Dounya

1 year on...

2010-08-10T22:43:00.007+01:00

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!

2009-08-16T16:58:00.002+01:00

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

WE ARE ALL SO PROUD OF YOU...

Great cardiac appointment !!

2009-07-02T17:49:00.002+01:00

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!!

2009-06-19T10:22:00.002+01:00

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

2009-05-02T08:56:00.004+01:00

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..

2009-04-19T21:50:00.002+01:00

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

2009-04-15T22:37:00.003+01:00

Miss Dounya

2009-04-13T14:13:00.002+01:00

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!!!!-

2009-03-27T11:03:00.004Z

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.

2009-03-11T16:59:00.006Z

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!!!

2009-03-05T10:45:00.002Z

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!!!

2009-03-02T16:34:00.003Z

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

2009-02-12T17:14:00.006Z

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

2009-01-30T15:34:00.005Z

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

2009-01-23T21:11:00.002Z

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

doing great

2009-01-19T20:16:00.007Z

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!!

2009-01-13T21:12:00.002Z

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!!!

2009-01-10T22:16:00.004Z

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...

2009-01-05T22:23:00.002Z

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...

2008-12-28T10:49:00.002Z

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!

Wonderful

2008-12-26T18:47:00.005Z

How shall I describe my feelings about this Christmas?? It is a mixture of great happiness and sadness

Dounya was doing so well last week that Dr. Craig was happy enough to let her come home for Christmas. Great news, and I was really counting the days to Christmas eve,so excited to pick her up from hospital. In the morning I phoned the ward to see what time I could come. The nurse told me that it was not sure yet that she could come home because she was having troubles with feeding again and the nurses had put down the tube the night before. Also her temperature was a bit high...we agreed that I would phone again after a couple of hours to see how things went.When I put the phone down I couldn't help myself and the tears just started flowing...I was so looking forward to have her home, after the nearly 1 month she has been in hospital. But if she was not well it would of course be better to let her in hospital....
When I phoned back the sun started to shine a bit when the nurse told me that she had had a good feed and she was waiting for the doctor to see her and check her over. Whenever there was news she would phone me back...When she did I was overjoyed as she told me that Dounya got the approval to go home. I did not know how fast I got myself in Belfast!!
Everybody was waiting for us when we returned..the other kids where so excited ...Dounya eyes and head didn't stop turning from one to the other!!After the calmness in hospital this was definitely a different environment!!! NOISY !!!
Christmas day was wonderful...the whole family complete!!I just kept clicking the camera...feeling so grateful that we had the chance to have her home at this special time of the year. But in the evening, when my other children were in bed the thought hit me that we nearly had to bring her back again and surgery is now just a matter of days..
Today it was just a sad day for me...I did not want to show it but Jamal caught me several times with tears and tried to get me smiling again. It is just so hard to bring her back again...we all missed her so much at home!!! So I am weepy the whole time...again...When we came home I brought all her Christmas pressies upstairs and her wee chair and yep..there I went again...so I try now to write it of me on this blog, knowing that the worst is still to come..another 2 days and then it will be surgery day....Please God, let it go well so we can have our little girl home again soon.

Big smile!!!

2008-12-20T17:52:00.002Z

Just look at Dounya's beautiful smile...it says everything!

DOUNYA HOME FOR CHRISTMAS????

2008-12-19T14:37:00.002Z

just got off the phone with the cardiac liaison nurse..and I got brilliant news:DOUNYA MIGHT BE HOME FOR CHRISTMAS!!!!!!!!If all goes well and Sanae of course is better by then we can hopefully take her home on Christmas eve for a couple of days!!!I got everything crossed and pray it will be true because I miss her so much...she is on my mind 24 hours a day.
I don'tr know what to do since I got the news....HAPPY HAPPY HAPPY!!!!

surgery 29 december

2008-12-19T10:10:00.002Z

still not able to see Dounya because Sanae is not well. This morning she crept next to me in bed and vomitted again...so early in the morning I was busy changing the sheets and comforting her. My eyes were still closed and when I got back in bed I fell asleep straight away and woke up at 8.15 AM!!! AArghhh and the boys are suposed to leave for school at 8.40!!so I rushed downstairs finding my dear Soufian had made bread for him and Chadi and eaten it already!!wonderful boy!! so after washing them, brushing their teeth and getting dressed they were ready in time.Phoned the GP and I will go with Sanae this afternoon...she is sick too long now and nothing seems to help.
Phoned the ward and Dounya is still doing well, being bottle fed and no tube yet!!I miss her lots and I realy hope I can see her this weekend again. Yesterday I spoke to the CLN and the surgery will most likely not be next week.The secretary of the surgeon had told her there was an other baby in need of an emergency operation and the date for Dounya will be 29th of december. Today there will be a meeting between surgeon, consultants and the CLN so I will know more hopefully this afternoon.Waiting...I will be grey at the end of all this!!!

Sick....

2008-12-17T19:30:00.002Z

Everybody in my household is sick...Even I woke up this morning feeling like I was in a fight with Mike Tyson. Yesterday when I got home I was feeling not so good already, muscle ache and sooo cold, but I was thinking it was because of all the emotions I went through. Well, that seems not to be the case..so I was in my bed most of the day (which I hate) and phoned the ward to tell them I couldn't be there and see how Dounya was doing. She was happy enough told the nurse, smiling away and they have started the bottle in the morning. She doesn't take much but it is a start.
Anyway during the day Soufian and Sanae were starting to feel less cheerfull and Sanae vomitted twice, The first time right in my neck and on my back... she was sitting next to me and tried to avoid it by hiding..behind me!Not a good sign..her temperature is up and down as wel as Soufian's so I don't have too much time to be sick myself. I phoned the ward again in the afternoon to check on Dounya and because of the sickness in my house we agreed it would be better to stay away from the ward until everything has cleared up..that does not make it easy for me right now not being able to be with Dounya at this stage but it is for the better. I don't want her or anyone else on the ward get some nasty bug because of me!!!But I miss her and I feel like I have abandoned her..being on her own.
PLEASE let everybody get well soon... I miss my kids messing about and their laughter!!

