1 year on...

Time flies and it seems I just blinked my eyes while a year has passed by..
And what a year it was...there is never a dull moment in our household that is for sure .
I am proud to say that we have a new addition to our family, a lovely little girl called Amani. Dounya is now a big sister too and she takes her role very seriously ...in charge of dummies and lost cuddly bears! Dounya continues to be in very good health and is a joy to have around ..if anyone can turn a smile on your face she can! Heart wise there are no worries at the moment ( and i hope it will stay like that!) and she has now once a year her cardiac check up..the next one will be somewhere in December.
I will continue to update now and then on her here ( and not take a year like I have done now due to being far too busy) but will start another blog about the adventures of me and the whole household.
This was and will stay Dounya's blog, her journey with CHD. She will read it one day and maybe when she is a teenager continue herself...who knows? So I will not delete it and keep on writing about the things that are important steps in her life. Like turning 2 next week....time does fly!

HAPPY
1ST
BIRTHDAY DOUNYA!!!!!!!!!!!

WE ARE ALL SO PROUD OF YOU...

Great cardiac appointment !!

Last Tuesday 30 June Dounya had her cardiac appointment in the Clark clinic and it went really well. Miss Curiosity was brilliant,lying very still but watching every singls move made..
They are very pleased with her: the leakage hasn't increased and her weight gaining and growth is very well! Next appointment in 6 months time woohoo!!
So the ferries are booked and coming Monday we will be off to Morocco, so my in laws can finally meet our amazing little lady!
We go by car as we usually do, so the holiday starts as soon as we leave already LOL

CHD-NI is growing..we have now a Constitution, 6 committee members in total and 3 fundraising events coming up...so busy enough with all that but I go with a light heart because I know CHD-NI will be well looked after!!
So if you don't hear from me coming month you know where we are!!

Well the interview with UTV has been cancelled now twice and just got news that they will have an interview with one of the cardiologist early July and then will come to me....BUT WE WILL BE OFF ON HOLIDAY THEN ....hopefully we can set a date after I return!
Dounya has her cardiac app. on the 30th of June so fingers crossed all is well. She is doing great still and can sit up now eat along with us mostly and is a very happy and curious baby. So my feeling is that I don't need to worry, but somehow I always do.

CHD-NI is growing and I get more and more help with things which is great! There are fundraising events coming up in Portadown and Belfast to raise money for the Clark clinic. You can read all about that on the CHD-NI website and on the Clark clinic group on Facebook

Heart2Hearts

Been busy with the CHD-NI site and have replaced the original forum with Heart2Hearts a social network where everyone affected by CHD can join and share their experiences, put photos, videos, blogs etc.

http://www.heart2hearts.ning.com

On the part of raising awareness there is positive news. Will have an interview with UTV next week about it and they will use it to get the attention for CHD awareness week 9-17 May.
Really happy with that although I am not so sure about being on TV...hope I will not start to stutter and can get the message across properly.

join hands..

Sandra Kay from Matters of the Heart and Angelina's friends:
''Just some food for thought.... it took over a year to have 16500 people who signed my petition. Everywhere I turn I hear," We need more Awareness out". I do think there are so many many more people who are affected by CHD in some ways than that right ? I need them to care and have 2 minutes of their time to sign and spread the word. Otherwise I can't step in front of the Media and show them how much Awareness is needed. I can't step in front of them with "only" a bit over 16.000 signatures and tell them this public awareness is so needed. I had a reporter of a newspaper say these words to me : If a petition that urges to save polaroid film raises more signatures in a month than you do in six, how can this cause be so important?Need I say more ? Friends we need to join hands in order to make this happen. None of us can do this alone. We need to act as one community to make this happen.Thank you''


SO PLEASE SIGN AND PASS IT ON TO EVERYONE YOU KNOW!!!
http://www.gopetition.com/petitions/media-awareness-for-chd.html

CHD awareness

Miss Dounya

Some pics taken just a couple of days ago.

Overall she is doing fine, just I noticed the last couple of days that she makes a strange sound when she is breathing in her sleep, which she did not do before. Hopefully it's just a stuffed nose or something like that but I am keeping a close eye and if it doesn't go I will go to see the GP this week.

Easter was great fun...we baked some buns with the kids, did an egg hunt and went to Peatlands park were they had a spring event with all kind of activities. The kids loved it !!
Luckily the weather was kind to us and there was plenty of sunshine . Of course the grown ups were exhausted afterwards but the kids .....how can they have so much energy????I want to know the secret because I can use some!!

CHD-NI IS LIVE!!!!-

It seems like I have abandoned this blog but I definitely did not....I just was very busy creating a support group and website on a very dodgy laptop that slowly falls apart!!!I miss some buttons on the keyboard and the mouse doesn't work properly anymore...that's what happens if little hands get a hold of it!!

Anyway somehow I have managed to get it done and we are now live!!

