Saturday, 25 October 2008

the beginning....

Saturday morning 16 augustus 2008 at 00.55 our beautiul daughter Dounya was born in Craigavon hospital, Craigavon, Northern-Ireland.
Everything seemed right, but she was already special because of the birthmarks on her little behind...mongolian blue spots they are called. Never heard of it before but they say it is common with children from mixed races. They will disapear when she is growing up though.

Dounya got her little checks and everything was fine so we went to the maternity ward and because her delivery was straight forward I was thinking we would leave the hospital Sunday.
But when the paeditrician checked her during his round sunday morning he picked up a murmur in her heart...and our journey in the unknown started.

I could not leave the hospital with Dounya until she could be seen by cardiac specialists in the Royal Victoria hospital in Belfast where they have a special children's unit called the Clarke Clinic.
The doctors did a lot of checks with her and they found that she had a congenital heart disease called Atrioventricular septal defect ( AVSD).

She will need a mayor open heart surgery.
It sounded all so scary and I have to admit I broke down in tears . They told us that although it is a major surgery her AVSD seemed to be straight forward and therefore good to fix. But we should be prepared for Dounya getting more and more breathless, feeding problems, and poor weight gaining before the surgery. They could not tell us as yet when her surgery will be but probably before she is 7 months old. It all depends on how she will grow and if she stays stable enough.

The first days after the news I felt a bit lost an found myself searching the internet about Dounya's condition. But when I read al those stories and facts it felt like it had nothing to do with Dounya because at that moment she was still doing very well.

That soon changed unfortunatly.... and all became very real.

August 25 started fairly normal. The two eldest boys went to school and I was at home with Sanae and Dounya.
The evening before I noticed that Dounya was breathing quite fast and I asked Jamal if he noticed that too. Was it beginning? So soon already??We thought the best thing was not to panic, because the doctors had warned us this would happen.
In the afternoon the midwife came to do Dounya's check ups....and she was worried about her breathing. ......straight away she phoned our GP to get an urgent appointment and we could be seen within an hour. The GP said that her breathing was indeed fast and so was her heart rate. We might be overprecautious he said but let her be checked out at the childrens A&E just to be sure she is allright...
So I went there in craigavon hospital were they did a x-ray, an ECG and checking her SATS. It was not the way it should be.. Dounya was in heart failure which basically means that her heart was not coping. The doctors said that she was looking well for a baby in heart failure, not blue or pale but pink!!!

The weight she gained was not proper weight but fluids that her body could not get rid of .
She was sent up the childrens ward and put on the monitor.
I had to leave her behind...We just had her 5 days home...

The next morning was terrible when my other children went into the room searching Dounya like they used to do every morning. They love her very much and every morning when I brought her downstairs they welcomed her with a big cheer! But this morning she was not there
and i never forget the look on their faces. I told them Dounya got a poorly heart and that the doctors need to mend it someday. That is why she was not feeling well at the moment and had to stay in hospital to get better. I could not answer the question when she would be back because I did not know myself...

the days in hospital

Dounya was put on medications to get rid of the fluids in her body and one to stabilise her heart rate. she was feeding poorly and after 3 days she needed a tube through her nose directly in her stomach a so called NG tube.

I was juggeling my time between home and hospital, trying to be with Dounya as much as I could. It is hard to have a newborn but you can not take care of her yourself.

Every day I hoped for the news that we could take her took 13 days before it came and I was over the moon when they said the tube could come out too!!


She is still on medication ( digoxin, furosemide and spironolactone) and has to drink a special high calorie milk called infantrini. She is slowly gaining weight. At the moment she weighs 3700 grams but she caught a chest infection this week and was not drinking well for 3 days so probably she lost a bit.


But she is doing fairly well at the moment...our little fighter.


DafadDdoniol said...

She's adorable, lovely to read your story xxx

PS Its DafadDdoniol from HL in case you think I'm just some random strange person ;o)

Posh Totty said...

Dounya is beautiful and I look forward to follwing her prgress on your blog :o) Xxx

(Ps, Im Mand from Heartline)

Laila said...

hello sweet Sandra,

I wish you all the best in the world and will keep my fingers crossed for your beautifull baby girl. *she's gorgeous, those eyes!!!!* I see alot of resemblance *is that written the right way?* in your children with my best friend whom I grew up with!!

love Laila

Marije said...

Hi San,
What a beautiful little girl she is. Happy to read she's been doing progress! I was so sad for all of you when I read your first message telling about her problem. I think you're very brave going through this and I'll keep updated about it. Keep up the good work and take care!

Love, Marije