Surgery maybe early next week

2008-12-17T12:05:00.003Z

Yesterday Dr.Craig told me he had spoken to the surgeon, Mr. Gladstone and they agreed that Dounya might have her surgery as soon as early next week..all depending of course how well she will be. Since I have heard this news I try to cope will all kind of feelings...happiness, fear,relief, fear,fear and fear.I AM TERRIFIED!!! But I know she needs this surgery and if all goes well she will be a healthy baby who doesn't have to fight so hard anymore.The day itself will be difficult because Jamal can not be with me, he needs to stay with our other kids. That is the problem when you don't have a support network of family around you. I will just try to be strong and face it, praying she will get through it as good as possible.It will be the best ever Christmas present!!
I really hope it will be done next week so Dounya can have a brand new start in 2009!

Dounya has been transferred!!

2008-12-15T21:57:00.003Z

Finally...today the long awaited call from Belfast came...there was a bed free in the Clarke Clinic. I did not really expect it would happen today and even the medical staff were surprised but I was really happy!! Needed to get things organised quick though because I had the car and the boys had to be collected from school. So I went like Speedy Gonzales home, where i found that Jamal couldn't bring me back cuz Sanae was sick with fever....so got a cab, went back and heard that it still would be another 2 hours before the ambulance would come....
When they finally came they put her in her car seat on the stretcher and the sight was really funny.A tiny person on such a long stretcher!!
Dounya was looking around with big eyes and was enjoying all the attention she got. The nurses and doctors who were present in Craigavon came to say goodbye and wishing her well, She was like a little star ( which she is of course!!).
We have arrived safely and straight away you see the difference between Craigavon and Clarke Clinic..up here they are specialised in heart conditions and I know she is now in the safest hands possible. They have made an X-ray and listened to her heart and tomorrow they will do an echo.
Her breathing is still way too fast (88 p/min) but when you look at her she doesn't seem really bothered by it. They start to give her bolus feed instead of the continuous feed and possibly they will try again to offer the bottle and top up if necessary through the tube.
Dr. Craig came around and said they will see how she is coping with it all and have a talk with the surgeon about the surgery. They will not rush it only when it will be necessary, but they hope she can reach the 5 kilo before that. He also said that maybe she doesn't have to stay until surgery all depending on how she will do. I am not putting any hopes to that though.
Hopefully I have answers in a couple of days.
Fingers crossed again for GOOD news!

waiting

2008-12-12T17:54:00.004Z

We are still waiting for a bed to come free in the Royal. Every time a doctor comes in they put on a worried face even though she is looking better today and not as sweaty as she was before. Her breathing is still too fast and her liver still seems to be enlarged.
Dounya's pediatrician came to see her and was not happy that he was not informed she was admitted...for 2 weeks already!!!You know I was not all that keen on him but today I must admit he was quite different and maybe I have to review my opinion about him. The general opinion of all the doctors here in Craigavon is that surgery has to be brought forward, maybe as soon as around Christmas!!! They are not sure if it will be the one to repair or a temporarily( banding) surgery to give her the chance to grow more.I really hope it will be just the one off but as always: whatever is best for Dounya.
I hope after the weekend Dounya can be transferred to Belfast and hopefully a lot of things will be cleared up.

Today I went to see the Christmas play of Soufian where he played the role of one of the shepherds...sooo cute and it took for half an hour my thoughts of things.Jamal could not come along because Chadi is sick today and stayed at home. So I took Sanae along and she was having a great time!She kept saying she wants to do that too...Mmmm I hope she remembers that next year when she will go to nursery and really has to be in a play for Christmas!Santa has got all the presents for the kids which is a relief. Even when I will not be there but with Dounya in hospital we will try to carry on as normal as possible for them.
In the mean time...we keep on waiting...

heart failure

2008-12-10T23:16:00.002Z

like the title says Dounya is in trouble a bit and her heart doesn't seem to cope very well at the moment. It is decided that she will be transfered as soon as a bed is free to the Royal in Belfast, which probably will be after the weekend. They have found fluid in her lungs, her liver is more enlarged and her breathing is even in rest far to fast. the spironolactone is now changed into Captopril and she is under watchful eyes.
I am quite shocked cuz she seemed to be on the road to come home soon but now I don't even think she will be here with Christmas. The doctor who saw her on his round of the ward this morning said he did not think she will reach the 5 kilograms before surgery. And the surgery itself might be brought foreward..I am a bit lost and find myself weepy every time...which is quite unhandy when every time somebody steps into the room and I don't want to show how upset I really am.
Want to put up my brave face but I am just too worried at the moment....
positive vibes welcome!!

