Friday, 30 January 2009

me and my girl

It is amazing how Dounya looks like me ...if I would put a picture of me and Dounya you would not know who is who I think. Unfortunately all my baby photos are still in Holland with my dad but I will ask him to send me some so I can show you in time what I mean. Friends who knew me when i was little noticed this too. She is the darkest of the bunch and has my dark nearly black eyes. And after all we have been through together I feel like we have an unbreakable bond.But it's strange how things have turned around so more worries, hospital visits/stays, no problems with feeding and weight gaining.We finally have gone back to the normal family routine!! I am feeling so energetic now that I am planning to start a study again soon. I have always worked before and studied but these last years everything got on a hold with us moving here and having Dounya. Next month I will go to an open day about a BA (hon) in Humanities to see if that is something for me...yes I like to stay busy LOL!
Everything is going so well with Dounya...she was recently weighed again and is now 13lb75 which is 6120 grams. Clothes were she could swim in before are fitting now and she is full of energy.
I am still waiting for her first cardiac app.and I have everything crossed that her heart looks\great and is working well. It seems to be.. but I want to see it as well!!

Dounya's story is added on this website:

And don't forget CHD awareness week 7-14 February!!

Friday, 23 January 2009

some pics

Just some pictures to let you see how well she is doing...She is getting a bit chubby Hurrah!!

Monday, 19 January 2009

doing great

Dounya had to go to Craigavon hospital today to check her salt level in her blood. When she was discharged it was a bit low and she needed to take a supplement twice a day. Last week I could reduce the dose a bit and today we needed to see if it was alright.What every doctor who takes a blood sample finds incredible is the fact that she doesn't blink an eye when they put the needle in her....she even smiles!!!???I hate needles and when I was younger I cried my eyes out, but not Dounya!!Anyway the sample was good so we can stop the supplement as well. There were 3 medical students who were interested in Dounya's story and asked if they could ask me things and have a listen to her heart. Of course I encourage that and Dounya wasn't bothered either, she welcomed them with huge smiles and 'googragroo' sounds.

Feeding wise she is doing brilliant too. The bottle alone is not enough for her so I started to spoon feed her and she loves it....alongside about 6 bottles of 130 ml!!

You see her grow and enjoying everything...feeding , playing watching her siblings fighting/ is like she wants to make up for all the months life was just a struggle.

Right now she is lying next to me blowing raspberries with a cheeky look in her eyes... we are all so happy to see her like this !!

Tuesday, 13 January 2009

missy put on weight!!

Our little superstar was weighed today by the health visitor and gained in just 1 week a whopping 540 grams!! She is now 11lb11 which is 5300 grams!! It seems that the days of nail biting and thinking ''has she lost or gained ANYTHING???'' are really gone! From the look of her I knew she gained but I couldn't believe how much ...had to see it with my own eyes!!Wonderful!!

Saturday, 10 January 2009

Busy...and loving it!!!

As you may have noticed I have not updated here for nearly a week. I am quite busy with our household at the moment especially now our little fighter is back! And I am enjoying every minute of it....Since she was born she has been in and out of hospitals half of her life and it felt like I missed out on so much even though I was with her. So now I try to make up some lost time with my NEW baby ...she has changed so much and for the better!!Might be handy to keep a cow ourselves in the back garden with the appetite she has developed and she is blossoming in every way! Her smiles seems happier even!!

just 2 weeks ago...still amazed some photos.

24 hrs after the ventilator in an oxygen head box and breathing on her own!
4 days after surgery when the dressing was taken from the wound. Under the scar you see the scars where the drains where in
6 days after...she is ready to go HOME!!!that's what we did the next day!

Monday, 5 January 2009

It is behind us...

The 29th of December 2008...a date I will never ever forget as long as I live...the day Dounya had her repair through open heart surgery.
How come that normally the hours just seem to pass in a blink of an eye but all of sudden started to go by in slow motion???
Sunday evening I had a talk with the surgeon, Mr. Gladstone, in which he explained what he was planning to do and what could go I wished he could have skipped that part!! I know he needs to but I freaked out when he told me the mortality rate is 5-10%. Kept my face straight at that moment but inside m there was alot going on I can assure you!I signed the consent forms and when he left I really was in need of some fresh air. I stayed up with Dounya 'till late in the evening, just did not want to leave her. After deciding it would be wise to get some sleep to be ready for the next day I went up to my accommodation. And I spent the night with my eyes wide open, all kind of thoughts going through my mind!Just plain fear for what would happen in the day that was about to begin. So without sleep I was back on the ward early, to spend with my brave little girl..the guilt I felt when I looked at her smiling and being in such good form! In just a few hours she would endure a major surgery and she did not have a clue. Thank god!
I was not crying but when the ambulance crew came to take us from the children's hospital to the main one my heart was in my throat and in silence I wrapped hr in a blanket and followed them to the ambulance. The walk to the theatre was terrible, Dounya looking at me with so much trust in her eyes...and then we arrived in the area where she would get sedated. I held her on my lap while they put the mask over her face and then I really could not stop my tears. Inside me I was crying out: NO No NOOOO not my Dounya!!!But I had to hand her over and leave her..That was so hard. The nurse who came along with us tried to comfort me which wasn't a easy thing to do when I was towering over her...she was just a small lady!
we walked back together to the children's hosp.Got myself a coffee and sat outside in total fear but trusting my daughter she will show them!! I have often seen her fighting spirit in her eyes and I was and needed to be sure she would get through this. I went to walk, hoovered my room, lay on the bed, but decided I just wanted to be as close as possible to Dounya, so I just paced back and fort near the main hospital.
My brother in law came to support me thank god, so I had some distraction which was really helpful.Dounya went down at 8.00 am and came out at 14.15 PM. the longest 6 hours of my life.
I just heard: It went well....And I kept saying in my head THANK YOU, THANK YOU, THANK YOU.
I was prepared beforehand of the sight it would be when she was on Cardiac Intensive Care Unit (CICU) but no one can prepare for the shock when it is your own child. A ventilator through her nose which was breathing for her, 3 drains coming out of her chest, 1 tube going in her neck, another in her groin, catheter, and machine beeping and buzzing all around..I saw her and needed to sit down. The toll of not eating, sleeping and being so so worried constantly was that I felt I would crash there and then!And that is not what Dounya would need when she was ready to wake I went to my room for some much needed sleep. after 2 hours I was back on CICU next to her.
The next morning she wa taken of the vent at 8 am and she managed to breath on her own!! SHE DID IT!!!
They put an Oxygen box around her head to give her extra oxygen and throughout the day gradually tubes and wires came out and machines stopped.She opened her eyes but was really high on morphine...the look in her eyes was not the bright curious one I know and when she made sounds it sounded more like a little kitten.. I will never forget that.But overall she did well.
She could have gone to the ward the day after surgery already but when the surgeon gave the go ahead it was a bit late in the afternoon to arrange the transfer so she got back on the ward on Wednesday morning.
And from there on things just went upwards..every day she improved more and on Friday you couldn't see by the look at her that she had had an OHS 4 days ago!! Her heart rate was bit low when a sleep but they were not too worried about that and she resolved that quite good in the next days. She also was not to keen on her bottles at first but since Saturday that has improved very well. She takes now up to 100 ml 3hourly, WITHOUT EFFORT!!! after all those months of seeing her fighting to breath and drink it is a joy!
And the icing on the cake: TODAY SHE CAME HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am so so happy and so very grateful that she has done so well, but most of all:

From now on 29 december will be the day things changed, and we will celebrate it every year as her heart day!!