Lydia with Toffee,our ancient Rabbit....who thinks he;s a dog! and Harvey..our yellow Labrador Puppy who we collect on 13th Dec.Pic shows him at 5 weeks old aaaahhhh!Monday 1 December 2008
Pets......
Lydia with Toffee,our ancient Rabbit....who thinks he;s a dog! and Harvey..our yellow Labrador Puppy who we collect on 13th Dec.Pic shows him at 5 weeks old aaaahhhh!
Sheffield update from 27th November
right we spent all of yesterday in Sheffield....I have to say I went with really high hopes of having a diagnosis for Samuel and good chat with Gastro. alas this was not to be because unfortunately the gastro Samuel has been referred to was unavailable to speak to us even though he was in clinic.I did find this a bit disappointing as although Sam has been in clinic twice and also been admitted we have not seen our gastro once! Apparently Samuels colonoscopy and endoscopy showed inflamation,nodules and ulceration which would be in line with an allergic condition such as an eosinophillic condition BUT his biopsies apparently came back normal .She registrar said this could be because he was having more neocate and less foods that he was allergic to at the time of the surgery so doesnt prove anything either way which is frustrating to say the least.PH test result he said 'showed just acid all the time' but he said the probe was too far down....I then corrected him by saying that it was pulled back to the correct place and then re-xrayed but because that wasnt documented in the notes they are more or less disregarding the test.I said i found that frustrating and he said 'well hes on omeprazole and so theres nothing we would do' As the clinic was over running and we had an appt downstairs with the surgeon we were told to go and see the surgeon and then come back up,by which time the reg would have discussed Samuel with the Gastro con and dietician and then formulated a plan. So we went down to see surgeon and came back.....to find they had all left clinic and gone .All I had was the receptionist hand me a bundle of forms for stool samples,FISH genetics test (whatever that is...all it said was ?autistic spectrum disorder ??) and RAST test??? for milk protein,wheat,and some others which I cant remember. we got back from Sheffield at 5.20pm....to an answerphone message from our local Dietician to say she had a phonecall from Sheffield and if we got back before 5pm then to phone her straight away if not them she wasnt back till next Tuesday afternoon. so what we gained from that visit was absolutely nothing and I still have a child who is now so poorly that school is out of the question...........they even saw him have an attack of the runs while he was there,screaming,crying and walking like he had been riding a horse all day,legs apart as he had poo running down his leg.I find it unbelievable to say the least! Problem was that the reg himself admitted that Samuel and seri were way beyond his expertise but Gastro just want available to speak to us.Registrar said that he would speak to gastro and that Gastro would probably come and speak to us....but he didnt. Seri was pretty short and sweet.Apparently Gastrostomy feeding is out of the question at the moment as she is still not back up to correct weight and has been too poorly of late.Surgeon seemed to think that there was a good chance that her stomach wont work well enough to ever accept stomach feeding.A skin and muscle biopsy was also suggested to us as a good idea now as she is having so many problems. Thats about it.Im feeling totally frustrated and fed up._________________
Apart from the frustration Seraphina had her 2nd Birthday.We got a banner from Birthdays and decorated her wheelchair both sides with happy Birthday.Bless her she thought it was great fun trying to rip it off as it made a nice crinkly sound when she touched it as it was made out of metallic paper.She had a Pepper Pig Birthday cake (though we had to pretend with the candles unlit because of her oxygen) and we also took a cake to Church on the Sunday to share with everyone,so many people have been praying for her over this last 12 months we wanted to share her birthay with them all.
she had some ovely presents including the most gorgeous T-shirt with a ballerina on from my friend Hazel which matched the skirt and ballerina tights we had bought her perfectly!
Will have to get round to posting a few more pictures on here so you can see the Birthday Girl
Sam and Seraphina op pictures
Samuel on just neocate and no food....and Samuel immediately post op...not impressed.Look how much better he looked when not eating!really stuck me seeing these posts side by side hmmm... alas the healthy look didnt last longer than a couple of weeks,as soon as he starts to eat a little food we are back to losing weight and looking more like the post op pic :-(
Seraphina in PICU after 3rd Fundo 1st pic shows lovely arterial line in neck ugh!Wednesday 26 November 2008
oh boy what a day!
Spent the morning in hospital this morning with Ser,having her eyes checked and (so i thought) being fitted for her glasses.
Well she had all her checks done and those nasty stingy drops put in her eyes and then went to see the big cheese consultant.She was lovely it has to be said and apologised that it wasnt better news....apparently Seri has a problem with the shape of her eyes and also the development at the back of the left eye.She HAS lost some of her left field of vision (as we had been told previoulsy) and her sight isnt brilliant..she explained it like this (showing me one of those eye test charts you normally see in thenopticians with the letters on) Seri's sight is like she can read only the top two lines on the chart.
HOWEVER,she is also showing signs that suggest that neurologically she hasnt the potential for better eye sight because of damamge sustained to the visual centre of the brain,in which case glasses would do nothing.So she is sending her to Birmingham Childrens hospital (was going to be Moorfields in London but she said Birmingham have started doing the same test) for electrodiagnostic testing which will basically look at the brains visual response and see what state its in.When we get those results ,which will be about 2-3 months,then she said we will have a better idea.she said that if she's proved wrong and she does have potential for better vision then they will '' pull the stops out'' and see what surgical options there are and what can be done with glasses.
came out feeling a bit crushed to be honest,always seems to be bad news. Arrived home to find a big envelope from the EPICURE study Seri was registered on...they are researching outcomes of extremely premature babies born in 2006.Seri's 'lovely'(in the same way a severe gastric bug is lovely) neonatologist was taking part on the study team.They sent a huge questionaire to fill in with such things like ticking all the different words she could say....hmmm that wouldnt take long and how well she's walking etc etc and then were 'inviting' her for a full medical and assessment which would be videoed...................................needless to say I phoned them up and very politely declined this amazing opportunity (Im sure you can detect the sarcasm lol!)
well tomorrow is my princess's birthday and we are in Sheffield Childrens hospital all day for the latest on Seri and also Samuels biopsy results.Lets hope theres SOME good news tomorrow!!!
Well she had all her checks done and those nasty stingy drops put in her eyes and then went to see the big cheese consultant.She was lovely it has to be said and apologised that it wasnt better news....apparently Seri has a problem with the shape of her eyes and also the development at the back of the left eye.She HAS lost some of her left field of vision (as we had been told previoulsy) and her sight isnt brilliant..she explained it like this (showing me one of those eye test charts you normally see in thenopticians with the letters on) Seri's sight is like she can read only the top two lines on the chart.
HOWEVER,she is also showing signs that suggest that neurologically she hasnt the potential for better eye sight because of damamge sustained to the visual centre of the brain,in which case glasses would do nothing.So she is sending her to Birmingham Childrens hospital (was going to be Moorfields in London but she said Birmingham have started doing the same test) for electrodiagnostic testing which will basically look at the brains visual response and see what state its in.When we get those results ,which will be about 2-3 months,then she said we will have a better idea.she said that if she's proved wrong and she does have potential for better vision then they will '' pull the stops out'' and see what surgical options there are and what can be done with glasses.
came out feeling a bit crushed to be honest,always seems to be bad news. Arrived home to find a big envelope from the EPICURE study Seri was registered on...they are researching outcomes of extremely premature babies born in 2006.Seri's 'lovely'(in the same way a severe gastric bug is lovely) neonatologist was taking part on the study team.They sent a huge questionaire to fill in with such things like ticking all the different words she could say....hmmm that wouldnt take long and how well she's walking etc etc and then were 'inviting' her for a full medical and assessment which would be videoed...................................needless to say I phoned them up and very politely declined this amazing opportunity (Im sure you can detect the sarcasm lol!)
well tomorrow is my princess's birthday and we are in Sheffield Childrens hospital all day for the latest on Seri and also Samuels biopsy results.Lets hope theres SOME good news tomorrow!!!
Tuesday 18 November 2008
Had to post this
I am the Child
I am the Child who cannot talk.
You often pity me,I see it in your eyes.
You wonder how much I am aware of - I see that as well,
I am aware of much - whether you are happy,sad or fearful,
patient or unpatient,full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration,knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation,so complete it is at times.
I do not gift you with clever conversation,
cute remarks to be laughed over and repeated.
I do not giveyou answers to your everyday questions,responses over my well-being,sharing
my needs or comments about the world about me.
I do not give you rewards as defined by the worlds standards -
great strides in development that you can credit yourself.
I do not give understanding as you know it.
What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character,not mine;
the depth of your love,your commitment,your patience,your abilities;
the opportunity to explore your spirit more deeply that you imagined possible.
I drive you further than you would ever go on your own,
working harder,seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf,I need to go to the bathroom,oh,Ive dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you aware of your great fortune,
Your healthy back and legs,your ability to do for yourself.
Sometimes people appear not to notice me;I always notice them.
I feel not so much envy as desire,desire to stand upright,
to put one foot in front of the other,to be independant.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impared
I dont learn easily,If you judge me by the worlds measuring stick.
What I do know is infinite joy in simple things.
I am not burdened as you are with thestrifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impared.
I am the disabled child.
I am your Teacher
If you will allow me,I will teach you what is really important in life.
I will give you and teach you unconditional love.
I give you with my innocent trust,my dependancy upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
someone posted this through my letterbox and I had to share it with you as meant a lot to me.It is so true,how a disabled child completely re-defines your life and who you are.having a disabled child is such hard work and at the same time such a rich and beautiful blessing.
I am the Child who cannot talk.
You often pity me,I see it in your eyes.
You wonder how much I am aware of - I see that as well,
I am aware of much - whether you are happy,sad or fearful,
patient or unpatient,full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration,knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation,so complete it is at times.
I do not gift you with clever conversation,
cute remarks to be laughed over and repeated.
I do not giveyou answers to your everyday questions,responses over my well-being,sharing
my needs or comments about the world about me.
I do not give you rewards as defined by the worlds standards -
great strides in development that you can credit yourself.
I do not give understanding as you know it.
What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character,not mine;
the depth of your love,your commitment,your patience,your abilities;
the opportunity to explore your spirit more deeply that you imagined possible.
I drive you further than you would ever go on your own,
working harder,seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf,I need to go to the bathroom,oh,Ive dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you aware of your great fortune,
Your healthy back and legs,your ability to do for yourself.
Sometimes people appear not to notice me;I always notice them.
I feel not so much envy as desire,desire to stand upright,
to put one foot in front of the other,to be independant.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impared
I dont learn easily,If you judge me by the worlds measuring stick.
What I do know is infinite joy in simple things.
I am not burdened as you are with thestrifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impared.
I am the disabled child.
I am your Teacher
If you will allow me,I will teach you what is really important in life.
I will give you and teach you unconditional love.
I give you with my innocent trust,my dependancy upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
someone posted this through my letterbox and I had to share it with you as meant a lot to me.It is so true,how a disabled child completely re-defines your life and who you are.having a disabled child is such hard work and at the same time such a rich and beautiful blessing.
Saturday 8 November 2008
forgot to say...
........Seraphina is next in Sheffield to see the surgeon and Gastro on 27th November along with samuel who gets the results of his biopsies...its her birthday,what a way to spend it.Cant believe our little cherub will be 2!!