2008-12-07T07:43:00.002Z

Sunday morning does not mean having a quiet and lazy morning when you have 3 kids who get up at 6 am!!It is good in a way because I can get things done a bit early and leave for hospital. A lot of things are being put on a hold when Dounya is not here simply because I don't have the time at the moment.
Dounya has done well yesterday, no vomiting the whole day and night so far. I really hope the infection she had has cleared up and that we can try to offer her the bottle again alongside the tube.
Tomorrow The doctor will contact Clarke Clinic to see what they think of the situation. I asked what is own feeling was and his honest opinion was that surgery could be in January already.That is what I think and hope as well. Despite I am so scared about the actual operation I want her to be better and leave all this misery with feeding and weight gaining behind. I can just hope and pray that all goes smoothly and she recovers quickly. The surgeon is a very good one thank god, so I know she is in good hands.
My other children are not allowed on the ward because there is some nasty bug there.So they couldn't visit Dounya but I made photo's and video's of hr so they can see her from a distance. I did it also to prepare them in case she will come home with the NG tube. They are handling it well so far, but they really miss her. Every morning they ask where she is and when I answer she is still in hospital they are so disappointed. Chadi says we don't have a baby now, wee pet. He is so fond of his baby sister and wants her home (so he can kiss her again all over!!) Soufian is the one who understands she is there because she is not eating well and needs to get strong before her heart will be repaired. And Sanae says she is in hospital because her heart is broken....
I feel guilty towards them sometimes because I am not able to spend much time with them right now, although Jamal does. But he can't visit Dounya because he has to stay with them...difficult for all of us to be fair.But we will get through this ..some how you always find a way to cope with the things that are being thrown at you in life.

vomitting but smiling again

2008-12-05T12:55:00.005Z

Dounya is still in hospital and has her happy face put up again. Her feeding is still not how it should be though. She hardly drinks out of the bottle and needs to get most of it through the tube. The doctors think it is because of the viral infection she suffered from and maybe that's why she still vomits some of her feed back.I don't think she will be out of hospital these coming days...so I am racing between home, school and hospital again.I asked the doctor what would happen if she stays like this because the surgeon had told me that if she would get more trouble with feeding etc. the surgery might be sooner.He said that they would contact the Clark Clinic if her feeding would stay the same to see what they think of it. I just hope she will be out of hospital before Christmas. Would be nice if she could spend her first Christmas at home!!!

22h50
It is now a couple of hours later and they have decided to tube fed Dounya 24 hrs continuous because she either refuses the bottle or throws everything up again.. I don't know what is exactly wrong with her because she is looking and doing fine apart from the vomiting and not drinking.her temperature is also normal and she is bright and alert.Worries, worries worries...let's hope she is feeling better tomorrow

NG tube

2008-12-02T22:46:00.003Z

Yesterday evening Dounya got the NG tube in and it was quite hard to watch.My little girl was screaming her eyes out... I have never seen her so mad!!It took a while before they got it in the right place. When the nurse extracted a sample from her stomach there was a bit of blood but the nurse told me that would be just a little trauma in the nose after the tube passed there.God..I want to learn to do it myself but this wasn't encouraging. Dounya was quite unsetteled afterwards, gagging and refusing her bottle but after an hour I could get her to drink.
Early in the morning she pulled the tube out though and it is still not back in.

She not herself today, crying a lot, feverish and quite cross. And that is not how she is normally, so I really think she caught some sort of bug.Her blood and urine will be tested so I hope to hear the results tomorrow.
Her feeding is up and down but she gets the 24 hrs target so that's good. Hope the fever is gone tomorrow and that I will get one of her lovely smiles again!

back in hospital today...

2008-12-01T15:55:00.002Z

AAARRRghhhhh...well that covers completely how I feel right now. Why o why did they discharge us yesterday when obviously her feeding was still poorly????Today it got even worse so I phoned the dietitian and the CLN myself to see what they thought. My feeling was that it would be better to get the tube in. Duunya and me have battled hard to avoid it but i really think it would be better to get it sorted now. she needs to be as strong as possible and she needs to reach the 5 kilo at least.She had it in before while she was admitted but never when she was home. I have to think about it if I want to learn to put it in myself or not.On 1 side it might be handy but I think I will be afraid to hurt her or do something wrong. I will just see how they do it and then decide if I am up to it. Better get organised right now, packing her bag and stuff!Hope she doesn't need to stay that long!

She is home!

2008-12-01T09:55:00.003Z

Yesterday I could take Dounya home again thank god. It feels not right when she is not here and everybody is missing her in their own way. She is still not her old self, sleepy and not drinking what he should. Hope she will pick it up soon. Tomorrow she will be weighed again , I just hope she hasn't lost anything....even if she has just gained a little bit I will be happy.
I am feeling better as well, my courage is back!! I think sometimes you just have to let it al get out to feel stronger again.

There was a lovely poem on heartline.. want to share it.

We've all watched our children intently...
Memorizing each line...
And let them leave our loving arms...
And prayed things would be fine.
We've paced the halls awaiting news...
And wondered just what lie in store...
We've felt our own heart's racing as...
We walked through an ICU door...
We've seen the child we love so much...
Struggling to overcome...
The lines...the cords....the monitors...
No thoughts...no words...would come...
We've prayed for an improvement...
We've laid it in God's hands..
We've cried...we've hoped...we've worried...
We've wondered of God's plans.
We've learned just how a heart works...
Each valve and artery...
We've asked alot of questions...
We've faced each surgery.
And somewhere down this well worn path...
We've met more families...
Who know exactly what it means...
To live with this disease.
We've smiled at every triumph...
And shared in every sigh...
We've prayed for a child that struggles...
And each family that must say goodbye.
Some battles are fought with bullets...
And weapons made for war...
While these are fought in silence...
Behind a hospital door...
We've wondered what lies in our future...
We've been thankful for just one more day...
We've stopped and watched with tear-filled eyes...
Our children...as they play.
We've struggled with ounces and weight gain...
Why won't my child just eat?
But heart mom's ...we're a tough group...
We've learned how to face a defeat.
We've faced those moments...others do...
When life has got us stressed...
But it doesn't take long to remember...
That we are richly blessed.
We've taken on a whole new role...
One we wouldn't exchange if we could...
We know that life is difficult...
We hold onto all that is good.
God chose each of us carefully...
I do believe he smiled...
Some bonds begin with strangers...
And just one special child
__________________

Not again.....Dounya back in hospital....

