Sleep Well Our Beautiful Emily

I'm devastated to be writing this but our little baby Emily sadly passed away last night at 5 weeks old.


I have not had time to update the blog in a few weeks, but Emily was doing so well.  She was discharged from Great Ormond Street and had been at home with us for 10 days and was so perfect and doing everything she should have been doing.

She had a really good day yesterday but became very ill very quickly and suddenly last night.  Emily was sleeping soundly and woke up and started to cry.  It was time for her feed so we started to prepare her bottle but her cry suddenly changed from being a normal hungry cry to something very different and we knew that something was wrong.  We knew instantly we had to get her to hospital so I ran upstairs to throw on clothes and in this time Emily stopped breathing. Ian had to perform CPR on her while I called an ambulance and she started to come around, but on the way to the hospital unfortunately they lost her again and they were not able to resuscitate her at the hospital.

We cannot believe this has happened as she was such a fighter and was doing so well. We miss her so much and are feeling so lost and empty without her.  Emily was beautiful and gave us so much joy in her short time here. It feels so unfair that she had to go so soon.

Please sleep safe our beautiful daughter, we hope you know how much you are loved and how much happiness you brought to so many people in your time here.  Thank you for coming to us and trying your best, we know you gave it your all.

xxx

Update!

Emily had her chest closed on Monday and had drains removed on Tuesday. So the only lines now going in are meds and the only lines out are her catheter and the odd line for taking blood.

Generally, she is doing well. There's been a bit of concern over if she may or may not have picked up an infection somewhere along the line, they have taken plenty of swabs and blood to test and while waiting for the results she's getting a broad spectrum antibiotic to cover anything. It's hard to update really as each day has good bits and bad bits! But the overall feeling is that she is doing well.

Ian and I have been having some 'training' from our cardiac nurse! Just about monitoring Emily when we are home, what to look out for (signs and symptoms that she may be unwell) and when to call the doctors and such. It is all a little scary and has made me wonder a bit about if we actually get to enjoy our little girl or will I forever be a nervous paranoid mum?!

Hopefully tomorrow will be a better day with more ups than downs :)

xx

Baby Emily

Hello!
So so much has happened and I only have my phone and extremely bad signal so I will do a quick update and leave the details for when I have Internet access :)
Emily was eventually born on Wednesday 11 May at 17:30 by emergency C-Section. She weighed 7lb! My induction was started on the Monday and progressed slowly but once I was having regular contractions and was dilated, Emily decided she wasn't happy about coming out and showed signs of distress, so the decision was made to get us to theatre.
It was the scariest thing I have ever done.

Emily was then taken by ambulance to Great Ormond Street with Ian, I followed down a couple of days later after promising the midwives and doctors that I would look after myself!

As I've not been too great at walking Ian has been pushing me around in a wheelchair! Im slowly recovering from the c section but I'm getting there.

But anyway, our beautiful Emily had her first operation on Monday. It was a rough surgery and she had a bit of a rough time of it but the problems that have been encountered are problems that are to be expected following this surgery and with the condition. Emily is very sick at the moment, but that said, today (Wednesday) the doctor told us that she is impressed with the progress we have made and that Emily is doing well,considering all that's going on. Her meds are gradually being reduced. She has been retaining too much fluid so this evening she is having a bit of dialysis to flush the fluid out as she needs to lose the fluid before her chest can be closed. We are hoping her chest closure will happen on Friday, this will be a huge step again and so hoping with everything we have that it will go well and that our baby will pull through. We love her so much.

Emily is gorgeous, she is just magical and I'm hoping with everything I am that she will get through this and whatever else that lays ahead. I want to hear her cry for attention and I want to be changing dirty nappies! Fingers crossed our baby will be okay.

Off to go visit her now, so thanks for reading and I will try to update when I can xxxx

Sweeping Away!

Just a quick update while Ian has nipped out to get us some fish & chips for dinner :)

Saw the midwife this morning, she did a second sweep for me in the hope of things getting started but wasn't entirely hopeful that it will, so we have been booked to go for induction on Monday 9th May if nothing happens over the weekend.