We are going to try and transfer some of her care nearer to home now as it takes us 2-3 hours to get to sheffield from the midlands depending on traffic.Neurology is being transferred to Birmingham Childrens as thats the nearest tertiary centre to us.Hope they are good there as I havent had much experience with Birmingham and wouldnt touch Leicester Royal or their PICU with a barge pole!(makes me shudder to think of it after Seri's disgusting experience there when he was 4 months old - I still think they are to blame for some of Seri's neuro damage!)
Anyway the next appt is in University Hospital Coventry to be fitted for glasses on the 26th........hope they do pink ones :-D
We are going to try and transfer some of her care nearer to home now as it takes us 2-3 hours to get to sheffield from the midlands depending on traffic.Neurology is being transferred to Birmingham Childrens as thats the nearest tertiary centre to us.Hope they are good there as I havent had much experience with Birmingham and wouldnt touch Leicester Royal or their PICU with a barge pole!(makes me shudder to think of it after Seri's disgusting experience there when he was 4 months old - I still think they are to blame for some of Seri's neuro damage!)
Anyway the next appt is in University Hospital Coventry to be fitted for glasses on the 26th........hope they do pink ones :-D
where we are now
Just realised its been a few weeks since I updated Seri's blog....so much has happened.
Ok firstly she had her 3rd Fundoplication.Heres an 'update post' from another site that I posted when she came out
Seraphinas surgery took longer this time than expected because her liver and stomach were stuck together and the surgeon had to separate them so what I was told would only take 3 hours actually took 5...I was getting quite worried in the end wondering what had happened. Anyway she went to PICU (paediatric intensive care unit) in the end with arterial line,cannula,jugular line and picc line plus ordinary cannula in her foot want realy prepared for all those needles but fine when they explained them.It was hard going back to a picu after the time when she was so poorly and ventliated and I must admit it did freak me out, walking in there bought it al back. They were brilliant in there though and really looked after her.She had to have a catheter fitted as she wasnt weeing but they said that could be down to the anaesthetic and morphine drip.She needed morphine for 4 days in the end ,along with diclofenac,paracetamol and diazepam as she was really feeling the pain this time round but is now just having paracetamol. We are on antibiotics for a staph aureus infection in her Gastrostomy and one of her incision sites opened up again but they seem to be doing the trick..they gave them IV first to get them into her system. To start with she wouldnt tolerate her feed and so they rested her ut for 3 day in the end but shes now on 45 mls per hour so only another 20mls to go to get to her usual 65mls per hour. The only other hiccup was one day when she decided she just didnt want to breathe she kept having apnoeas and her respiration rate was 10 ...so they wanted to take her back to PICU to keep an eye on her as she was doing this even on 1.5 litres of oxygen.Thankfully by the afternoon whatever it was had passed and she was breathing better. she did have some fun whilst being in there though....as shes lost weight and also grown taller and stretched out her splints dont fit any more so the man came to re-plaster her legs for new ones.....and Seraphina tried to 'help' him ROFL..by the end of the procedure there was plaster of paris everywhere!!! even her feeding tubes were plastered lol.Dont think hed been helped that way before...good job he was fairly easy going,the room looked like a bomb site! They will be ready to pick up on 27th October when Sam has his surgery so we will get them then...they are bright yellow this time and going to try and get some stickers to go on them. I will take a pic when she has them Anyway thats about it, shes home (still refluxes but minimal) and just got to build her up a bit now and get rid of her infection .
Then unfortunately she came down with a gastro bug which really knocked her back.Poor sausage.meanwhile Samuel (her 4yr ols brother and felow refluxer lol) went in hospital to have colonoscopy,endoscopy and PH run done.Got back from that and poor Seri had come down with a pneumonia so ended up last Saturday morning taking her to the hospital.They put her on two different lots of antibiotics which shenhas just finished.Still not back to her old self though.
She got weighed yesterday.....and has lost 10lb in weight!!!!(12lb in total if you count the but she lost before fundo).Was quite shocked...so was the dietician.Sheffield have been informed and the dietician phoned me and we are to feed her continuously now over 24 hours and hopefully she will maintain her weight(or even better put weight on!).The only concern they said is that feeding continuously has an effect on liver function ,but they are going to look into it and let me know next week what the effects are likely to be.
the other thing that has been mentioned by nurses/dietician etc is Seri going into a hospice now for weekends :-(.I know its probably the wrong impression but I associate hospices with dying kids and it just made me shiver at the thought.I have told them i wouldnt consider it at the moment. I KNOW we are knackered...exhausted even (this is the 5th week sleeping on the floor downstairs) but at the end of the day its not Seri's fault shes disabled and requires so much care so why should she be sent away.The nurse has also asked if we know of anyone medically trained who could give us a couple of hours respite in the home every now and again....I dont know of anyone though.Might ask at Church but dont think there are any nurses and thats who it would have to be because of her feeding tubes and suction machine etc.
Well better go and run my sweetheart a bath...have been to lush and bought her some 'ickle baby angel' bath ballistics so she can have a lovely lavender bath as Daddy is home so we can bath her between us and then be moisturised with Lush dream cream.Sure she'll enjoy that!
Heres a pic of her in her wheelchair before she got poorly
Wednesday 8 October 2008
well its time..
have just started packing ready to leave for Sheffield tomorrow morning...my little sweetheart is on the afternoon list for surgery.They are going to re-do her fundoplication for the third time in 12 months.
Its funny,this will be her 8th surgery in total and it doesnt get any easier at all,Im more aprehensive this time I guess because so much hangs in the balance,I know that its more risky this time round because she has scar tissue from the previous ops but also, shes been through so much already and she NEVER reacts well to surgery,it always knocks her back a lot.They've not siad how long she'll be in for this time...dont think they dare as the last time was meant to be a couple of days and instead turned into 4 weeks!
If anyone does read this,I just want you to know how wonderful and brave my little fighter is,how she overcomes every obsticle thats put in her way,how truly amazing she is....
......... Seraphina,my darling,I hope one day you will read this and know how much your Mummy loves you and how damn proud she is of you,you are truly my little miracle xxx
well I better get on with packing our stuff up ready to go as we have an early start...I hope my next post will say what a success the Op has been this time.
Its funny,this will be her 8th surgery in total and it doesnt get any easier at all,Im more aprehensive this time I guess because so much hangs in the balance,I know that its more risky this time round because she has scar tissue from the previous ops but also, shes been through so much already and she NEVER reacts well to surgery,it always knocks her back a lot.They've not siad how long she'll be in for this time...dont think they dare as the last time was meant to be a couple of days and instead turned into 4 weeks!
If anyone does read this,I just want you to know how wonderful and brave my little fighter is,how she overcomes every obsticle thats put in her way,how truly amazing she is....
......... Seraphina,my darling,I hope one day you will read this and know how much your Mummy loves you and how damn proud she is of you,you are truly my little miracle xxx
well I better get on with packing our stuff up ready to go as we have an early start...I hope my next post will say what a success the Op has been this time.
Friday 3 October 2008
stop the world!!
Just had a phonecall from the community nurse.Shes trying to get things organised.Because Seraphina has so many professionals involved shes trying to get her a key worker.She said that Seraphina may not do as well as we hope and we need to be prepared for that,then was talking about another OT referral,IDS etc etc....BUT I DONT FEEL READY FOR THIS!!!.I DONT WANT TO THINK ABOUT HER NOT DOING WELL!!!
I came off the phone shaking and just wanted to cry.I just want all of this to be a bad dream.
I came off the phone shaking and just wanted to cry.I just want all of this to be a bad dream.
Monday 29 September 2008
so many mixed feelings
Its been a tough day today,didnt start out well I suppose because I was up from 1am...for a change it wasnt with Seraphina.On the contrary it was me...horrible vivid flashbacks of her traumatic birth,then the ventilation at 4 months,seeing her turn deep blue and rescusitating her...just loads of images that wouldnt go away,like I was replaying it all in my mind all over again. Made me feel so totally sick.I know why this has started again...its aways the same before she has surgery...Im not as bad as I used to be though,it used to be that every time I heard a siren and saw an ambulance with lights flashing I would just go cold and want to cry.Now its not so much.
Anyway then out of the blue I had a phonecall from the neurology specialist who has agreed to take over as Seri's local consultant.She had her notes in front of her and we had a long chat about the fact that I had a long list of symptoms but no diagnosis for Seri.She then went on to explain (very nicely) that Seraphina had Cerebral Palsy but generally neurologists dont like using that term as its so broad and so instead just deal with the separate conditions such as stiffness, developmental delay etc etc.
I have to say that during this conversation I felt physically faint,like I was going to pass out.I think it was just that on the one hand you have your suspicions but when someone actually confirms them then it suddenly seems so 'real' in a wierd kind of way.
Literally 5 mins after that conversation the speech and Language therapist and the Community Nurse turned up.........that was the most surreal thing,just having these appointments and chatting about possible extensions to the house to accomodate a downstairs bedroom and bathroom and that Seri may need a hoist eventually.I could hear myself speaking but as if from a distance,like an onlooker instead of a participant.freaky.
I still dont think its sunk in,I know it hasnt I suddenly have a thousand questions.....WILL she walk,talk even eat like other people?.Will she be able to look after herself? Ultimately only time will tell I guess but i so feel the need to know NOW, at least that she'll do ok.
and ultimately WHAT IF Id managed to keep her inside a little longer?,what if my body had done what it was supposed to?...................................I feel I have let her down.
Anyway then out of the blue I had a phonecall from the neurology specialist who has agreed to take over as Seri's local consultant.She had her notes in front of her and we had a long chat about the fact that I had a long list of symptoms but no diagnosis for Seri.She then went on to explain (very nicely) that Seraphina had Cerebral Palsy but generally neurologists dont like using that term as its so broad and so instead just deal with the separate conditions such as stiffness, developmental delay etc etc.
I have to say that during this conversation I felt physically faint,like I was going to pass out.I think it was just that on the one hand you have your suspicions but when someone actually confirms them then it suddenly seems so 'real' in a wierd kind of way.
Literally 5 mins after that conversation the speech and Language therapist and the Community Nurse turned up.........that was the most surreal thing,just having these appointments and chatting about possible extensions to the house to accomodate a downstairs bedroom and bathroom and that Seri may need a hoist eventually.I could hear myself speaking but as if from a distance,like an onlooker instead of a participant.freaky.
I still dont think its sunk in,I know it hasnt I suddenly have a thousand questions.....WILL she walk,talk even eat like other people?.Will she be able to look after herself? Ultimately only time will tell I guess but i so feel the need to know NOW, at least that she'll do ok.
and ultimately WHAT IF Id managed to keep her inside a little longer?,what if my body had done what it was supposed to?...................................I feel I have let her down.
Wednesday 24 September 2008
A light at the end of the tunnel!
Well Seraphina has lost another half kilo and Phoned Sheffield to let them know...later that day I had a phone call to say her Op had been moved onto the emergency list and was going to be on the 9th October!!! so only two weeks to wait :-).Im counting down the days now as its all turning into a bit of a slog.David (bless him) slept downstairs with her last night as she was REALLY unsettled and to be honest al shes done today is cry again :-( cant be much fun for her and she sounds like her throat is getting really sore again.
I so hope that the Op works this time,Im not even letting myself think about the possibility that it doesnt.
