Happy New Year!

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Dec 312010

It’s the last day of this year and what a year it has been…

At the moment the princess is in the kitchen, helping dad to prepare the new years meal. And because there were no traditional english turkey for christmas we are having a turkeymeal today instead ūüôā

Ok..so I take this off…¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† ….and put it in here?

This day was hard to imagine when we first got the news about her heart for a little over 1 ¬Ĺ years ago.
Back then the world collapsed around us, the joy of being new parents¬†disappeared in the background and everything revolved around hospital visits and examinations. Now she has¬†gone through¬†two major operations and successfully, she is like any other child now except that she still looks a bit special on the inside and have a few scars on the outside but that’s what makes her who she is and we would not change anything.
This journey (which of course is not over yet) has probably made us all a bit stronger, and I think we look at life in a different way than we did before. 

But right now we are looking forward to the new year!
Emily doesn’t take any¬†medications any more, she is going back¬†to the hospital for a check up¬†in mid-January and has been back to Nursery for a little while , a soft start¬†and it has been just great. She talks about her friends when she gets home so we have¬†to guess who’s who, we can’t really understand everything she says. ūüôā After the new year she is back fulltime at Nursery, as usual, and I’m back at work.¬†

I am going to keep this blog updated, not as often as before but we will fill you in on Ems adventures now and then ūüôā

Take care of yourselfs and take care of eachother tonight and in the future.
Nina, Keith and Emily

 Posted by at 4:35 pm

Great news!

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Dec 112010

It has been a while since I updated the blog so it’s about time I did it again:)

We have been to visit the hospital two times since the last¬†post here¬†and everything looks great! During the last visit, they established that the fluid around the heart are¬†back to normal levels and we can stop her diuretic medication in about¬†2 weeks. That means that she will be completely off any medicines! For the first time in over a year …
We also received good news about her general condition. They now look at her as a fully recovered and she is now like any other little rascal out there,¬†she does¬†not need any special restrictions any more, and also… she can fly! Finally we can go over to England and she can meet her grandparents and other relatives and friends. It feels fantastic!
Yes, she will need more surgery in the future but no major surgery and then it is the valve that needs to be replaced, but until then we can stop being paranoid when she meets other children or when she gets upset and turn blue. Her motion sickness seems to have been conected with her heart problems because after surgery we have just experienced one episode in the car when she became ill, compared with every single time before, and then even during very short trips.
We will be staying at home for a while now so that she is fully recovered when she goes back to nursery, but we will go and visit now and then and stay an hour or so, so that she can meet her friends again and play and have fun.

We have been visiting¬†her grandparents and as usual Emily is soo excited because that means that we are going to see the dogs! There are also a lot of gates in their house that she¬†can play with and there’s nothing more fun than to open and close them .. ūüôā

Helping Bettan go through the gate…

Look what mommy found outside!

Otherwise, Emily is doing just fine, she is talking a lot (even though we may not understand it all), she is very good at cleaning and leaves her mug in the sink if she remembers it, just like she throws rubbish in the garbage when she find any, and yes .. she throws junk, not everything she can find:)
She is smiling and saying hello to most people we meet when we are out so I can imagine that she makes a lot of people a little happier.
That’s our little Emily ūüôā

I will keep you all up to date in the future.

 Posted by at 11:39 am

2 weeks..

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Dec 012010

..has passed since the operation and it is amazing to see how quickly¬†Emily is back to normal. If that was me I would probably not be out of bed yet.. ūüôā Despite the major surgery and the following pneumonia she is running around like before this all happend, not bothered at all and we have to be a bit mean sometimes because she wants to do things that she is not really allowed yet. She is not yet back to her normal happy self, she is sleeping very restless and is quite whiny but I fully understand that after all that she has been through.
The problem is that she is clever as well.. she has quickly learned that if she is sad we will be there in a flash, so we now have to really listen to how serious it is before getting there, we do not want her to get stupid habits and have mommy and daddy run her errands¬†…

Her fever is gone, the bloodtest last friday showed that the infectionlevel were the same as before and that is an indication that it is a virus and therefore the antibiotics are doing nothing to help, just giving her a bad tummy.. The doctor also did a new examination with the ultrasound and unfortunatelly the fluid around the heart has increased a bit, so we will give her a higher dose of the diuretic medc. Next appointment is on thursday and hopefully everything will look better then.

