
His paediatrician was pleased this week with him. I was so pleased she didn't mention all the things he can't do and focused on positives! He has to have a few referrals. The hunt for his testes continues, poor lad, she found them once but now he's a chunk she couldn't manage. Oh and his weight is so good we can stop the high calorie milk
Physio commented on his improved body strength but his neck is the problem. So rigorously sticking to the program we've been given to try to help.
My daughter seems to have been abducted by aliens and replaced by a stroppy teen, sigh. Love her soo much but she's testing my patience! She's at her grandparents tomorrow so we can bin some furniture and make space in our living room for all nates kit. We got some fantastic sensory equipment on loan from a charity called tabithas toys. They were lovely!!!!! Just have to find space for it...
Facing facts
09/03/11 Facing facts
So things have been busy since we escaped from hospital.
Appointments galore, you get the picture. Couple of positives....
I got my White line outside the house! Hopefully people won't park on it, it should make things easier.
Weve been appointed health care assistants to look after Nate 6 hrs a week and let me have time with thea , and by myself! Whoop whoop.
But I think on Monday I came to terms with the fact that yes my baby is truly disabled.
We got...... A chair for him. It's a sunbeam chair and it's mahooosive!! It does lots of fancy things and has a tray and lots of bits fasten to keep him secure. It's not ideal as is shoulders are flopping forwards so he needs something additional to support him. The new physio is on the case. Shes very efficient.
Anyway its the first proper special needs equipment we've got. And obviously it won't be the last. So it all kind of hit me. The implications I mean. That my child is different and requires specialist equipment. wouldn't you have thought that the oxygen and ventilator would have already made this hit home? So I feel a bit weird about everything. Part sad, part coming to terms with things. I'm thinking long term needs and things like that. Which I'm scared to do as I feel the geneticist will lob another ridiculously rare and fatal genetic disease at us. I imagined his 1st birthday the other day. Something I'm terrified to do as at times it seemed he wouldn't make it that far. I think it should be a major
affair, a true celebration. But I have a sneaky feeling I'm going to completely fall apart on the 26th June
Appointments galore, you get the picture. Couple of positives....
I got my White line outside the house! Hopefully people won't park on it, it should make things easier.
Weve been appointed health care assistants to look after Nate 6 hrs a week and let me have time with thea , and by myself! Whoop whoop.
But I think on Monday I came to terms with the fact that yes my baby is truly disabled.
We got...... A chair for him. It's a sunbeam chair and it's mahooosive!! It does lots of fancy things and has a tray and lots of bits fasten to keep him secure. It's not ideal as is shoulders are flopping forwards so he needs something additional to support him. The new physio is on the case. Shes very efficient.
Anyway its the first proper special needs equipment we've got. And obviously it won't be the last. So it all kind of hit me. The implications I mean. That my child is different and requires specialist equipment. wouldn't you have thought that the oxygen and ventilator would have already made this hit home? So I feel a bit weird about everything. Part sad, part coming to terms with things. I'm thinking long term needs and things like that. Which I'm scared to do as I feel the geneticist will lob another ridiculously rare and fatal genetic disease at us. I imagined his 1st birthday the other day. Something I'm terrified to do as at times it seemed he wouldn't make it that far. I think it should be a major
affair, a true celebration. But I have a sneaky feeling I'm going to completely fall apart on the 26th June
Amazing people I've never met :)
28/02/11I know they won't read this but I've been thinking about how people you have never met can have such an impact on your life.
Im not going to lie. I'm struggling mentally, physically, emotionally at the minute. And it amazes me how professionals who are paid to do a job and make your life easier, well don't. But people you have never met care more and do more out of the goodness of their heart.
I joined an online mother and baby group when pg with Nate and we created our own fb group and all but abandoned the forum where we met. We shared pregnancy woes and stresses, family dramas, you get the idea. When nate was in scbu and hospital since they have always been there for me. And one day a box arrived at my door. It was to keep me and the family going. In it was a doll for thea with her name on, a canvas of thea and nate, personalised mugs, a blanket and pillow for Nate handmade by a very talented lady ( check out sirimuse crafts on fb), a scarf made by the same lady, and a special handmade card ( Paperdreams) also a cross stitched nateosaurus and a teddy for Nate with his birthday on. I cried and cried. I didn't feel alone, and I felt I had support, amazing ladies.
