I'm posting this separately even though vie done it at the same time as the result post because that was so positive and this one isn't so much and i didn't want to darken the 'happy' post!!!
Any way reagan's had diarrhoea for the last wk, she slept delay well on sat nighth, which is not like her at all!
And yesterday ( Sunday) she was sick, so I took her the out of hours GP last night. He wasn't worried and said she was well hydrated and it was probably just a bug.
But then today she seemed to go down hill, even though the diarrhoea finally seems to be getting better. She has Been so sleepy, floppy, and she hasn't eaten anything since Friday.
I spoke to dr Pelidis and she said that we really should have direct access to the childrens ward for times like this. Its pointless a GP seeing her, she needs to see a paed.
Anyway. They did her bloods and amazingly her HB is 10.6!!!!!! I was well impressed with her. They said that if the diarrhoea isn't any better by wed then she needs to go back, but it seems to be better already. Also i should see a marked improvement in her with in 48 hrs other wise again take her back.
He said that they wouldn't like to transfuse anymore than is absolutely necessary because the least amount of donors she has the better!!!!! ggggrrrrr its one of the reasons i want her to have her own donors! I'm seeing dr Salma tomorrow so will ask again. If not we've thought maybe we will ask if St Georges will do it for her. Also Dr Salma should be able to sort out direct access to the ward for us.
Also she was weighed while we were there, she was fully clothed and weighed 5.9kg which is about 13.1oz, that's a loss of 13oz in just under 2 wks, plus she was naked at her last weigh.
I expected she may have lost a little of stayed the same but not that much!
Monday 22 November 2010
REEEEEEEZUUUULT!!!!!!!!
OMG OMG OMG..................
We have the results back from the tissue matching, I'm sure you've already guessed..... Yep we have the result we wanted.
Not one but TWO matches, both Kennedy and Cade are a bone marrow match for Reagan. And remember I was hoping Peyton wouldn't be the one!!!! Even got that wish eh!!!
God dear, what a relief that is!
We have the results back from the tissue matching, I'm sure you've already guessed..... Yep we have the result we wanted.
Not one but TWO matches, both Kennedy and Cade are a bone marrow match for Reagan. And remember I was hoping Peyton wouldn't be the one!!!! Even got that wish eh!!!
God dear, what a relief that is!
Sunday 21 November 2010
Dr Pelidis' letter
So like i said i got the letter from dr Pelidis on tue, it's always so much clearer when its written down. When we're in her office none of it makes sense etc.
Anyway, I can't remember if I is aid that they found a mutation or something in one of her ribosomal genes??? Well they have and Dr Pelidis said it was one that was yet unpublished, but I've found it documented loads of times.
Basically they now know of 9 ribosomal genes that are mutated in DBA patients. They only have 1 mutated gene and they a account for about 50% ish of DBA patients.
Reagan has a mutation of RPL35a, she has a heterozygous mutation which means that only half ot it works but with out that half working the other half cant work either.........at least I think that's what it means.
I've also found out that once they have knowledge of a mutated gene that is a 100% confirmation of DBA.
Reagan has still got some kind of tummy bug, that's been a wk now. Peyton is pretty much the same though so it's obviously hanging about. But it means that Reagan is going through 2 outfits a day and 2 babygros a night. Which means midnight changes......and bedding changes. The other day I had no change of clothes for her so she had to go round Costco naked with her fluffy snow suit on. She kept sneaking her arm out and exposing her self!!! Luckily it wasn't too cold!!!
She's off her food now, so the little progress we did make has now gone! She's not even eating biscuits!
I've. Early finished The Match, it has taught me so much. It's pretty gruelling and horrid to think of that poor little girl going through everything that she does. It's hard to imagine that Reagan could be in her shoes one day and Alex and in in her mum and dads. ATM things aren't too bad for Reagan but it seems that this may be a false pre tense.
We still don't have the results back to tell us if anyone is a match for Reagan. I spoke to Dr Pelidis on Friday and she chased them up for us, they said early this week hopefully. So if I haven't heard anything by mid afternoon Tuesday I'll call her again.
What she did have though was some more results back from all our blood tests.
All of us had a good HB levels, I may have already told you that. All of us had normal sized blood cells, DBA patients have enlarged ones. And our ADA levels were done, DBA patients have elevated ADA levels.
Reagans was done just before her last transfusion, ideally it should be dome be before ever having a transfusion but even so reagans were significantly elevated. It doesn't say what they were.
Alexs was 78, either Cade or kaylums was 97, mine was 100, Kennedy was 104 and Peyton was 127. I cant remember whist the other one was but it was normal.
It should be between 60-100 (I thunk that's right, definitely not above 100) so I'm borderline but Kennedy and Peyton are high. Dr Pelidis said this may mean nothing but it may also imply that we are carriers of DBA. I'm not sure yet if they'll look into tat further.
Hopefully next time I blog it will be to say one of the children is a match!!!!!!!!! Fingers crossed anyway.
Anyway, I can't remember if I is aid that they found a mutation or something in one of her ribosomal genes??? Well they have and Dr Pelidis said it was one that was yet unpublished, but I've found it documented loads of times.
Basically they now know of 9 ribosomal genes that are mutated in DBA patients. They only have 1 mutated gene and they a account for about 50% ish of DBA patients.
Reagan has a mutation of RPL35a, she has a heterozygous mutation which means that only half ot it works but with out that half working the other half cant work either.........at least I think that's what it means.
I've also found out that once they have knowledge of a mutated gene that is a 100% confirmation of DBA.
Reagan has still got some kind of tummy bug, that's been a wk now. Peyton is pretty much the same though so it's obviously hanging about. But it means that Reagan is going through 2 outfits a day and 2 babygros a night. Which means midnight changes......and bedding changes. The other day I had no change of clothes for her so she had to go round Costco naked with her fluffy snow suit on. She kept sneaking her arm out and exposing her self!!! Luckily it wasn't too cold!!!
She's off her food now, so the little progress we did make has now gone! She's not even eating biscuits!
I've. Early finished The Match, it has taught me so much. It's pretty gruelling and horrid to think of that poor little girl going through everything that she does. It's hard to imagine that Reagan could be in her shoes one day and Alex and in in her mum and dads. ATM things aren't too bad for Reagan but it seems that this may be a false pre tense.
We still don't have the results back to tell us if anyone is a match for Reagan. I spoke to Dr Pelidis on Friday and she chased them up for us, they said early this week hopefully. So if I haven't heard anything by mid afternoon Tuesday I'll call her again.
What she did have though was some more results back from all our blood tests.
All of us had a good HB levels, I may have already told you that. All of us had normal sized blood cells, DBA patients have enlarged ones. And our ADA levels were done, DBA patients have elevated ADA levels.
Reagans was done just before her last transfusion, ideally it should be dome be before ever having a transfusion but even so reagans were significantly elevated. It doesn't say what they were.
Alexs was 78, either Cade or kaylums was 97, mine was 100, Kennedy was 104 and Peyton was 127. I cant remember whist the other one was but it was normal.
It should be between 60-100 (I thunk that's right, definitely not above 100) so I'm borderline but Kennedy and Peyton are high. Dr Pelidis said this may mean nothing but it may also imply that we are carriers of DBA. I'm not sure yet if they'll look into tat further.
Hopefully next time I blog it will be to say one of the children is a match!!!!!!!!! Fingers crossed anyway.
Tuesday 16 November 2010
Dietician
I took Reagan back to the dietician, Sarah foster, yesterday.
Reagan has improved with her eating over the last wk or two and her weight is following it's own little curve.
So Sarah wasalittle less worried! She gave me some milk to give to Reagan instead of normal formula. Although she nexts to never has formula it's better than normal stuff, plus if I can ever get her to eat cereal I can use it.
She was going to suggest a speech and language therapist but decided that because she has improved that it's not necessary.
We go back to see her at the end of Jan, to be honest i don't feel there is any real gain from going to see her, other than the milk. She doesn't suggest anything that we're not already doing.
Reagan now has another tummy bug, lovingly given to her from peyton. She had diarreah all day yesterday and again through the night. Causing 3 outfits and a set of bedding to be added to the washing!
Then she woke this morning with a temp of 38.3. I'm taking her to the drs today, just incase! I need to get this milk on prescription anyway so......
I ails had the letter through from dr pelidis yesterday, I'll blog that separately though, I'm still researching what it says!!!
Reagan has improved with her eating over the last wk or two and her weight is following it's own little curve.
So Sarah wasalittle less worried! She gave me some milk to give to Reagan instead of normal formula. Although she nexts to never has formula it's better than normal stuff, plus if I can ever get her to eat cereal I can use it.
She was going to suggest a speech and language therapist but decided that because she has improved that it's not necessary.
We go back to see her at the end of Jan, to be honest i don't feel there is any real gain from going to see her, other than the milk. She doesn't suggest anything that we're not already doing.
Reagan now has another tummy bug, lovingly given to her from peyton. She had diarreah all day yesterday and again through the night. Causing 3 outfits and a set of bedding to be added to the washing!
Then she woke this morning with a temp of 38.3. I'm taking her to the drs today, just incase! I need to get this milk on prescription anyway so......
I ails had the letter through from dr pelidis yesterday, I'll blog that separately though, I'm still researching what it says!!!
Friday 12 November 2010
Physio
Reagan had her first physio today.
We spent a lot of time going over her problems and condition etc before we got on the floor and got her to show off her skills!!!
She's given me some ideas to help strengthen her and increase her abilities.
She plotted her on the percentile and she was way off!! She's about where a 3-4mth old should be except that she can sit.
We'll see her again in a month, she'll come to our house next time.
We spent a lot of time going over her problems and condition etc before we got on the floor and got her to show off her skills!!!
She's given me some ideas to help strengthen her and increase her abilities.
She plotted her on the percentile and she was way off!! She's about where a 3-4mth old should be except that she can sit.
We'll see her again in a month, she'll come to our house next time.
Kidney scan and clinic appt
We went for reagans kidney scan at st georges on tue 9th nov.
We waited flaming ages to be seen and they were very thorough!
He asked me to sit on the end of the bed to amuse her because babies/children tend to get upset.
Reagan didn't she just laid there as if this was something she has done several times a day! It was funny, he really didn't expect her to be so still and calm. Her hands were flopped above her head and everything.
Anyway he said her kidneys are lovely. The right shape, both the same size, in the right Place etc. A little small but thats to be expected because she's small!
So good news there!
We had a couple of hrs to spare so went into Wimbledon for lunch and returned to the hospital at 3pm for her clinic appt.
She weighed in at 13lb14oz, so a 3oz gain in 3 wks, not bad. Her length is 63.8cm, so she's stretched too!!!
No results as yet about the bone marrow match but all the blood was good, all our HB levels were good, especially Alex, how was up at over 15!!!
also our blood celll size was good. DBA gives you an enlarged blood cell.
The full results are back from Portugal, although she doesn't have any of the mutated genes they were looking for she does have something with another gene. I cant remember the word/s she used to describe it but when the letter comes through and it's down in black and white it always makes more sense so I'll update again when that arrives. She did say that they mitt be interested in studying he because of that and so long as it wasn't too obtrusive fore reragan she was happy for that to happen, as are we- anything to help the research.
