From a lady called Helen who is our Cardiac Liaison Nurse at GOSH.
She was lovely and explained a lot to me and gave me a lot of information over the phone. I had to note it all down so I would remember it all to tell Ian, so now I will just transcribe my note to here so then I won't forget bits when I speak to anyone about it as hopefully you'll read it hear :)
Helen is our Cardiac Liaison Nurse and she is there to support us through everything :) operations, interim, home checks and anything in between.
She explained to me that after the first operation there can be complications, but she will be teaching us what signs and symptoms to look for and monitor. She will also give us life support training before Emily can come home so that should she stop breathing or anything equally as horrible, we will be able to provide life support until an ambulance/help arrived.
Helen told me that when we bring Emily home, GOSH will lend us some equipment for home monitoring. Helen will train us how to use the machine and will be making provisions for home monitoring for us.
She reassured me that if I end up giving birth in Peterborough, when it was time for Emily to be transferred to GOSH, there would be a special team of doctors and nurses in the ambulance and organising the transfer. Helen did also ask me to prepare myself that should I give birth in Peterborough but then be unable (for medical reasons) to travel to GOSH with Emily that Ian could go with Emily and I would have to follow. Hoping this won't be the case but it is a good thing to be prepared and to know that this could happen.
If I am induced in London then this will happen at UCH, which is close to GOSH. If the induction path is decided on then we will get to go meet the team there and have a look around.
Helen told me about the family accommodation at GOSH. We know that for the worst part there will be accomodation for both Ian and I. Once Emily is recovering from the first surgery and when is on a normal ward (not intensive care or high dependency) then they can only guarantee accommodation for one of us, but we can deal with that when the time comes.
Oh, she told me that if I planned to breastfeed that there is a clinic there who will be able to support and help me with this. Most heart babies do struggle with feeding as it is hard work for them, but Helen has told me there will be help there for me if I need it and that they can support me with expressing milk for Emily for as long as I can and such. They will store the milk for me and give to Emily :) I really wanted to breastfeed, she needs as much goodness and help as she can :)
The last bit of news is a bit of a biggie. As Ian and I are not married, only I can give consent for Emily's operations and treatment. Helen advised us to talk to Dr Sullivan about this as, should there be a situation where I am not there/able to give consent, there may need to be something in place that means the responsibility is passed to Ian. Whether I will sign something, who knows.
We've also arranged that after our next fetal echo in March, we will meet up with Helen and she will show us around the ward and we can have a big chat then too.
It really was a massive information overload! I'm feeling a bit more positive but also a lot more scared..... I'm so pleased we have heard from Helen though and it feels more like things are happening and we haven't been forgotten :)
We've made a list of things we need to buy leading up to the birth, only the basics, so that we have them all ready. I'm really looking forward to finishing work at the end of this week and making pretty things for the nursery and finishing the decorating.
Things are okay :)
xxxx
24 January 2011
23 January 2011
Busy Sunday!
So today I got up early after a night of very interrupted sleep. I either woke up needing to wee really badly or woke up due to just being in pain!
I put some dinner in the slow cooker for this evening and then poked Ian until he agreed to help me with cleaning and tidying upstairs :-)
We've accomplished a lot today! Emily's nursery now only has nursery things in it and I have banned Kiki cat from entering the nursery room. She seemed to have made herself quite a little home in the car seat and crib!!! So after hoovering the cat hair out of everything, I have arranged it all neatly and the room is now ready for me to finish decorating and organising when I am off work :-)
I've now just got to make some dumplings for the stew and then later finish icing yet more boredom cupcakes ;)
Feeling okay and really looking forward to making things for the nursery and finishing it off. I'm thinking it is better to prepare for bringing our baby home rather than not preparing and ending up having to rush around doing things to be ready for her. If she doesn't end up coming home then we will deal with that then. xxx
I put some dinner in the slow cooker for this evening and then poked Ian until he agreed to help me with cleaning and tidying upstairs :-)
We've accomplished a lot today! Emily's nursery now only has nursery things in it and I have banned Kiki cat from entering the nursery room. She seemed to have made herself quite a little home in the car seat and crib!!! So after hoovering the cat hair out of everything, I have arranged it all neatly and the room is now ready for me to finish decorating and organising when I am off work :-)
I've now just got to make some dumplings for the stew and then later finish icing yet more boredom cupcakes ;)
Feeling okay and really looking forward to making things for the nursery and finishing it off. I'm thinking it is better to prepare for bringing our baby home rather than not preparing and ending up having to rush around doing things to be ready for her. If she doesn't end up coming home then we will deal with that then. xxx
17 January 2011
Square one? No maybe square two....