So a good positive step forward,now all we have to do is hope she doesnt lose too much weight in the meantime and keep her away from any bugs.
I so hope that the Op works this time,Im not even letting myself think about the possibility that it doesnt.
So a good positive step forward,now all we have to do is hope she doesnt lose too much weight in the meantime and keep her away from any bugs.
Monday 22 September 2008
Yawn!
Another night with only 2 hours sleep....am starting to need shares in Red bull!!
Last nights entertainment was provided by Seraphina-no sleep and Samuel who is intollerant to dairy and wheat and was found with his head in a box of Weeto's this equalled lots of tummy ache and runny nappies of the sort that require a plastic carrier bag to stop them dripping on the stairs on the way down.....sorry if TMI just needed you to feel ma' pain LOL!
Phoned Sheffiled today as requested and let them know she'd lost another half kilo this week :-( Nurses said if she keeps this up she'll classify as failure to thrive!).
No-ones phoned back yet today but i guess the surgeon could have been in clinic /surgery all day,who knows.
I REALLY hope someone moves her date for surgery forward soon as I dont know how much more of this I can take.............sooooooo tired
Last nights entertainment was provided by Seraphina-no sleep and Samuel who is intollerant to dairy and wheat and was found with his head in a box of Weeto's this equalled lots of tummy ache and runny nappies of the sort that require a plastic carrier bag to stop them dripping on the stairs on the way down.....sorry if TMI just needed you to feel ma' pain LOL!
Phoned Sheffiled today as requested and let them know she'd lost another half kilo this week :-( Nurses said if she keeps this up she'll classify as failure to thrive!).
No-ones phoned back yet today but i guess the surgeon could have been in clinic /surgery all day,who knows.
I REALLY hope someone moves her date for surgery forward soon as I dont know how much more of this I can take.............sooooooo tired
Friday 19 September 2008
Time is running out..
5pm
Its been a stressful afternoon.The dieticians are not happy with Seraphina and told me to phone Sheffield before they did.Seraphina should be having as a minimum 1200 kcal per day but at the moment she is only able to tolerate 700.She should also be having her feed pump running at 65ml per hour.....shes only managing 50mls over 18 hours and is still being sick and dumping.I have lost count of the amount of nappies she has had today...she has just started back on 5 antibiotics too and so there is poo everywhere (well it feels like it!).So its highly likely that she will still be losing weight and if this continues she will get dehydrated fairly quickly.
I have phoned Sheffield,whose Theatre lists are jam packed apart from a possible space on the 9th October (but the parents havent decided aboout whether to proceed with surgery or not yet).The sec told me that Mr Marven is aware of how Seri is and will try and move it forward.She also told me that she wants a recent weight of Seri....shes lost 1.5kilos so far and she was last weighed 2 weeks ago.If she has lost weight again....which is quite likely,then the Secretary thinks they will probably end up taking her in and doing the fundo as an emergency.
What a horrible situation to be in :-( I just hope they manage to get her in soon BEFORE she gets too poorly...I dont want her to have to have a femoral line in again just to hydrate her.
I just feel like the clock is ticking and if something doesnt happen soon then she is going to be one poorly girl.
Its been a stressful afternoon.The dieticians are not happy with Seraphina and told me to phone Sheffield before they did.Seraphina should be having as a minimum 1200 kcal per day but at the moment she is only able to tolerate 700.She should also be having her feed pump running at 65ml per hour.....shes only managing 50mls over 18 hours and is still being sick and dumping.I have lost count of the amount of nappies she has had today...she has just started back on 5 antibiotics too and so there is poo everywhere (well it feels like it!).So its highly likely that she will still be losing weight and if this continues she will get dehydrated fairly quickly.
I have phoned Sheffield,whose Theatre lists are jam packed apart from a possible space on the 9th October (but the parents havent decided aboout whether to proceed with surgery or not yet).The sec told me that Mr Marven is aware of how Seri is and will try and move it forward.She also told me that she wants a recent weight of Seri....shes lost 1.5kilos so far and she was last weighed 2 weeks ago.If she has lost weight again....which is quite likely,then the Secretary thinks they will probably end up taking her in and doing the fundo as an emergency.
What a horrible situation to be in :-( I just hope they manage to get her in soon BEFORE she gets too poorly...I dont want her to have to have a femoral line in again just to hydrate her.
I just feel like the clock is ticking and if something doesnt happen soon then she is going to be one poorly girl.
Hmmmm
Well,have just had a phonecall from RMS who are ordering her 'New Bug' wheelchair system.They gave me the quotation for total cost and asked for 50% deposit.I paid them and then said i qwould give them the date that I needed the buggy for (next trip to Sheffield)....is actually the 26th but I didnt want to leave it too late so said 24th October.The Rep had previously said that it wouldnt be a problem......well apparently this lady has just told me that they come from Italy and are taking a good 8 weeks to arrive!!!!!grrrrrrr!
I did politely explain that a condition of the sale WAS that i get it by 24th which is why I had checked and double checked.Anyway we left it that she would do her best to get it quickly and if there was going to be any delay then she would let us know.
I really hope they can get it to us in time....I REALLY dont want her to be having her fundo done again and then have to slump in the curent pushchair as its going to be SOOOO painful for her,she needs the support and I dont want her to be in any more unneccesary pain.
Have just had our feeding supplies delivered and once again we have no correct Jejunostomy button.....well no button at all although the delivery note says it should be there!Can you tell im not surprised....we seem to be having so many problems with these buttons and the delivery people at the moment its untrue.
Well I suppose I ought to make a start on the mammoth ironing pile which seems to have bred overnight....Seraphina is asleep,she seems to have developed a habit of thinking that 5.30am is time to get up which,after being up in the night as well means she needs a nap by 9am.Wish i could join her :-)
I did politely explain that a condition of the sale WAS that i get it by 24th which is why I had checked and double checked.Anyway we left it that she would do her best to get it quickly and if there was going to be any delay then she would let us know.
I really hope they can get it to us in time....I REALLY dont want her to be having her fundo done again and then have to slump in the curent pushchair as its going to be SOOOO painful for her,she needs the support and I dont want her to be in any more unneccesary pain.
Have just had our feeding supplies delivered and once again we have no correct Jejunostomy button.....well no button at all although the delivery note says it should be there!Can you tell im not surprised....we seem to be having so many problems with these buttons and the delivery people at the moment its untrue.
Well I suppose I ought to make a start on the mammoth ironing pile which seems to have bred overnight....Seraphina is asleep,she seems to have developed a habit of thinking that 5.30am is time to get up which,after being up in the night as well means she needs a nap by 9am.Wish i could join her :-)
Thursday 18 September 2008
Good news and bad news
mixed day today really.....first the good news, after what seems like forever we have now,through people raising money for us,got the £2300 needed to fund Seraphinas wheelchair....we had a recommendation for it from the regional posture and mobility centre who asessed her and saw that she still cant sit on her own and what they discribe as 'low tone', but the Local wheelchair clinic wouldnt pay for it!. Anyway the Rep came out today and it is ordered!!!!! so should be with us in 4 weeks and on the more worrying side.... Seraphina has been developing more and more of a squint over the last 6-12 months and went for a review today at hospital.Apparently her test results show that its likely she has damage to the right visual side of the brain and has lost some of her left field of vision.They also think she is extremely short sighted and commented that she seems to hold her head to one side when looking at something...apparently this can be a way of them compensating for loss of vision field PLUS they think there might be some damage left over from when she had retinopathy . They want her to see a consultant and go to London (somewhere called Moorlands) for an EDT.....apparently it measures the brains response to visual stimulus.They said it would fit in with a diagnosis of Cerebral palsy (the whole Hemi thing again)....they want this to happene next 4 weeks they said 'in order to try and preserve as much of her vision as possible!!!!!' .NOT at all what I was expecting to happen today so it looks like we have another hurdle to overcome now.
Well I have finally got round to posting on a proper 'Blog' for Seraphina.I have transferred all her old diary posts her and hope to keep up a regular record,both for darling Seri to look back on and also for all those people who have followed her story from the begining,supported us along the way eg Claires and her friends on Eurobabes (no I havent forgotten your kindness),march club girls,sweet Hazel (love ya!),Vickie,all on LWR,my lifeline!,Penny and Nicci and my friends at MCBC and more recently Ailbhe and Rob.
We have finally come home again after another lengthier than expected stay...Seri had 3 of her salivery glands clipped off and her Jejunostomy tube replaced for a jej button.She is still 100% pump fed as she cannot swallow properly and unfortunately despite 2 fundoplications is STILL sick and aspirates.
After a lengthy chat with her surgeon it has been decided not to go for the Oesogastric separation op yet but instead do the fundoplication again for a 3rd time.we know that this is not without its risks but we feel we owe it to little Seri to give her another chance...it might work this time,who knows.
She has been wearing splints and Gaiters on her legs to try and get her to stand properly with her heels on the floor but its not having too much success at the moment.her spasms however are pretty well controlled with Baclofen (a muscle relaxant).The next step is a stander and gait trainer to try and help her balance.
22 December 2007
Just had to add this one final picture for now.Its of my litte sweetie as an angel and done by a company called www.enhance-me.com.Brilliant!