The name is Congenital Heart Defects N-Ireland ( CHD-NI ) and it is launched yesterday officially...you can find it on http://www.chd-ni.co.uk/

Although it is based in N-Ireland it welcomes heart parents from everywhere so please join if you want. I am still working on it so bear with me...I should get my new laptop today hopefully and that would help a great deal!!



Dounya, my inspiration to all of this, is doing great.She makes her presence very well heard and loves to sit next to me while I am typing away.

In fact everybody in our family is doing great and I am feeling blessed and happy!!



I need to catch up with a lot of blogs ....So I am off reading




http://www.chd-ni.co.uk/

Dounya's 1st cardiac appointment after her surgery and sadness in N-Ireland.

Yesterday Dounya went to Belfast to have her 1st cardiac appointment after her surgery. Although she is doing brilliant feeding wise and in her weight gaining , I was a bit nervous about this appointment....you never know!! But thank god her heart is working well and she just has a slight leakage in her AV valve. But the doctor said that this is normal is after the kind of surgery

she had. They will keep an eye on it to make sure it will not increase. We also can stop giving her the diuretics which is great...she is now officially medicine free!! She has to come back in 4 months time so all in all it was a good appointment!!





It is a bit of an strange time now here in Northern-Ireland after everything that happenend in the last couple of days. Useless killings by a group of people for whom I really don't have a polite name to call them.. Why do they want to put people back in misery and sorrow?

I feel so sorry for the young men and the police officer that lost their lives and my thoughts are with their families.

The police officer was killed near where we live and close to the school my boys go.

It is sad to see the place where it happened...

The whole community here is feeling sad and angry over this because they went trough a lot during the Troubles and they certainly don't want to go back to that time!

I have seen it only only on the telly when I was younger and still living in Holland but I have heard stories about it from people here and it was a terrible scary time...

Hopefully these horrible events will unite the people in Northern-Ireland in their effort to keep the peace process going.

no more Infantrini, no more app.with dietitian!!!

Dounya's weight is now 15lb05oz or 6820 grams! Just got of the phone with the dietitian and we can stop with the Infantrini milk and give just regular formula and it is not necessary to see the dietitian anymore, unless of course I am worried about something!Fantastic...it means Dounya is really doing well which I thought was the case already.The scar has healed also nicely and she starts to enjoy lying on her tummy which is a good sign. I am a bit nervous for Tuesday but surely it will be OK ...I got nothing at present to worry about so that must mean her heart is working properly. I will be just glad when the Doctor will confirm this!!!

wow how the time flies by...I really try to keep this blog up to date but somehow the days have not enough hours to do everything I want.....yep that is having four little children who all wants their attention!!
Last Saturday the 21st of February our Chadi turned 6...another example of how the time seems to pass so so quick..my baby is not a baby anymore but a little man. he is doing very well, although sometimes he can still be quite difficult in his behaviour. He is learning every day and I definitely see progress. He goes now twice a week to an after school playgroup to get him to interact more with other children in a different environment. At first he loved it, then he did not go for a week because he was not well. So the routine got broken and he refused a couple of times to go but today he was eager to go ...a good sign!
Dounya is wonderful and a picture of health so far as I can see. Tomorrow she will be weighed again but I do not worry about that anymore, oh joy!! So things are going well here.
I miss Holland sometimes even though I consider here home now. But I miss sometimes stupid tings like bicycles everywhere, the Dutch frankness, chocolate sprinkles for breakfast and Dutch cheese!!!haven't been back since we moved here so it might be time I think!!

CHD Awareness

Like I have said before Dounya has really opened my eyes to the CHD world and I made a pledge to myself to try and make people more aware of CHD. So in the spirit of CHD awareness day we have decorated our front window and made a statement in our street.It is just a little thing we can do but every little bit helps is my opinion. I have written 2 weeks ago to our local newspaper and the Belfast telegraph , the Sun and ITV.com to give some attention to CHD awareness day but sadly nobody responded.....there is still a lot to be done to get some attention I have noticed but like in the poem...I am a heart mum on a mission so will not stop doing my best!!

Dounya will have her first cardiac appointment after surgery on the 10th of March..and although she seems to be doing fine I need the reassurance that on the inside everything is the way it should be....so fingers crossed.

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 much....no 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:
www.congenital-heart-defects.co.uk/dounyaandatrioventricularseptaldefect.aspx

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

some pics

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

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/playing...it 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 !!

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!!

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 ...here some photos.

24 hrs after surgery...off 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!

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 wrong..how 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 up...so 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:
I AM THE PROUDEST MUMMY!!

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

On our way to Belfast...

Tomorrow is the dreaded day...so I am off to Belfast shortly to stay with Dounya. After a couple of days of shedding tears and feeling so desperate I feel ready to face tomorrow.She is a little fighter and I am sure she will get through this.If all goes to plan she will go down at 7.30 a.m and the surgery will take about 4 hours. It is out of my hands but I have faith it will go well.

Come on Dounya, be brave, you can do this...I am next to you all the way sweetheart!