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!

Wonderful

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!!!

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

DOUNYA HOME FOR CHRISTMAS????

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

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....

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

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!!

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

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

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!!

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

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

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...

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!

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
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