Other than that all was well, we decided not to test her blood and to give her another couple of wks, its been 3 wks since her last transfusion.
We'll go back and see her in Jan!
Today shes. Having her first physio appt, I'm currently waiting to be called in! So again I'll fill you in as soon as i can.
I'm off to donate my first lot of blood today! I've printed off a picture of Reagan having a blood transfusion to take with me. I'm going to ask if i can leave ir with them for other donars to see how important it is to do what they are doing!
Other than that, she doing fine. Her eating is getting ever so slightly better but her sleeping isn't!! *big sigh* last night she was up loads and today I'm glad it's Friday......because I'm bloody knackered!!!
Ttfn
Xx
We waited flaming ages to be seen and they were very thorough!
He asked me to sit on the end of the bed to amuse her because babies/children tend to get upset.
Reagan didn't she just laid there as if this was something she has done several times a day! It was funny, he really didn't expect her to be so still and calm. Her hands were flopped above her head and everything.
Anyway he said her kidneys are lovely. The right shape, both the same size, in the right Place etc. A little small but thats to be expected because she's small!
So good news there!
We had a couple of hrs to spare so went into Wimbledon for lunch and returned to the hospital at 3pm for her clinic appt.
She weighed in at 13lb14oz, so a 3oz gain in 3 wks, not bad. Her length is 63.8cm, so she's stretched too!!!
No results as yet about the bone marrow match but all the blood was good, all our HB levels were good, especially Alex, how was up at over 15!!!
also our blood celll size was good. DBA gives you an enlarged blood cell.
The full results are back from Portugal, although she doesn't have any of the mutated genes they were looking for she does have something with another gene. I cant remember the word/s she used to describe it but when the letter comes through and it's down in black and white it always makes more sense so I'll update again when that arrives. She did say that they mitt be interested in studying he because of that and so long as it wasn't too obtrusive fore reragan she was happy for that to happen, as are we- anything to help the research.
Other than that all was well, we decided not to test her blood and to give her another couple of wks, its been 3 wks since her last transfusion.
We'll go back and see her in Jan!
Today shes. Having her first physio appt, I'm currently waiting to be called in! So again I'll fill you in as soon as i can.
I'm off to donate my first lot of blood today! I've printed off a picture of Reagan having a blood transfusion to take with me. I'm going to ask if i can leave ir with them for other donars to see how important it is to do what they are doing!
Other than that, she doing fine. Her eating is getting ever so slightly better but her sleeping isn't!! *big sigh* last night she was up loads and today I'm glad it's Friday......because I'm bloody knackered!!!
Ttfn
Xx
Thursday 4 November 2010
Sleep and stuff!
I think Reagan may had had stomach bug. We've had some 'experiences' in the nappy dept over the last wk and a half. Her sleeping deteriorated again.
She sleeps from around 8pm -11pm but after that.........
Last night was the all time worst I think. Even though she's always woken a lot she's always been easy to pacify. Over the last few nights she's gradually got worse. She'll only sleep if I feed her, a cuddle is not good enough. When I put her in her crib she wakes immediately!! Plus she now has a thing about touching/fiddling with my face so she does that in her sleep and fidgets and twitches. She just isn't settling properly!!
She still won't eat a great deal, I bought an avocado the other day, she had 3 mouth fulls, which are miniscule!3 seems to be her limit for everything except yogurt. She wont even eat banana any more. She did have an entire round rich tea on Monday though which amazed me!
I've bought a book called 'the match' all about a family who's little girl has dba. They have a pgd baby so their daughter can have a bone marrow transplant. It's very educational for me! I have to read each paragraph about 3-4 times to make sure I understand what it said. It's driven home just how shitty and huge all this dba stuff is though. Its very scary.......bloody frightening.
Send Reagan some sleepy dust for tonight please, hopefully Alex and I will get some sleep too!!!
She sleeps from around 8pm -11pm but after that.........
Last night was the all time worst I think. Even though she's always woken a lot she's always been easy to pacify. Over the last few nights she's gradually got worse. She'll only sleep if I feed her, a cuddle is not good enough. When I put her in her crib she wakes immediately!! Plus she now has a thing about touching/fiddling with my face so she does that in her sleep and fidgets and twitches. She just isn't settling properly!!
She still won't eat a great deal, I bought an avocado the other day, she had 3 mouth fulls, which are miniscule!3 seems to be her limit for everything except yogurt. She wont even eat banana any more. She did have an entire round rich tea on Monday though which amazed me!
I've bought a book called 'the match' all about a family who's little girl has dba. They have a pgd baby so their daughter can have a bone marrow transplant. It's very educational for me! I have to read each paragraph about 3-4 times to make sure I understand what it said. It's driven home just how shitty and huge all this dba stuff is though. Its very scary.......bloody frightening.
Send Reagan some sleepy dust for tonight please, hopefully Alex and I will get some sleep too!!!
Friday 29 October 2010
Blood tissue matching part 2
Sorry had to put this on a separate post because i can't continue where i left off from my iPad!
Anyway Peyton was stronger than they thought she would be, the 1st then the 2nd attempt failed. So it was decided that we would leave her be for a while, do me and Alex and get another nurse to have another go at Peyton.
When i went to get Peyton for the last attempt she quite flatly said "No!" any way i managed to convince her without the sweets. She walked round to the room but when she saw the chair she did an about turn and be cane to refuse again! She reminded me of the lion from the wizard of oz!!
Again she screamed but it was pretty quick. She got loads of stickers and had a star sticker on one of her hands like a plaster. On the way home she asked me to take it off, when i went to do it she snatched it away saying "No, just leab it!!" she did this dozens of times before she managed to pluck up the courage to take it off just before bed!!
He results will be about 2 wks, if anyone is a match then the test has to be repeated to be doubly sure. Lets hope its not peyotn eh?
Reagan has been sleeping a little better. The nit before last was pretty amazing. She went down at about 9pm woke at 12.30. I brought he into bed to feed her and woke at 2.38am and put her back to her crib. Then she woke at 6.30am had another feed and went back to sleep for a little while. So that was a stretch of 4 hrs in her own bed! She hasn't done that in months and months.
Last night was back to about every 2 hrs, when she's up more than 3 times i loose track of the times but i think it was about 4 times last night.
We're off to Devon to stay with the inlaws now, so fingers crossed she sleeps well there!!!
Anyway Peyton was stronger than they thought she would be, the 1st then the 2nd attempt failed. So it was decided that we would leave her be for a while, do me and Alex and get another nurse to have another go at Peyton.
When i went to get Peyton for the last attempt she quite flatly said "No!" any way i managed to convince her without the sweets. She walked round to the room but when she saw the chair she did an about turn and be cane to refuse again! She reminded me of the lion from the wizard of oz!!
Again she screamed but it was pretty quick. She got loads of stickers and had a star sticker on one of her hands like a plaster. On the way home she asked me to take it off, when i went to do it she snatched it away saying "No, just leab it!!" she did this dozens of times before she managed to pluck up the courage to take it off just before bed!!
He results will be about 2 wks, if anyone is a match then the test has to be repeated to be doubly sure. Lets hope its not peyotn eh?
Reagan has been sleeping a little better. The nit before last was pretty amazing. She went down at about 9pm woke at 12.30. I brought he into bed to feed her and woke at 2.38am and put her back to her crib. Then she woke at 6.30am had another feed and went back to sleep for a little while. So that was a stretch of 4 hrs in her own bed! She hasn't done that in months and months.
Last night was back to about every 2 hrs, when she's up more than 3 times i loose track of the times but i think it was about 4 times last night.
We're off to Devon to stay with the inlaws now, so fingers crossed she sleeps well there!!!
Blood tissue matching tests
We all had a lovely family trip yesterday to st Georges hospital for blood tests!
It's to see if any of our tissue matches Reagans so we could potentially be a bone marrow donor.
I've been bowled over by the amount of people that have come forward to offer to be tested, and that's without asking anyone!
Sadly though the success rate is not good for DBA unless it's 100% match, which can only come from her siblings. We're not quite sure why they tested me and Alex........to much info to take in! But i was happy to do so just to show solidarity for the kids.
We go there about 2pm and all the kids (except Reagan) got magic cream put on their hands.
Then i sat without them while they filled out the forms. 2 forms each, each needed names, DOBs address, reagans diagnosis, reagans names and DOB, DRs name and relationship.......... So it took some time to do. We ended up hijacking a bed to keep it all on!
DR Pelidis came up too and was there through out which i was impressed with as I'm sure shes a really busy lady. She has to sign all the forms too.
Kennedy went first, I took Peyton in too so she would feel happier about her turn. Kennedy ended up having it done from her arm so the cream was not necessary after all! She didn't even flinch.
Then Kaylum, then Cade. Poor Cade, the first attempt didn't work so she had to have another go in the other arm. He smiled through out the whole thing but his little feet were fidgeting so i think it was more a nervous smile. But he made no fuss what so ever, even though the lady gave him permission to shout!!!
Peyton chose stickers for them all to have and was perfectly happy to climb up and have her turn..........until another nurse came in and held her arm still! She was stron
It's to see if any of our tissue matches Reagans so we could potentially be a bone marrow donor.
I've been bowled over by the amount of people that have come forward to offer to be tested, and that's without asking anyone!
Sadly though the success rate is not good for DBA unless it's 100% match, which can only come from her siblings. We're not quite sure why they tested me and Alex........to much info to take in! But i was happy to do so just to show solidarity for the kids.
We go there about 2pm and all the kids (except Reagan) got magic cream put on their hands.
Then i sat without them while they filled out the forms. 2 forms each, each needed names, DOBs address, reagans diagnosis, reagans names and DOB, DRs name and relationship.......... So it took some time to do. We ended up hijacking a bed to keep it all on!
DR Pelidis came up too and was there through out which i was impressed with as I'm sure shes a really busy lady. She has to sign all the forms too.
Kennedy went first, I took Peyton in too so she would feel happier about her turn. Kennedy ended up having it done from her arm so the cream was not necessary after all! She didn't even flinch.
Then Kaylum, then Cade. Poor Cade, the first attempt didn't work so she had to have another go in the other arm. He smiled through out the whole thing but his little feet were fidgeting so i think it was more a nervous smile. But he made no fuss what so ever, even though the lady gave him permission to shout!!!
Peyton chose stickers for them all to have and was perfectly happy to climb up and have her turn..........until another nurse came in and held her arm still! She was stron
Thursday 21 October 2010
Blood transfusion #3
We arrived at Frimley park hospital at around 9.45am,they put some amatop cream on her hands and feet to numb the skin ready to be canulated.
They took her in to take some blood and put the canula in at about 10.45am, I think it was 2 student drs, but not too sure. Anyway they failed to get it in her hand but had clearly got the vein because when he removed it to give up and try else where it really bled. Someone else had a go and eventually got it in her foot.
Normally she'll lie on the bed absolutely no bother at all and obviously she gets upset if it hurts but today she immediately looked unsure about it all and started crying before they even started :0(
And just like last time when they tried her foot she seemed to still be able feel it despite the cream, so she ended up getting Really upset, its so horrid to see, especially when you cant just scoop her up and cuddle her!
In true Reagan style though she got over it very quickly bless her.
So then we went home and waited for them to call when the blood was each.