22 December 2007
So...the latest on you is that you are on4 medications to control your reflux,one for gut motility,you wear patches of medicine behind you ears which need changing every 3 days...this reduces the saliva production as you aspirate and choke on your own saliva and you have been started on a muscle relaxant to stop your muscles going into spasm.You have something called Hemisyndrome and the Neurology team say you will go on to get label of full Cerebral palsy and not just hemiplegia.You also have started to have fits.The doctors dont fully understand why you are so oxygen dependant although your EEG shows abnormalities between the left and right side of the brain. Clinical Genetics think you may have some sort of rare syndrome and we have to go back to get the results of this after christmas.You do have your special chair now and so you can finally sit up and play.Unfortunately they have said they can fund you special pushchair which is SOOOO disappointing as you have most of your life threatening events whist in there as you cant sit up.We are fighting to try and raise the £3000 neede to get it for you.I pray that we will manage to do it before too long.This is you in your special chair...sorry its sideways LOL
22 December 2007
You have had 2 surgeries up in Sheffield Childrens to try and cure your nasty reflux..they were called fundoplications and they basically wrap the stomach around itself and create an artificial oesphageal spyncter ....you had one on the 13th Sept and you ended up in ICU after this one and one on the 19th Sept as it had not worked.In total 9.5 hours of surgery....and the result,it failed too :-(.You still have awful reflux and you are still having life threatening events where you choke and stop breathing.This is you after your first Op
You have had 2 surgeries up in Sheffield Childrens to try and cure your nasty reflux..they were called fundoplications and they basically wrap the stomach around itself and create an artificial oesphageal spyncter ....you had one on the 13th Sept and you ended up in ICU after this one and one on the 19th Sept as it had not worked.In total 9.5 hours of surgery....and the result,it failed too :-(.You still have awful reflux and you are still having life threatening events where you choke and stop breathing.This is you after your first Op
22 December 2007
Havent looked at this diary for sometime as my little Seraph has been in and out of hospitals ..as far away as Sheffield,which is now where we have to travel to on a regular basis to get her treatment done and see the many specialists involved in hr care...Looking back over this diary I can see how far you have come and also where there are gaps in entries because things were so traumatic at the time.Like back in March when you came out of special care....I had you home just 3 days before you stopped breathing for the first time and then another 2 weeks before that dreadful morning when you stopped 3 times in my arms one after another which lead to you boing taken first to our local hospital ,then university hospital by ambulance transfer and then I watched as you needed repeated rescusitation until they finally decided that you would be better off on a ventilator.My heart nearly broke but I knew I had to keep it together for you and so I asked not to be separated from you and they let me gown up and go down to theatre whilst they intubated you.It wasnt a nice thing to watch....they have to give you drugs to paralysed you and sedate you and so when they got to that point they asked me whether I wanted to give you a kiss goodbye before they did it and I looked into your eyes and wondered at that point if I would ever see you awake again.I told you that I loved you and wouldnt leave you whatever happened and you seemed to understand,then they gave you the drugs and put the tube down.Then you were transferred by patient recovery unit to Leicester Royal Infirmary intensivecare unit.Here you are in ICU
21 November 2007
Pic taken at Babyworld meet today of my little sweetheart Seri xx almost 1 now hunny :-)
22 July 2007
What do I say at the moment? That my heart breaks for you,that I cant bear the thought of ever being in this life without you?or that your little smile is the only thing that keeps me going...WHY cant the doctors give me some proper answers?The thought that you may not make it to your first birthday fills me with dreadand I think thats beyond anything I can bear!I HATE all these stupid tubes but know thats whats keeping you alive.How i wish that you could feed from a bottle and breathe without oxygen and all the paraphanalia that comes with it.I just want my little Seri to be 'normal',want to be able to pick you up and walk around with you,put you in your sling without worrying about where your connectors will go or how much oxygen is in your cylinders!We named a star after you today..Seraphina star is in the constalation of Pegasus (front left foot LOL!),got the location and everything so I can see your star shining on me every night :-).Your dedication is provisionally booked for the 26th August,just hoping you are not in hospital again,but thats impossible to predict I know.You dont know how much I wish i had been able to keep you in for longer and how much I blame myself for all this suffering you are going through.All I can say is Im so SO sorry darling and if there was anything i could do to alter this then I would.I just feel so helpless ....I dont think I can go on living if you arent there with me ,hang on sweetheart.I pray the doctors will have some briliant idea about how to put you right.I love you SOOOO much darling one.Mummy
What do I say at the moment? That my heart breaks for you,that I cant bear the thought of ever being in this life without you?or that your little smile is the only thing that keeps me going...WHY cant the doctors give me some proper answers?The thought that you may not make it to your first birthday fills me with dreadand I think thats beyond anything I can bear!I HATE all these stupid tubes but know thats whats keeping you alive.How i wish that you could feed from a bottle and breathe without oxygen and all the paraphanalia that comes with it.I just want my little Seri to be 'normal',want to be able to pick you up and walk around with you,put you in your sling without worrying about where your connectors will go or how much oxygen is in your cylinders!We named a star after you today..Seraphina star is in the constalation of Pegasus (front left foot LOL!),got the location and everything so I can see your star shining on me every night :-).Your dedication is provisionally booked for the 26th August,just hoping you are not in hospital again,but thats impossible to predict I know.You dont know how much I wish i had been able to keep you in for longer and how much I blame myself for all this suffering you are going through.All I can say is Im so SO sorry darling and if there was anything i could do to alter this then I would.I just feel so helpless ....I dont think I can go on living if you arent there with me ,hang on sweetheart.I pray the doctors will have some briliant idea about how to put you right.I love you SOOOO much darling one.Mummy
17 July 2007
Tonight I just want to say I love you sweetheart.I love the way you fight when things are tough.I love the way that even when you are poorly in hospital.you always have a smile for me.Keep fighting darling.
Tonight I just want to say I love you sweetheart.I love the way you fight when things are tough.I love the way that even when you are poorly in hospital.you always have a smile for me.Keep fighting darling.
5 June 2007
well we are heading for another two hospital stays now.Walsgrave this week and Birmingham childrens next week.Things arent looking so good at the moment and now you have pulled out your Nasojujenal tube things are even more complicated!You are trialing NG feeds at the moment and its so hard to see you struggling and in pain.I do so hope that these new doctors can sort you out..or even just make you more comfortable.
well we are heading for another two hospital stays now.Walsgrave this week and Birmingham childrens next week.Things arent looking so good at the moment and now you have pulled out your Nasojujenal tube things are even more complicated!You are trialing NG feeds at the moment and its so hard to see you struggling and in pain.I do so hope that these new doctors can sort you out..or even just make you more comfortable.
29 May 2007
Just wanted to say how much I love my little cherub.You are 6 months old now (exact day was Sunday...Pentecost)Went to Church on Sunday and prayed that God would bless you especailly this Pentecost and that he would stay as close to you as He has done so far,bringing you through this last 6 months.I still wish that you could see me but that along with everything else is in Gods hands.I just feel so blessed to have you and love just holding you and snuggling you close.
Just wanted to say how much I love my little cherub.You are 6 months old now (exact day was Sunday...Pentecost)Went to Church on Sunday and prayed that God would bless you especailly this Pentecost and that he would stay as close to you as He has done so far,bringing you through this last 6 months.I still wish that you could see me but that along with everything else is in Gods hands.I just feel so blessed to have you and love just holding you and snuggling you close.
22 May 2007
thought Id add some pictures of my little cherub now shes home with us again.Cant believe how much she has gone through already.Well sweetie ,you are now NJ fed through a pump 22 hours a day and have your medicines through an NG tube.Its quite a full time job,but you are so worth it.You have just started smiling and it is the most gorgeous smile that makes my heart melt.You cannot really see much,only light and dark ,but you love hearing the sound of your mummy's voice xxx.At the moment you have so many problems and the doctors think that maybe your brain isnt working like it should so you need to go to a special hospital so they can try and find out what exactly is wrong and help you,dont worry though as Mummy will be with you all the time.well here is a picture of all your equipment that you have by your little crib
6 May 2007
heres another picture of you with a special teddy that Carla sent you.You werent very happy yesterday as when we aspirated your NG tube you had lots of blood there.They have increased your Omeprazole and hopefully that should make things better your PH was 1.5 which is very low so it looks like the acid had made your tummy bleed.
6 May 2007
cant believe how much has happened recently.We so very nearly lost you due to bad reflux causing chest infections,bradycardia and apnoeas.Lost count how many times you were rescusitated.In the end you had to be intubated and spent 8 days on a ventilator and other things as your kidneys stopped working properly and you were all swollen up with fluid.You are now breathing on your own but your EEG results say your brain isnt working properly so you have had more bloods taken and we have to wait up to 4 weeks for the results!.Mummy and Daddy have been learning how to NJ feed you with a feed pump.YOu also have an NG tube for medicines as you cant have anything orally now as its too dangerous.I wish you were home with me...I miss you so much and I miss you looking 'normal'without all the tubes.We only get to see your little face properly when we change the tapes,its sad
5 April 2007
Finally another picture of my little cherub at home.She has had a rough few days which ended up with me taking her to the doctors this afternoon.He has prescribed suppositories for her as she wasnt going poo even with lactulose.We are trying a hypoallergenic formula too to see if that settles her down as she is really colicky,constipated and reflux is bad...photo taken just after she filled her nappy....is that a smile of relief LOLOL!
14 March 2007
O my,Dh has just come back from special care and LOOK!!!!!!!.I cant believe it....NO TUBES!!!! I jsut cant believe it.I didnt expect to see this for a while yet...they were saying she was going to come home on Oxygen!...WOW!.Hope she manages to stay like this but Oh isnt she GORGEOUS!!!!!!!!!
14 March 2007
Well so far so good.She is back on nasal cannulas now and seems to be coping.She has also been moved out of intensive care YAY!.Saw the speech and lang therapist yeaterday who confirmed basically what I knew already... that she has a weak suck and hasnt got a good suck breathe swallow reflex at all ,hense her aspirating on feeds etc.She also saw her desat continually after to feed which she also attributed to reflux.Apparently the on duty consultant is going to speak to Seris consultant about starting her on Domperidone and ranitidine for the reflux.They also talked to me about her coming home on Oxygen as this is looking more and more likely now.ROP wise she is still grade 2,so no worse there.As for me,well after spending 3 days on absolute agony with a headache which turned into a migraine I went back to the GP today and he has stopped the Maxalon tablets (headache now gone!) and started me on Domperidone to try and increase my milk supply.I took the first one this morning and at lunchtime I expressed 30mls!!! a big improvement to the 2.5mls-10mls I was getting :-) fel quite happy about that.Doc has given me a 2 weeks supply and said that if they work he is quite happy to give me more.Heres hoping the increase continues as I would really like to keep my milk going a bit longer.Have been really stressed about Vaccinations after I found out what was in them.DH and I are going to have a chat tonight about what to do.Its so hard to know what to do for the best as I dont thing either choice is great.At the moment my instinct is to wait now until she is 4 months corrected age before giving her the last set.Def woulsnt give them in 2 weeks time which is when she is due.The life of a parent is not an easy one!Well I better go....its really sunny outside and my Ellas house pink girly hemp nappies have come and time to hang them out on the line!! hee hee.I really must get a life...fancy being cheered by the sight of freshly washed nappies blowing in the breeze LOL!
Well so far so good.She is back on nasal cannulas now and seems to be coping.She has also been moved out of intensive care YAY!.Saw the speech and lang therapist yeaterday who confirmed basically what I knew already... that she has a weak suck and hasnt got a good suck breathe swallow reflex at all ,hense her aspirating on feeds etc.She also saw her desat continually after to feed which she also attributed to reflux.Apparently the on duty consultant is going to speak to Seris consultant about starting her on Domperidone and ranitidine for the reflux.They also talked to me about her coming home on Oxygen as this is looking more and more likely now.ROP wise she is still grade 2,so no worse there.As for me,well after spending 3 days on absolute agony with a headache which turned into a migraine I went back to the GP today and he has stopped the Maxalon tablets (headache now gone!) and started me on Domperidone to try and increase my milk supply.I took the first one this morning and at lunchtime I expressed 30mls!!! a big improvement to the 2.5mls-10mls I was getting :-) fel quite happy about that.Doc has given me a 2 weeks supply and said that if they work he is quite happy to give me more.Heres hoping the increase continues as I would really like to keep my milk going a bit longer.Have been really stressed about Vaccinations after I found out what was in them.DH and I are going to have a chat tonight about what to do.Its so hard to know what to do for the best as I dont thing either choice is great.At the moment my instinct is to wait now until she is 4 months corrected age before giving her the last set.Def woulsnt give them in 2 weeks time which is when she is due.The life of a parent is not an easy one!Well I better go....its really sunny outside and my Ellas house pink girly hemp nappies have come and time to hang them out on the line!! hee hee.I really must get a life...fancy being cheered by the sight of freshly washed nappies blowing in the breeze LOL!