And now I'm widening my horizons using twitter and have read stories and blogs that show there are people who truely understand what we are going through. And not only that are willing to share advice, experiences, and support me when they don't really know me at all.
So thankyou people I've never met. Thankyou for everything.
Im not going to lie. I'm struggling mentally, physically, emotionally at the minute. And it amazes me how professionals who are paid to do a job and make your life easier, well don't. But people you have never met care more and do more out of the goodness of their heart.
I joined an online mother and baby group when pg with Nate and we created our own fb group and all but abandoned the forum where we met. We shared pregnancy woes and stresses, family dramas, you get the idea. When nate was in scbu and hospital since they have always been there for me. And one day a box arrived at my door. It was to keep me and the family going. In it was a doll for thea with her name on, a canvas of thea and nate, personalised mugs, a blanket and pillow for Nate handmade by a very talented lady ( check out sirimuse crafts on fb), a scarf made by the same lady, and a special handmade card ( Paperdreams) also a cross stitched nateosaurus and a teddy for Nate with his birthday on. I cried and cried. I didn't feel alone, and I felt I had support, amazing ladies.
And now I'm widening my horizons using twitter and have read stories and blogs that show there are people who truely understand what we are going through. And not only that are willing to share advice, experiences, and support me when they don't really know me at all.
So thankyou people I've never met. Thankyou for everything.
Why am I doing this again?
23/02/11So I've been thinking, why am I keeping a blog ? I don't expect people to read it, I don't write very well, it doesnt flow so to speak. I don't even know what attitude to take in my writing. Is my life a story ? Are these simply thoughts and feelings? Should it be full of emotion or merely factual. I don't know. What I do know is that it helps and part of me thinks maybe in a few years I will look back on what we've been through as a family with disbelief. Hmmmm
So I'm sitting on a rather uncomfy bed watching nates sats go up and down. Waiting for him to settle on his nippy ventilator so I can relax. I am wound so tight. I keep getting hit with memory's in the form of emotions- when they told us Nate was unusual looking and probably had a serious genetic disease, when they looked at him asa puzzle, when I saw him in the incubator, when they quietly moved me rooms away from the mothers who had normal babies lying next to them, when I had to leave hospital without him, pushing myself to express milk like it could cure him, getting him home, exhaustion feeding him by ng tube at 3am taking turns with dh, getting told his chromosomes were normal, finding out he needed ventilator at night and being terrified when he turned blue, being even more terrified when he did the same at home and saying "my baby has stopped breathing" to the 999 operator,sitting by his cot during illness, finding he didn't have 2 life limiting genetic disorders, watching him grow and play with toys, watching him go from tube fed to bottle to solids, realising he had started to be able to see as he truely smiled at my face, the joy when he reaches and grabs my face and twists my chin....
Yes this is why I'm doing it. I need to remember it all good or bad.
So I'm sitting on a rather uncomfy bed watching nates sats go up and down. Waiting for him to settle on his nippy ventilator so I can relax. I am wound so tight. I keep getting hit with memory's in the form of emotions- when they told us Nate was unusual looking and probably had a serious genetic disease, when they looked at him asa puzzle, when I saw him in the incubator, when they quietly moved me rooms away from the mothers who had normal babies lying next to them, when I had to leave hospital without him, pushing myself to express milk like it could cure him, getting him home, exhaustion feeding him by ng tube at 3am taking turns with dh, getting told his chromosomes were normal, finding out he needed ventilator at night and being terrified when he turned blue, being even more terrified when he did the same at home and saying "my baby has stopped breathing" to the 999 operator,sitting by his cot during illness, finding he didn't have 2 life limiting genetic disorders, watching him grow and play with toys, watching him go from tube fed to bottle to solids, realising he had started to be able to see as he truely smiled at my face, the joy when he reaches and grabs my face and twists my chin....
Yes this is why I'm doing it. I need to remember it all good or bad.
Still in here
20/02/11So nate isn't much better. Apparently we need to be patient...
And must remember 1 that the winter is nearly over and 2 he will be much stronger by next winter and 3 that healthy children can be hospitalised with what Nate has it just takes him longer to recover..