They called at 1.45pm and we arrived at the hospital about 2.30pm.
They flushed the canula to check it was working, as they always do, and it was fine but she didn't like it and it made her cry again. It's flushed with salt water so it feels cold going through the vein, she obviously didn't like how it felt!!
So they started the blood but she didn't like it either, then it began to play up a little and was saying it was blocked and beeping etc. Every time the nurse held reagans foot it stopped!!! Eventually it sorted itself out but Reagan still wasn't very happy about it. She was getting tired so I fed her to calm her down and eventually she fell asleep. They have to do regular obs on her (blood pressure and temp, incase she's having a reaction to the blood) so she was woken up by them doing that!!!! Ggggrrr!!!!!
I think either the vein in her foot is smaller or mire sensitive or she's just mire aware now coz she really didn't like it. She kept lifting her foot and was pulling, or trying to pull the tube.
By 6.30pm we were done, she'd had 90mls of red blood cells and was the pinkest I'd ever seen her!!!
You remember she had bloods done yesterday and her hb was 7.9 and her reticulocytes were just 1?? Today her hb was 7.5!! That's a fast drop in less than 24 hrs.
So let's see if she gets a good nights sleep tonight. She went down at about 7.30-7.45 and woke at 10 but is already up again now!!! Currently feeding while I type 1 handed!!
Going to put her back to bed now so goodnight from me and goodnight from pinked baby Reagan!!!
They took her in to take some blood and put the canula in at about 10.45am, I think it was 2 student drs, but not too sure. Anyway they failed to get it in her hand but had clearly got the vein because when he removed it to give up and try else where it really bled. Someone else had a go and eventually got it in her foot.
Normally she'll lie on the bed absolutely no bother at all and obviously she gets upset if it hurts but today she immediately looked unsure about it all and started crying before they even started :0(
And just like last time when they tried her foot she seemed to still be able feel it despite the cream, so she ended up getting Really upset, its so horrid to see, especially when you cant just scoop her up and cuddle her!
In true Reagan style though she got over it very quickly bless her.
So then we went home and waited for them to call when the blood was each.
They called at 1.45pm and we arrived at the hospital about 2.30pm.
They flushed the canula to check it was working, as they always do, and it was fine but she didn't like it and it made her cry again. It's flushed with salt water so it feels cold going through the vein, she obviously didn't like how it felt!!
So they started the blood but she didn't like it either, then it began to play up a little and was saying it was blocked and beeping etc. Every time the nurse held reagans foot it stopped!!! Eventually it sorted itself out but Reagan still wasn't very happy about it. She was getting tired so I fed her to calm her down and eventually she fell asleep. They have to do regular obs on her (blood pressure and temp, incase she's having a reaction to the blood) so she was woken up by them doing that!!!! Ggggrrr!!!!!
I think either the vein in her foot is smaller or mire sensitive or she's just mire aware now coz she really didn't like it. She kept lifting her foot and was pulling, or trying to pull the tube.
By 6.30pm we were done, she'd had 90mls of red blood cells and was the pinkest I'd ever seen her!!!
You remember she had bloods done yesterday and her hb was 7.9 and her reticulocytes were just 1?? Today her hb was 7.5!! That's a fast drop in less than 24 hrs.
So let's see if she gets a good nights sleep tonight. She went down at about 7.30-7.45 and woke at 10 but is already up again now!!! Currently feeding while I type 1 handed!!
Going to put her back to bed now so goodnight from me and goodnight from pinked baby Reagan!!!
Wednesday 20 October 2010
Off to st Georges again
Reagan was 9mths old on Friday (5 days ago) where that time has gone is anybodys guess!!
So we went to see Dr Pelidis again today because after i saw dr Salma last tue I contacted her to tell her the results of the bloods and to express my concern that Reagan has spent such a long time with a low hb.
Today her hb was 7.6 so slowly dropping (remember it should be at least 12) and her retic count is just 1!!!! It was 78 last wk and in someone with a normal hb it should be about 100, if you have a low hb the. It should be higher!! It's what gives you an indication of how many blood cells are going to be made.
Dr Pelidis said that we've pretty much exhausted everything except DBA, and so she thouhgt it a good idea to test us and the kids to see if we woukd be a match for Reagans bone marrow. This can be done with a blood test. So we're all off to st Georges next wed (which is half term luckily) for a family blood test! The ward really will be full that day huh?
This isn't to say that we have made the decision to give Reagan a bone marrow transplant, it's just so that we know if anyone is a match and weather or not it would be possible.
Of course we have no idea how she will respond to the steroids yet, which she I'll probably go on in around 3-4 mths. It usually takes about a mth for any response and then some time to see if the dose can be reduced to a safe level, so the trial normally lasts for 3 mths before it is decided if she is responding.
I again said that i was concerned that she was happy for reagans hb to go so low and she said that they have allowed it to for now while they are investigating her etc to see what her body would do and to see if it would go back up. But now that we pretty much have her diagnosed she will just go on regular transfusions, probably 1 a month to begin with.
About 3 mins after we walked back throughout the door from the hospital dr Pelidis called with the blood results and said she that she'd call Frimley for the to call me and arrange a transfusion for her.
They then called a few mins later and asked me to take her in tomorrow morning. I'll go straight from dropping the kids at school, they'll take blood for matching and put her canula in, we'll then come home for a few hours while they get the blood etc. Once they have it all sorted we'll go back in for the transfusion.
I'm so relieved that she's getting it, it seems so unfair that she should struggle more than necessary.
I'm also hoping that she will be able to sleep abit more soundly too! At the moment she is sleeping in her crib for some of the night but for bouts of 20mins - 1.5 hrs! Which is bloody knackering! It's worse than when she wasn't leaving our bed!!
So I'll fill you in on how the transfusion goes tomorrow, with a bit of luck it won't be a repeat of last time!!
So we went to see Dr Pelidis again today because after i saw dr Salma last tue I contacted her to tell her the results of the bloods and to express my concern that Reagan has spent such a long time with a low hb.
Today her hb was 7.6 so slowly dropping (remember it should be at least 12) and her retic count is just 1!!!! It was 78 last wk and in someone with a normal hb it should be about 100, if you have a low hb the. It should be higher!! It's what gives you an indication of how many blood cells are going to be made.
Dr Pelidis said that we've pretty much exhausted everything except DBA, and so she thouhgt it a good idea to test us and the kids to see if we woukd be a match for Reagans bone marrow. This can be done with a blood test. So we're all off to st Georges next wed (which is half term luckily) for a family blood test! The ward really will be full that day huh?
This isn't to say that we have made the decision to give Reagan a bone marrow transplant, it's just so that we know if anyone is a match and weather or not it would be possible.
Of course we have no idea how she will respond to the steroids yet, which she I'll probably go on in around 3-4 mths. It usually takes about a mth for any response and then some time to see if the dose can be reduced to a safe level, so the trial normally lasts for 3 mths before it is decided if she is responding.
I again said that i was concerned that she was happy for reagans hb to go so low and she said that they have allowed it to for now while they are investigating her etc to see what her body would do and to see if it would go back up. But now that we pretty much have her diagnosed she will just go on regular transfusions, probably 1 a month to begin with.
About 3 mins after we walked back throughout the door from the hospital dr Pelidis called with the blood results and said she that she'd call Frimley for the to call me and arrange a transfusion for her.
They then called a few mins later and asked me to take her in tomorrow morning. I'll go straight from dropping the kids at school, they'll take blood for matching and put her canula in, we'll then come home for a few hours while they get the blood etc. Once they have it all sorted we'll go back in for the transfusion.
I'm so relieved that she's getting it, it seems so unfair that she should struggle more than necessary.
I'm also hoping that she will be able to sleep abit more soundly too! At the moment she is sleeping in her crib for some of the night but for bouts of 20mins - 1.5 hrs! Which is bloody knackering! It's worse than when she wasn't leaving our bed!!
So I'll fill you in on how the transfusion goes tomorrow, with a bit of luck it won't be a repeat of last time!!
Friday 15 October 2010
Paed appt
We had an appt on Tue this week to see Dr Salma, we haven't seen her since mid July.
It was just for to catch up and check Reagan over again.
She was weighed and measured, her weight is beginning to slip down again, she was 13lb8oz and 65cm long.
Dr Salma said she thought Reagan looked better than she remembered seeing her before (not so pale) I disagreed though!!!
She referred her for physio because her upper body is still pretty weak, this is probably. because her body has to work harder than most babies her age and so development get over looked!!
She was also referred for some kind of learning support to help stimulate her. Even though her brain isn't effected because of everything she will become tired and concentrating will be difficult so she'll need some extra help.
Her blood was taken and her HB was 7.9 and her retic count was 78. So it's dropped a little but not too much.
I spoke to the parent support for DBA, and again received so much info, it's so great to have her to talk to.
She said that they never let her daughters HB go below 9!!! So where as i thought mY e Reagan wasn't quite as severe as other sufferers, if she was transfused when she she got down to 9 it would be done probably as often as every 6 wkish.
She told me of other signs/symptoms to look for that tell us she isn't tolerating such a low HB, and said it seems odd to let her go so low when surely little and often is kinder surely. At the moment she is being transfused then being allowed to go right down to then be transfused right back up. It's all peaks and troughs rather than more evened out.
I called Dr Pilidis to talk to her about it and we're going to see her on Wed morning. So I'll let you know the outcome.
It was just for to catch up and check Reagan over again.
She was weighed and measured, her weight is beginning to slip down again, she was 13lb8oz and 65cm long.
Dr Salma said she thought Reagan looked better than she remembered seeing her before (not so pale) I disagreed though!!!
She referred her for physio because her upper body is still pretty weak, this is probably. because her body has to work harder than most babies her age and so development get over looked!!
She was also referred for some kind of learning support to help stimulate her. Even though her brain isn't effected because of everything she will become tired and concentrating will be difficult so she'll need some extra help.
Her blood was taken and her HB was 7.9 and her retic count was 78. So it's dropped a little but not too much.
I spoke to the parent support for DBA, and again received so much info, it's so great to have her to talk to.
She said that they never let her daughters HB go below 9!!! So where as i thought mY e Reagan wasn't quite as severe as other sufferers, if she was transfused when she she got down to 9 it would be done probably as often as every 6 wkish.
She told me of other signs/symptoms to look for that tell us she isn't tolerating such a low HB, and said it seems odd to let her go so low when surely little and often is kinder surely. At the moment she is being transfused then being allowed to go right down to then be transfused right back up. It's all peaks and troughs rather than more evened out.
I called Dr Pilidis to talk to her about it and we're going to see her on Wed morning. So I'll let you know the outcome.
Friday 8 October 2010
ECG and some results
Reagan will be 9 mths in a wks time, she still refuses to eat solid food almost completely, although we had a few breakthroughs this wk.
On Tuesday she ate an entire yogurt (albeit it a small one!!!) on Wednesday she ate 1/3 of a fish finger(healthy I know) AND a whole yogurt and last night she had home made carbonara minus the bacon and a whole yogurt again. So small steps.......
She still wakes several times a night, or sometimes doesn't even make it to her own bed!
