So then what happened???

Following on from my "how did we get here" post, here is "what happened next"...

Ashlea came home from RPA Newborn Care in September 2006.  It was a shock to the system to finally be at home with two (very) small babies and a boisterous 2 year old.

Ashlea had feeding problems from early on, and actually got discharged from RPA, only to be re-admitted 2 days later as she was un-feedable.  At that point an NG tube was inserted and she was started on medication for reflux.

Fortunately Audrey was a very good baby.  She fed and slept well, she grew normally, didn't have reflux or colic.  She pretty much did everything she was meant to when she was meant to.  Ashlea on the other hand, was a little more challenging.

Feeding was an absolute nightmare.  She would wake regularly to feed, but within minutes of the feed starting she would be arching her back and screaming and refusing to drink any more.  We would be forced to give the remainder of her feed via NG tube, only to have her vomit most of it back up.  To say that Ashlea had reflux was an understatement.  

I have trouble remembering what it was like in those early days as it was so busy, the only memories I have are like snap shots in my mind.  Everything else is hazy.

I remember Ashlea vomiting.  A lot.

I remember attending appointments at the kids hospital with 3 small children - one who behaved like a little wildcat whenever she was held, touched, fed - anything.  I have a sneaky suspicion that I may have looked slightly crazed at this time….

I remember having a long, enduring relationship with my breast pump.  As Ashlea was unable to feed, and because I felt guilty about one twin getting all the breast milk and the other not getting any, I instead pumped (for a year) and split what milk I had between the girls.  They both got formula as well as there was no way I had enough milk for 2 babies.  In hindsight I have NO IDEA how I managed to keep at it for a year, but I think in my post NICU paranoia I believed that breast milk would magically keep my girls healthy.  So I pumped like a madwoman.

I also remember having a lot of flashbacks to the nursery.  The whole experience had been traumatic, but there was one particular day that came to symbolise the whole experience, and I would have flashbacks all the time to 'that day'.  That lasted about a year, and then they just stopped, at which time I fell into a bit of a pit (apparently that is all part of PTSD).  It took quite awhile to climb out of the pit.

I remember attending many, many appointments at the children's hospital.  I also remember feeling that I HAD to do every single thing any medical person told me.  These days...not so much.  Actually it didn't take me long to get over that - I was discharging her from hospital myself by late 2007.

She was receiving weekly physio and kidney appointments to begin with, but fortunately things stabilised with her kidneys and we were able to get it down to 3 monthly appointments (unless she is sick).   In the winter of 2007 she had a number of visits to the Emergency Dept with either bronchiolitis or dehydration.  She had a few admissions as well for either or both of those conditions.  We also took her in for vomiting blood.  Another time for vomiting green stuff, and for pushing yellow bile back up her feeding tube while we were trying to feed her.  Multicoloured vomit from a child whose only food is white is a concern!!

Eventually the vomit problem was fixed in August 2007 when she had her fundoplication and PEG inserted.  The fundo stopped her vomiting (but she can and still does gag a lot), and the PEG is a more permanent feeding tube inserted into her stomach, as I had finally gotten sick of changing the NG tube (when your child is big enough to pull it out nearly every day of the week you need something different).

I remember taking both Ashlea AND Audrey to hydrotherapy.  On my own.  Some other families would turn up with 2 adults to take care of one child.  Not me - I would front up with 2 babies and just me.  Can you see why it is all a bit of a haze now?  Clearly I was crazy.

I remember that my dad passed away in June 2007 after many years suffering from Alzheimers

I remember that we moved house (HOW did we manage that???)

I remember that at her 1 year corrected assessment Ashlea was diagnosed with cerebral palsy.  They didn't even assess her - it was a foregone conclusion from previous assessments.  Funny how doctors know this stuff before parents.  I was expecting her to be assessed like Audrey.  It hadn't occurred to me yet that she was 'un-assessable' on the regular scale at that stage.  Her initial diagnosis was spastic diplegia - GMFCS Level 5.

I remember Ashlea had a brain MRI which ended up showing up something totally bizarre and unexpected.  Her brain scan showed some symptoms of Septo-Optic Displasia - an eye / brain / hormone condition.  Ashlea has a lot (but not all) of the symptoms of it, which is kind of weird, because it is a condition that is caused by an 'insult' to the fetus during pregnancy, rather than a trauma caused by her prematurity.  My only way of putting it all together (in my non-medical brain) is to assume that the TTTS was the 'insult' to her developing brain.

That was all just in 2007.  By the end of the year Ashlea was still completely immobile - no rolling, crawling, sitting - nothing.  She also had no speech whatsoever.  She did however smile, laugh and giggle.

2008 was less eventful, with less trips to the ED and more progress.  I think it was in 2008 that I started my yearly goal: No trips to ED!!  Every January I restart the clock - I don't know that we've achieved it yet?

The last major 'drama' in 2008 was a liver biopsy mid-year.  Ashlea has always had wayward liver enzymes and her doctor was concerned she may have some awful mitochrondrial disease (these are often fatal).  It was a relief to have that ruled out.

By mid-2008 all the diagnoses were in, and we started to 'get on with life' as a family of a child with severe disabilities and a serious medical condition.

4 comments:

Keely said...

Reading this I can totally relate to 'the haze'. It's funny how we never realise how bad things really are until they aren't anymore.
Looking forward to reading more on your kidlets - they sound precious!

Shoshana said...

Do you know about Graz?
www.notube.at?
It is a tube weaning clinic in Austria!
My daughter Tova went there and after 5 weeks started eating. In Australia (melbourne) we had been told that eating may happen one day, but there was no REAL help nor support.
My blog is www.tovasibony.com.au
The support group is www.tubefedkids.com

Kindly,
Shoshana

barefootmeds said...

Wow. I'm reading through all your old posts and I'm so amazed at how many wonderful things you did for your family.
Also, the "insult" WAS most likely the TTTS - reduced blood flow to the brain would reduce oxygen supply to the brain long before birth.
Keep going strong - you guys are inspiring and wonderful.

Jill said...

Hi, I've just found your blog. Far out we have a lot in common, right down to the mutiple births, multi coloured vomit, house moves and death of my Dad.
Big hugs to you, and look forward to reading more
Jill