A new blog...

I am sorry that I have been lazy and not updated the blog but I have been working on a new one. The Swedish version is up and running but I had big problems with the English one.. I decided to get a separate site for the English blog and I will be working on it but for a week or so it might change apperance every day because I have to build it up from scratch again, so bare with me... it is coming :)

The new adress will be.  http://fairylights.se


Some updates.

Well there has been some time since I updated the site and that has a lot to do with less time to spend since I am back to work again.. :)

Emily is doing just fine. We were back to hospital this monday and she now weighs 9,2 kilos and have a saturation of 88, so we are very happy about that. Next week there will be a new examination and I will fill you in on that too.

I just wanted to post a picture that the surgeon drew for us when we were in Lund. It is a simple picture of Emilys heart, with the specific defects that she has. It looks a bit funny because I coloured it to make it easier to see what is what, but I am sure you can cope :) There is also a picture of a "normal" heart so that you cn see how it should be...


The top MAPCA vessle was moved from its place and is now attached to the pulmonary artery on one side and a shunt has been put in between the other side of the pulmonary artery and the jugular vein to increase the bloodflow and hopefully make the arteries grow a bit more.

I will be back soon and fill you in on what is happening...

In the meantime, her are some photos of a big girl :)

First christmas...

It has been here now and gone again.... Christmas that is. It was Emilys first christmas and she had some new fun meetings and experiences. Although, a while there we did not know if the whole family would be together.. Keith got stuck in England when heavy snow hit the country and he missed his flight back to Sweden. He got lucky and was able to get a standby ticket on a flight next day, so christmas was saved..:)

We hope that you all have had a wonderful christmas and that the new year will bring lots of happy moments!

Here is a portfolio of Emilys christmas and a video of her and her new bestest friends...

Emilys new favourites...Nanny and granddad swedens dogs, this is 2 of them. Bettan and Diva.

Trying to play with as many toys as possible...

Just checking what is on the telly...

Having a bath in the livingroom ( haven't done that before..)

Look, my new cute clothes that nanny and granddad sweden gave me :)

Just chilling..

Christmas food is best shared with loved ones..

Awwww, what could this be? A gift from my sister and family :)

Hmm, uncle Daniel was a bit scary in the beginning but if you bring fruit even a little girl melts..:)

After all of this it is not possible to keep ones eyes open...

Otherwise, nothing new to tell you, Emily is doing great and has had her shot for the RS-virus and will have the next one in Januari. She had her second vaccination against childhood diseases  and she did really good this time, perhaps she is getting used to all the needles she is having...

We will get back to you all soon again..:)

Hugs to you all!

Lots to learn.

Little one is learning new things all the time, she is eating "normal food" a lot better and has discovered some other skills as well.

After a couple of times in the walker she has figured out what to do..
Well almost...:)

And then we have the big favourite, the bath, with a funny new side to it...

Emily thinks that dad might need a bath as well.. :)

And after the bath, this is how happy a little girl can be... at least 9 times of 10...lol

At this moment everything is just fine with all of us so we can spend the days just discovering new things and new games to play.
We are finally able to pick Emily up the way we used to and she loves to stand up and has managed to turn over on her tummy a couple of times.
So, lots of progress in our everyday life, just the way it should be. :)

Dad is the best..

Little one is sitting at the kitchen table, playing with her toys and some other great stuff... She throws them on the floor so that dad can pick them up again, a really fun game.
But..look what happens when daddy (outside the picture) makes some funny faces. The toys are forgotten and dad is the only thing she sees. :)
Excuse the somewhat jumpy picture but it is hard not to laugh when she starts..lol..

Toys are fun, but dad is the best...lol

She also had a little pressie..it will take her some time to get used to it but I am sure that the photos show what she thought of it.

Well that was all from us at the moment..




