In the beginning...

For those who are new to the blog, here is the story of 'how we got here'.

In 2004, after our first IVF attempt and an uneventful pregnancy, our first daughter Emma was born - a big, fat healthy baby who continues to be typical in every way - except perhaps for her fascination with toilet humour.

In 2005 I again fell pregnant after IVF - but this time it was twins - identical twins no less.  From the beginning one of the twins was always bigger than the other - and we soon discovered why.  At 22 weeks and 4 days the twins were diagnosed with severe twin-twin-transfusion syndrome.  At that time Audrey was 25% larger than Ashlea.  Ashlea had no urine in her bladder and therefore no fluid in her amniotic sac (this is very dangerous as it can lead to cord compression and 'fetal demise').  It also became apparent that Ashlea had only 5-10% of the shared placenta and that her umbilical cord only had 2 vessels and a velamentous insertion.  I know that all sounds like gobbledigook but in summary it is all BAD for a baby and contributed to her extreme growth restriction.  After 3 amnioreductions to remove litres of excess fluid, and much bed rest, at 27 weeks 4 days gestation it was decided that the babies best chance for survival was to be born. At that stage Audrey's heart was very enlarged and close to failing, and Ashlea was not growing or passing urine at all.  I cannot tell you how horrifying it is to be told so early in a pregnancy that you have to elect to deliver your babies - I will never forget that feeling.

In April 2006, two very small girls were born.  Audrey weighed 820gm, and Ashlea a tiny 570gm.  It took me a long time to be able to say Ashlea's birth weight out loud without tearing up as it seemed to somehow signify her struggle to live.  After the delivery Ashlea was quickly intubated and stabilised. Audrey was very 'flat' and took a long time to be stabilised.  It is sickening to watch the video footage from the delivery and it makes my blood run cold to think that Audrey may not have made it out of the operating room alive.

In the first few days after their birth Audrey was actually less stable than Ashlea.  Audrey's heart had been very enlarged so she required medication to get it to pump effectively.  Her circulation was also effected by this - at one point she lost the blood supply to one of her legs.  I didn't realise at the time how much her doctor was freaking out about this (his words), but it is now horrifying to think that she could have lost a leg (from the hip).  Unthinkable.  After the first few days however, Audrey became very stable and grew and progressed through the nursery without any further drama.  Audrey really is our walking, talking miracle.  To be born so early and so sick, and yet she is now developmentally normal in every way (although has been infected with Emma's love of poo-talk).

Ashlea came out fighting and even tried to cry in the delivery room.  By day 4 however  things had gone very pear shaped.  By that night she was in complete renal failure and as a result had very high potassium and very low blood sugar.  I remember the doctor telling me this, but not explaining what it meant.  I had to ask him:

"So what does that mean?"

I felt like I asked that a lot.

That was the first time we were told she might not make it. By day 8 things were even worse. She was very sick - her little body had swollen up to around 800gm with all the fluid she was not able to pass due to her kidney failure.  Imagine that - I am 50kg - it would be like gaining 30 kg in 8 days.  She was receiving a lot of support from the ventilator and things were looking very grim.  My high risk OB even came up to visit me on the ward to say how sorry he was that things were heading in that direction (I love him).  But then Ashlea surprised us all by doing a big wee (5ml in one go) and slowly starting to recover.

Slowly but surely she started improving.  By day 17 she got off the ventilator and onto CPAP. Every tiny step forward was celebrated. When life is so fragile, even something as strange as the removal of an IV can be cause for celebration. Every gram gained was rejoiced over. Every breath taken on her own was a triumph.

However by day 35 she had an infection and suspected NEC and was back on the ventilator for 10 days. Again we were filled with worry. The surgeon was called to come and assess her - thankfully his presence alone was enough to coax her to poop - see surgeons really are all powerful ;-)  Again she was extubated and slowly started growing stronger.  By week 10 however, she had another spectacular collapse and was re-intubated and back on the ventilator for 10 days.  It was at this time that we began to realise that Ashlea was not going to get out of the nursery unscathed.  Prior to that we had been ignorantly optimistic.  It was at this time that we were told that Ashlea's kidney failure would be permanent and that she would eventually need a transplant.  We were also told that she had a 90% chance of having some kind of developmental delay.  We already knew by then that she was blind in one eye. 