Today I had a call out of the blue to take her FCC for an ECG! Which was odd I thought. Turns out that when her scan was done a. Few wks ago an ECG was meant to have been arranged too but never was. And the cardiologist from southampton was at Frimley so they decided to call her in and if it looked bad they could pass it to him for his opinion. It was 'satisfactory' though so that was good.
Then later today i got a call from dr plilidis saying that they have looked at the gene RPS19 to see if it is mutated and thus confirming DBA, however, its fine. This is the most common gene mutation that effects around 25-30% of DBA sufferers. Now they look at the the genes. So we need to wait some more!
Also the report from her hand xray says that her thumbs are normal. She has a copy of her chest xray now and is waiting for that to be looked at.
Over and out!!
On Tuesday she ate an entire yogurt (albeit it a small one!!!) on Wednesday she ate 1/3 of a fish finger(healthy I know) AND a whole yogurt and last night she had home made carbonara minus the bacon and a whole yogurt again. So small steps.......
She still wakes several times a night, or sometimes doesn't even make it to her own bed!
Today I had a call out of the blue to take her FCC for an ECG! Which was odd I thought. Turns out that when her scan was done a. Few wks ago an ECG was meant to have been arranged too but never was. And the cardiologist from southampton was at Frimley so they decided to call her in and if it looked bad they could pass it to him for his opinion. It was 'satisfactory' though so that was good.
Then later today i got a call from dr plilidis saying that they have looked at the gene RPS19 to see if it is mutated and thus confirming DBA, however, its fine. This is the most common gene mutation that effects around 25-30% of DBA sufferers. Now they look at the the genes. So we need to wait some more!
Also the report from her hand xray says that her thumbs are normal. She has a copy of her chest xray now and is waiting for that to be looked at.
Over and out!!
Friday 24 September 2010
Good news for a change!
35+5wks 13lb
I know I know, it doesn't start off too great because that shows she's lost 3oz in just over a wk, however, she was clothed (albeit very lightly) last wk. Plus you have to allow a little change from one set of scales to another aaaaaaand it was such a big gain that it's not so bad but most of all she's still on the centime!!
Spoke to Dr Pilidis today about Weds bloods and her HB is.........8.3!!!! Which is the same as last wk (well if you want to be picky it's actually .2 higher!!) whoo hoo
I forgot to say we've had the report through from her heart scan too, its as follows.
"she has got a very easily heard heart murmur which I clinically feel is innocent but on echocardiogram, she has got a foolish looking LV with normal measurement but it looked slightly dilated with a probably functionally bicuspid aortic valve with a normal gradient"
I'll post again when we have the report from DrPlidis' visit. Which will show the full blood report too.
Ttfn
I know I know, it doesn't start off too great because that shows she's lost 3oz in just over a wk, however, she was clothed (albeit very lightly) last wk. Plus you have to allow a little change from one set of scales to another aaaaaaand it was such a big gain that it's not so bad but most of all she's still on the centime!!
Spoke to Dr Pilidis today about Weds bloods and her HB is.........8.3!!!! Which is the same as last wk (well if you want to be picky it's actually .2 higher!!) whoo hoo
I forgot to say we've had the report through from her heart scan too, its as follows.
"she has got a very easily heard heart murmur which I clinically feel is innocent but on echocardiogram, she has got a foolish looking LV with normal measurement but it looked slightly dilated with a probably functionally bicuspid aortic valve with a normal gradient"
I'll post again when we have the report from DrPlidis' visit. Which will show the full blood report too.
Ttfn
Wednesday 22 September 2010
D-day (diagnosis day)
Had appt with Dr Pilidis today. She went through all the results so far and still didn't diagnose her.
I asked if she felt that with out the chromosome test did she not feel she had enough symptoms to diagnose DBA and she said she did. It's just that Reagan seems to manage to hold onto her blood pretty well, her MVC is not majorly high although she did say that this is difficult to judge in little ones.
So while she has all the diagnostic symptoms they're not severe.
We talked about treatment and she said she would start her one steroids soonish, we questioned whet it would bebetter to go straight to transfusions but the steroids could possibly send Reagan into remission, so it's a good idea to try them.
She had another blood test which she once again amazed me with. She had no cream or any kind of numbing stuff and she didn't even murmur!! What a trooper, she's soooooooo brave.
She also had an x-Ray on her hands to see if she has any deformity of her thumbs, that was fun! Ever tried getting an 8 mth old hold their hands completely still. So we'll have to wait and see if its ok.
I also asked if she could look at the x-Ray that they took when she was first born and had pneumonia. Because another symptom is a fused vertebrae at the top of the neck that gives the person a turners syndrome type neck. Which is an excess of skin at the back of the neck. Rememeber I told yoj Reagan has this? So she is gong to request the xray from Frimley because if she has it then it will show on there and it saves getting another xray and exposing her again.
Lastly she requested a scan on her abdomen, sometimes they have mis shaped kidneys. That won't be done till Nov though, when we Go back for our next clinic appt.
So the long and short of it is that yes she has DBA, at ten moment it seemed mild but she said we just have to see how she holds her blood over the next couple of months.
I asked if she felt that with out the chromosome test did she not feel she had enough symptoms to diagnose DBA and she said she did. It's just that Reagan seems to manage to hold onto her blood pretty well, her MVC is not majorly high although she did say that this is difficult to judge in little ones.
So while she has all the diagnostic symptoms they're not severe.
We talked about treatment and she said she would start her one steroids soonish, we questioned whet it would bebetter to go straight to transfusions but the steroids could possibly send Reagan into remission, so it's a good idea to try them.
She had another blood test which she once again amazed me with. She had no cream or any kind of numbing stuff and she didn't even murmur!! What a trooper, she's soooooooo brave.
She also had an x-Ray on her hands to see if she has any deformity of her thumbs, that was fun! Ever tried getting an 8 mth old hold their hands completely still. So we'll have to wait and see if its ok.
I also asked if she could look at the x-Ray that they took when she was first born and had pneumonia. Because another symptom is a fused vertebrae at the top of the neck that gives the person a turners syndrome type neck. Which is an excess of skin at the back of the neck. Rememeber I told yoj Reagan has this? So she is gong to request the xray from Frimley because if she has it then it will show on there and it saves getting another xray and exposing her again.
Lastly she requested a scan on her abdomen, sometimes they have mis shaped kidneys. That won't be done till Nov though, when we Go back for our next clinic appt.
So the long and short of it is that yes she has DBA, at ten moment it seemed mild but she said we just have to see how she holds her blood over the next couple of months.
Saturday 18 September 2010
Researching
Ive been looking on the internet today to help wm remember what questions i have for Dr Pilidis next Wed.
I found a case study on a DBA sufferer it listed 6 diagnostic Criteria for DBA, one of them I don't know what it is but Reagan has he other 5.
I know I shouldn't jump to conclusions and i should wait for the the full reslults to come back but this is like a coping mechanism for me! Maybe I'm kind of preparing myself? And if it's not DBA it doesn't look like we will find out what it is any way!
I'm the kind of peson that needs to know everything, i don't like grey areas!
Anyway this case study also said that some sufferers also have a neck that resembles that of a Turners syndrome sufferer. So i googled it and it's like Reagans, do you remember i told you she was born with baggy skin at the back of her neck? Well turners syndrome necks are worse but it's very similar!
I found a case study on a DBA sufferer it listed 6 diagnostic Criteria for DBA, one of them I don't know what it is but Reagan has he other 5.
I know I shouldn't jump to conclusions and i should wait for the the full reslults to come back but this is like a coping mechanism for me! Maybe I'm kind of preparing myself? And if it's not DBA it doesn't look like we will find out what it is any way!
I'm the kind of peson that needs to know everything, i don't like grey areas!
Anyway this case study also said that some sufferers also have a neck that resembles that of a Turners syndrome sufferer. So i googled it and it's like Reagans, do you remember i told you she was born with baggy skin at the back of her neck? Well turners syndrome necks are worse but it's very similar!
Thursday 16 September 2010
More results
Wed 15th Sept 2010
Dr Pilidis rang today to see if id got the blood test results today.
And also to tell me that a few more results had come back. Apparently they had tested for Fanconi anemia too. Which is another blood disorder but it's hereditary. Any way it was negative.
I asked if they had the results back for the parvovirus and it was negative too.
Which now means that Reagan either has DBA or they have no idea what it is and probably won't know!
Just when i was starting to think it could be a virus after all.
We're going to see her next Wed so we need to write down all the questions we now have running around our heads.
So here we are 8 mths into Reagans life and finally getting some answers albeit not the ones we wanted.
I'm now up to date and can update as and when things happen from here onwards.
Dr Pilidis rang today to see if id got the blood test results today.
And also to tell me that a few more results had come back. Apparently they had tested for Fanconi anemia too. Which is another blood disorder but it's hereditary. Any way it was negative.
I asked if they had the results back for the parvovirus and it was negative too.
Which now means that Reagan either has DBA or they have no idea what it is and probably won't know!
Just when i was starting to think it could be a virus after all.
We're going to see her next Wed so we need to write down all the questions we now have running around our heads.
So here we are 8 mths into Reagans life and finally getting some answers albeit not the ones we wanted.
I'm now up to date and can update as and when things happen from here onwards.
Blood test
Tuesday 14th Sept 2010
I got a call from FCC asking me to bring Reagan in today for a blood test!!
So we went along at 2pm and discovered that Dr Pilidis had called first thing and gave them a mouthful for not not getting her in earlier!!
They said the results were being faxed straight over to Dr Pilidis. I asked them to contact me too, even if she didn't need a transfusion.
I got a call about 5.30pm to say that her HB was 8.1 and not low enough to need a transfusion. Which is great but it is still dropping about 1 per wk!
I got a call from FCC asking me to bring Reagan in today for a blood test!!
So we went along at 2pm and discovered that Dr Pilidis had called first thing and gave them a mouthful for not not getting her in earlier!!
They said the results were being faxed straight over to Dr Pilidis. I asked them to contact me too, even if she didn't need a transfusion.
I got a call about 5.30pm to say that her HB was 8.1 and not low enough to need a transfusion. Which is great but it is still dropping about 1 per wk!
Dietician
Monday 13th Sept 34+3wks 13.3Lb
I didn't mention that I'd taken her to see a dietician back in July. I don't remember the date.
Even though I'm trying with solid food Reagan doesn't agree that she should have it!!
I told this to the dietician and she said we were doing all the right things she had no other advice to offer and keep gong as we are.
She said that normally she would be getting concerned but Reagan has had a huge weight gain and is therefore healthier than the last time she saw her.
So we'll just plough on!!!
I rang FCC today to get a blood test bkd. I haven't heard anymore from Dr Pilidis but we both felt that was still pale. The next available appt is on Fri.
I called St Georges and left a message for Dr Pilidis to see if the results dorm the bone were back yet.
She called back at 6pm. There were no more results but she wanted Reagan to have a blood test sooner than Friday so I left it with her to sort out.
I didn't mention that I'd taken her to see a dietician back in July. I don't remember the date.
Even though I'm trying with solid food Reagan doesn't agree that she should have it!!
I told this to the dietician and she said we were doing all the right things she had no other advice to offer and keep gong as we are.
She said that normally she would be getting concerned but Reagan has had a huge weight gain and is therefore healthier than the last time she saw her.
So we'll just plough on!!!