Time is really flying and it shows when looking at Emily, she is 6 months already...:)
Not only is she quite big for her age and has lots of teeth on the way, the other day she sat up in her pram when we were out shopping. That was when we decided that it was time to start using the pushchair instead. She is still a bit wobbly but with the right filling around her and straps to hold her in place it works great. And Emily.. well, she could not be happier, she can see a lot more now.:)

The overalls are still a bit big even though it is the same size as the clothes she is starting to wear now..
But...as long as it keeps her warm we are happy.:)

It as been a few days now since she had the vaccination for the dreaded influensa and she is doing just fine, she had a bit of a fever and was tired but otherwise ok. Mum has had her shot as well so it is only dad to go...

This is how happy a little girl can be, even though she had her vaccination just a couple of hours earlier.

The days are starting to get back to normal again, Emily is a bit more whiny than before the surgery and a lot more noisy, but that has a lot to do with her development as well..:)

Hugs from all of us!

Fashion show..

The other day there were 2 parcels in the post....all the way from England. They contained lovely cardigans, 4 made by nanny England and 1 made by auntie Doreen.
We just had to have a little fashion show, to let you all see the cardigans. Unfortunatelly some of the photos were a bit dark, but you can still see a happy littl girl..:)
(one of the cardigans is not shown here)

Today was hospital day again, everything looked just fine and she had put on weight, she is now 7720 grams. The doctor also decided to lower her diuretic medicine, she will now have it twice a day instead of three. Next visit will be in a month.
Emily also had her vaccination against the swine flu so we will have to keep a watchful eye on her to make sure she is ok. Of course she might have some fever and be a bit affected by it but it should not get any worse than that. So far she is doing good.
Now it is just mum and dad to go...

We also recieved some photos from our visit at Anna & Kaz, one of them just had to be put on this site:)

Visiting Anna & Kaz (Björn) Hope to see you soon again!

A bit of this and that..


Here are some news from the last few days.

Before little ones operation we kept away from most everything and everyone, afraid that she would catch something. We are still very careful but are out a bit more. The other day we went into town (Stockholm) and it was the first time on the subway for Emily. The trip in was not to fun, packed with people but the trip back was better and she could sit on dads lap, looking at all the people.
The man in the roof screaming at every station was a bit scary though...:)

The nights are still not back to normal and Emily wakes up crying on and off through out the night, never getting the proper sleep, just like her parents..:)
We are not quite sure what is wrong but we think that the picture below show what could be one reason...

Lots of teeth on the way in a little mouth..

Now that she is eating a lot better we have started to give her potatoes and carrots again. She is ok with it but nothing is as good as the milk..:) It does however give her some practice in sitting in one of her chairs.

Look at me mummy :)

The last little bit of news but not the least is the next picture. Emily was playing on the floor and all of a sudden this is what we saw...

Only the arms go before a full turn around:)

So, finally some everyday news from us, not just hopitals and treatments, it will be a lot of that to come anyway..

Contact us?

You might want to contact us without writing in this blogg or perhaps both..:)

Anyway, here are our e-mail adresses.

Nina: irva@telia.com

Keith: warms@telia.com

Out of the hospital..

Yes, it has finally happened, we have been released from the hospital. :) We have a check up again next week, but until then we can just relax and take care of each other.

On Monday, they were slightly worried that her liver felt a bit big and that she had not been peeing much, an ultrasound was done and the doctor could see that the liver was infact enlarged, and that this was due to fluids. She had gained 120grams over the weekend which was a bit on the high side and another sign of fluid in the body.
The shunt they put in her in Lund is so far a bit too big for Emily, she must grow into it, but what this means is that her heart have to work harder and this may cause fluids in the body. 
They increased the dose of her diuretic medication and today when we were back everything looked much better, she has also urinated a lot better ..:)

Little one has also begun to gain weight again and is now eating 180ml/meal, really good. When we weighed her today, she weighed 7530g.
As soon as the results of the blood tests had come back and all the other checks were made and ok, we were told we were being released.
So, the thing that is most troublesome for Emily right now is that her upper teeth are starting to show :)

We also had a package from mum Ninas work. When we opened it up it was a gift for Emily in it with best wishes from all of the workmates.

Thank you all!
This is how little one reacted..:)

We will be back again soon...

