Emily’s story…


She was born May 6th, on a wednesday morning. She was delivered with an emergency Caesarean section due to the reason that her head was not in the right position and mother and daughter was beginning to get tired.
She weighed 3500 grams and was 52cm long.

2 days old.

After a few difficult days at the maternity ward we went home with our new little girl and began to get into our new life together. Emily had a small murmur when we left and an appointment was made to do an ultrasound the following week.

On May the 12:th we went back to the hospital to do the routine check up on Emilys heart. The nurses that greeted us were wonderful and Emily behaved like a star, in other words… she was a sleep most of the time.
After a very thorough examination the doctor was sent for and she performed her own examination. At this point I started to get worried, I have seen a few ultrasounds before and the green and yellow areas that was showing on the screen were not supposed to be there…
The doctor finished the exam. and then turned towards us. I will never forget her words

“Your daughter has a heartfailiure, to be more exact, it is more than one problem..”

She continued talking and made a sketch of a normal heart and then one of Emilys heart, going through the areas that were not normal in Emily…
To us the words were only buzzing in the background. The ground were ripped away from under us and we were struggling to get back on our feet. Our little girl couldn’t be poorly, they must have made a mistake, she looked perfectly normal, infact she was perfect.. And she had only been with us for 6 days..

Once again the staff were amazing, they could see that we were in shock and even if I know that we were not the first to get this kind of heartbreaking news, we were treated like we were the only ones, not like one of all the others.

We were then admitted to the ward and once again taken care of by wonderful nurses and doctors who did everything in their power to help us get back on our feet.

In the hospital with Emla cream on her hands (a cream that numbs the skin)

We met “our” doctor again and she went through the findings and told us what was going to happen in the future. They needed to take bloodsamples and make regular saturation checkups and also keep an eye on Emilys weight for a few days ahead. She also explained that Emily were going to need surgery in the near future and that one would be very soon. That would be an angiografy, contrast-xray of the veins, to see exactly how the veins looked and from that they would plan the heartsurgery.

We stayed until Friday that week and were allowed to go home during the weekend and come back again on the Monday. When we came back the following week we were told that the angiografy was planned within a month.

At the end of May the Angio were made, Emily was not even a month old, and when it was done they could give us the whole picture and names of what Emilys problems were… She has extrem Fallots with 4 MAPCAs (extra vessels) 


We have had a lot of difficult days with our little girl, but she is actually doing very well despite being so ill. She is sweating and vomiting a lot due to the heartcondition and we hope that will be gone after her surgery.
Her first vaccination was a grim reminder of her condition as she became unconscious after having the needles. 

But despite everything our days with her are wonderful and amazing and she is a funny little girl with a beautiful smile that most people fall for…:)

Look at me mummy…

This blogg is made to try and keep all of you up to date with her progress in a very easy way. Please bare with the english not being the best, I am sure you will understand even though it is not perfect…:)

 Posted by at 8:25 pm

  2 Responses to “Emily’s story…”

  1. hey there 🙂 just wanted to say u have the sweetest girl there.. and she will grow strong with a lions heart.. lots of warm thought from here. and a big hug to emely.. Lotte

  2. Thank you Lotte 🙂
    Yes, she is doing so good now and she will probably be just as you say, strong in heart and mind.. Hugs back to you.