I rang FCC today to get a blood test bkd. I haven't heard anymore from Dr Pilidis but we both felt that was still pale. The next available appt is on Fri.
I called St Georges and left a message for Dr Pilidis to see if the results dorm the bone were back yet.
She called back at 6pm. There were no more results but she wanted Reagan to have a blood test sooner than Friday so I left it with her to sort out.
Cardiac follow up
Friday 10th Sept 2010
I can't believe it's been 4 months since she had her first heart scan! But it is and now she's having her follow up scan.
Col Morthey, the consultant who did the scan, asked for an update on what had happened since he last saw her.
He said he would probably refer her to a cardiologist to be on the safe side but he would see how things were.
I think the long and short of it was that the original leaky valve was still the same but the other had corrected. The left side of her heart looked slighty larger but all the measurements etc were fine.
So he decided to reffer her to a cardiologist in Southampton. He said it wouldn't be urgent and the waiting list is about 2-3mths. He felt that the cardiologist would confirm what he had said.
While I was there i asked to book her in for a blood test but they said they couldn't with out a form.
So I went home and rang the haematology dept at St Georges to see about getting one. They said i could get one from my GP or failing that they would pst one to me!
So i rang Dr Salma only find she is away till next Thurs. So finally i rang our GP and the secretary put a note on her screen. A couple of hrs later they rang back to say therre was a form there waiting for me. But it was now 5pm so it would have to wait till Mon.
I can't believe it's been 4 months since she had her first heart scan! But it is and now she's having her follow up scan.
Col Morthey, the consultant who did the scan, asked for an update on what had happened since he last saw her.
He said he would probably refer her to a cardiologist to be on the safe side but he would see how things were.
I think the long and short of it was that the original leaky valve was still the same but the other had corrected. The left side of her heart looked slighty larger but all the measurements etc were fine.
So he decided to reffer her to a cardiologist in Southampton. He said it wouldn't be urgent and the waiting list is about 2-3mths. He felt that the cardiologist would confirm what he had said.
While I was there i asked to book her in for a blood test but they said they couldn't with out a form.
So I went home and rang the haematology dept at St Georges to see about getting one. They said i could get one from my GP or failing that they would pst one to me!
So i rang Dr Salma only find she is away till next Thurs. So finally i rang our GP and the secretary put a note on her screen. A couple of hrs later they rang back to say therre was a form there waiting for me. But it was now 5pm so it would have to wait till Mon.
Wednesday 15 September 2010
1st set of results
Wed 8th Sept 2010
I took her dressing off today, it had to stay on for 48hrs. There is no bruising just a hole, it's about the size of a little drinking straw. Ouch!
I spoke to Dr Pilidis to get the results of the bone marrow. They were looking for precursers which basically is the cells that make the blood cells.
Her precursors for her white blood cells and platelets was fine but the red ones were very tiny and there were only a few.
Now it could be that she is coming to the end of a virus (parvovirus) or it could be the way it's always been. So it doesn't give a great deal on it's own but along with other results we should get a better picture.
She asked how Reagan was and I said we felt she was a bit pale and maybe a little more sleepy than usual so she said to maybe getherblood tested next wk.
She's still waiting for the results from the bone (they want to look at the architecture of it) and the blood that was sent to Portugal.
I took her dressing off today, it had to stay on for 48hrs. There is no bruising just a hole, it's about the size of a little drinking straw. Ouch!
I spoke to Dr Pilidis to get the results of the bone marrow. They were looking for precursers which basically is the cells that make the blood cells.
Her precursors for her white blood cells and platelets was fine but the red ones were very tiny and there were only a few.
Now it could be that she is coming to the end of a virus (parvovirus) or it could be the way it's always been. So it doesn't give a great deal on it's own but along with other results we should get a better picture.
She asked how Reagan was and I said we felt she was a bit pale and maybe a little more sleepy than usual so she said to maybe getherblood tested next wk.
She's still waiting for the results from the bone (they want to look at the architecture of it) and the blood that was sent to Portugal.
Oopps I forgot!
Back in May Reagan also had a kidney scan. It's fairly unusual for babies under a year old to have a urine infection so they like to follow up with an ultrasound scan.
We had this done at a local medical centre, wwe waited soooooooo long and the scan took all of about 3 minutes, they said she was fine, no kidney problems!!
She should have another scan done a few months after, with die put through her system but as yet 've heard nothing.
We had this done at a local medical centre, wwe waited soooooooo long and the scan took all of about 3 minutes, they said she was fine, no kidney problems!!
She should have another scan done a few months after, with die put through her system but as yet 've heard nothing.
Tuesday 14 September 2010
Bone marrow test
6th Sept 2010 33+3wks 12.10lb
OMG!!!! Check that out! 13oz gain in 6 days??? In act when i saw the weight on the scales it was in KG and i thought I read it wrong!! Surely that's not right???
So today is the day. We had to be at St Georges at 8.30am, Reagan couldn't eat for 4 hrs prior.
I thought that was going to be hard going because she rarely goes that long between feeds but it was absolutely fine! Phew, first hurdle!
So they come round and talk us through the procedure, once shes asleep they put a needle into her hip bone round the back and draw out some none marrow, which looks like frothy blood, then they insert another needle and take a little bit of bone. They also want to take some blood to be sent off for chromosome testing- this is to see if she has a mutation of the gene i was talking about. If she does then we know for sure that she has DBA (diamond blackfan anaemia)
So we walk her down to theatre and Alex has to wait outside. She just sits on my knee playing with a ball they gave her. They hold the gas in front of her face with NO mask on it. She tried to have a little play with it but didn't protest when we pulled h hands away.
She was very calm and relaxed which made it a million times easier. Then she fell asleep and i laid her on the bed.
We were given a bleeped and told we would be bleeped when she woke up which would be about an hr. This was at 9.30am.
So at 10.15am we went to wait outside the recovery room. We saw Dr Pilidis come out and she informed us that she got everything she needed and it was all straight forward, and she would be brought round shortly.
She was carried round by a nurse because she had woken up before even making it to recovery and cried a little. I thought that was really sweet of her!
She cried quite a bit and fed quite a bit before falling into a deep sleep for 2 hrs.
When she woke up she just as she always is and didn't seem any the worse for her ordeal!
Shes such a trooper, bless her.
All her observations were fine and we were allowed home!!
OMG!!!! Check that out! 13oz gain in 6 days??? In act when i saw the weight on the scales it was in KG and i thought I read it wrong!! Surely that's not right???
So today is the day. We had to be at St Georges at 8.30am, Reagan couldn't eat for 4 hrs prior.
I thought that was going to be hard going because she rarely goes that long between feeds but it was absolutely fine! Phew, first hurdle!
So they come round and talk us through the procedure, once shes asleep they put a needle into her hip bone round the back and draw out some none marrow, which looks like frothy blood, then they insert another needle and take a little bit of bone. They also want to take some blood to be sent off for chromosome testing- this is to see if she has a mutation of the gene i was talking about. If she does then we know for sure that she has DBA (diamond blackfan anaemia)
So we walk her down to theatre and Alex has to wait outside. She just sits on my knee playing with a ball they gave her. They hold the gas in front of her face with NO mask on it. She tried to have a little play with it but didn't protest when we pulled h hands away.
She was very calm and relaxed which made it a million times easier. Then she fell asleep and i laid her on the bed.
We were given a bleeped and told we would be bleeped when she woke up which would be about an hr. This was at 9.30am.
So at 10.15am we went to wait outside the recovery room. We saw Dr Pilidis come out and she informed us that she got everything she needed and it was all straight forward, and she would be brought round shortly.
She was carried round by a nurse because she had woken up before even making it to recovery and cried a little. I thought that was really sweet of her!
She cried quite a bit and fed quite a bit before falling into a deep sleep for 2 hrs.
When she woke up she just as she always is and didn't seem any the worse for her ordeal!
Shes such a trooper, bless her.
All her observations were fine and we were allowed home!!
The letter
26th Aug 2010
We got a copy of the letter sent to Dr Salma from Dr Plilidis today.
When we saw her the other day she put our minds at rest because we had been thinking all sorts of nasty things. She said it could still be a virus, even though it had been tested for she was testing further for it. Or it could be some kind of syndrome which is very hard to diagnose or they simply might never know!
Anyway they letter runs through the blood test results, her HB was now at 10.3 (it had been 2+5wks since her last transfusion)
At the end of the letter it had the name of the 'syndrome' she had mentioned, its called Diamond blackfan anaemia. In short it is a very rare blood disorder. Only 700 people world wide suffer from it, around 125 of which live in the UK.
The sufferer doesn't make any or enough red blood cells.
Because it's so rare very little is known. Around 25% have a mutated gene but as yet its not known why the other 75% have it which is why its so hard to test for it.
Treatment is steroids to begin with (which can have some nasty side effects), if that doesn't work or if it stops working at any time then it would be monthly blood transfusions which again doesn't come with out complication. And failing that then its a bone marrow transplant!!!!!
So needless to say we're pinning our hopes on it being a virus! Which Dr Plilidis says is unlikely but still possible!
Reagan will have her none marrow test in 11 days on 6th Dec at St Georges.
We got a copy of the letter sent to Dr Salma from Dr Plilidis today.
When we saw her the other day she put our minds at rest because we had been thinking all sorts of nasty things. She said it could still be a virus, even though it had been tested for she was testing further for it. Or it could be some kind of syndrome which is very hard to diagnose or they simply might never know!
Anyway they letter runs through the blood test results, her HB was now at 10.3 (it had been 2+5wks since her last transfusion)
At the end of the letter it had the name of the 'syndrome' she had mentioned, its called Diamond blackfan anaemia. In short it is a very rare blood disorder. Only 700 people world wide suffer from it, around 125 of which live in the UK.
The sufferer doesn't make any or enough red blood cells.
Because it's so rare very little is known. Around 25% have a mutated gene but as yet its not known why the other 75% have it which is why its so hard to test for it.
Treatment is steroids to begin with (which can have some nasty side effects), if that doesn't work or if it stops working at any time then it would be monthly blood transfusions which again doesn't come with out complication. And failing that then its a bone marrow transplant!!!!!
So needless to say we're pinning our hopes on it being a virus! Which Dr Plilidis says is unlikely but still possible!
Reagan will have her none marrow test in 11 days on 6th Dec at St Georges.
St Georges hospital
24th Aug 2010 31+4wks 11.13lb
Shes been referred to a paediatric haematologist at st Georges because she can been seen quicker than at Frimley and because she needs the bone marrow test now and there aren't so many anaesthetists at Frimley park that can anaesthetise such a little one.
So we saw Dr Plilidis today and she ran through all that had happened so far and checked her over.
She mentioned her thumbs which i questioned. She said that Dr Salma had mentioned that they looked like they were closer to her wrist than her fingers but Dr Pilidis didn't necessarily agree.
They took more blood, i don't even really know why other than to see what her HB was but i think it was just to check most of what had already beed checked.
It was decided that she would probably have the bone marrow test done in just over a wk.
Shes been referred to a paediatric haematologist at st Georges because she can been seen quicker than at Frimley and because she needs the bone marrow test now and there aren't so many anaesthetists at Frimley park that can anaesthetise such a little one.
So we saw Dr Plilidis today and she ran through all that had happened so far and checked her over.