So all of a sudden today I feel like I am back to square two. Not square one, because I haven't started having doubts about our decision, I'm more absolutely petrified.
I'm struggling with having to wait for scans and decisions. I trust our doctors and midwives and I know that once they have the information they need then they will be able to advise the best way forward for Emily's birth. I'm really hoping that the decision will be that I will be induced in London. I want to be in the right place for Emily, I want to know that as soon as she is born that the surgeons and specialists doctors will be there. I don't have anything against Peterborough hospital, but with all the stress and worry surrounding her birth already, I feel that for her to have to be transferred by ambulance to London for specialist care, well to me that just doesn't make sense.
Our estimated due date is 29th April, the date of the royal wedding. Around that time London is going to be even more of a nightmare than usual, there's already talks of rail strikes on the wedding bank holiday and also the May day bank holiday.
I was feeling so okay. I have been having some strange dreams, which when I wake up I can't remember but then later in the day something triggers me to remember. Last night I dreamt that I could feel and see Emily kicking me and it became quite forceful, I could see her hand pushing me from the inside, like a little handprint on my tummy but then she started coming through like she was trying to get out.
I was sat at my desk when I remembered this and just felt like I was about to cry or just lose it really. I know that the vivid dreams and such are a part of being pregnant, I just wish they wouldn't play on my negative sub-concious so much!!
I want to be positive and to a certain extent I am most days. I want to be happy and I think that I am. I am happy that we are having Emily and I promise myself everyday that we will do whatever is best for her when she arrives. I can't wait to meet her and treasure every moment we have with her.
Today is just one of those days where I'm scared, worried, nervous, stressed...... The list of emotions could go on forever I guess.
Sorry for the rubbish post, I just had to get this out somewhere xxx
I'm struggling with having to wait for scans and decisions. I trust our doctors and midwives and I know that once they have the information they need then they will be able to advise the best way forward for Emily's birth. I'm really hoping that the decision will be that I will be induced in London. I want to be in the right place for Emily, I want to know that as soon as she is born that the surgeons and specialists doctors will be there. I don't have anything against Peterborough hospital, but with all the stress and worry surrounding her birth already, I feel that for her to have to be transferred by ambulance to London for specialist care, well to me that just doesn't make sense.
Our estimated due date is 29th April, the date of the royal wedding. Around that time London is going to be even more of a nightmare than usual, there's already talks of rail strikes on the wedding bank holiday and also the May day bank holiday.
I was feeling so okay. I have been having some strange dreams, which when I wake up I can't remember but then later in the day something triggers me to remember. Last night I dreamt that I could feel and see Emily kicking me and it became quite forceful, I could see her hand pushing me from the inside, like a little handprint on my tummy but then she started coming through like she was trying to get out.
I was sat at my desk when I remembered this and just felt like I was about to cry or just lose it really. I know that the vivid dreams and such are a part of being pregnant, I just wish they wouldn't play on my negative sub-concious so much!!
I want to be positive and to a certain extent I am most days. I want to be happy and I think that I am. I am happy that we are having Emily and I promise myself everyday that we will do whatever is best for her when she arrives. I can't wait to meet her and treasure every moment we have with her.