10 March 2007
Well the last few days have been hell on earth quite honestly.Seraphina deteriorated fast with this nasty MRSA bug and then it was found that she also had bronchiolitis and pneumonia bug.It was so horrible watching her struggling to breathe and coughing so much she was completely winded and went blue,desatting down to 19%.she then started having bad apnoeas and when the Consultant cme to see her he said that she needed to be re ventilated and to withdraw feedings and give TPN as whatever she was being given she was vomiting back.She was requiring suctioning out as well which the poor darling didnt like but she was producing SOOO much mucus it was unbelievable.When she breathed she sounded (and still does) like a bowl of rice crispies as she was crackling and wheezing so much.she sat on my lap for a cuddle and then just turned puce and her little eyes were bulging as she couldnt clear her airways.I have virtually lived at the hospital not daring to move as they werent sure that she would pull through this time as she had so many bugs to fight AND unfortunately she had been given her second lot of imms literally just before she came down with this bug.Today was the first day that they could say to me she had 'officially' been recognised as stable, on CPAP thankfully now.she is still looking very poorly and washed out and I know that we are by no means out of the woods yet,but we have cause to hope...something which we didnt have a couple of days ago.she is also tolerating very small amounts of feeds every 2 hours.I have also started expressing milk for her again after a 2 week break..this was becaue even though she hadnt had anything but bottles for quite some time now (albeit with EBM in)when she had her last cuddle before being reventilated,she tried to latch on to my T-shirt!.The nurse asked if I would like to put her next to my bare breast for comfort and she actually did try and latch on to me and suck,bless her! That told me that she when she was so poorly she wanted to comfort of being close to her mummy and she was trying SOO hard to look at me,like she was trying to tell me that thats what she wanted.Well after that I started leaking bits of milk again and started to express again today...only getting v.small amounts but every little helps and I am taking Fenugreek capsules and fennel tea to try and build up my supply again (if anyone out there knows of any other tips I am open to any info I can get LOL!).I guess at the end of the day I felt a bit pushed into giving up any way and it just goes against all my natural instincts as a parent.As long as there is milk there she can have it.Well its little Seris due date today...we had a little Party for her and took in biscuits for the staff.They were really nice and congratulated me and her for getting to her due date :-)....15 weeks old and just reaching her due date LOL! sounds really odd...and WHAT a 15 weeks!!.Think the staff are all amazed that she has survived so far as she has had an absolute hellish ride.They were contemplating yesterday ligating her PDA and ASD anyway but didnt think she could withstand the Op thankfully she has stabilised without them doing that so far but they have said she now has 'loud abnormal heart sounds' whatever that means...cant really think too far ahead now as I'll drive myself mad with worry.Just taking one day at a time and praying that she will grow stronger.Thanks to everyones good wishes and especial thanks to sweet Vickimother off my antenatal club for keeping everyone informed for me xxx
Well the last few days have been hell on earth quite honestly.Seraphina deteriorated fast with this nasty MRSA bug and then it was found that she also had bronchiolitis and pneumonia bug.It was so horrible watching her struggling to breathe and coughing so much she was completely winded and went blue,desatting down to 19%.she then started having bad apnoeas and when the Consultant cme to see her he said that she needed to be re ventilated and to withdraw feedings and give TPN as whatever she was being given she was vomiting back.She was requiring suctioning out as well which the poor darling didnt like but she was producing SOOO much mucus it was unbelievable.When she breathed she sounded (and still does) like a bowl of rice crispies as she was crackling and wheezing so much.she sat on my lap for a cuddle and then just turned puce and her little eyes were bulging as she couldnt clear her airways.I have virtually lived at the hospital not daring to move as they werent sure that she would pull through this time as she had so many bugs to fight AND unfortunately she had been given her second lot of imms literally just before she came down with this bug.Today was the first day that they could say to me she had 'officially' been recognised as stable, on CPAP thankfully now.she is still looking very poorly and washed out and I know that we are by no means out of the woods yet,but we have cause to hope...something which we didnt have a couple of days ago.she is also tolerating very small amounts of feeds every 2 hours.I have also started expressing milk for her again after a 2 week break..this was becaue even though she hadnt had anything but bottles for quite some time now (albeit with EBM in)when she had her last cuddle before being reventilated,she tried to latch on to my T-shirt!.The nurse asked if I would like to put her next to my bare breast for comfort and she actually did try and latch on to me and suck,bless her! That told me that she when she was so poorly she wanted to comfort of being close to her mummy and she was trying SOO hard to look at me,like she was trying to tell me that thats what she wanted.Well after that I started leaking bits of milk again and started to express again today...only getting v.small amounts but every little helps and I am taking Fenugreek capsules and fennel tea to try and build up my supply again (if anyone out there knows of any other tips I am open to any info I can get LOL!).I guess at the end of the day I felt a bit pushed into giving up any way and it just goes against all my natural instincts as a parent.As long as there is milk there she can have it.Well its little Seris due date today...we had a little Party for her and took in biscuits for the staff.They were really nice and congratulated me and her for getting to her due date :-)....15 weeks old and just reaching her due date LOL! sounds really odd...and WHAT a 15 weeks!!.Think the staff are all amazed that she has survived so far as she has had an absolute hellish ride.They were contemplating yesterday ligating her PDA and ASD anyway but didnt think she could withstand the Op thankfully she has stabilised without them doing that so far but they have said she now has 'loud abnormal heart sounds' whatever that means...cant really think too far ahead now as I'll drive myself mad with worry.Just taking one day at a time and praying that she will grow stronger.Thanks to everyones good wishes and especial thanks to sweet Vickimother off my antenatal club for keeping everyone informed for me xxx
9 March 2007
1amJust phoned the hospital and they have done bloods and put in a cannula.They are also reducing fluids as she is puffing up and they think she her heart may be failing due to the holes she has in her heart.They said they will get the blood results in an hour or so and take it from there.
1amJust phoned the hospital and they have done bloods and put in a cannula.They are also reducing fluids as she is puffing up and they think she her heart may be failing due to the holes she has in her heart.They said they will get the blood results in an hour or so and take it from there.
9 March 2007
Dont really know what to say,its 12.45am and I have just come back from the hospital where I have been all day.Have had to come back for a break and to keep going for the others but I feel wide awake.Seraphina is SOOO poorly.When I left she had just had another chest xray and she was just about to have bloods done.She just keeps desatting down to 30-40% and even as low as 19%,several times a minute.At the moment they dont know whats causing it and she has this horrendous cough as well.She hasnt been able to sleep all day as she cant get comfortable and even when she does close her eyes she starts another bad coughing episode which wakes her up again.She looks totally fed up and worn out and with each hour that passes she is getting visibly weaker.I feel so helpless tonight.She has fought so hard for so long,please God dont let her go now.
Dont really know what to say,its 12.45am and I have just come back from the hospital where I have been all day.Have had to come back for a break and to keep going for the others but I feel wide awake.Seraphina is SOOO poorly.When I left she had just had another chest xray and she was just about to have bloods done.She just keeps desatting down to 30-40% and even as low as 19%,several times a minute.At the moment they dont know whats causing it and she has this horrendous cough as well.She hasnt been able to sleep all day as she cant get comfortable and even when she does close her eyes she starts another bad coughing episode which wakes her up again.She looks totally fed up and worn out and with each hour that passes she is getting visibly weaker.I feel so helpless tonight.She has fought so hard for so long,please God dont let her go now.
7 March 2007
Yesterday was Seraphinas 100th day birthday at SCBU.She had a 'birthday' card and a Certificate from the staff andwe bought her a big heart shaped helium balloon with 100 days written on it and also a pink sash with princess written on in gold which she had on her cot.Unfortunately she got ver poorly VERY quickly yesterday and we had a phonecall from scbu to say that she had had to go back in an incubator as she was struggling to breathe...I thought it might be bronchiolitis and asked them but they took swabs and it came back as MRSA :-(I have just been in this afternoon and she has been taken back into intensive care as she is very unstable.When i had just arrived she desatted down to 19%!!!I thoughtshe was going to die as she lay there all grey and looked like a dead baby,no colour ,no movement no nothing *sob*.I will be going in this evening to sit with her as will DH.My poor baby seems to go from one crisis to the next and I wonder if I will ever get her home
Yesterday was Seraphinas 100th day birthday at SCBU.She had a 'birthday' card and a Certificate from the staff andwe bought her a big heart shaped helium balloon with 100 days written on it and also a pink sash with princess written on in gold which she had on her cot.Unfortunately she got ver poorly VERY quickly yesterday and we had a phonecall from scbu to say that she had had to go back in an incubator as she was struggling to breathe...I thought it might be bronchiolitis and asked them but they took swabs and it came back as MRSA :-(I have just been in this afternoon and she has been taken back into intensive care as she is very unstable.When i had just arrived she desatted down to 19%!!!I thoughtshe was going to die as she lay there all grey and looked like a dead baby,no colour ,no movement no nothing *sob*.I will be going in this evening to sit with her as will DH.My poor baby seems to go from one crisis to the next and I wonder if I will ever get her home
28 February 2007
Well this morning was really good (despite me stressing all night and feeling sick at the thought of this meeting LOL!).Glad that I had Helen Pope as the Nurse in the meeting as she is much more organised than some of the others and gets things noted down etc.Basically the plan now is to introduce Nutriprem 2 to her feeds,so one EBM and one Nutriprem until my stocks run out.then she will be formula fed.They are FINALLY going to get a barium swallow done YAY!!! so mylittle sweetheart can have her reflux treated.The plan is to do the barium and then start her on Domperidone and Ranitidine (phew! what a relief that will be!).I will be glad when thats done as i was so scared of having to go through what I did with Samuel all over again...desats,mouth to mouth etc*shudder*.ROP seems no real change so they are going to keep reviewing every week.Heart...well the plan is to sit on it and see what happens.They can operate if they need to but TBH she isnt too bad at the moment.I think her main problem is the reflux.They are going to try and wean her off the oxygen now but are aware that a) it might not work and so she would need to come home on oxygen and B)she would still need oxygen for feeds.Just a case of waiting and seeing on that one.They have also decided to get the speech and language therapist to come in (Jane Sudden)as she has a very unco-ordinated suck/swallow/breathe reflex so that is not helping her feed.Last night she desatted down to 20%!!.On a good note they have said that she can have a bath!!! so they want to arrange a time with David and myself to come in and bath her :-)one to film I think!!shes going to ahve her next lot of imms either this week or next too,cant believe shes 3 months old already!Oh and she is now relatively non puffy and weighs 6lb 1.5oz!!!! what a whopper.She is starting to look more and more like little Eve now,think shes probably going to have the same attitude LOL!Brain scans have also shown nothing of real concern,there is no guarantee as she is still at risk at 25 weeks of Cerabal palsy learning difficulties etc so once again just wait and see.Helen also got me a print out of what she has written from this meeting with the consultant so that I can refer to it.All in all pretty good and feel much more aware of whats going on and cvlear what the next steps are.Keep fighting my little angel...mummy is SO proud of you!!