She mentioned her thumbs which i questioned. She said that Dr Salma had mentioned that they looked like they were closer to her wrist than her fingers but Dr Pilidis didn't necessarily agree.
They took more blood, i don't even really know why other than to see what her HB was but i think it was just to check most of what had already beed checked.
It was decided that she would probably have the bone marrow test done in just over a wk.
Try again
5th Aug 2010
This time they manage to get blood taken and a canula straight in with no mucking about at all. But after some time the Dr comes to us and says he's really sorry but he made a mistake the form (put the wrong DOB down) so they wont release the blood and he needs to take MORE!!
Can you F'ing believe it??!
However he takes it from the canula which they don't like to do because their little veins are likely to collapse. We were lucky and it was fine.
So finally she gets the blood.
Oh and i forgot to say that here HB was 8.7 so she needed another 60mls of blood. Which they estimate should take her HB to 12.
This time they manage to get blood taken and a canula straight in with no mucking about at all. But after some time the Dr comes to us and says he's really sorry but he made a mistake the form (put the wrong DOB down) so they wont release the blood and he needs to take MORE!!
Can you F'ing believe it??!
However he takes it from the canula which they don't like to do because their little veins are likely to collapse. We were lucky and it was fine.
So finally she gets the blood.
Oh and i forgot to say that here HB was 8.7 so she needed another 60mls of blood. Which they estimate should take her HB to 12.
Part 2 blood transfusion
4th Aug 2010
Back to Frimley park hospital to have the next 60mls of blood. Again they need to take blood for cross match (check the blood with the donor blood) and see what her HB is so they can work out how much blood to give her.
While we were waiting a Dr came out and said that they had the results for the viruses, they were negative, which i know sounds good but what it means is that its something more serious wrong with her!
So because of this she will now need a bone marrow function test because they cant tell any more from ten blood, they need to look at where the blood is made.
Any way we go to get her blood taken and a canula put in, and we're hoping its straight forward because last the other day it took 5 attempts and its so distressing for her.
I think it was 3 attempts, they managed to get some blood but no canula.
Then it comes back that the one for the cross match had clotted so was no good and they need to repeat it! 2 more attempts!
By now its too late in the day for theta start a transfusion so we're asked to go back tomorrow.
Back to Frimley park hospital to have the next 60mls of blood. Again they need to take blood for cross match (check the blood with the donor blood) and see what her HB is so they can work out how much blood to give her.
While we were waiting a Dr came out and said that they had the results for the viruses, they were negative, which i know sounds good but what it means is that its something more serious wrong with her!
So because of this she will now need a bone marrow function test because they cant tell any more from ten blood, they need to look at where the blood is made.
Any way we go to get her blood taken and a canula put in, and we're hoping its straight forward because last the other day it took 5 attempts and its so distressing for her.
I think it was 3 attempts, they managed to get some blood but no canula.
Then it comes back that the one for the cross match had clotted so was no good and they need to repeat it! 2 more attempts!
By now its too late in the day for theta start a transfusion so we're asked to go back tomorrow.
Back to hospital
30th July 2010 30wks 10.14lb
Its all a bit hazy here but this is the gist.
Dr Salam decided that actually when she was her she was really quite worried about her. She had tried to get her adapt with a haematologist at Frimley but the next one was nearly a month away which was to long for here to wait.
So she wanted her in hospital for observation and to check for a few other things in her blood, so a FBC, she wanted to check her retic count again and also thee was. Coup,e of viruses that she thought could be the problem. She also wanted to see what her iron, vit B12 and colic acid levels were, all of which are needed to make blood.
What we knew now was that giving her a transfusion didn't fix her, for some reason she was still anaemic.
Blood test from today showed that her HB had dropped to 5.9 so they were going to transfuse but this time the plan was to take her right up to 12 rather than just 10.4 like last time. It also showed that her iron, vit B12 and folic acid levels were all good so she wS getting all she needed in her diet and it was getting absorbed as it should but something was going wrong still!!
Her retic count was still normal, so still not stepping up to the mark!!
You have 3 types of blood cells, red ones to carry oxygen round your body, white ones to fight infection and platelets to clot your blood to stop you bleeding when you cut yourself.
Her white cell count (wcc) was normal, he platelets was a little high, but her red was low.
She received 60mls of blood and needs to go back on Wed for another 60mls.
Its all a bit hazy here but this is the gist.
Dr Salam decided that actually when she was her she was really quite worried about her. She had tried to get her adapt with a haematologist at Frimley but the next one was nearly a month away which was to long for here to wait.
So she wanted her in hospital for observation and to check for a few other things in her blood, so a FBC, she wanted to check her retic count again and also thee was. Coup,e of viruses that she thought could be the problem. She also wanted to see what her iron, vit B12 and colic acid levels were, all of which are needed to make blood.
What we knew now was that giving her a transfusion didn't fix her, for some reason she was still anaemic.
Blood test from today showed that her HB had dropped to 5.9 so they were going to transfuse but this time the plan was to take her right up to 12 rather than just 10.4 like last time. It also showed that her iron, vit B12 and folic acid levels were all good so she wS getting all she needed in her diet and it was getting absorbed as it should but something was going wrong still!!
Her retic count was still normal, so still not stepping up to the mark!!
You have 3 types of blood cells, red ones to carry oxygen round your body, white ones to fight infection and platelets to clot your blood to stop you bleeding when you cut yourself.
Her white cell count (wcc) was normal, he platelets was a little high, but her red was low.
She received 60mls of blood and needs to go back on Wed for another 60mls.
Dr Salma -follow up
6th July 2010 24+4wks 10.6lb
Back to see Dr Salma today. Her weight gain is about 4oz per wk now, so much beet than it was but Dr Salma felt that it still wasn't good enough.
She said she looked pale, and had quite marked stiffness of her lower limbs (just looking for problems if you ask me!) and she had a central hypotonia.( hypotonia means decreased muscle tone)
The blood result came back later that day and showed that her HB was now down at 6.9' a wk post transfusion it was 10.7.
Plan:
Refer to physiotherapy
Review in 6 wks
Refer to a haematologist
Todays blood test showed that her retic count was 18 , this count should go up when you are short of blood, so in theory Reagans should be high to try and make more than the normal amount of blood but hers wAs normal.
Back to see Dr Salma today. Her weight gain is about 4oz per wk now, so much beet than it was but Dr Salma felt that it still wasn't good enough.
She said she looked pale, and had quite marked stiffness of her lower limbs (just looking for problems if you ask me!) and she had a central hypotonia.( hypotonia means decreased muscle tone)
The blood result came back later that day and showed that her HB was now down at 6.9' a wk post transfusion it was 10.7.
Plan:
Refer to physiotherapy
Review in 6 wks
Refer to a haematologist
Todays blood test showed that her retic count was 18 , this count should go up when you are short of blood, so in theory Reagans should be high to try and make more than the normal amount of blood but hers wAs normal.
Sweat test
30th June 2010 23+wks
Sweat test today. It was all pain free and simple for Reagan, phew!
They put a prob type thing on her thigh for a min or 2 that encourages it to sweat. Then they put a little disk on with a coil of thin plastic tubing inside it.
When she sweats it's soaked up into the tubing. Then its removed and the sweat is sent off for testing!
Sweat test today. It was all pain free and simple for Reagan, phew!
They put a prob type thing on her thigh for a min or 2 that encourages it to sweat. Then they put a little disk on with a coil of thin plastic tubing inside it.
When she sweats it's soaked up into the tubing. Then its removed and the sweat is sent off for testing!
Paediactric review
18th MY 2010 17+4 wks 8.13lbs
WOW!! OMG, she gained 8oz this wk!!!! Amazing, up until now she has been gaining an average of 1.3oz per wk!!!!
So is she fixed??? Have we found the problem???............
Any way Dr Salma (her paediatrician) felt she hadn't gained too well, until i pointed out that most of the gaining had been done in ten past wk. Zo she didn't need to be admitted to hospital, she was giving her more time and hoping that she had turned the corner.
Plan:
Start he on Sytron (iron) and multi vitamins
Organised a sweat test (didn't get done before)
See a dietician
Follow up in 6 wks.
WOW!! OMG, she gained 8oz this wk!!!! Amazing, up until now she has been gaining an average of 1.3oz per wk!!!!
So is she fixed??? Have we found the problem???............
Any way Dr Salma (her paediatrician) felt she hadn't gained too well, until i pointed out that most of the gaining had been done in ten past wk. Zo she didn't need to be admitted to hospital, she was giving her more time and hoping that she had turned the corner.
Plan:
Start he on Sytron (iron) and multi vitamins
Organised a sweat test (didn't get done before)
See a dietician
Follow up in 6 wks.
Cardiac assessment
7th May 2010 16wks
Cardiac scan today showed 2/6 long systolic murmur, probably conducted to the axilla and it was thought that the murmur probably arose from the mitral valve!! (now can you see why its hard to keep all the info in my head!!!)
She had a small low muscular VSD with minimal shunt with no right ventricular dilatation.
The pulmonary valve gradient was 1.2 metres per second. There was no duct.
The aortic valve appeared probably bicuspid with a gradient of 1.2 metres per second. No aortic regurgitation.
Minimal posterior mitral valve regurgitation of countable significance.
The aortic arch appeared a shade narrow with normal femoral pulses.
Now if you have any idea what the he'll all that means then i wish you were with me at the scan!!
Basically it meant she had 2 leaky valves and a tiny hole at the top........i think! But all was ok.
A follow up appt to re check was made for 4 mths time.
Cardiac scan today showed 2/6 long systolic murmur, probably conducted to the axilla and it was thought that the murmur probably arose from the mitral valve!! (now can you see why its hard to keep all the info in my head!!!)
She had a small low muscular VSD with minimal shunt with no right ventricular dilatation.
The pulmonary valve gradient was 1.2 metres per second. There was no duct.
The aortic valve appeared probably bicuspid with a gradient of 1.2 metres per second. No aortic regurgitation.
Minimal posterior mitral valve regurgitation of countable significance.
The aortic arch appeared a shade narrow with normal femoral pulses.
Now if you have any idea what the he'll all that means then i wish you were with me at the scan!!
Basically it meant she had 2 leaky valves and a tiny hole at the top........i think! But all was ok.
A follow up appt to re check was made for 4 mths time.
Antibiotics
3rd May 2010 15+3wks 8lb
When i got to the hospital today the canula wasn't working, her vein had collapsed which is common, they tend to only last a few days. So they decided that she could have oral antibiotics instead - why they couldn't have done that in the first place i don't know!
When i got to the hospital today the canula wasn't working, her vein had collapsed which is common, they tend to only last a few days. So they decided that she could have oral antibiotics instead - why they couldn't have done that in the first place i don't know!
Home
2nd May 2010
We got home today, i just need to go back to the hospital for the next 3 days for them to administer her iv anti biotics.
We got home today, i just need to go back to the hospital for the next 3 days for them to administer her iv anti biotics.
1st blood transfusion
30th April 2010
I got a phone call to say that Reagans HB levels were very low and i needed to bring her straight in for a blood transfusion!!!!! Wasn't expecting that at all!
It was decided that it could wait until morning because they wanted to check her over and keep her in for observation. They don't like to do transfusions in the eve or during the night just incase theres a reaction, they have more staff in during the day.
