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.

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 )

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.

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.

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

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

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