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.

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 )

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!!

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!!!!!!!!!!!!!!!!!!

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!

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!!

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.