Saturday, 29 November 2008

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

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.

Friday, 28 November 2008

Duocal and no app. in local hospital

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 )

Tuesday, 25 November 2008

Dounya's surgery soon

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!!

Saturday, 22 November 2008

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.

Tuesday, 18 November 2008

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

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

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 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 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!

Sunday, 16 November 2008

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!! I Hope

Thursday, 13 November 2008

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.

Wednesday, 12 November 2008

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 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.

Tuesday, 11 November 2008

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 Thumbs Down 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 appointmentNervous 2( says the most impatient person )

Monday, 10 November 2008

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 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
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 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.

Sunday, 9 November 2008

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 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 help her grow strong...

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

It's seeing my every smile.

It's checking her 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 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's hoping...that she'll be okay.

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

It's the bond that we 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.

Friday, 7 November 2008

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

Tuesday, 4 November 2008

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.

Sunday, 2 November 2008

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