Really hoping Emily will get a move on this weekend as I'd much prefer a spontaneous birth than induction, but we shall see!

So please all send me labour thoughts :-)

Soooooo............

4 days overdue!  I had a sweep last Thursday in the hope of kick starting things a bit, midwife said I was favourable, but nothing much has happened.  Should be having a 2nd sweep on Friday when midwife visits, but I am really hoping that maybe we won't make it to Friday, especially as the temperatures are set to rise again the next few days!! Though I'll be sure to be making the most of the sun if we're not heading to hospital :-)

It was my birthday today and Ian made sure I had a lovely day and mum travelled the rest of the way up to take me out for some lunch.  It was good to see her and it is good to know she is now only about 15-20 mins away for when we need her :-)  Ian got me some amazing presents, he is the best and we had a nice day together.

So all in all, things are okay, just waiting around is getting a little boring, but I'm sure she will be here soon (fingers crossed because it really is getting uncomfortable now!!)!

Nearly There!

This is me at 38 weeks and 5 days :) Emily bump is big!

1 week, 1 day.

The midwife came today. It was a good visit. Head is a bit more engaged and blood pressure is all good, she did spill wee on the carpet, but at least it was my wee.... And yep, that tested okay too :-)

Feeling pretty tired now and generally I hurt every where.  Had a discussion with the midwife as when we last saw the consultant, he did tell me that we are to head to the hospital as soon as we think I'm in labour. I said to midwife how I am a little afraid of being sent home if not in established labour and such, but she said I'm just to go when I want, to explain the situation and a decision can only be made when I am there. Which makes sense and I just hope that the labour and birth will be as smooth as possible!

Only 1 week and 1 day and we will be at the due date!  Where has all the time gone?

We've been having some lovely weather lately so have been making the most of it and spending time in the garden planting some stuff, mainly sunflowers!  Also has been nice to spend time with the dogs, we're going to miss them a lot when we are away I think, but they'll be here waiting for us to come home :)

So it's just a waiting game!  I hope I don't have to wait too much longer :-)

NICU Visit

We went to have a look around the local Neonatal Intensive Care Unit at our local hospital this week as this is where Emily will be transferred to when she is born.  All looked okay,  the staff all seemed lovely and friendly too.

So there's now 2 weeks and 2 days til Emily\s due date....  I've been getting a few signals that my body is preparing!  Can't believe we are at this point now, feels quite surreal that quite soon I will have a baby, but that the birth is only the beginning of the difficult scary journey ahead.

Sometimes I wish everything was normal, but I guess this will just be our version of normal, having no other pregnancy/birth/children to compare this to.

Well! Lets just see what happens hey?!

xx

The Countdown Begins!

So yes it would be remarkable if Emily did decide to arrive on her due date, but, the weeks and days left til that date are 4 weeks and 6 days. 

We've finally now seen our consultant obstetrician at Peterborough hospital and we were lucky enough to meet the neonatal paediatrician too.  They've assured and then reassured us that when Emily decides to come, people are and will be aware of the situation and that people will be there who know what to do.  If at any point we are unsure or worried we were told to ask for Dr Jones and he is more than happy to be there or advise in any way he can what needs to be done.  So it's decided, Emily will be born in Peterborough and the transferred to GOSH when a cot is available.  We were a little worried about the 'when a cot is available' bit, but also have been told that once she has her prostoglandin (sp!) drip in place she will be stable and that she will be transferred by specialist team as soon as possible.  So all set for a natural spontaneous birth! 
I have a few questions still, mainly about feeding when she is in Peterborough and I am hoping to speak to someone on the neonatal ward next week about it, fingers crossed I can just do this over the phone or something.

So now we're busy preparing the house, really need to have all things sorted in the next couple of weeks, just in case she decides she can't wait..... However, we'd prefer she stays cooking a bit longer as both the obstetrician and paediatrician are on holiday the next couple of weeks!