Well this morning was really good (despite me stressing all night and feeling sick at the thought of this meeting LOL!).Glad that I had Helen Pope as the Nurse in the meeting as she is much more organised than some of the others and gets things noted down etc.Basically the plan now is to introduce Nutriprem 2 to her feeds,so one EBM and one Nutriprem until my stocks run out.then she will be formula fed.They are FINALLY going to get a barium swallow done YAY!!! so mylittle sweetheart can have her reflux treated.The plan is to do the barium and then start her on Domperidone and Ranitidine (phew! what a relief that will be!).I will be glad when thats done as i was so scared of having to go through what I did with Samuel all over again...desats,mouth to mouth etc*shudder*.ROP seems no real change so they are going to keep reviewing every week.Heart...well the plan is to sit on it and see what happens.They can operate if they need to but TBH she isnt too bad at the moment.I think her main problem is the reflux.They are going to try and wean her off the oxygen now but are aware that a) it might not work and so she would need to come home on oxygen and B)she would still need oxygen for feeds.Just a case of waiting and seeing on that one.They have also decided to get the speech and language therapist to come in (Jane Sudden)as she has a very unco-ordinated suck/swallow/breathe reflex so that is not helping her feed.Last night she desatted down to 20%!!.On a good note they have said that she can have a bath!!! so they want to arrange a time with David and myself to come in and bath her :-)one to film I think!!shes going to ahve her next lot of imms either this week or next too,cant believe shes 3 months old already!Oh and she is now relatively non puffy and weighs 6lb 1.5oz!!!! what a whopper.She is starting to look more and more like little Eve now,think shes probably going to have the same attitude LOL!Brain scans have also shown nothing of real concern,there is no guarantee as she is still at risk at 25 weeks of Cerabal palsy learning difficulties etc so once again just wait and see.Helen also got me a print out of what she has written from this meeting with the consultant so that I can refer to it.All in all pretty good and feel much more aware of whats going on and cvlear what the next steps are.Keep fighting my little angel...mummy is SO proud of you!!
27 February 2007
Well you are 3 moths old today and still no nearer to coming home.Milk has now dried up after 3 months,you didnt manage to breastfeed and are having difficulty sucking from a bottle.I miss you so much it hurts and I wish you were home with me now,its been too long already.
Well you are 3 moths old today and still no nearer to coming home.Milk has now dried up after 3 months,you didnt manage to breastfeed and are having difficulty sucking from a bottle.I miss you so much it hurts and I wish you were home with me now,its been too long already.
19 February 2007
Heres a picture of my darling babys crib.It has her name embriodered on the covers.you'll have to excuse the half decorated bedroon though LOL!
14 February 2007
Well David got back from the hospital to say that the consultant had come over at 5pm and examined Seraphina and decided that she is to go to a specialist hospital tomorrow for an emergency heart scan with a view to surgery.Reflux wise she needs a barium swallow doing but obviously comes second to the reflux and ROP...well we have to wait and see on that one.Today I have come down with a cold...what bad timing,if its no better by this afternoon it will mean that I wont be able to be with her when she has her scan :-(.Feel so worried today.
Well David got back from the hospital to say that the consultant had come over at 5pm and examined Seraphina and decided that she is to go to a specialist hospital tomorrow for an emergency heart scan with a view to surgery.Reflux wise she needs a barium swallow doing but obviously comes second to the reflux and ROP...well we have to wait and see on that one.Today I have come down with a cold...what bad timing,if its no better by this afternoon it will mean that I wont be able to be with her when she has her scan :-(.Feel so worried today.
13 February 2007
Just feels like everything is being thrown at us at once this week.First of all Seris brain scan is abnormal,still dont know how etc as they still need to talk to the consultant,she also has a pronounced heart murmur again...they think its probably the PDA opened up again and have told me that its unlikely that drugs will work this time as she is 2.5 months and so they are looking at surgery,reflux wise she is awful still only being treted with gaviscon which is a total joke and I have said so.she needs Domperidone whith the desats and sickin episodes shes having and FINALLY today I have been told she has ROP (retinopathy of Prematurity) which in extreme cases can mean blindness.I dont know what grade yet but am led to believe its grade 3 at this stage.Hubby has just gone in to find out whats going on as i have been in hospital all day waiting for the consultant to come accross from WAlsgrave to see her but she didnt turn up!grrrr!I have watched her go blue-grey and floppy in my arms so many times over the last 2 days and each time I feel totally distraught as they turn her oxygen up and she doesnt respond for longer and longer.They snatched her out of my arms today and were rubbing her vigourously to get her going again...I wanted to scream out loud,instead its a silent scream inside as my heart breaks to see her struggling so much.She will soon be 3 months old...and still no nearer to coming home.She wasnt strong enough to breast feed today and doesnt really seem to 'get it' when I do try.Still all I can do is keep expressing.I have decided not to go in tomorrow morning,I came home this evening absolutely shattered (the fact that I have been bleeding for 12 weeks isnt helping)and feeling sick with exaustion and stress.I will spend some time with the others and go in later on.I just know I cant keep this up when I am not well myself even though if i could I would be there every single minute of the day.I hate leaving her but at the same time I know I can do nothing.Keep fighting my little angel I love you so much I think my heart will break if this seperation goes on for too much longer.I pray that God will help you overcome these difficulties you are facing at the moment and give me the strength to keep going and supporting you through it all.I love you ,I love you I love you (((HUGS)))Mummy xx
Just feels like everything is being thrown at us at once this week.First of all Seris brain scan is abnormal,still dont know how etc as they still need to talk to the consultant,she also has a pronounced heart murmur again...they think its probably the PDA opened up again and have told me that its unlikely that drugs will work this time as she is 2.5 months and so they are looking at surgery,reflux wise she is awful still only being treted with gaviscon which is a total joke and I have said so.she needs Domperidone whith the desats and sickin episodes shes having and FINALLY today I have been told she has ROP (retinopathy of Prematurity) which in extreme cases can mean blindness.I dont know what grade yet but am led to believe its grade 3 at this stage.Hubby has just gone in to find out whats going on as i have been in hospital all day waiting for the consultant to come accross from WAlsgrave to see her but she didnt turn up!grrrr!I have watched her go blue-grey and floppy in my arms so many times over the last 2 days and each time I feel totally distraught as they turn her oxygen up and she doesnt respond for longer and longer.They snatched her out of my arms today and were rubbing her vigourously to get her going again...I wanted to scream out loud,instead its a silent scream inside as my heart breaks to see her struggling so much.She will soon be 3 months old...and still no nearer to coming home.She wasnt strong enough to breast feed today and doesnt really seem to 'get it' when I do try.Still all I can do is keep expressing.I have decided not to go in tomorrow morning,I came home this evening absolutely shattered (the fact that I have been bleeding for 12 weeks isnt helping)and feeling sick with exaustion and stress.I will spend some time with the others and go in later on.I just know I cant keep this up when I am not well myself even though if i could I would be there every single minute of the day.I hate leaving her but at the same time I know I can do nothing.Keep fighting my little angel I love you so much I think my heart will break if this seperation goes on for too much longer.I pray that God will help you overcome these difficulties you are facing at the moment and give me the strength to keep going and supporting you through it all.I love you ,I love you I love you (((HUGS)))Mummy xx
10 February 2007
Just wanted to share that my little one had her first 'breastfeed'today.I had to use nipple shields but she got there.The swelling has gone down too now she is back on diuretics...just waiting to see what her brain scan is like now...dont think I'll sleep much tonight.
Just wanted to share that my little one had her first 'breastfeed'today.I had to use nipple shields but she got there.The swelling has gone down too now she is back on diuretics...just waiting to see what her brain scan is like now...dont think I'll sleep much tonight.
6 February 2007
Well my little sweetheart is doing quite well now.I went in on my birthday (2nd Feb) to fine that she was no longer in an incubator! and there ws a little card 'to mummy' from Seraphina there too.I must admit to bursting into tears at the sight of Seraphina looking more 'normal' tucked up in her closed babytherm.Its kind of like a box with a lid which lifts up LOL!.The mattress is heated to keep her warm.She is putting on weight now too as she is 3lb 14.5oz and as you will see from her picture she is looking far more baby-like.Have been trying to breastfeed her but at the moment its pretty much of a non-starter as she constantly falls asleep.Will keep persevering there.Its nice to be able to have her out regularly for a cuddle now as she has 'graduated' to Teddy bear nursery from the intensive care fairy room.Its still so hard going home and leaving her especially when she is snuggled up on your chest...I could quite happily stay there all night!
28 January 2007
Just to give you a sense of scale....how tiny are those hands still!....but so perfect.
28 January 2007
AAAgghhh! I jst dont know what to think should i be happy or sad.Saw the Docs today and Seraphina is now 3lb 2oz (great thought I!) then they go on to tell me that although she is putting on weight (albeit slowly)her head circumference isnt growing which could mean that her brain development isnt normal ???.They said that they wold also expect a baby having so much milk and fortified too to have a weight gain of more than 2oz in a week.Roll on this meeting tomorrow with the consultant is what I say.Wish i didnt have to go on my own but DHs car has broken down again (only had it a week!)so he cant be there.Also they have put her on 2hrly feeds of 22mls and she has spent the entire morning desaturating and heart rate dipping to 60BPM which scared the hell out of me.I have said that I think she is refluxing but think I was ignored....not that I have had 3 severe refluxers already of course!!!Feeling frustrated this afternoon and although I am not looking forward to tomorrows meeting,hopefully it will give me a much needed clearer picture of whats going on.
AAAgghhh! I jst dont know what to think should i be happy or sad.Saw the Docs today and Seraphina is now 3lb 2oz (great thought I!) then they go on to tell me that although she is putting on weight (albeit slowly)her head circumference isnt growing which could mean that her brain development isnt normal ???.They said that they wold also expect a baby having so much milk and fortified too to have a weight gain of more than 2oz in a week.Roll on this meeting tomorrow with the consultant is what I say.Wish i didnt have to go on my own but DHs car has broken down again (only had it a week!)so he cant be there.Also they have put her on 2hrly feeds of 22mls and she has spent the entire morning desaturating and heart rate dipping to 60BPM which scared the hell out of me.I have said that I think she is refluxing but think I was ignored....not that I have had 3 severe refluxers already of course!!!Feeling frustrated this afternoon and although I am not looking forward to tomorrows meeting,hopefully it will give me a much needed clearer picture of whats going on.