Every time they told us something new I felt that I had to re-adjust my thinking.

OK, she's got kidney failure - we can cope with that.

OK, she's got kidney failure and she's blind in one eye - we can cope with that.

OK, so she's got kidney failure, she's blind in one eye AND she has cerebral palsy - we can cope with that.

And on it went.

Finally, after 143 days in hospital, 35 days of mechanical ventilation, at least 6 weeks of CPAP, numerous infections (at least 3 life threatening), suspected NEC, countless apnoeas, surgery to repair bilateral inguinal hernias, exposure to whooping cough, and the slowest weight gain known to mankind, we got to take Miss Ashlea home. She was 8 weeks corrected age - 20 weeks 3 days actual age and weighed a hefty 2.3kg. Audrey had already been home for 8 weeks. Emma was 2 years old.

Then life got really interesting.

** Throughout this time my sister was sending emails to our friends asking them to pray for the girls.  Click here to read the emails.**

Click here if you want to read "what happened next".

11 comments:

Sarah said...

You sure have 2 miracle girls Alison + the gorgeous Emma of course!

Susan, Mum to Molly said...

Excellent "how we got here" summary Alison.

Sorry you had to type it all twice!

Can I ask what NEC stands for?

Alison said...

NEC is necrotising enterocolitis. Its a condition that prems are vulnerable to where parts of their gut can die. It is very serious and can kill very quickly.

Ms. Crabass said...

Hi Alison- Wow, what a story! Between the time of your dx and your delivery did they treat your TTTS in any way? Protein drinks or any other intervention...a lot of docs are having their pts drink Ensure at first dx. I wasn't dx until PROM, it was too late for any intervention.
My recipient is sicker with more disabilities than my donor. I've read that is very common.
And amazing Audrey and Ashlea were both under 2 lbs! What miracles! They are such beautiful girls.
So nice to "meet" you, Alison...I can't wait to read more about your twins and their big sister.
I've been writing my boys' story to add to my blog but I've yet to finish...maybe I should break it up into two stories like you've done. Better yet, three!

Alison said...

Ms Crabass - I had 3 amnioreductions to reduce the pressure from all the extra fluid around Audrey, I was on bedrest and was told I could drink protein drinks if I wanted - but it isn't considered standard treatment over here. Yes I have heard it is often the recipient that is sicker - I think a lot of Ashlea's issues are related to the severe IUGR she suffered as well - that combined with how sick she was in the NICU due to kidney failure. I'm looking forward to following your boys story too!
PS I love your username!

earlybirdies said...

Thanks for visiting our blog and leaving such a sweet note!

FIrst of all, your girls are fantastically beautiful. I love how all them have their gorgeous blonde locks swaying in the wind haha.

Thank you for sharing your family's story! I, too, am really into reading about twins... particularly if one is doing well and the other is delayed. Your girls are older.. so maybe I can find some tips and hints in your blog about what that twin dynamic must be like.

Best wishes to you all.

Sara said...

What a story and a tremendous struggle! Holy cats! Your family is gorgeous. I will be praying for you all every day! XOXO

♥.Trish.♥ Drumboys said...

Hello Alison, from Trish, I knew you from EB x my twin boys were born not long after Ashlea and Audrey.
I bumped into you at WM a few years back.
I will follow your blog now.

panic attack therapy said...

Interesting story! Keep up with your good posts.

Love Dexter said...

Just found your blog through Love that Max. I enjoyed reading this post. My sister had 122 days in the nicu, with Dexter, so we can relate to lots of this. Love your great attitude! We all just have to keep keeping on.

Sadia said...

Alison,

I've been a mostly lurker for a while. I blog over at HDYDI.com. Hi Anamika!

How have you been? I'm so sorry I haven't been in touch. Life has been rather hectic, but that's really no excuse.

How are the girls? They must be so big now!

We're doing an infertility awareness week over at HDYDI the week of April 20. I just wanted to invite you to post something if you felt up to it. Details at http://hdydi.com/features/theme-weeks/infertility-awareness-week-2014/.

Lots of love,

Sadia