Her HB was 6 and it should be 12.
The Dr completely butchered her trying to get blood and a canula in, it was awful she was screaming so much.
She was a given 60mls of blood over a time of 3-4hrs.
They also found that she had a urine infection that they wewre going to treat with antibiotics.
I got a phone call to say that Reagans HB levels were very low and i needed to bring her straight in for a blood transfusion!!!!! Wasn't expecting that at all!
It was decided that it could wait until morning because they wanted to check her over and keep her in for observation. They don't like to do transfusions in the eve or during the night just incase theres a reaction, they have more staff in during the day.
Her HB was 6 and it should be 12.
The Dr completely butchered her trying to get blood and a canula in, it was awful she was screaming so much.
She was a given 60mls of blood over a time of 3-4hrs.
They also found that she had a urine infection that they wewre going to treat with antibiotics.
Monday 13 September 2010
Paediatrician appt
27th April 2010 14+4wks 7.14lbs
I took Reagan back to the GP (this time i saw our own GP rather than a cover) she agreed that she really should be seen by a paediatrician, as we just wernt getting anywhere!
She had an appt booked for today anyway as a follow up from the pneumonia she had at birth. So it was decided that i would just use this appt to discuss her poor weight gain.
Straight away she commented that she was pale. Then she checked her over and heard a "significant heart murmur" . She called a consultant in to listen, he just happened to be about at the time. He agreed and wanted to do a heart scan on her.
The paediatrician organised for beer to have blood taken for a full blood count (fbc) a liver Function test, a sweat test for cystic fibrosis, urine sample, stool sample, chromosome test and to return to see her in 2 wks time and if her weight gain is still an issue then she would be admitted into hospital.
Her bp was104/50.
I took Reagan back to the GP (this time i saw our own GP rather than a cover) she agreed that she really should be seen by a paediatrician, as we just wernt getting anywhere!
She had an appt booked for today anyway as a follow up from the pneumonia she had at birth. So it was decided that i would just use this appt to discuss her poor weight gain.
Straight away she commented that she was pale. Then she checked her over and heard a "significant heart murmur" . She called a consultant in to listen, he just happened to be about at the time. He agreed and wanted to do a heart scan on her.
The paediatrician organised for beer to have blood taken for a full blood count (fbc) a liver Function test, a sweat test for cystic fibrosis, urine sample, stool sample, chromosome test and to return to see her in 2 wks time and if her weight gain is still an issue then she would be admitted into hospital.
Her bp was104/50.
Sunday 12 September 2010
GP visit
6th March 2010 11+3wks
I took Reagan to see the GP and they wernt interested, As far as he was concerned she wasn't a "failure to thrive" child because she was gaining, albeit slowly.there was nothing wrong with her!!
Too her to get weighed again and the HV got so shifty with me i ended up in tears. She got all red in the face as she told me that i should be topping up with formula, and she would get into trouble for not doing her job properly!!!
I told her that I felt she wasn't giving me any support with BF and her answer was not to give up BF but to top up. I said that i had been with expressed milk and Reagan just didn't take much anyway!!
I took Reagan to see the GP and they wernt interested, As far as he was concerned she wasn't a "failure to thrive" child because she was gaining, albeit slowly.there was nothing wrong with her!!
Too her to get weighed again and the HV got so shifty with me i ended up in tears. She got all red in the face as she told me that i should be topping up with formula, and she would get into trouble for not doing her job properly!!!
I told her that I felt she wasn't giving me any support with BF and her answer was not to give up BF but to top up. I said that i had been with expressed milk and Reagan just didn't take much anyway!!
Feeding
29th March 2010 9+3 wks
Reagan now weighs 7.4lbs and is falling further away from the bottom percentile, now the HV keeps nagging me to top up with formula, she doesn't seem to want to help me to succeed in BF, instead she wants a quick fix with formula.
I don't feel like I'm getting the support needed to get Reagan to feed properly.
She advised me to take Reagan to our GP because she is now "looking scrawny".
Reagan now weighs 7.4lbs and is falling further away from the bottom percentile, now the HV keeps nagging me to top up with formula, she doesn't seem to want to help me to succeed in BF, instead she wants a quick fix with formula.
I don't feel like I'm getting the support needed to get Reagan to feed properly.
She advised me to take Reagan to our GP because she is now "looking scrawny".
Saturday 11 September 2010
Health visitor
10th March 2010
Health visitor came back today and weighed her and checked her feeding etc. Weight was 6.15lb.
She wrote in her red book that she had been prescribed gaviscon because we thought she may have silent reflux and it was worth a try. But when i gave it to her it really seemed to disagree with her.
At this point Reagan was sleeping well, she had gone unto 6hrs during the night on quite a few occasions. Her latch was still poor and I had visited the breast feeding councillor who said that if we didn't see an improvement soon then I would need to express and feed through a bottle.
I remember doing this for 2 wks but it made no difference!
Health visitor came back today and weighed her and checked her feeding etc. Weight was 6.15lb.
She wrote in her red book that she had been prescribed gaviscon because we thought she may have silent reflux and it was worth a try. But when i gave it to her it really seemed to disagree with her.
At this point Reagan was sleeping well, she had gone unto 6hrs during the night on quite a few occasions. Her latch was still poor and I had visited the breast feeding councillor who said that if we didn't see an improvement soon then I would need to express and feed through a bottle.
I remember doing this for 2 wks but it made no difference!
Weight gains
9/2/10 3+4wks 6.8
15/2/10 4+3wks 6.9
22/2/10 5+3wks 6.101/2
1/3/10 6+3wks 6.13
Reagan was born on th 9th percentile at 6 wks she had finally made it back past her birth weight but was now below the lowest percentile.
15/2/10 4+3wks 6.9
22/2/10 5+3wks 6.101/2
1/3/10 6+3wks 6.13
Reagan was born on th 9th percentile at 6 wks she had finally made it back past her birth weight but was now below the lowest percentile.
20 days old
4th Feb 2010
HV came and weighed her..........she bloody lost what she'd gained! So back to 6lb 5oz.
Her belly button is looking better so at least she won't need anything done to that.
HV came and weighed her..........she bloody lost what she'd gained! So back to 6lb 5oz.
Her belly button is looking better so at least she won't need anything done to that.
17days
1st feb 2010
Finally!!! She gains weight. Now she weighs 6lb 6.5oz. So she's signed off from the midwife and the HV will come over in a few days.
Finally!!! She gains weight. Now she weighs 6lb 6.5oz. So she's signed off from the midwife and the HV will come over in a few days.
Day 15
30th Jan 2010
Still no weight gain!!! But her cord came off today, the midwife looked at it and thought it might need to be quarterized?!!?
Still no weight gain!!! But her cord came off today, the midwife looked at it and thought it might need to be quarterized?!!?
Day 12
27th Jan 2010
Midwife came back to weigh her again, no change at all still weighs 6lb 5oz. So she's coming back again in a few days.
Midwife came back to weigh her again, no change at all still weighs 6lb 5oz. So she's coming back again in a few days.
Back home
25th Jan 2010
Reagan is now 10 days old and should by rights be getting signed off from the midwife and handed over to the health visitor.
When the midwife came she weighed her again and said that she should be back up to birth weight by now. She had only gained 1.5oz so now weighed 6lb 5oz, also her cord was still very much attached.
So she didn't sign her off and would return in a few days to weigh her again!
I forgot to mention that when she was born she had fat neck at the back and at the very top of her back. They described it as webbing. They wern't sure what it was but thought it was probably from the fluid that was showing on the nuchal translucency, perhaps it hadn't be reabsorbed into the body until very late on in pregnancy. It should shrink back as she grows. And on the right side of her sole by her heel on her right foot it looked a little miss shaped, a bit like it had been added on. They asked if she was at any time breech, but she wasn't. So they thought it must just be the way she was positioned.
Reagan is now 10 days old and should by rights be getting signed off from the midwife and handed over to the health visitor.
When the midwife came she weighed her again and said that she should be back up to birth weight by now. She had only gained 1.5oz so now weighed 6lb 5oz, also her cord was still very much attached.
So she didn't sign her off and would return in a few days to weigh her again!
I forgot to mention that when she was born she had fat neck at the back and at the very top of her back. They described it as webbing. They wern't sure what it was but thought it was probably from the fluid that was showing on the nuchal translucency, perhaps it hadn't be reabsorbed into the body until very late on in pregnancy. It should shrink back as she grows. And on the right side of her sole by her heel on her right foot it looked a little miss shaped, a bit like it had been added on. They asked if she was at any time breech, but she wasn't. So they thought it must just be the way she was positioned.
5 Days old
20th Jan 2010
Reagan got weighed today for the first time since birth. It was bit nerve wracking because of the bumpy start and she still wasn't feeding great.
6lb 3.5oz, so she'd lost 8oz, which is under 10% so I was pleased with that!!!
She also had her guthrie test today :-(
Reagan got weighed today for the first time since birth. It was bit nerve wracking because of the bumpy start and she still wasn't feeding great.
6lb 3.5oz, so she'd lost 8oz, which is under 10% so I was pleased with that!!!
She also had her guthrie test today :-(
On the ward
18th Jan 2010.
Reagan was allowed to come onto the ward with me because her Billy rubin levels were fine!
So we just have go over to SCBU twice a day for them to give her her antibiotics.
It's a 5 day course, then we can go home!
Reagan was allowed to come onto the ward with me because her Billy rubin levels were fine!
So we just have go over to SCBU twice a day for them to give her her antibiotics.
It's a 5 day course, then we can go home!
Day 2 in SCBU
I woke with a start at 6am. SCBU hadn't called me back so I ran round there to find her sleeping peacefully (the first time she'd done that since birth)
The nurse told me that she had given her another feed via the NG (nasal gastric) tube. I was alittle annoyed that this had happened with out my consent but seeing how peaceful Reagan was so pleasing.
More than that though she was breathing all by her self! No oxygen!! And her SATs were at 100%. It was such a relief I just burst into tears.letting her sleep because of the full tummy and allowing her use all her energy for breathing was what was needed obviously.
She was a little yellow and so they wanted to check her Billy Rubin levels for jaundice.
The children were very anxious about her and lots of tears had been shed at home so obviously they wanted to see her but she looked quite frightening because of all the tubes and wires so we were a little unsure wether or not to let them but she had now lost the oxygen tube and not long after the SATS monitor went and when the new nurse came on the morning shift she decided to get rid of the NG tube because she was now feeding so much better due to having such a good sleep I guess! So that went too and all that was left was the iv drip which could be hidden under the blanket.
So by the time the kids came to visit they could see her!
The nurse said that if her Billy Rubin levels we're OK she could come over to the ward with me!
Whilst
The nurse told me that she had given her another feed via the NG (nasal gastric) tube. I was alittle annoyed that this had happened with out my consent but seeing how peaceful Reagan was so pleasing.
More than that though she was breathing all by her self! No oxygen!! And her SATs were at 100%. It was such a relief I just burst into tears.letting her sleep because of the full tummy and allowing her use all her energy for breathing was what was needed obviously.
She was a little yellow and so they wanted to check her Billy Rubin levels for jaundice.