27 January 2007
Well,my little cherub has now reached 2 months old.I can hardly believe it,she has come through so much over these last two months.I am so proud of her fighting spirit.She is getting stronger with her breathing now and is ,from today ,doing 7 hours on nasal prongs and 4 hours on CPAP.So the balance is tipped the right way now as she is decreasing the ventilation.We obviously still have concerns regarding her kidneys and this cortisol deficiency but hopefully we should have a plan of care for her on monday.She is becoming much more alert now when awake and trys to focus her eyes on you,they are not wandering quite as much as they used to .Also went and bought her the next size up in babygros today as her legs are looking a bit squashed in the ones she has as they are quite long now...she'll be pleased that she has long legs when shes older LOL!The nurses are going to try and get her out for cuddles a bit more as she hates being touched. She is starting to associate it with pain/someone wanting to do something to her and as soon as they do her heart rate increases and she starts to moan....poor little bunny.I have been coming in every day this week to try and help and stayed much of the day.Not something I can keep up though with another 5 to look after,but its been nice this week ,if a little tiring because i still have retained products and dont feel my best.Will have to try and getr to the doctors again this week....if i have a spare nano second!Well I am off to drink some water before expressing and going to bed so goodbye for now :-)
25 January 2007
ll i have spent most of today up at the neonatal unit with my little angel today.The Doctor wanted to see me to discuss your blood results.Aparently one of the things you have is a Cortisol deficiency (this is a stress hormone which makes you grow) and this may mean that the doctors have to give you artificial cortisol so that you grow normally.They have said you would lead a reasonably normal life though.We are also waiting for the tests to come back on your kidneys as they are concerned that the amount of diuretics you re having may put a strain on them.I held you in my arms again today and it was so lovely feeling your soft little head against me and stroking your hand.You are so perfect...Gods little masterpiece.I looked at the size of your little fingernail and was awestruck that God could make something so small and yet so utterly perfect.You were a bit upset this afternoon as you had to have So many blood tests and examinations done again today.I just put my hand on your little head and whispered a prayer over you and you calmed down so that your SATs settled again.Tomorrow morning i need to go into the NICU for 8.15am as you need an urgent blood transfusion and they need a sample of my blood to cross match before they can transfuse you (your nurse has just phoned to tell me).So I am getting a lift in.Well i better go as i have to check on your brother ,he has been in A&E all afternoon/evening as he fell and hit his head at school and knocked himself out and they were considering doing an MRI scan because he cant remember anything.Not a good birthday present!Night night,God bless xx
ll i have spent most of today up at the neonatal unit with my little angel today.The Doctor wanted to see me to discuss your blood results.Aparently one of the things you have is a Cortisol deficiency (this is a stress hormone which makes you grow) and this may mean that the doctors have to give you artificial cortisol so that you grow normally.They have said you would lead a reasonably normal life though.We are also waiting for the tests to come back on your kidneys as they are concerned that the amount of diuretics you re having may put a strain on them.I held you in my arms again today and it was so lovely feeling your soft little head against me and stroking your hand.You are so perfect...Gods little masterpiece.I looked at the size of your little fingernail and was awestruck that God could make something so small and yet so utterly perfect.You were a bit upset this afternoon as you had to have So many blood tests and examinations done again today.I just put my hand on your little head and whispered a prayer over you and you calmed down so that your SATs settled again.Tomorrow morning i need to go into the NICU for 8.15am as you need an urgent blood transfusion and they need a sample of my blood to cross match before they can transfuse you (your nurse has just phoned to tell me).So I am getting a lift in.Well i better go as i have to check on your brother ,he has been in A&E all afternoon/evening as he fell and hit his head at school and knocked himself out and they were considering doing an MRI scan because he cant remember anything.Not a good birthday present!Night night,God bless xx
24 January 2007
I want my baby home!Have had such a bad day today,not been feeling at all positive and everywhere I look seems to be women with new babies.Seraphina is 8 weeks old (almost) and all i can think about is the time with her that i have lost.Couldnt bring myself to phone the unit today until 5pm as I was so scared that I would receive yet more bad news.when i eventually did phone I didnt get any results so still dont know whats going on.I miss my baby so much.I am getting SO sick of expressing milk every 3-4 hours and I KNOW logically that its the best I can do for her etc etc but HONESTLY...most new mums have the pleasure of their newborns snuggling into them and are able to stroke their soft heads and smell that lovely newborn smell as they suckle .Me,I get the plastic artificalness of a breat pump and the impersonal sound of an alarm waking me instead of the cry of my baby. I AM SICK OF IT!!!I WANT to be able to cuddle her and feel her soft skin against mine,I want to be able to pick her up when I want instead of having to ask for permission.I want to feel like shes my baby instead of 'on loan' for the time I go in.I want to feel like I have given birth instead of feeling the grief that one would normally associate with miscarriage.I guess I still grieve for the pregnancy that never was,that was terminated before its time.I must sound so over emotional.I guess its the glass of wine I have had this evening which is enabling me to let these feelings out....what a lightweight eh !Most of the time its easier to just get on with it all and not think about how I am feeling.David has gone in to see Seri tonight as i couldnt get a babysitter and Joseph is hyper as its his birthday tomorrow.Hes 9...cant believe the time has gone so quickly.Well I suppose i better go... breast pump calls...again!
I want my baby home!Have had such a bad day today,not been feeling at all positive and everywhere I look seems to be women with new babies.Seraphina is 8 weeks old (almost) and all i can think about is the time with her that i have lost.Couldnt bring myself to phone the unit today until 5pm as I was so scared that I would receive yet more bad news.when i eventually did phone I didnt get any results so still dont know whats going on.I miss my baby so much.I am getting SO sick of expressing milk every 3-4 hours and I KNOW logically that its the best I can do for her etc etc but HONESTLY...most new mums have the pleasure of their newborns snuggling into them and are able to stroke their soft heads and smell that lovely newborn smell as they suckle .Me,I get the plastic artificalness of a breat pump and the impersonal sound of an alarm waking me instead of the cry of my baby. I AM SICK OF IT!!!I WANT to be able to cuddle her and feel her soft skin against mine,I want to be able to pick her up when I want instead of having to ask for permission.I want to feel like shes my baby instead of 'on loan' for the time I go in.I want to feel like I have given birth instead of feeling the grief that one would normally associate with miscarriage.I guess I still grieve for the pregnancy that never was,that was terminated before its time.I must sound so over emotional.I guess its the glass of wine I have had this evening which is enabling me to let these feelings out....what a lightweight eh !Most of the time its easier to just get on with it all and not think about how I am feeling.David has gone in to see Seri tonight as i couldnt get a babysitter and Joseph is hyper as its his birthday tomorrow.Hes 9...cant believe the time has gone so quickly.Well I suppose i better go... breast pump calls...again!
23 January 2007
Been in this morning and she is about the same really but have had a chat with the Docs about her as they were waiting to see me today.Apparently they have been doing some tests on her and presumed that I knew all about it and had okayed it all (feel like I am constantly playing catch up!)They have been unable to reduce the diuretics she is on because they say that her lungs are so damaged that if they reduced them she would 'puff up' (great!) a result of this is that they have put strain on her kidneys and they think they might have been damaged.Their is also more to the fortifier/failing to grow than I previously thought.Apparently they have got a second opinion on her from another consultant and they are testing the level of growth hormone as they said there is a condition where they dont have enough/not the right balance and this 'condition' leads them to not grow as they should???thats all I know ...oh,apart from the fact that because they have been taking so much blood from her recently they have done a full blood count because she may need another transfusion (no surprise there though!)Will update when I can...not really sure WHAT to think now though!Well thats what I posted on the antenatal club this afternoon.I just dont know what to think.One minute shes up and the next minute slapped right back down again.Have contacted Bliss family support helpline today and they are going to try and match me up with another parent who has had a baby at this gestation.Just need to be able to talk to someone who has gone through this and come out the other side,someone human LOL!
Been in this morning and she is about the same really but have had a chat with the Docs about her as they were waiting to see me today.Apparently they have been doing some tests on her and presumed that I knew all about it and had okayed it all (feel like I am constantly playing catch up!)They have been unable to reduce the diuretics she is on because they say that her lungs are so damaged that if they reduced them she would 'puff up' (great!) a result of this is that they have put strain on her kidneys and they think they might have been damaged.Their is also more to the fortifier/failing to grow than I previously thought.Apparently they have got a second opinion on her from another consultant and they are testing the level of growth hormone as they said there is a condition where they dont have enough/not the right balance and this 'condition' leads them to not grow as they should???thats all I know ...oh,apart from the fact that because they have been taking so much blood from her recently they have done a full blood count because she may need another transfusion (no surprise there though!)Will update when I can...not really sure WHAT to think now though!Well thats what I posted on the antenatal club this afternoon.I just dont know what to think.One minute shes up and the next minute slapped right back down again.Have contacted Bliss family support helpline today and they are going to try and match me up with another parent who has had a baby at this gestation.Just need to be able to talk to someone who has gone through this and come out the other side,someone human LOL!
19 January 2007
seem to have spent most of the last 48hrs at the unit.There are concerns that her kidneys arent functioning properly so they are measuring using output and running more tests on Monday as its the weekend now so cant do them.What do I say...the nurses have all been fantastic and very concerned.Seri, you have so many people trying to do the best for you at the moment...you even have 2 nurses looking after you at the moment...very spoilt.Its just so hard watching you struggle so much.All i could do was clean round your little mouth and talk to you to calm you after your latest round of blood tests.I feel totally exausted tonight,just cant sleep though.I feel like my heart is going to burst with love for you little darling,just wish I could share some of it with you through cuddling you and just holding you close...its all so un-natural and goes against your instincts.When you are at your most poorly is when I must not touch you,just adds to the feeling of utter helplessness.I jsut pray that these antibiotics kick in this evening and there is some improvement..some glimmer of light breaking through this seemingly eternal night.It seemed wierd somehow today coming out of the queit of the neonatal unit to see the hustle and bustle of normality going on outside...when inside my babe is fighting to live...like everything should somehow stop.Please God when the sun rises in the sky tomorrow may it also mark the start of your recovery darling Seraphina xx
seem to have spent most of the last 48hrs at the unit.There are concerns that her kidneys arent functioning properly so they are measuring using output and running more tests on Monday as its the weekend now so cant do them.What do I say...the nurses have all been fantastic and very concerned.Seri, you have so many people trying to do the best for you at the moment...you even have 2 nurses looking after you at the moment...very spoilt.Its just so hard watching you struggle so much.All i could do was clean round your little mouth and talk to you to calm you after your latest round of blood tests.I feel totally exausted tonight,just cant sleep though.I feel like my heart is going to burst with love for you little darling,just wish I could share some of it with you through cuddling you and just holding you close...its all so un-natural and goes against your instincts.When you are at your most poorly is when I must not touch you,just adds to the feeling of utter helplessness.I jsut pray that these antibiotics kick in this evening and there is some improvement..some glimmer of light breaking through this seemingly eternal night.It seemed wierd somehow today coming out of the queit of the neonatal unit to see the hustle and bustle of normality going on outside...when inside my babe is fighting to live...like everything should somehow stop.Please God when the sun rises in the sky tomorrow may it also mark the start of your recovery darling Seraphina xx
18 January 2007
I feel so angry at the utter helplessness of the situation.The hospital phoned in the early hours of this morning but couldnt get through as they had an incorrect number but contacted my DH to say that Seraphinas condition had deteriorated fast.They thnk that the likelyhood is that she has picked up another infection and had started her on antibiotics.The blood cultures take 48 hours though and so they cant be sure.I have been with her all day and she has been going downhill all day.She is now no longer coping well with CPAP and they have said that if she gets too tired and needs re-ventilating then she will have to be transferred out to another unit.She looks grey in colour and her sats are dipping regularly to the 60's.Her sugar levels are dangerously high even though they have withdrawn feeds and they are putting up a potassium drip as that is too low.She looks SOO tired this evening and when she looked at me this evening as they were doing yet another load of bloods ...well, she just looked like she had had enough.she didnet even have the strength to hold onto my finger.I just cant stop the tears from falling this evening.I feel so helpless and yet again so guilty that I couldnt protect her from all this.They are taking more bloods at 6pm this evening because one of the antibiotics is toxic and so they need to monitor the levels in her blood.I cant type anymore I am just SOO gutted.I dont want to lose my little angel I love her so much and its killing me watching her suffer like this.Her is a ppicture of my sweetheart before this nasty bug hit...she is SOO gorgeous and so fr
14 January 2007
Just look at my lovely daughter!! this is the latest picture,taken this evening by Daddy.She is still doing well and is managing the 6hours on 6hours off rota and is now on 8.5-9mls of feed per hour!Isnt she the most beautiful baby you have ever seen!...well I think so LOL!One very proud mummy xx
13 January 2007
Well its been a while but I feel more up to writing here again.You have had a really rough ride over the last few days but on Tuesday night the nurses thought you had turned a corner.I went in twice again and cuddled you and on the second visit they let me try and put you to the breast for the first time ...just to see what you would do.Well it turned out that you knew EXACTLY what you were meant to do and tried really hard to latch on.Even though you didnt make it there was a lot of lip smacking going on which showed that given time you would manage it!I was really proud of you :-).Since then you have improved and we celebrated you reaching the grand weight of 1kg!!.Yesterday afternoon you were transferred to George Eliot SCBU which is a great step forward.They were really pleased with you and so was I.Today I went in and spent the whole afternoon with you which was great AND you are now 2lb 8.5oz!!!!!! what a little fatty LOL!.You are changing so fast now and have even grown a bit of a bottom (which you didnt have before!).The nurses were trying you with 6 hours onCPAP and 6 hours on nasal cannulars to see if you could cope .the hope is that if you are settled for 24/48hrs on that then they will try 7hours on 7 hours off etc and gradually wean you off CPAP that way.Your SATs have been a little wobbly today but not too bad,your temp has been equally wobbly but they think that could be down to the transfer yeserday and you should hopefully settle down over the next 24hrs.Cant wait to go in and see you tomorrow now...its great that you are so much nearer...only a 20min walk away!.I also bought a twin pushchair yesterday that your brother and sister are going to use while you are in hospital but when you come home you will be able to go in it with your brother...its a Phil and Teds E3 in a lovely apple green...I even have the carrycot ready for you ...cant wait till you are in it...in the meantime your brother and sister can 'test drive'it for you LOL!Wasnt able to take your piccy today unfortunately as I got the camera there only to find that the batteries were flat..will try and take one of you tomorrow so that I can show all my BW friends what a cutie you are :-).Well I better go...breast pump calls and so does my bed.Night night sweetie!