2008-11-29T22:28:00.004Z

I am not happy. Not happy at all although I know it is for the best. Dounya has been admitted again in Craigavon hospital because she started to mess again with her feeding. First I thought it was because of the Duocal and she needed to just get used to it but when she started to cough, being more sleepy and more breathless I thought it was better to phone the ward straight away..The doctor I spoke to told me to come over and after they checked her they decided to take her in again.Was being told off by one the nurses that I should not phone the ward straight away but first go to the GP or A&E. Got angry because that is not what the doctors told me before...If anything contact us directly!!She did not think Dounya was severe enough to have open access....well let's not repeat what I thought but I think my look said a thousand words...WHY o WHY is everybody in there contradicting themselves????
Anyway when I drove home tonight I just couldn't stop crying which wasn't very handy because of the fog outside and this mixed with my tears turned everything in a blur. I think it is just frustration ,exhaustion( haven't had a proper nights sleep in a long long time) and the worries I have these last months.
I need a break but I know I can't just yet.

It is though sometimes being a heart mum.

Duocal and no app. in local hospital

2008-11-28T13:30:00.004Z

Dounya has started with DUOCAL which I have to add to every feed. Hopefully that helps her to gain another kilo before surgery and reach the target of 5 kilograms.When I was at the dietitian my ''friend'' the paediatrician passed us by and had a chat with me about Dounya. I told him what they told me in the Clark Clinic and he thought it was not necessary to see Dounya before surgery anymore, to avoid her coming to the hospital with the risk off getting a bug. Unless ofcourse there is something wrong but fingers crossed that will not be the case!!

I insert a link to sign a petition for media awareness of CHD..pass it on after you have signed yourself ofcourse!!

Online petition - Media Awareness for CHD ( Congenital Heart Defects )

Dounya's surgery soon

2008-11-25T21:09:00.003Z

Like I said on Friday yesterday and today I had to go to appointments with Dounya.
Yesterday I went first thing in the morning to our local hospital to get a blood sample. Her digoxin level was low so they have increased the medication. In the afternoon I had to go back to see the paediatrician in the outpatients clinic. Somehow I don't feel at ease with him. It started when I met him the first time somehow he got me upset and confused straight away. I think from that day on it went wrong. He makes me feel very insecure by remarks he makes. When Dounya was admitted in hospital he told me he was ''relieved'' she was admitted, and until today I try to figure out what he meant by that...It sounded like he didn't have too much confidence in me. And today he asked me if I was sure that I gave Dounya her Digoxin twice a day because the level in her blood was still low..I felt hurt! Like I will be so uncaring about my own daughter !! Every morning and evening I give it at 8 o'clock and I have never forgotten!! Of course not!!
He was not happy with her weight gain as well ( she gained another 70 grams so a total of 190grams since Tuesday!) and wrote a little note for my cardiac consultant and the surgeon: failing to thrive..consider NG tube ....
When I came back from the app. I felt like I am doing everything wrong but in my heart I know I am doing all I can!!!
So today it was of to Belfast...can you believe I was stuck in a cue for a parking space for an HOUR???I arrived 13.50 ( app was at 2.30) and got in at 2.55!! But luckily they know how bad it is there so it was not a problem.
Had a little talk with the surgeon. He said he would prefer it if Dounya will gain another kilo before surgery so she needs to be around 5 kilogram. But if we don't reach that he will go ahead with the surgery which will be in January or February 2009...
O my god that is so close already!!
If somehow she should need it earlier she will have it but I hope that will not be the case. I want to get her as strong as possible for this.
You can see he has a lot of experience and I have heard very good things of him so Dounya will be in good hands. Does not make it less scary though..

After my meeting with Mr. Gladstone I had a chat with the Cardiac Liaison nurse and after she had talked to the CC, Dr. Craig she said they were happy with Dounya. She is gaining weight although slowly and they want to try to avoid the tube. Tomorrow she will phone the dietitian and discuss with her the option to add duocal to every feed. I hope that will do the trick.
And she said I was doing my very best with Dounya which showed in her being so content and happy. That was a boost for my confidence and I really needed that
after yesterday!

So the countdown has begun...January or February... I am terrified already!!

2008-11-22T14:41:00.003Z

Yesterday Dounya was weighed again by the health visitor and she gained 120 grams!!

Very good but I hope she will continue for a change. Every time I get excited that she has gained proper weight the next time she either has lost or it is far less than she should so I just hope for the best this time.

She is doing fine at the moment, drinking between 80-100ml every 3-3 1/2 hours which is quite good I reckon and she is really exploring the world around her, watching her brothers and sister with a big smile and trying to grab and hold things in her little hands.

Next week we have a busy week together, going to Craigavon hospital twice on Monday and heading to Belfast to see her surgeon on Tuesday.

Monday morning they will take some blood to see if her digoxin level is alright now and in the afternoon we have an appointment with the paediatrician.