First week back home..

There has been a lot of going back and forth to the hospital and as you all might understand, the computor is not my first prioroty right now..:) That is why the blogg has not been updated..

Here is a summary of what has happened the last week.

The first night at home (Monday) was a tough one. Emily had a hard time relaxing and woke up every 30 minutes crying. We also had to wake her up every third hour to feed her, she was still not eating more than 60-100ml per meal. So we were all exhausted the next morning...

On the tuesday we went back to ALC early in the morning and tests and checkups were done. She was examined by a doctor and she could clearly see that Emilys eardrums and throat were red, the infection was now a fact and a good indication as to why she did not want to eat. An x-ray of the lungs and an ultrasound of the heart wer done.
The x-ray showed that there were no fluids in the lungs but they were a bit inflated so she got medicine to inhale.
The ultrasound were made to see if there were any fluid around the heart, they suspected this because of Emilys weak and highpitch voice. No fluids were found and the only explanation for her voice are the many intubations she went through. This will hopefully be better with time.. Same thing with the virus, we can only wait for it to go away. They wanted to do more bloodtests in a day or two to make sure that the infection did not get worse.

We went back again on wednesday to do some more tests and to check her weight. She was eating a lot better, between 100-150 ml per meal but she was still loosing weight...

Thursday was spent at home, we got the day off..:)

Home again and playing on the floor.:) It is hard to belive that it is only 2 weeks ago she had surgery...

On friday we went back to ALC to leave a bloodsample and to do the normal checkups (saturation, bloodpressure, breathing frequence and weight) Once again she had lost weight.. She was 7310 grams compared to almost 7700 grams before the surgery. It is perfectly normal to loose weight after a surgery and everything she went through but it is 2 weeks ago now and she should not keep loosing weight...
We got some suppliment to give her in the food and I am glad to say that she is starting to really like her food again, hopefullt we will have our little chubby back again soon...)
The bloodtest showed that the infection was going down and her eardrums were not red anymore.
We got some medicine for her tummy and hopefully that will help her with the vomiting and to settle her stomach.

Her wound was now healed and looked great so we asked the doctors about something we have been waiting to do and they said it was ok... So, when we were done at the hospital we went straight back home and gave little one a bath, she was so happy:)

We have the weekend off now and have to go back on monday, if everything looks good they will discharge us and we will be back in a week or two..

I will of course keep you all up to date in the future as well, perhaps not as often as I have now and hopefully with some everyday stories and some more fun ones..

Hugs to you all out there, if you only knew how much you have helped from all the corners of the world. Thank you...

Going home..

On monday October 19th the time had come to go back home. :)

Since Emily clearly showed signs of a viral infection the doctors in Lund wanted us to go straight to Astrid Lindgren Childrens hospital (ALC) in Stockholm. She still did not eat as well as wanted and they were worried that she might be dehydrated. Before the surgery she had 220 ml every meal, no she would only take 50-80ml.. Not good at all and now we were really glad that she had such a good weight before the surgery.

This was a special made chair that we could use in the pram.
A really good invention but it was a bit difficult getting her out of it again, we could not lift her the way we used to...

She still hates taking her medicine in the mouth, but the syringe is fun to play with..:)

At 11 o'clock it was time for us to leave. We said our goodbye and began the long journey home. Luckily we could once again stay at Anna and Kaz for a much to short but relaxing break...:)

At around 20:30 we arrived in Stockholm and ALC. We were greated by some known and unknown faces and they took the tests needed on Emily. We decided to go home over night and return to the hospital again the next morning. They agreed to that only because we live 10 minutes away, otherwise they would have liked us to stay in the hospital. We could not wait to get back home again and get Emily back to normal surroundings.

After two very long weeks we finally stepped into our flat again...

Going home soon...

There has been some examinations today as well, some less fun like taking bloodsamples and some a bit more fun, like the man with the stick-man..:)

The bloodsample was taken this morning and it showed that Emily has some sort of infection, probably a virus, so all we can do is wait for it to go away. She also got some hydrocortisone cream for the rash and it helped a lot, the rash is still there but looks a lot better and is not as red as before and hopefully not as annoying...
She has been eating a lot better, has been a lot happier and has been able to sleep a bit more. So...going home tomorrow is still the plan..

