PDA

View Full Version : Our brave little girl - anyone else been through something similar?



bullpenguin
29-10-2009, 18:51
Our beautiful DD was born on 23 december 2008 but it wasn't an easy pregnancy...

At 28 weeks I went into pre term labour which they managed to stop with medications and I was on bedrest in hospital for a week and then sent home on bedrest. This was very hard for me, I'd been going to the gym regularily and been out running 6kms 3 times/week up until then, my DH had to take time off work to make sure I rested.
Then nothing happened for 8 weeks.

At my 36 week check up my obstertician noticed that my placenta was failing and that there wasn't much fluid around the baby. I was sent to the hospital for further ultrasounds and tests and 10 days later our DD was delivered by Caesarean.
She was beautiful and healthy, weighing 2710 grams and 49 cm long.

The first few weeks were hard. DD was very unsettled and when she was 3 weeks old my DH, who is in the army, had to go away for 5 months. I have no family here, they're all overseas, and DH's family are on the other side of the country.
So after DH left I was trying to get my head around motherhood, look after a baby that spend most of the time crying and stay sane. At her 6 week check up our paediatrician told me she had reflux and gave us a script for zantac. A few days later I had a much happier baby and I finally got some sleep. I then took DD and flew to Perth to be with the in-laws for a few weeks and that's when it all began.

At DD's 8 week immunisation we found out that she'd lost weight. I was told not to worry too much and weigh her again a few days later but again we found that she's lost weight.
I spoke to her paediatrician in Sydney over the phone and he suggested topping her up with formula after every feed for a week and see if that helped but still nothing.
I took her back to Sydney to have her investigated and in March, at the age of 13 weeks, she was admitted to Royal North Shore Hospital for failure to thrive.
We spent 5 weeks at RNSH where she had numerous scans, xrays, blood tests, usine tests etc done but nothing came up except that she suffered from severe reflux, but we already knew that.
In early April they put a nasogastric tube in and were hoping that the extra formula through the tube would make her put on weight but she was still not gaining enough. She was also put on a feeding pump over night and eventually she was on the pump 21 hrs/day because she could no longer tolerate larger amounts of food.
She was then transferred to Sydney Children's Hospital to see a specialist but they couldn't find anything there either.
At SCH they made me see a psychologist who told me the cause of DD's failure to thrive was an attachment issue between me and DD, we hadn't bonded correctly. I was so angry when I was told this as I knew there were no bonding issues.

We were transferred back to RNSH with that diagnosis and I had to fight for weeks until another psychologist finally said this was not a case of attachment issues.
I still can't believe the psychologist at Sydney Children's Hospital.
Being accused like that made me start thinking that I actually was a bad mother and lead to that I a few weeks later was diagnosed with postnatal depression.

DD was finally discharged with the nasogastric tube and feeding pump.

DH came home early just before DD was discharged, he couldn't be away from his little girl whith everything she had to go through.

She's today 10 months old, still with the NG tube in and on the pump over night but she's a happy and brave little girl.
The NG tube will come out in the next few weeks to be replaced by a PEG (a feeding tube that ges straight into the stomach through the abdominal wall).

She's still very small for her age, 6.2 kgs, and we still don't have a diagnosis. There have been more hospital stays and many more tests and scans since the first time.
DD is so brave despite everything she's been through.

I just had to share our story and I am wondering if there is anyone out ther who has been through something similar?

MumNeedsCoffee
29-10-2009, 23:00
:hugs:You've been through so much and still with no diagnosis. And had to fight a diagnosis from the psychologist that doesn't seem to make much sense at all.

I've not been through anything like this and DD's condition is nowhere near as serious but I've had to fight to get doctors to take me seriously that there was something wrong and I continue to fight to get the correct treatment for DD. She's 8 months and we have only just in the last week had a definite diagnosis.

My thoughts are with you for a diagnosis soon and for a bright future.

bullpenguin
30-10-2009, 12:30
It's amazing isn't it that we actually have to fight to get doctors to take us seriously and actually do something!
I'm glad to hear you didn't give up and kept fighting, and that you finally got a diagnosis! I hope your DD is doing better.

I've been fighting for 8 months now and I am getting very sick of not being taken seriously. Being younger doesn't really help either as some doctors doesn't seem to think that I know what I'm talking about.
Numerous times I've had to make the decisions, like changing DD's formula, and I have proven the doctors wrong at many occations when they'd told me it wouldn't make a difference.

All I want it to be listened to, taken seriously and to get a diagnosis.

My DD deserves to be happy and healthy and that is worth fighting for. I'm not giving up until I get a diagnosis.

TripleTime
31-10-2009, 20:37
:hugs:

What a roller coaster ride you've been riding.

I too am a mum who will never give up fighting until i get the answer I'm looking for.

Nowhere
31-10-2009, 23:32
hey

HUGS i know what its like to have to fight Drs for answers, there is nothign worse.

Your DDs story is somewhat simalar to my DDs she is three and still tube fed she now has a PEG for drain and a Jejensotomy feeding tube she is still FTT we have been to hell and back over it now at three and a half they have diagnosed her with growth hormone deficiancy and a clinical diagnosis of Russel silver syndrome, we are also waiting confirmation of weather she has Oral Facaial digatal syndrome as well.

Dont give up, Some drs are horrible but over time they will see the truth, I know it times it feels like everyone is against you but in time they will see for them selfs whats going on.

What feeding pump do you use are you aware you can get tiny portable ones for free through nutricia if not PM me and i wil give you the details.

HUGS if you want to chat to someone that has been there and stil going through it feel free to PM me any time

bullpenguin
01-11-2009, 12:21
Thank you everyone for all the support, it is really giving me the strength to keep fighting.

We're using a nutricia pump, the tiny purple one. First we had to use the kangaroo pumps but when DD was discharged we finally got the nutricia one.

DD is having another appointment with the paed in about 10 days but I doubt he'll tell me anything new, but it looks like DD won't see the surgeon until december now. Everything is taking so long and it's driving me crazy!