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