Today is just one of those days where I'm scared, worried, nervous, stressed...... The list of emotions could go on forever I guess.
Sorry for the rubbish post, I just had to get this out somewhere xxx
14 January 2011
Emily's Monitoring Scan
So we had our first monitoring scan for Emily's heart yesterday.
As far as they could see, the heart has not become worse, so I guess that's good news :-)
We had the same sonographer who detected the problem which was reassuring because she knew what was going on and what she was looking for.
As far as growing goes she is spot on average for where she should be and has a nice round tummy!
No indicators on this scan for any further problems so we're keeping our fingers crossed!
Our usual consultant wasn't there though :( but the lady we saw in his place was lovely.
So now hopefully another scan in 4 weeks or so and then the next Great Ormond Street Scan in March.
Feel like I can breathe again now, if just for a little while!!
We've not done a lot over the last couple of days again. Ian's been busy fighting some wars on his xbox and I've been baking cakes and resting a lot. I'm looking forward to finishing work in just 2 weeks, but got to work hard to make sure everything is up to date and that the guys know what to do while I am off, though I think they all know it all between them anyway :-)
Off to ice the mandarin cake I made last night now! Yummmm.
xx
As far as they could see, the heart has not become worse, so I guess that's good news :-)
We had the same sonographer who detected the problem which was reassuring because she knew what was going on and what she was looking for.
As far as growing goes she is spot on average for where she should be and has a nice round tummy!
No indicators on this scan for any further problems so we're keeping our fingers crossed!
Our usual consultant wasn't there though :( but the lady we saw in his place was lovely.
So now hopefully another scan in 4 weeks or so and then the next Great Ormond Street Scan in March.
Feel like I can breathe again now, if just for a little while!!
We've not done a lot over the last couple of days again. Ian's been busy fighting some wars on his xbox and I've been baking cakes and resting a lot. I'm looking forward to finishing work in just 2 weeks, but got to work hard to make sure everything is up to date and that the guys know what to do while I am off, though I think they all know it all between them anyway :-)
Off to ice the mandarin cake I made last night now! Yummmm.
xx
11 January 2011
Tomorrow.....
So tomorrow we are off back to the hospital for an appointment with our consultant and a scan to have a little peek at Emily and to see how she is doing.
Feeling a bit excited to go and see her and hoping we will see her little face again, but also very apprehensive and extremely nervous. Hoping that measurements etc will be fine and hoping that nothing further will be wrong but quite afraid of receiving more bad news..... But fingers crossed!!
The past week has been okay. I picked up a pretty little book which I am putting all of Emily's scan pictures in to and writing to her about what has happened so far and plan to continue writing about it all to her and hopefully will have more scan pictures to put in :-) Our consultant is very nice and generous so I think he will let us have a couple. I hope the book will be something I can show her as she grows and will help explain to her when she is older how much she will have been through and how much she means to us.
I've got just over 2 weeks left at work, I am finding it hard to concentrate here really and find it hard to get motivated as I always find my mind wandering off in to question and curiousity zone. I really need to pull it together for the next few weeks!
Other than work, I've got a new hobby which is making candles!! It's pretty cool and I have been picking up some pretty unusual pots and teacups to make the candles in. Found some old tobey mugs which have pirate faces on which I have now transformed into some pretty cool retro looking candles :-)
Have also started baking again. I love doing it, but as there is only Ian and I to feed friends should beware as there may be an impending cake avalanche heading their way!
Hope everyone is okay and that January is being kind to you all xx
Feeling a bit excited to go and see her and hoping we will see her little face again, but also very apprehensive and extremely nervous. Hoping that measurements etc will be fine and hoping that nothing further will be wrong but quite afraid of receiving more bad news..... But fingers crossed!!
The past week has been okay. I picked up a pretty little book which I am putting all of Emily's scan pictures in to and writing to her about what has happened so far and plan to continue writing about it all to her and hopefully will have more scan pictures to put in :-) Our consultant is very nice and generous so I think he will let us have a couple. I hope the book will be something I can show her as she grows and will help explain to her when she is older how much she will have been through and how much she means to us.