The children were very anxious about her and lots of tears had been shed at home so obviously they wanted to see her but she looked quite frightening because of all the tubes and wires so we were a little unsure wether or not to let them but she had now lost the oxygen tube and not long after the SATS monitor went and when the new nurse came on the morning shift she decided to get rid of the NG tube because she was now feeding so much better due to having such a good sleep I guess! So that went too and all that was left was the iv drip which could be hidden under the blanket.
So by the time the kids came to visit they could see her!
The nurse said that if her Billy Rubin levels we're OK she could come over to the ward with me!
Whilst
Friday 10 September 2010
Back to hospital
16th Jan 2010
The midwife came round to do the aped check and normal post natal check.
Reagan had been grunting all night and wasn't feeding too great.
So we went back to SCBU, they did all sorts of test. They took blood, did SATs, checked her heart, put a canula in,gave her oxygen because her sats were too low.
She still wouldn't feed great and was very sleepy.
Eventually they did a chest xray, which was the worst i think as she cried and cried and we weren't allowed in the room with her.
The chest xray showed a chest infection, so they began to treat it with iv antibiotics.
She was staying in SCBU and i was over on the Maternity ward. They had to call me back to feed her but she was so tired and breathless and she couldn't get her SATs up, i was back an forth every hr till about 2am. At which time the nurse suggested we feed her through the tube that they had put down her nose.
So i agreed as it just didn't seem fair to keep making her struggle.
The midwife came round to do the aped check and normal post natal check.
Reagan had been grunting all night and wasn't feeding too great.
So we went back to SCBU, they did all sorts of test. They took blood, did SATs, checked her heart, put a canula in,gave her oxygen because her sats were too low.
She still wouldn't feed great and was very sleepy.
Eventually they did a chest xray, which was the worst i think as she cried and cried and we weren't allowed in the room with her.
The chest xray showed a chest infection, so they began to treat it with iv antibiotics.
She was staying in SCBU and i was over on the Maternity ward. They had to call me back to feed her but she was so tired and breathless and she couldn't get her SATs up, i was back an forth every hr till about 2am. At which time the nurse suggested we feed her through the tube that they had put down her nose.
So i agreed as it just didn't seem fair to keep making her struggle.
The birth
15th Jan 2010
Reagan born naturally but she wasn't breathing as well as the midwife would have liked and so I had to blow in here face for a few minutes to stimulate her.
After some time she still hadn't pinked up properly, half of her torso had but not the reest of her body and she was also grunting.
We were sent to SCBU to have a paed check her out as they were worried especially because of the leaky heart valve.
The paed was has happy with her, she had pinked up well by this point except her hands and feet.
So we went home!!
Reagan born naturally but she wasn't breathing as well as the midwife would have liked and so I had to blow in here face for a few minutes to stimulate her.
After some time she still hadn't pinked up properly, half of her torso had but not the reest of her body and she was also grunting.
We were sent to SCBU to have a paed check her out as they were worried especially because of the leaky heart valve.
The paed was has happy with her, she had pinked up well by this point except her hands and feet.
So we went home!!
20wk scan #2!!!
15th Sept 2009
A re-scan today because of the small stomach last wk.
Today however was all good! Which was such a relief. It occurred to me today that I was really gutted about last wks scan because it was the first time i was going to have a scan for pleasure!
So with all this in mind I wasn't convinced everything was ok until the baby was born.
A re-scan today because of the small stomach last wk.
Today however was all good! Which was such a relief. It occurred to me today that I was really gutted about last wks scan because it was the first time i was going to have a scan for pleasure!
So with all this in mind I wasn't convinced everything was ok until the baby was born.
20 wk scan
10th Sept 2009 21 wks pregnant
Back at firmly park for a 20wk anomaly scan.
This is the scan when you can find out what sex the baby is, however, we found out what we were having from the CVS test. We've never found out the sex before so this is new for us!!
The scan was all fine except they found the stomach to be small!!! Can you believe it! Any way they said that it could just be that the baby hasn't eaten recently but because of previous scans i was to go back in a wk to have another look!!!!
Back at firmly park for a 20wk anomaly scan.
This is the scan when you can find out what sex the baby is, however, we found out what we were having from the CVS test. We've never found out the sex before so this is new for us!!
The scan was all fine except they found the stomach to be small!!! Can you believe it! Any way they said that it could just be that the baby hasn't eaten recently but because of previous scans i was to go back in a wk to have another look!!!!
Cardiac scan #2
8th Sept 2009
By now I was about 20wks pregnant and it seemed we had spent the entire pregnancy so far going from appt to appt.
Back at St Thomas' for another scan. Today they got a beet view and the out come was that the baby had a leaky valve. He assured us that it was very small and insignificant. It wouldn't need attention nor would it cause any trouble later in life.
It was called a mild tricuspid regurgitation, with no haemodynamic significance.
By now I was about 20wks pregnant and it seemed we had spent the entire pregnancy so far going from appt to appt.
Back at St Thomas' for another scan. Today they got a beet view and the out come was that the baby had a leaky valve. He assured us that it was very small and insignificant. It wouldn't need attention nor would it cause any trouble later in life.
It was called a mild tricuspid regurgitation, with no haemodynamic significance.
Cardiac scan
19th Aug 2009.
We had an appt at St Thomas' in London (right near the London eye) for them to scan the babies heart.
It was very long and very quiet, they have to really concentrate so they warned us that they wouldn't talk to us until it was over, so it's a little unnerving.
So she did the whole scan which was recorded. She then took the tape to a consultant. He came in and had a go his self. They have a long check list to go through and there was one thing on the list they couldn't quiet get a good look at. He said they could get an 'alright' view but not great.
So we were asked to go back again in a few wks time to try again when the baby would be a little bigger.
What they could see was all ok.
We had an appt at St Thomas' in London (right near the London eye) for them to scan the babies heart.
It was very long and very quiet, they have to really concentrate so they warned us that they wouldn't talk to us until it was over, so it's a little unnerving.
So she did the whole scan which was recorded. She then took the tape to a consultant. He came in and had a go his self. They have a long check list to go through and there was one thing on the list they couldn't quiet get a good look at. He said they could get an 'alright' view but not great.
So we were asked to go back again in a few wks time to try again when the baby would be a little bigger.
What they could see was all ok.
CVS results
3rd Aug 2009
We were able to call the hospital to get the results but i can remember exactly what date it was i do remember that they wernt back yet and we had to call another 2 times before getting them, which was agonising!But the main thing in the end was that the baby was not downs!phew, huge sigh of relief.
3rd Aug is the date on the letter that we received the letter confirming the results along with an appointment for a cardiac scan at st. Thomas' London.
The reason for this is because the measurement was so large it mostly likely means something is wrong and if its not downs then its likely to be a problem with the heart a d least likely just a sack of fluid.
We were able to call the hospital to get the results but i can remember exactly what date it was i do remember that they wernt back yet and we had to call another 2 times before getting them, which was agonising!But the main thing in the end was that the baby was not downs!phew, huge sigh of relief.
3rd Aug is the date on the letter that we received the letter confirming the results along with an appointment for a cardiac scan at st. Thomas' London.
The reason for this is because the measurement was so large it mostly likely means something is wrong and if its not downs then its likely to be a problem with the heart a d least likely just a sack of fluid.
Scan #3
20th July 2009
Back at Frimley park for another try at getting the nuchal translucency.
This time we were successful but it wasn't good news.
It measurerd 4.7mm. This give the baby a 1 in 3 chance of being downs.
We have had the blood test done too for the combined screening, which gives a more accurate ratio.
It was decided though, that because it was very low the blood test wouldn't make a significant difference and so we went ahead and had a CVS ( chorion-villus sampling) done. A needle is put into the uterus and some of the placenta is removed to rest the chromosomes.
A local anaesthetic is given and so it is pretty much pain free but an incredibly horrible procedure.
Now we need to wait 10 days for the results.
Back at Frimley park for another try at getting the nuchal translucency.
This time we were successful but it wasn't good news.
It measurerd 4.7mm. This give the baby a 1 in 3 chance of being downs.
We have had the blood test done too for the combined screening, which gives a more accurate ratio.
It was decided though, that because it was very low the blood test wouldn't make a significant difference and so we went ahead and had a CVS ( chorion-villus sampling) done. A needle is put into the uterus and some of the placenta is removed to rest the chromosomes.
A local anaesthetic is given and so it is pretty much pain free but an incredibly horrible procedure.
Now we need to wait 10 days for the results.
Scan # 2
17th July 2009
Back to Frimley park hospital to get a nuchal translucency measurement.
Just as we thought it was large, however, the sonographer couldn't get an equal measurement. It appeared to be bigger on one side of the neck than the other. This was something she had never seen before. She asked another sonographer to have a look to no avail. Se we were asked to come back in e few days.
Report as follows
First trimester ultrasound:
Transabdominal US with HD11 . Ultrasound view : Good
Fetal heart action present
CRL (crown to rump length) 68mm
Nuchal translucency 3.70mm (worst case)
Summery: normal intrauterine pregnancy.
Unilateral fluid collection seen at the fetal neck.? Unusual presentation of nuchal translucency ? Unilateral cystic hygroma.
Back to Frimley park hospital to get a nuchal translucency measurement.
Just as we thought it was large, however, the sonographer couldn't get an equal measurement. It appeared to be bigger on one side of the neck than the other. This was something she had never seen before. She asked another sonographer to have a look to no avail. Se we were asked to come back in e few days.
Report as follows
First trimester ultrasound:
Transabdominal US with HD11 . Ultrasound view : Good
Fetal heart action present
CRL (crown to rump length) 68mm
Nuchal translucency 3.70mm (worst case)
Summery: normal intrauterine pregnancy.
Unilateral fluid collection seen at the fetal neck.? Unusual presentation of nuchal translucency ? Unilateral cystic hygroma.
1st ultrasound scan
3rd July 2009
Today we went for our first scan to get a due date confirmed and have the measurement of the nuchal fold taken.
It turns out that I was only 10 wks pregnant so its too early to do the measurements, however its really obvious that the nuchal fold is huge.
We were asked to return in 2 wks time.
We we were given a print out of the findings which said; early pregnancy assessment, gestational sac present, yolk sac present, amniotic sac present. Embryo present. Fetal heart action present. Prominent nuchal translucency noted.
Today we went for our first scan to get a due date confirmed and have the measurement of the nuchal fold taken.
It turns out that I was only 10 wks pregnant so its too early to do the measurements, however its really obvious that the nuchal fold is huge.
We were asked to return in 2 wks time.
We we were given a print out of the findings which said; early pregnancy assessment, gestational sac present, yolk sac present, amniotic sac present. Embryo present. Fetal heart action present. Prominent nuchal translucency noted.
In the beginning
10th Sept 2010 12.44pm
I've decided to write a blog on behalf of my daughter Reagan, because almost since conception she has had one drama or another and it's all too much to keep in my head!
So I'm going to try and start at the beginning! And wind back time to last July when we went for our first ultrasound scan.
Hope you enjoy.
I've decided to write a blog on behalf of my daughter Reagan, because almost since conception she has had one drama or another and it's all too much to keep in my head!
So I'm going to try and start at the beginning! And wind back time to last July when we went for our first ultrasound scan.
Hope you enjoy.
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