Hope everything will be fine and maybe I get an idea when her surgery will be on Tuesday when I speak to Mr. Gladstone.

DOUNYA IS HOME!!!!!!!!!!!!!!!!!!

2008-11-18T20:23:00.003Z

Yesterday afternoon I could take Dounya home again... !!!!

She was doing OK enough and the doctor would rather get her off the ward because there were so many children with all kind of bugs and we don't want her to get anything else. We were so happy to get her home again and the other kids were all excited!

Today however I needed to get her weighed again by the health visitor at my GP and to my disappointment she has lost 55 grams since Sunday. She asked me what I wanted to do..call my CLN for example. I thought it was better to call the ward were she was. The doctor on duty said not to worry to much about it and asked the health visitor to get her weighed again this Friday. So she will do that at my house.

IT IS SO FRUSTRATING!!!! I am doing the same routine like in hospital, every 3 hours day and night, 75 ml at least and this result??What is going wrong?? I start to think a NG tube might be better after all...I have never had this kind of stress before with my other kids and it is really hard sometimes! I want her to be chubby like all of them were but instead her skinny legs still are skinny and she looks like a newborn.

How many times people ask me how old she is and when I say she is 3 months you just see the surprise on their faces..like I am not feeding her properly..or whatever goes through their minds...I want to scream it out sometimes: DON'T JUDGE BEFORE YOU KNOW WHAT IS GOING ON!!!
Frustrated, worried (AGAIN!!) but always hoping things will turn out right eventually that is me at the moment!

And Dounya....??Sound asleep and content like a little angel ...not a worry on her mind! Good girl!

2008-11-16T22:15:00.003Z

Finally I found some time to update Dounya's blog! The last couple of days I was just running between hospital, home, hospital, school and hospital again but don't think I start moaning now! It' s all part of the package when you have a heart child and although I wish it was not necessary for Dounya to be in hospital in the first place I would not want to do it any other way. But I am tired that is a fact.
Dounya though is our little fighter..''no tube for me, no way'' is what she got in her little head! Yesterday the doctor told me that if Dounya didn't get the required 75 ml in every 3 hours she would get the NG tube in today. And I really was wishing and hoping that she could manage that because I rather avoid the tube. If she was really having a lot of difficulties while drinking I wouldn't think twice about it but she is fairly quick with drinking whenever she is hungry. Sometimes she struggles a bit with the last 10/20 ml but if I give her a break she usually gets it all in. This morning the doctor was happy enough with her drinking and she has gained a whopping 105 grams in 3 days!That is a mayor step forward since last week with 40 grams in 7 days. I hope that it was just having the 3 vaccinations this week that has thrown her back a bit this week and that she will continue to gain like this.
Her Digoxin level in her blood was low so they have increased that a bit and tomorrow they will check her blood to see if it is on a good level again and they will check everything else as well.
Hopefully I can bring her home tomorrow when all is well but I don't know that for sure.
She is smiling away and is having little ''conversations'' with the doctors and nurses. something like rgrrrth..agu..agu... ooh.... Probably means something like ''are you done yet??''
Everybody is saying she is such a lovely baby, so settled and easy going ( which is great to hear and I know..hehehe) but then they spoil it by saying they might steal her...not once ... I have heard that now a dozen times..Very reassuring....NOT! Imagine what went through my head when they moved her Saturday morning to an other part of the ward without me knowing.........!!!!!
But serious, I know she in the best of hands and they are doing a great job so far!

Fingers crossed for tomorrow!!

2008-11-13T23:29:00.003Z

Dounya has been admitted in hospital this afternoon and I am not sure how long she wil stay, but hopefully not too long. Her lungs are a bit wet but that is not the main concern.
It has mainly to do with her poor weight gain so they want to see if she is going to need a NG tube eventually. Will update tomorrow.

2008-11-12T19:54:00.002Z

No added calories ...more likely she has to be NG tube fed...that is the news I got today.

I was up at Craigavon hospital because Dounya needs to get an extra vaccination every month until February to prevent her from getting bronchilitis, the so called RVS injection.Within 10 minutes it was over and done with.
Being there already I thought to pass by the dietitian because I did not hear anything back since yesterday. The dietitian I spoke to told me her colleague would call me this afternoon when she got in. And indeed she did. After she had inquired about Dounya's feeding routine and amounts she took she decided she would discuss it with the paediatrician.
I asked her if there would be added calories but she she said she did not think that would help much and she was thinking more of tube feeding so I can top her up.Quite a shock ..I did not expect that one!!
But she said it is necessary that she will gain a good weight before the surgery because otherwise they can not do it. Of course I understand that and I just want what is best for Dounya. I really have the feeling that the operation will be some time soon but it is frustrating I am not sure about it.
Any way she would get back to me today or tomorrow. Well she did not get back to me but a paediatrician who (among others) took care of Dounya when she was admitted in hospital. He told me Dr. Quinn was not there but had asked him to check Dounya over to see if it was not an other failure we are facing !!!Another shock...am I missing something here???what failure, apart from her poor weight gaining she seems to be fine...or is she????So tomorrow at 1.30 I have to be on the ward were she was before to see this doctor.
I AM SO WORRIED!!!! But it does not help to get myself panicking so I wil just try to not think about it too much. Just hope for the best.