Well its been a while but I feel more up to writing here again.You have had a really rough ride over the last few days but on Tuesday night the nurses thought you had turned a corner.I went in twice again and cuddled you and on the second visit they let me try and put you to the breast for the first time ...just to see what you would do.Well it turned out that you knew EXACTLY what you were meant to do and tried really hard to latch on.Even though you didnt make it there was a lot of lip smacking going on which showed that given time you would manage it!I was really proud of you :-).Since then you have improved and we celebrated you reaching the grand weight of 1kg!!.Yesterday afternoon you were transferred to George Eliot SCBU which is a great step forward.They were really pleased with you and so was I.Today I went in and spent the whole afternoon with you which was great AND you are now 2lb 8.5oz!!!!!! what a little fatty LOL!.You are changing so fast now and have even grown a bit of a bottom (which you didnt have before!).The nurses were trying you with 6 hours onCPAP and 6 hours on nasal cannulars to see if you could cope .the hope is that if you are settled for 24/48hrs on that then they will try 7hours on 7 hours off etc and gradually wean you off CPAP that way.Your SATs have been a little wobbly today but not too bad,your temp has been equally wobbly but they think that could be down to the transfer yeserday and you should hopefully settle down over the next 24hrs.Cant wait to go in and see you tomorrow now...its great that you are so much nearer...only a 20min walk away!.I also bought a twin pushchair yesterday that your brother and sister are going to use while you are in hospital but when you come home you will be able to go in it with your brother...its a Phil and Teds E3 in a lovely apple green...I even have the carrycot ready for you ...cant wait till you are in it...in the meantime your brother and sister can 'test drive'it for you LOL!Wasnt able to take your piccy today unfortunately as I got the camera there only to find that the batteries were flat..will try and take one of you tomorrow so that I can show all my BW friends what a cutie you are :-).Well I better go...breast pump calls and so does my bed.Night night sweetie!
8 January 2007
Havent the heart to write much except I am SOO sorry you are stuggling again.I loved holding my little angel on Saturday and feeling your little body cuddled up to me,our first lot of Kangaroo care.I am so worried about you now s yesterday you were too unstable to move and you seemed SO tired.The Doctors have run some tests but I dont yet know the results..I truly hope they can find out whats going on with you,whether its another infection or what.I miss you sweetheart and long to have you home but at the moment that seems such an age away.
5 January 2007
Maybe I'm losing it .I just feel constantly tired and my emotions are all over the place.Been on my antiatal club and everyone is getting ready for their babies,decorating nursery and generally getting excited...something I didnt get chance to do and dont really feel I can now because everything is so uncertain.I did pluck up the courage to order a beautiful white crib from Gremany today which will come with Seraphinas name on it.....and now spending the rest of the day upset and stressing incase something happens to her and she never gets the chance to lie in it!.I feel so cheated that I had my baby early,this is the last baby too and I wanted it to be special,instead I feel like my pregnancy was taken from me.Everyone else celebrates the birth of a baby with cards and gifts etc etc...I had one card this time which wasnt even a birth congratulations card,just a note saying they were thinking of us....no other cards,flowers or gifts at all like with all my others. Do people think shes not worth it or something. Even my own mother said she hadnt sent a card because there wasnt anything to celebrate! It all just seems to compound the guilt I feel as if Ive done something wrong.The only bit of joy I have had is my dear friend Claire from a previous antenatal club made an adorable little baby gro for her and also sent some other prem clothes for her :-) everyone else has just completely ignored the fact Ive even had a baby!I probably sound like a right bitch but its just that you have hopes and dreams of an ideal pg and wonderful birth (I was going to cut the cord this time as Ive never done it!) and visualise you coming home feeling proud with your little baby and instead its like living a nighmare from day to day,while your baby struggles to survive and there is NOTHING you can do to change any of it.I soo miss feeling my little bub kicking away inside me and I am SOO jealous of every pg woman I see with a beautiful expanding bump Sorry this has turned into so much of a moan.Am going in this evening to see my angel,just hope for some good news...if I dont post it will be because we've had another set back and I hate all the struggles you are going through.
Maybe I'm losing it .I just feel constantly tired and my emotions are all over the place.Been on my antiatal club and everyone is getting ready for their babies,decorating nursery and generally getting excited...something I didnt get chance to do and dont really feel I can now because everything is so uncertain.I did pluck up the courage to order a beautiful white crib from Gremany today which will come with Seraphinas name on it.....and now spending the rest of the day upset and stressing incase something happens to her and she never gets the chance to lie in it!.I feel so cheated that I had my baby early,this is the last baby too and I wanted it to be special,instead I feel like my pregnancy was taken from me.Everyone else celebrates the birth of a baby with cards and gifts etc etc...I had one card this time which wasnt even a birth congratulations card,just a note saying they were thinking of us....no other cards,flowers or gifts at all like with all my others. Do people think shes not worth it or something. Even my own mother said she hadnt sent a card because there wasnt anything to celebrate! It all just seems to compound the guilt I feel as if Ive done something wrong.The only bit of joy I have had is my dear friend Claire from a previous antenatal club made an adorable little baby gro for her and also sent some other prem clothes for her :-) everyone else has just completely ignored the fact Ive even had a baby!I probably sound like a right bitch but its just that you have hopes and dreams of an ideal pg and wonderful birth (I was going to cut the cord this time as Ive never done it!) and visualise you coming home feeling proud with your little baby and instead its like living a nighmare from day to day,while your baby struggles to survive and there is NOTHING you can do to change any of it.I soo miss feeling my little bub kicking away inside me and I am SOO jealous of every pg woman I see with a beautiful expanding bump Sorry this has turned into so much of a moan.Am going in this evening to see my angel,just hope for some good news...if I dont post it will be because we've had another set back and I hate all the struggles you are going through.
5 January 2007
Just thought Id add another picture of my little angel.Daddy went in last night and saw you,the nurses were pleased with you yesterday and you looked really snuggly in your little vest and dress.
4 January 2007
Gosh Ive had a really down day today.One of those days were I woke up feeling stressed and the day just got worse.Kids have punched a hole in the wall separating one bedroom from another (throught the plasterboard)by playing Kung foo,pulled the curtains off the rail and someone (suspicious it may well be my 3yr old)crushed up my new Elizabeth Arden lipstick and hid it in a toy watering can :-(.I guess thats not really why I am starting to feel so depressed though...I now have thrush (again)I finish the antibiotics tonight but I am sure its not helping my mood,and worst of all I have a nasty sore throat which (once again) is preventing me going to the NICU.When we do go in though DH has to drive me in the evening and as we have no-one to babysit we have to trail all 5 children with us...that in itself wouldnt be too bsd if they were all able to play quietly but...with two children with special needs (ie autistic spectrum disorders and ADHD) its a total nightmare!!!Have been lurking about the BW March club on and off all day,reading the messages,just dont feel i can really reply to them as not Pg anymore so the excitement of getting nearer to the birth and gettingn things ready doesnt apply to me...I still cant get anything ready as unlike those who are pregnant ,I STILL dont know whether my little one will make it :-(The other main topic of conversation is baby bumps and how big/small they are and whether they are too big etc.This is probably going to sound SOO bitchy (though its not meant that way) but I would kill to still have a bump of ANY shape or form and wouldnt moan what size I was,Id just rejoice that my baby was still safely tucked away and not fighting for dear life and having tubes stuck down its throat and needles stuck into it several times a day!!!!.....It jsut seems so pointless.Here I go blubbling all over the place again,what an emotional wreck I am. I appologise to anyone reading this entry,its not meant to sound so nasty and over emotional,Im just having a really bad day.Off to sob somewhere else
Gosh Ive had a really down day today.One of those days were I woke up feeling stressed and the day just got worse.Kids have punched a hole in the wall separating one bedroom from another (throught the plasterboard)by playing Kung foo,pulled the curtains off the rail and someone (suspicious it may well be my 3yr old)crushed up my new Elizabeth Arden lipstick and hid it in a toy watering can :-(.I guess thats not really why I am starting to feel so depressed though...I now have thrush (again)I finish the antibiotics tonight but I am sure its not helping my mood,and worst of all I have a nasty sore throat which (once again) is preventing me going to the NICU.When we do go in though DH has to drive me in the evening and as we have no-one to babysit we have to trail all 5 children with us...that in itself wouldnt be too bsd if they were all able to play quietly but...with two children with special needs (ie autistic spectrum disorders and ADHD) its a total nightmare!!!Have been lurking about the BW March club on and off all day,reading the messages,just dont feel i can really reply to them as not Pg anymore so the excitement of getting nearer to the birth and gettingn things ready doesnt apply to me...I still cant get anything ready as unlike those who are pregnant ,I STILL dont know whether my little one will make it :-(The other main topic of conversation is baby bumps and how big/small they are and whether they are too big etc.This is probably going to sound SOO bitchy (though its not meant that way) but I would kill to still have a bump of ANY shape or form and wouldnt moan what size I was,Id just rejoice that my baby was still safely tucked away and not fighting for dear life and having tubes stuck down its throat and needles stuck into it several times a day!!!!.....It jsut seems so pointless.Here I go blubbling all over the place again,what an emotional wreck I am. I appologise to anyone reading this entry,its not meant to sound so nasty and over emotional,Im just having a really bad day.Off to sob somewhere else
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