With her favourite toys..

We were lso visited by a neurologist, he checked Emilys reactions and behaviour, as a follow up because of what happened to her after the operation when she had to have heartcompressions for 6½ minutes.. He thought that she looked perfect and we should not be worried about anything. It is really only me and Keith that can tell if she is not developing the way she should and if there is any thing wrong with her and nothing points to that at this moment.:)
That by the way was the man with the stick-man. He took a spatula and drew a face on it, he then tried to get Emily to follow it when he moved it but she was just looking straight at him, so that didn't work..lol..

We also managed to use the inhaler on a sleeping little girl. That was good for both us and her because she really hates it..

We would like to that everyone in the staff, nurses, doctors and everyone else. You have all been amazing andhas managed to take care of us wrecks called parents. We would like to mention a few of you and if you are not mentioned please take no offence, there has been so many new names to remember. Your faces and work are not forgotten in our hearts.

Lindha, you were amazing to all of us from day one and helped us keep our spirits high.
Josefin, you took care of us when we could barely keep our heads above the surface, and above that, you looked after our daughter in intensive care.
Carina, you were taking care of us in the ward and although Emily might not have loved it, we were happy to have you around.
Jens you took care of our daughters heart, need we say more?
Åsa, Lisa, Astrid, Pia, Helena, Anita, Peter, David, Thomas and so many others... Thank you all for what you have done for us!

We will surely meet again.. Of course we would wish we did not have to under these circumstances but we know that Emily will need more surgerys and when that happens, we know that we are safe with all of you around us.

Emilys wonderful nurse Carina saying goodbye...

A small step back..

Not at all as bad as it might sound but not quite according to plan..

Because Emily decided that she would not have her feedingtube anymore we have been giving her the medication straight into her mouth, this has not been appriciated and has (at least we think so) made her reluctant to take the bottle. So, that is not a good thing because that means that they might have to put the tube back, something we do not want to happen. But, she does need the fluids and the nutrition and if she does not eat it is the only way forward...

Above everything else she has got a skinrash, what it is we do not know yet, it might just be from the heat when she is in bed and/or her swetting but she does also have a slight fever so they keep her under close observation...

I also thought that my camera had broken and we went in to town to see if anyone could help me fix it. After learning that it would have to be sent away and that it would be at least 1500 SKr we went back to the room and I hit it a few times and now it works. :) So I managed to get a fun photo of little one..

We forgot her hat when going to the hospital, so they lent us one. As you can see it was a bit too small. :)

Luckily we had her own hat in the room at the hotel so she did not have to be embarassed for long.
She has had a lot of walks today and she relaxes every time she gets outside. She is slowly getting back to her old rutines..

I can too...

Well, another day in the right direction..:)

We met the doctors again today and they had some great news to deliver.. We are hopefully going home to Stockholm on Monday! It might be back to the hospital in Stockholm but we don't care about that as long as it is back to our hometown...

Today they did an ultrasound to check the shunt and it looks good. The lungs were x-rayed as well.
She is still a bit wheezy and is on medication 4 times a day. We found out that this could be beacause of the operation. Her lungs have more circulation going through them now and they have to work a bit more than before, a direct cause from this can be some respiratory problems in the beginning.

She also decided that the feedingtube had to go so she just pulled it out..:) She has not been taking the bottle and to try and get her back on track with that she might need to get really hungry, so at that point we decided to let her wait for her food a little bit...  After an hour or so she began showing signs of being hungry so her dad tried the bottle...and.. success! (of course the tube would have been put back if she did not take the bottle for a while).

The little mischievous one, without the tube..:)

Eating again, the right way...

At this moment little one is in her bed blowing bubbles and talking to her dad.. The last sign we were waiting for:)

We also got our other big wish come through today... We had our first walk outside and within 5 minutes Emily was asleep in the pram.:)

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