2008-11-11T21:53:00.003Z

An other appointment for Dounya today. She needed to get the 3 months vaccination and I got her weighed again, fingers and toes crossed it would be more compared to last week....But no it was even less...a lot less.... just 40 grams aaarghhhh!!!!!!!!
So I contacted the CLN and the dietitian and hopefully tomorrow or some time soon I can start with the added calories.
The CLN informed me also that we have definitely an appointment in 2 weeks time with the surgeon....I am still wondering what it means.. surgery soon????
But I think I just have to wait and see what happens at the appointment( says the most impatient person )

2008-11-10T22:14:00.005Z

Last night I could not sleep and I had some flashbacks about the day Dounya was born and the day after, the day that we heard something was wrong with her heart.

The birth itself is still a bit of a blur but I remember it did not take her long to say hello to the world..2 pushes and there she was. First I saw her wee head full of black hair and the moment she lay on my tummy I fell in love with her. She was absolutely beautiful!!!! I remember that the midwives couldn't finish whatever they were doing after the birth because I kept telling them to leave it alone I wanted just to hold my little girl! I was so happy..there she was ..finally. Up the ward I was like every mum...sore but oh so proud and I could not bear to leave her alone in her little crib I had to take her next to me every time I got the chance. But within 24 hours my happiness turned into despair when they told me there might be something wrong with her heart.And then the ''might'' turned into there IS something wrong..
My head was spinning '' ...her heart??? O my god.. that is the most important organ in a human...how serious??life threatening??Does she need surgery??What will happen to her??Will she be OK?? will I loose her??Please god no!!HOW??WHY???''

There I was lying on the ward, the curtains closed, holding my perfect little girl and I don't know how many tears I have shed.
I felt so lost and alone.....
It could be years ago but it is just 3 months.
And it seems like we have landed in a roller coaster so much has been happening since that
day
For myself I like to avoid doctors and hospitals and even innocent painkillers I rarely take. In these 3 months I have seen more medical staff than I have seen in my whole life and that is 36 years! But I happily will run 1000 times or more to whatever it is she needs (and back again )as long as she will be alright!

I think right now of all the beautiful children who lost the battle with their CHD...their families ....and I say a prayer for all of them silently.

fly high little angels...you will never be forgotten!

I light a candle in your memory...

I hope everyone who read my blog will join me and light a candle.

2008-11-09T00:38:00.003Z

Found this poem on the internet and I think it says it all for us heart mums:

Poem from a "Heart Mom"

You passed me in the shopping mall...(You read my faded tee)

You tapped me on the shoulder...Then asked...`"What's a CHD?"

I could quote terminology...There's stats that I could give...

But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....

It's wondering...Lord what's your will?...

It's monitors and oxygen tanks...

It's a constant reminder...to always give thanks...

It's feeding time, calories, needed weight gain...

It's the drama of eating...and yes it's insane!

It's the first time I held her...(I'd waited so long)

It's knowing that I need...to help her grow strong...

It's making a hospital...home for a while...

It's seeing my reward...in every smile.

It's checking her stats...as the monitors are beeping...

It's knowing that there... is just no time for sleeping...

It's caths, x-ays and boo boos to kiss...

It's normalcy...I sometimes miss...

It's asking...do her lips look blue?

It's cringing inside... at what she's been through.

It's dozens of calls to her pediatrician...(He knows me by name...I'm a mom on a mission).

It's winters homebound...and hand sanitizer...

It's knowing this journey...has made me much wiser.

It's watching her sleeping...her breathing is steady...

It's surgery day...and I'll never be ready.

It's handing her over...( I'm still not prepared...)

It's knowing that her heart... must be repaired...

It's waiting for news...on that long stressful day...

It's ...praying...it's hoping...that she'll be okay.

It's the wonderful friends... with whom I've connected...

It's the bond that we share...it was so unexpected...

It's that long faded scar... down my child's small chest...

It's touching it gently...and knowing we're blessed...

It's watching her chasing...a small butterfly...

It's the moment I realized...I've stopped asking...why?

It's the snowflakes that fall...on a cold winter's day...(They remind me of those...who aren't with us today)

It's a brave little girl...who loved her sweet Pinky...Or a special heart bear...or her beloved little binky....

It's the need to remember...we're all in this plight....

It's their lives that remind us... we still need to fight!

It's in pushing ahead amidst every sorrow...

It is finding the strength to have hope for tomorrow.

2008-11-07T20:38:00.003Z

I used to love autumn...The colors of nature that change, breezy and rainy days when it is lovely to be home and make it nice and cosy in the house. But this year I am looking at it differently.

It is not about cosiness but of those nasty bugs that are floating around which I want to avoid so desperately for Dounya. A hard task when my two boys easily can take something home from school. The whole family has been sick this last month,Chadi even twice, and I really hope that's the end of it for this year. We can't protect Dounya from everything and if she did not have a heart defect I wouldn't worry so much, but now I do.

This morning I phoned the cardiac liaison nurse to see if Dr. Craig had studied Dounya's heart scan like he said he would do and maybe talk to the surgeon.

It seems that they have had a meeting this very morning and that I will probably get an appointment with him on the 25th of November. The surgeon, Dr. Glaston will inform us then about what he is going to do and what we can expect before and after the surgery.

The CLN also would contact Craigavon hospital today to discuss Dounya's poor weight gaining and maybe get her milk changed.

We need to get her as strong as possible when the day comes for her surgery so I don't care what milk she will be on as long as it helps her gaining weight and growing.

The mail brought me today the book from Heartline which I had ordered, ''heart children a practical handbook for parents''. It is really good, explaining the main congenital heart diseases, diagnoses and tests, treatments,etc. Very useful and apart from Dounya's CHD I know a bit more about the conditions that the other children from Heartline have and what it means.