In Sweden we celebrate advent every sunday up until christmas, 4 sundays in a row and last sunday was the 1:st of advent. Emily had a taste of our pepparkakor (gingerbread cookies) and gl√∂gg (christmas drink) she loves the cookies and after trying the gl√∂gg with a wrinkled face and a little shiver she ¬†fired off a big smile and said: Mooore! ūüôā

The first candle is lit for 1:st advent, and some gl√∂gg to go with that ūüôāLife is starting to get back in to normal tracks again, Keith is back at work and I will be home for a few more weeks with Ems.

 Posted by at 12:21 pm

Home again! It is good, and not so good..

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Nov 242010

Yesterday morning started with breakfast at the patient hotel and a sarcastic woman behind the counter. We had the nerve to ask her if we could have a cup for Emily rinsed out, after helping us with that she came up to me, put her hand on my shoulder and with her whole hand she pointed and said: there is a bathroom there..and there..and you can rinse the cup out in there in the future. Grrrrrrrrrrrrrr…

We had an appointment at the ward at 9 to be released from the hospital. At 9:20 a doctor (that we had¬†never seen before)¬†came up to us and explained that she was releasing Emily and that she had all the papers needed for this, papers that the doctor that had attended Emily had written (??!) She started out ok but soon said some stupid things that really made me angry. She also talked to me like I was a little girl that should be told what to do because I didn’t know better. For the second time this day I had someone talking to me like I was¬†a lesser being…

After finally being signed out we started our trip to Anna and Björn. It started snowing a bit but it is November in Sweden so who was surprised?  Some warningsigns were up regarding the bridge across to Denmark but I didnt think much of it.
We arrived safely and had great time with our friends before starting the trip back to Stockholm again at around 19:00. We planned to be back home around 23:30 and that was after talking to my parents who had been driving past 4 big lorrys in the ditch in just a short period of time just outside Stockholm. They warned us about the roads and we listened, of course but we so wanted to get back home so we started the journey as planned. They were absolutely rigt, the roads were awful.. And the lorrydrivers were terrifying, 2 of them almost had us off the road and if not off the road, under their tires…

We finally arrived home at 02 in the morning. We were asleep around 03 and up again in the early morning. Emily had her medicine at 8 and I thought she felt a bit warm but thought that it was probably just the fact that her saturation was so good now and I was not used to it. She was grumpy, sad and after a walk she was fast a sleep, not at all the Ems we know.. As soon as she woke up I took her temperature and she had a fever. This was 2 hours after her painkiller so that was not ok. I called our nurse at the hospital here in Stockholm and she spoke to a doctor who told us to come right in.
Emily had blood taken, and ultrasound was done to determine if there was any fluids around the heart (there were nothing) and after the doctor had fully checked Emily we were sent for a chest x-ray.
When the answer came back it showed that Ems har got a pneumonia… She now has to have antibiotics and the¬†inhaler again and on friday we are¬†going back to see the doctor.¬†
So now all we can do is try to get her to eat and drink as she should and just keep an eye on her of course, if it gets worse, back to the hospital again.

Hugs to you all, we will keep u all up to date.

 Posted by at 8:21 pm
Nov 222010
All 3 of us are back at the hotel now and we are going to sleep here tonight. We are on leave from the ward. ūüôā This means that we can¬†go home tomorrow! It is amazing how quickly our little princess¬†recovers.