I've got just over 2 weeks left at work, I am finding it hard to concentrate here really and find it hard to get motivated as I always find my mind wandering off in to question and curiousity zone. I really need to pull it together for the next few weeks!
Other than work, I've got a new hobby which is making candles!! It's pretty cool and I have been picking up some pretty unusual pots and teacups to make the candles in. Found some old tobey mugs which have pirate faces on which I have now transformed into some pretty cool retro looking candles :-)
Have also started baking again. I love doing it, but as there is only Ian and I to feed friends should beware as there may be an impending cake avalanche heading their way!
Hope everyone is okay and that January is being kind to you all xx
4 January 2011
Hello 2011!
Hello!
Just thought I would do an update :-) We've no further news on how Emily is doing as not had any further appointments, although do have a few coming up next week! She is still giving me a good lot of kicks each day and I can now see my stomach move from the outside when she punches me (FREAKY!!).
Generally we've been okay! Christmas was lovely. Ian and I got up and opened our presents with the dogs. I was a little overwhelmed at my treats! We made a christmas dinner for ourselves and our friend Jordan who came over, it was amazing! Ian's pretty good at making a chicken and I have to say I'm becoming pretty great in general at cooking yummy food ;-) Then in the evening we just relaxed and watched some films and snoozed.
New Years eve was lovely too, we popped to see some friends and wish them a Happy New Year, then we ordered the most amount of chinese food for just 2 people ever!! We figured we were saving a whole lot of money by staying in so it was okay :-)
We stayed up and watched the London 2011 fireworks on the TV and then went to bed and had a good lay in on New Years Day.
It was all pretty perfect. I got upset once I think, but I think that was allowed :-)
So now for 2011! I'm apprehensive to say the least, but staying positive to see what will happen.
I finish work on the 28th January and have got lots of plans on things to do while on my leave and leading up to Emily's birth. The plans mainly involve lots of crafts and doing things I don't normally have time to do while working. I think we will finish the nursery and possibly build the cot, but we'll see.
Next week we have a scan appointment at our local hospital and we need to decide if we want to have the Amniocentesis carried out at the same time. I've not thought about ti over Christmas but am going to have a think between now and the scan day.
Love to everyone for 2011 xxx
Just thought I would do an update :-) We've no further news on how Emily is doing as not had any further appointments, although do have a few coming up next week! She is still giving me a good lot of kicks each day and I can now see my stomach move from the outside when she punches me (FREAKY!!).
Generally we've been okay! Christmas was lovely. Ian and I got up and opened our presents with the dogs. I was a little overwhelmed at my treats! We made a christmas dinner for ourselves and our friend Jordan who came over, it was amazing! Ian's pretty good at making a chicken and I have to say I'm becoming pretty great in general at cooking yummy food ;-) Then in the evening we just relaxed and watched some films and snoozed.
New Years eve was lovely too, we popped to see some friends and wish them a Happy New Year, then we ordered the most amount of chinese food for just 2 people ever!! We figured we were saving a whole lot of money by staying in so it was okay :-)
We stayed up and watched the London 2011 fireworks on the TV and then went to bed and had a good lay in on New Years Day.
It was all pretty perfect. I got upset once I think, but I think that was allowed :-)
So now for 2011! I'm apprehensive to say the least, but staying positive to see what will happen.
I finish work on the 28th January and have got lots of plans on things to do while on my leave and leading up to Emily's birth. The plans mainly involve lots of crafts and doing things I don't normally have time to do while working. I think we will finish the nursery and possibly build the cot, but we'll see.
Next week we have a scan appointment at our local hospital and we need to decide if we want to have the Amniocentesis carried out at the same time. I've not thought about ti over Christmas but am going to have a think between now and the scan day.
Love to everyone for 2011 xxx
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