Shocking there are so many defects that may occur and before I had Dounya I never knew about them!!!

never too old to learn

cardiac appointment

2008-11-04T20:06:00.002Z

Today Dounya and me had to travel to Belfast again for her monthly cardiac appointment. We had to be there at 9.30 a.m. and considering the traffic jams at that time and finding a parking space I decided to leave at 8.15 a.m. Normally the drive will take me about 20 min but now it took me more than an hour so I was still too late. I will not repeat the curses I have said but I am sure you can imagine them...

Anyway, Dounya has been weighed again and she gained 80 grams which is not much. She had gained the same last week but at that time was happy with it because of her chest infection and not drinking well. But today I was disappointed. I really hoped she would have gained a bit more.

They did a scan of her heart as well but Dr. Craig wants to study that a bit further to see how the pressure is between the 2 lower chambers and speak to the cardiac surgeon about a possible date for her surgery. Which I am happy about on side because then we will know when it will be but I am terrified as well.....

Her medication is increased a bit in relation to her current weight and if in a months time her weight gaining is still poorly he wants to add extra calories to her Infantrini milk. So there you have it..I am not really happy about the results and I am worrying a lot since the appointment.

If you look at her she seems content enough and she is showering us with her sweet smiles but I know she is struggling more with her feeds. This afternoon when I fed her she was a bit blue around her mouth and she never had that before so the signs are there that it is getting harder for her.

I need to think positive so I will keep trying to do that, but today I allow myself to be a little bit sad.... wishing she would not have to go through all this.

For Dounya

2008-11-02T08:47:00.010Z

Hold my hand precious one

Hold it tight and I guide you

Through this great adventure called life

Look with me precious one

at the things around you

Full of wonder we are for the things we see

Listen precious one

Do you hear the sounds?

All the different noises... what could it mean?

Smell precious one

For there are so many sweet odours

The smell of flowers, fresh cut grass and so much more

Taste precious one

All the good things in life

There is so much to discover

Touch precious one

Soft, hard, rough, smooth

the different textures that we find along our journey

Live my precious one

Grow and be strong

Discover life and live it full

Be strong precious one

Because it is not always fair

Believe in yourself and you will be allright

Be sure precious one

That I will always be next to you

Holding your hand when you need it

Mummy

happy haloween!

2008-10-31T16:24:00.012Z

Today it is the 31st of october so that means 1 thing...HALLOWEEN!!! It is much more celebrated over here then in the Netherlands where hardly anyone put the effort in some

decorations around the house.

The kids were looking forward to it since the beginning of this month so a couple of weeks ago I have put the decorations in the house and bought them some dressing up clothes.

Soufian as a Vampire/devil, Sanae as a witch, Chadi as some scary monster/ master of the dark. ( the photo above was taken last week when they dressed up for fun ) and for Dounya a little bat suit.

They were so excited today at the whole dressing up/ Trick or treat thing!!!

So after tea ( for my dutch friends: that means dinner time ) I got them ready and put my witch hat on as well ( More I was not willing to do !!) and off we went in our neighbourhood. Chadi was the leader in this.....knocking the doors and shouting ''TRICK or TREAT '' and Soufian and Sanae watched from a safe distance until the doors were opened and the sweets came out. Really funny to see this. Normally Soufian is the first to do things but seemed a bit shy now

They had great fun until Chadi heard the fireworks and really panicked..he can not cope with loud unexpected noises. So that was the end of it and we headed home.

It was nice to see them having so much fun at their first halloween out and about although hopefully Chadi overcomes his fear for fireworks next year. And maybe by that time Dounya will trot along too!!!!!!

Chadi and Soufian

2008-10-30T22:28:00.005Z

Today it was parent/teacher interview at the primary school of Chadi and Soufian. Education is one of the things I find really important and I try to support my boys as much as I can, hoping that it will result in them enjoying school. I really think that the years in primary school are the most important because that is the time that you lay the basics.

My eldest son, Chadi, is diagnosed with Asperger syndrom which is a form of autism. To understand what this means I have copied some information about Asperger syndrom below

ASPERGER SYNDROM
People with this condition have difficulties in three main areas.

social communication

have difficulty understanding gestures, facial expressions or tone of voice

have difficulty knowing when to start or end a conversation and choosing topics to talk about

use complex words and phrases but may not fully understand what they mean

be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm.

social interaction

struggle to make and maintain friendships

not understand the unwritten 'social rules' that most of us pick up without thinking. For example, they may stand too close to another person, or start an inappropriate topic of conversation

find other people unpredictable and confusing

become withdrawn and seem uninterested in other people, appearing almost aloof
behave in what may seem an inappropriate manner.

social imagination.

imagining alternative outcomes to situations and finding it hard to predict what will happen next

understanding or interpreting other peoples thoughts, feelings or actions. The subtle messages that are put across by facial expression and body language are often missed

having a limited range of imaginative activities, which can be pursued rigidly and repetitively eg lining up toys or collecting and organising things related to his or her interest.

While there are similarities with autism, people with Asperger syndrome have fewer problems with speaking and are often of average, or above average, intelligence.

So there you go...A lot of obstacles for Chadi to tackle.

He is at the same primary school as his brother just he is in a special learning support class for children with learning dificullties. He has been there since P1 ( he is now in p2) and will stay there until p4. And I think ,and so does his teacher, that he is doing really well at the academic part but his behaviour still needs to be improved. The same thing at home, because he can be a handfull ...well 3 handfulls even. But I see much progress since last year so keep up the good work little man!! We will get there!