Yesterday the¬†last annoying cord were removed, the one¬†in her tummy that went¬†up to the heart so that a¬†pacemaker could be used if needed. We did an ultrasound¬†and everything looked great except for a small leak in the new valve. This is not unusual according to the doctor and they¬†will need to keep an eye on it¬†but it usually does not indicate any problems, and especially not when you’re as young as Emily.¬†It could mean that the valve needs to be replaced a bit earlier than expected, but we are not going to think about that now. At the¬†moment we are just so¬†happy that everything went so good this week and we will need to help¬†Emily to walk properly again. She would run if she had the option but that would mean that she fell¬†almost immediately because she has no balance at the moment and the body has not recovered yet, it is still weak, although her spirit is extremely strong. ūüôā

Today, a chest x-ray was taken¬†and when the answers were in and everything looked good, no fluid anywhere, they could remove that last little awkward needle in the foot. Now it’s just as Emily again, no¬†wires or needles. We went out for a bite to eat¬†and Emily was delighted to get people watching again. True to her habit she said hello to everyone she saw¬†and played peekaboo with people nearby. She is just lovely our little Ems!

A little treat after being such an amazing girl!

After a short nap at the hotel¬†she woke up and looked around, very confused … Where was she? She calmed down as soon as she saw us, but one can only imagine everything that¬†must be spinning in her little head, so much has happened in so little time. This time, she has shown no signs of having been traumatized by¬†her¬†stay here and she has not been afraid of the nurses, even though it has beenpainful¬†many times …

Hard to believe that is less than a week since the operation…

Tomorrow we will be going home again and hopefully we can make a short stop at Anna and Björn again.

We have had a good stay here, maybe some small disagreements with some nurse, but the fact is we react the way¬†we do because¬†this is our daughter, our little girl that we just want the best for, even though it might not be in line with how you would think as a¬†trained medical personnel. We are extremely grateful for¬†all the¬†help, all the care and all the work done by all the personnel at BIVA and Dep. 67. I hope and believe that you can take a little dispute¬†from¬†us parents. Sometimes we feel a bit left outside regarding everything that is happening. We get everything delivered to¬†the room but do not know half of what is happening. We will question and wonder and perhaps also find that some things are a bit strange because we are not as familiar with all of this as you all are … No matter what, we want to send a BIG THANK YOU to you all!

Tomorrow we will be released and recieve all the needed paperwork.

We will get back to you all when we are back in Stockholm.

 Posted by at 8:53 pm

A lot going on..

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Nov 202010

Almost all the annoying tubes and patches are gone now. The feeding tube was removed, to our great joy, but it also made things a bit more difficult. Now we have a hard time getting the medicine in her, but on the other hand, maybe her slightly swollen eye will get better and the itching stop.
The also removed the patch over the wound and took an ECG. It looked great and her saturation seems to have landed at 97-100 (wow!) Tomorrow they will hopefully take away the cables that goes to the heart just in case they would have to switch on an external pacemaker and, finally, if everything looks good, they will remove the final needle, in her foot.

Emily has also been out for a walk and got some nice fresh air in her lungs. Unfortunatelly we can not let her walk on her own yet, mostly because of the needle in her foot, it is to painful.

Reading with daddy..                                    Trying my legs again.

Look, almost back to normal!                   Fist walk in a while, nice with fresh air!They have also decided that we will be going home in the beginning of next week!

A decision that we have received with mixed feelings .. Yes, Emily has recovered incredibly fast but she still needs strong painkillers from time to time. We are struggling to get her to eat as she should, and sleep is almost nonexistent. After all, not even a week ago, she was subject to a seven-hour surgery and already she will be fit for fight and ready for the long journey home again. (?)
We want nothing more than to come home and back to our routines and security but it feels insecure.

I will write again tomorrow and let you all know about the plans for going back home.
Hugs to you all!

I am trying to solve the trouble I have with the videoalbum, there will be some new videos soon to when that is fixed.

 Posted by at 9:57 pm

Big steps forward.