That's all the news really!

Great Ormond Street Scan

Hi all

The fetal echo at Great Ormond Street went well, nothing unexpected found and good right side heart function.

Now we just have the ongoing battle with the local hospital to deal with.  They have been updated by GOSH regarding the scan and ongoing management of my pregnancy.  I have contacted them to arrange a meeting with my obstetrician and the paediatric/neonatal team to coordinate a birth plan and care for Emily once she is born.  The cardiologist wants me to have a spontaneous natural birth as feels this is best for Emily and then for her to be transferred to GOSH.  I feel as though I am hitting my head against a brick wall.  There's 6 weeks until my EDD and I'm struggling to get an appointment with my obstetrician, let alone the Paeds team.  I don't think this is acceptable.  My cardiac liason nurse said to me that my baby is high risk and I shouldn't have to be fighting to get a care plan in place.  I dont need this stress.  What if Emily makes a break for freedom early and there is no plan in place?  All I want is to know and to have peace of mind that if I turn up at the hospital in labour that I am going to get the right care, that people will be aware of the situation.
Currently I have zero faith in the hospital. I dont really know where to turn to yet again and feel that I am not getting the priority I should.  I am not a selfish person or a drama queen, but I have been dealing with this all quite calmly, but now I am feeling so anxious and I dont think it is fair.

Hopefully tomorrow I may have better news, but for now everything feels pretty crap.

x

Here We Go!

Had our midwife appointment this morning and it seems the next few weeks are going to be busy!

My midwife is going to give us our antenatal classes and info at home as all the parentcraft lessons in our area are booked up and I was also a bit nervous about attending.  So next Tuesday she is coming to teach us about labour and birth and start looking at what to expect and such.

Then next Friday we have our appointment at Great Ormond Street.  We booked our train tickets today so we're all prepared.  We are having a Fetal Echo and seeing Dr Sullivan (I think). After the scan we will be meeting our Cardiac Liaison Nurse, Helen.  So Friday will be a pretty busy day!

The following week we will be going to see our local consultant to look at whats going on and also will have some more antenatal things with the midwife. 

Oh and some where in there, there will also be a physio appointment to get some exercises for my silly hips.

Feels like things may go a bit crazy in the next few weeks with appointments and more decisions. 

I am quite nervous about the echo next week. I think its been easy lately to forget the seriousness of the condition and how fragile our baby will be, concentrating on preparing to have a baby and to bring her home has been positive for all of us, but the reality is that we may not bring our baby home. 
I don't think I have forgotten this, but I have not thought about it for a while, certainly I have not thought about it with any depth.  I have been busying myself with getting the nursery ready and thinking about a future with Emily and Ian and everything we hope to do.  I hope so much that everything turns out how we want it to.

I have been checking a certain blog everyday:

http://ourhlhsjourney.blogspot.com/

Kathy has just given birth to her beautiful son and I am thinking of them lots and hoping everything is going well.  I think Kathy's posts are helping to prepare me for what may be to come.

So, although I am still feeling okay, the reality and gravity of what's to come in the next few months has hit me today.  Lets hope next Fridays scan is a positive one!

March Hares and all That Jazz!

I can't believe I have been off work now for 4 weeks! Also I can't believe it is the 1st of March tomorrow. Where is all the time going?

Update wise in regard to Emily, there's nothing much to report. It's just over two weeks until we go to Great Ormond Street again for our date with the super computer, so we are mainly looking to that for our next information overload. My midwife Lesley has been coming every couple of weeks and is coming to see us on Thursday so I shall be measured. So far all my bump measurements have been spot on :-) Although I seem to have grown from nowhere in the last week or so! Maternity clothes that I bought which were too big for me two weeks ago are now too small!!! I'm going to get Ian to take a weekly bump picture from now until the end so we can see how much it grows each week. In fact as I am sat here typing this on my iPad, it's wobbling around from where Miss Milly clearly doesn't want to be sharing her space and keeps attempting to kick it off balance, cheeky :)