So I'm going slowly mad in here hoping today's visitors hurry up. Yes dad I'm talking to you! And if they turn up with a coffee and a Macdonalds brekkkie I may fall to the floor!
I miss my daughter so much. And keep thinking about what needs to be done in the house...
I reckon we will be in at least another week. It's a lovely ward with great staff but we certainly don't want to be here long, not after the big stay of September - October
Come on Nate. Talk about mr grumpy. In addition to everything else he has teeth coming through. Clingy screamy baby . Mc screamy I shall call him. O that makes me think of greys. No hot drs in here like that tho lol.
X
And must remember 1 that the winter is nearly over and 2 he will be much stronger by next winter and 3 that healthy children can be hospitalised with what Nate has it just takes him longer to recover..
So I'm going slowly mad in here hoping today's visitors hurry up. Yes dad I'm talking to you! And if they turn up with a coffee and a Macdonalds brekkkie I may fall to the floor!
I miss my daughter so much. And keep thinking about what needs to be done in the house...
I reckon we will be in at least another week. It's a lovely ward with great staff but we certainly don't want to be here long, not after the big stay of September - October
Come on Nate. Talk about mr grumpy. In addition to everything else he has teeth coming through. Clingy screamy baby . Mc screamy I shall call him. O that makes me think of greys. No hot drs in here like that tho lol.
X
Guilt, rollercoasters, welcome to my life
Well firstly the nateosaurus is loads better. They are turning down the % on the humicare and will then reduce the oxygen. He hasn't seemed anywhere near as ill as he was last time with bronchiolitis he's still feeding, playing and smiley. And most importantly hadnt list the strength he has built up since last time! Although caused by a different virus this time.
18/02/11It's hard being in hospital with him away from thea and hard being at home awY from him. Going to bed with an empty cot in the room made me feel like someone had ripped open my stomach and tore everything out! Same again tonight and then it's my turn fir night shift again.
Today I am amazed by my naïveté. I always thought when I saw disabled children that their parents must find things difficult but that there would be help and support for them physically and financially. I gave been shocked by the callousness of the children with disabilities team and housing OT dept. Apparently if you dont have space for your disabled Childs equipment you should just move. Doesn't matter you've given up full time work to care for the child and are financially screwed. And even when they know you desperately need equipment unless you harass the living daylights out of them don't expect to see anything soon. And if you dont ask/ demand help and advice don't expect it to be offered. And don't expect councils to give you a disabled parking space !!!
My friends are all stunned. As was I.
Hmmmm
18/02/11It's hard being in hospital with him away from thea and hard being at home awY from him. Going to bed with an empty cot in the room made me feel like someone had ripped open my stomach and tore everything out! Same again tonight and then it's my turn fir night shift again.
Today I am amazed by my naïveté. I always thought when I saw disabled children that their parents must find things difficult but that there would be help and support for them physically and financially. I gave been shocked by the callousness of the children with disabilities team and housing OT dept. Apparently if you dont have space for your disabled Childs equipment you should just move. Doesn't matter you've given up full time work to care for the child and are financially screwed. And even when they know you desperately need equipment unless you harass the living daylights out of them don't expect to see anything soon. And if you dont ask/ demand help and advice don't expect it to be offered. And don't expect councils to give you a disabled parking space !!!
My friends are all stunned. As was I.
Hmmmm
What to do at 1 am in a hospital cubicle??
16/02/11So it's 1.17. My son is fast asleep on a humicare machine as he's got one helluva snot problem and is having trouble breathing. So far we have encountered 3 nurses, 3 drs and one mam of a 4 months premmie with collapsed lungs. My prayers are for that little monkey too..
There are children crying and understaffed nurses rushing about. It's quiet in our luxury room. I'm not being sarcastic it is good. Mind the niceness novelty wears off after day 3 in our experience
So yet another set back for Nate. My little boy who gets stronger every day and yet us floored by the simplest of things- a cold.ooo SATs up to 97, please let them stay there. I think we will be here for a while. Until the snot is gone.
So my addiction to costa coffee will return, and my bank balance will decrease. Hospital stays aren't cheap.