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Nov 192010

We have been down at ward 67¬† for almost a day now. The first hours are tough because you have to switch¬†from Emily having 24 hours of¬†attention from the nurses to being a nurse yourself.. Don’t get me wrong, there are nurses here in the ward all the time, wonderful girls who take care of us and little one but it is us who has to watch over her¬†all the time in the room now and it’s hard when you are afraid to hurt her and when she¬†till has the drainage. And above all, it’s such a drastic change that you become unsure of¬†yourself as a parent ..

But, everything has gone really really good, Emily has been sitting with us several times and would if she was allowed get down and walk around:) We have become much calmer today and they are going to remove the drainage which means that we can take Ems for a small tour aroud the ward. She is of course still very tired, she gets pain relief and many other medications, and we are waiting and waiting for her stomach to get going again, because that will of course hurt as well if it is not working properly.



Thank you for all your thoughts! Little one has had so many kisses sent to her she will soon drown..lol..

 Posted by at 9:44 am

Time to go to the ward.

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Nov 182010

This morning when we arrived at ICU Ems was just relaxing in her bed looking calmly on all the nurses walking up and down the room. She was a bit grumpy when she saw us and wanted to be soothed. Unfortunately, she was not allowed any food because they were planning to remove some tubes and she needed to get some seditive, so that of course contributed to her being upset.
After an X-ray of the lungs in the morning they decided that the drainage would stay for at least one more day but the tubes in the jugular vein and in the artery in the wrist could be removed. Her saturation oscillate quite strongly, and she is dependent on oxygen, but this is normal after  a heart surgery as it tend to accumulate fluid around the lungs.
After¬†the tubes had been removed¬†she were allowed some food and she almost ripped the bottle out of¬† my hand.. ūüôā

We are now waiting for her to go down to the ward, we will update you soon again!

 Posted by at 10:08 am


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Nov 172010

We have just been to se Emily at¬†ICU and were greeted by “mommy … mommy …” and in the bed is a little¬†girl eating¬†from the bottle! Sad and confused but said “more” and ate her food greedily. She was¬†awake, but is not quite with us yet,¬† unfortunatelly¬†we are not really helping right now because mom and dad means that you can be really sad, they way you only get when your¬†parents are around.
So, for tonight, little one will have to be left to have some peace and quiet without us, because the more she rests and sleeps the faster she will be back and fully awake. Feels hard to leave her, but of course they will call on us if we are needed and we have to get some rest ourselves before going down to the ward where it will be us taking care of her most of the time.

A hungry little girl!

Night night, i’ll write more tomorrow.

 Posted by at 8:30 pm

No ventilator.

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Nov 172010

Our concern that it would be like last year with extreme problems to extubate were luckily unfounded. They called this morning and said they would take her off the respirator so we decided to stay away in case anything went wrong.
When we got there she was sleeping like a little princess, without a ventilator. ūüôā

She is about to wake up but ends up in a world in between and is given some help to go back to sleep¬†so that it will be easier and easier for her to get into “our world”¬†every time she wakes up. She is, as usual, a little fighter, she mumbles and waves her armes around, trying to turn around, and keeps the¬†nurses on edge so that they will be able to¬†stop her in time:)
She has her dog Lucy with her now so that she will feel secure during the small periods of waking up.

Everything looks good and if it goes according to¬†the plan, they¬†will remove the drains and the tubes going into the neck and arm. Then we’ll see what happens¬†but we will hopefully be down in the ward again soon and can start working on getting¬†back to normal. Or, normal…¬† she now¬†has a¬†saturation¬†that¬†she has never experienced so it will probably be¬†full speed and nothing else!

A saturation of 95 this morning, magic in our eyes.. ūüôāAfter a night spent mostly in the emergency room because Keith’s knee is not as it should¬†we did not get to bed until 4 o’clock in the morning so to get to wake up to a phonecall telling us¬†that¬†little one is doing good was¬†like a¬†refill of energy, it keeps us going a good time!

I will keep u all up to date.

 Posted by at 12:24 pm