We've finished off the nursery now :-) looks uber cute! We have built the cot too, it looks so comfortable.... My naughty Kiki cat seems to think we have have bought her a special bed and I have to keep shoo-ing her off when she sneaks in to the room :-) Also have plenty of cute outfits for Emily and I must not buy any more ^_^

Hmm, what else have we been doing? I've still been baking quite a bit and made some cakes for our friends children last week :)
Tonight I'm going to bake some muffins and make some Potato and Broccoli soup.
Last week I met up with a few friends and had a lovely time. I went to the cinema with Kerensa and we were planning to see quite a girly film but by the time we arrived they had all sold out so we ended up watching The Fighter, which was awesome.
Also saw my lovely friend Lainey for a coffee later in the week and she bought Emily a gorgeous little outfit from Monsoon, which is now hanging in the wardrobe awaiting it's time ^_^
We've been taking the dogs out a bit, Sam loves mud and Kai loves biscuits (: We've mainly been relaxing... Ian fights xbox wars and I read or bake or make stuff. It's good having the time to chill as soon it's all going to change!

I guess I have been feeling a little more scared again the last few days. I have a massive list of questions for the Dr when we see him on the 11th! We've been starting to pull together bits for our birth plan, which has provided a few giggles when I think of some scenarios that could occur.... In particular Ian fainting ;) however I reckon he'll be fine, he did watch when I had the amniocentesis and told me all about how awesome it was to watch the massive needle go in me and to see how it went in on the ultrasound screen.... Glad someone enjoyed the experience haha!

I've worked out that as my tummy grows this equals less sleep :) So generally I seem to be quite tired at the moment, Ian is alright though and can sleep through me fidgeting trying to get comfy, super lucky!

All in all, things are good. It's lovely having so much time together (: I have had a few wobbly days but I just tell Ian and he makes me feel better and then if he feels rubbish he tells me and I make him feel better.

Right better go, cottage pie and some yum veggies for dinner :)

xx

February!

I'm now 28 weeks pregnant, 3rd timester. It's not so much fun. I feel as though all my energy has just drained out of me! Have been getting a few headaches and not sleeping so well, but figure I'll make the most of what sleep I do get as it's only going to get worse over the oncoming weeks.

We've had good amnio results, all of Miss Milly's chromosomes appear to be present and correct, so thats a weight off of mine and Ian's minds! Other than midwife appointments we have no more scans or hospital until the 11th of March when we head to Great Ormond Street again for a fetal echo and to see Dr Sullivan and Helen our Cardiac Nurse. It seems a long way away yet and a little scary to think that I will be 33 weeks by then. I guess that at this appointment we will find out choices for delivery and be able to make a decision. Seems scary that following that appointment I could be induced from any point 4 weeks after it.... Maybe the 11th March doesn't seem so far away after all!

I've now finished work! It is quite a strange feeling. I've only been left a week and already I'm finding it hard to keep track of what day it is. This week is nursery week! There's a little bit of painting to finish off so we should get that done and then I have some nice bits which I have bought ready to put in/up. It's going to look lovely. Work gifted me some John Lewis vouchers as a maternity leave present which was lovely of them and so I have been and bought a beautiful lampshade for the nursery, it's just dangly daisies :-) only problem is, whoever attached the last lampshade tightened the fitting up too much and we can't get the stupid thing off! We also bought a cute little chest of drawers for Emily's things, I am going to wash all the little bits I have bought for her this week and then put them away in the drawers. Also Lynne who I worked with bought Emily the cutest Jemima Puddle Duck cuddly and rattle, so I'm planning to get a few more Beatrix Potter character things for the room :-)

All in all, we're having a pretty lazy time (other than the mad cleaning sprees I seem to go on every other day!) It is nice though being able to relax and feel at the moment that there is not too much to worry about.

xx

Today I had a phone call....

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

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

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

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

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

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