My little girl will be fast asleep in her bed. She broke her heart crying that mammy wasn't going to be at home tonight. This parenting lark isn't easy ...
Well better get some sleep. Next doors crying has stopped...
Rachel xx
There are children crying and understaffed nurses rushing about. It's quiet in our luxury room. I'm not being sarcastic it is good. Mind the niceness novelty wears off after day 3 in our experience
So yet another set back for Nate. My little boy who gets stronger every day and yet us floored by the simplest of things- a cold.ooo SATs up to 97, please let them stay there. I think we will be here for a while. Until the snot is gone.
So my addiction to costa coffee will return, and my bank balance will decrease. Hospital stays aren't cheap.
My little girl will be fast asleep in her bed. She broke her heart crying that mammy wasn't going to be at home tonight. This parenting lark isn't easy ...
Well better get some sleep. Next doors crying has stopped...
Rachel xx
long time no blog
13/02/11It's been a crazy time. Appointment after appointment. They seem endless.
Nate has been quite well. Apart from not performing for the physio. She clearly thinks I'm mad, or can't accept the problems Nate has. His eye tests showed nerve function was normal, no damage, so it's just a waiting game for his sight to develop.
Actually everything is a waiting game. " we will have to wait and see" the favourite comment by every professional involved with Nate. So at 7 months Nate is starting too see, and because of this he shows more interest in his toys and the world. He still only half rolls, can hold toys, is smiley and happy, eats food now and can hold his head, when he's not tired.
More appointments this week.
And hopefully a bit more help, support from social services, OT and the council. A week without having to battle for Nate would be a good week indeed.
and a week without a poorly thea would be excellent too
Xx
Nate has been quite well. Apart from not performing for the physio. She clearly thinks I'm mad, or can't accept the problems Nate has. His eye tests showed nerve function was normal, no damage, so it's just a waiting game for his sight to develop.
Actually everything is a waiting game. " we will have to wait and see" the favourite comment by every professional involved with Nate. So at 7 months Nate is starting too see, and because of this he shows more interest in his toys and the world. He still only half rolls, can hold toys, is smiley and happy, eats food now and can hold his head, when he's not tired.
More appointments this week.
And hopefully a bit more help, support from social services, OT and the council. A week without having to battle for Nate would be a good week indeed.
and a week without a poorly thea would be excellent too
Xx
Ok so here it goes...New year new start
so I've decided to be a blogger. Things are, well, a bit hectic in my life, and I think this will let me process my thoughts and record what is happening day to day. New year new start and all that.
2010 was a mixed bag tbh. I remember being excited on new years day thinking about what the year would bring. A new baby, time off work etc etc. But things didn't work out quite as we expected.
my son was born on time weighing 6lb 15oz on the 26th June. He didn't do much and was a funny colour. He was taken away to SCBU for a paediatrician to look at him. Back in an hour they said. But they realised quickly that things weren't right with him. He didn't move much, or cry, and wasn't hungry. He spent 4 weeks in SCBU and the staff were amazing. They and my daughter kept Michael and myself sane. He came home tube fed and needed oxygen. Over the last 6 months we have been told several truly awful potent Gradually he started to improve, and move more. He is still what they call " floppy " but, doing really well I think. He can hold his head now at 6months which is a massive milestone for him. He's been in hospital a lot. But I'm not going to talk about that, I'm thinking to the future.
So heres to 2011, where my daughter will start reception in September ( where has the time gone??)
Where nates oxygen requirement might reduce and he stays out of hospital
Where we might get some more space for nate's equipment.
And where our little family gets to have fun and enjoy life.
2010 was a bit of a bitch.
Rach x
what is normal?
2011-01-02 – 22:36:23
Today im pondering what we mean by 'normal'. My son is not technically normal . He has poor muscle tone- hypotonia. He needs oxygen via nasal canula, and a ventilator at night. But do I really want normal for him? What does it mean to be normal? What we see on tv certainly isn't a reflection of everyday life,not normal at all. Reality t. V showing ' normal' people got boring so the eccentric and strange were brought in. Normal is boring. My son is anything but. Even my daughter is hilarious and wacky. No i don't think my life has been normal for a while. But who gives a monkeys
Rach x
Rach x
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