Soufian is doing very well. He is really creative and very social and loves to try out things himself. It usually means that things what he gets his hands will be dismantled....or gets broken!!! ( MMM....... THAT IS EXPLORING THE WORLD AROUND YOU ...) But he is a great boy and really funny sometimes.

I am proud of my boys and I hope they will continue to do well.

Next year Sanae will join them at school when she will start nursery..I am looking forward to see how she will do!

snow in october....

2008-10-28T21:16:00.004Z

Today was a check up day again for Dounya, here in Craigavon Area Hospital. I was not really looking forward to it .

I was sure that she had lost some weight due to her poor feeding last week when she had the chest infection. She barely drank milk for 2 days and then she started slowly to drink more again. These past 2 days she drinks really well, she is now on 70 ml every three hours..a bit less during the night '' because I wanna sleep mummy...'' .

But it went better than I thought!!

She gained 80 grams(!) which I think is good when you put in account she was sick. and the infection is all cleared up. The paedetrician thought she was really looking settled, satisfied and alert, so good news alltogether.

Next week I have a cardiac appointment in the Royal in Belfast so I hope she will continue being a good girl :-)

Something else: SNOW IN OCTOBER????????????

I could not believe my eyes this morning when I saw it was snowing! I really thought Holland had some bad weather but I start to think it is worse overhere!! Oh well you can not have it all, can you?? ;-)

2008-10-27T19:46:00.005Z

I never thought this would be so much fun to do!! It is like a diary, but one I can share with you so you can keep track on Dounya's progression and see some of the insides of my hectic household. And hectic it can be...

Today I had put my mind on cleaning the house (again.....grrrr) from top to bottom.

Sometimes I ask myself why I even bother: As soon as Chadi and Soufian enter the house when they come back from school everything is turned upside down again. You find a trail of toys, crisps ( or cookies) and whatever else from their room to the living room and all the rooms in between. But I have introduced something new: CLEANING UP BEHIND YOU!! When I say it to Chadi he looks at me like I am speaking a foreign language but Soufian and Sanae are doing their best so I am happy enough ;-)

So I had my task set but our Sanae was not her self today...yep she too caught te bug which has a grip on our entire household these last weeks. So our little ray of sunlight had turned into a thundercloud this morning all weepy and grumpy. When she finally fell asleep on the sofa and Dounya as well in her basket I could get on with things. I was nearly finished when the phone rang and a lady of an organisation called Surestart asked if she could call around later in the afternoon to register me and see if there were some activities I would be interested in. It is an organisation who have all sorts of activities for babies and toddlers and their mums ( and dads).

So it sounded interesting enough and I agreed that she could come at 2.30 pm.

It was a very nice lady who worked as a health visitor as well . We talked about a lot of things like Douya her condition, Chadi's learning disabillities ( he has Asperger syndrom ) my working background in the Netherlands and courses I could follow here etc. and ofcourse about some activities I could do with Dounya and Sanae. They have playgroups for the wee ones while the mummy's can have a quiet cup of coffee, baby massage ( lovely for Dounya) dancegroups for toddlers and loads more. So I might try some out!!

Because she works as a health vistor as well she has seen quite a lot of babies with a CHD. I asked her if there was a support group here in N-Ireland, because I have searched but couldn't find an active one. And then she said : ' no there aren't any, but maybe they are waiting for you to start one!' and she said something else as well something about she could see I am a strong woman ( WHO, ME??)

I am not sure if I am but it is really nice when somebody thinks that of you. Since I am not working anymore and not doing some kind of study, sometimes I feel like I have come to a stand still. I would love to pick up some study in Social work again and go back to work. But at the moment those are things for the future, when Dounya has had her surgery and all is well.

And who knows...I might start a support group overhere in the future...:-)

To all who put a comment on this blog: THANK YOU I really like to read them so keep on doing it!!!

Just some thoughts

2008-10-26T21:15:00.006Z

An other day has passed and a long day it was with an extra hour added to it!!. I wish my kids had a build in clock that would automatically be set on winter time!! I could have had my extra hour sleep then :(

I was thinking just now how odd it is that you start caring much more for other people when you are confronted with ilnesses yourself. Before Dounya's birth I didn't know much (zero) about Congenital heart diseases and now I found that there are so many!!! I have heard of heart murmurs and a 'hole ' in the heart but did not know exactly what it meant. Through Heartline I have learned so much..not only about the different conditions but also about courage and support.

Living here means that we have not a real support network around us. Jamal has one brother living here and we have some friends but everybody got enough things on their own plate. And I don't want to feel like I am a burden to someone. So mostly Jamal and me depend on each other.

Because I am the sort of person who wants to talk about her feelings and Jamal is more closed I am happy that I have found different ways to express my thoughts and fears. So I am 'blogging' away and nearly every evening checking heartline.

That's my way of coming to terms with Dounya's condition.

It is a long road ahead of us, and a rocky one but I hope Dounya will come through all of it fine.

Luckily she is not aware of the things that are waiting for her in the future..

When she gives me her ' 1 million smile' and she looks at me so trustfull it breaks my heart that she will to go through something major as a surgery when she still is so small..but hopefully it will go the way it should and she comes out as a healthy little girl...time will tell.

She is fast asleep now with a smile on her face...she must be having a beautiful dream!!!

the beginning....

2008-10-25T12:19:00.001+01:00

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 surgery..an 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 home...it took 13 days before it came and I was over the moon when they said the tube could come out too!!

NOW

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.

FINGERS CROSSED IT IS NOT TOO MUCH!!!

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