One step forward and two steps back


The week started off with a nice morning cocktail after a rough night 😉

Finally our little sweet heart climbed over the 4kg mark on the scale and we have actually noticed that she’s become a little bit more aware and playful again. She thinks it is fun to play with the pacifier and the game goes something like this:     

  1. Emma sucks on the pacifier and then spits it out.
  2. She of course regrets this action immediately and tries in vain to suck it up again from under her chin.
  3. After a few tries she starts to beg for it and becomes happy when we “fly it into her mouth”.
  4. Repeat step 1 to 3…
 

Grandma and grandpa Sweden turned up with dinner (always good and much appreciated) 🙂

On Wednesday Rana came by with delicious lunch made by former chef Samer. The fresh spring rolls were quickly devoured and then Rana could cuddle with Emma <3

Linn, Jerry and Albin dropped by with some Danish pastries and we had a great talk where we could finally catch up :-). Both Albin and Emma enjoyed some nice cuddling.     

On Thursday we had some great news when the ultra sound of Emma’s heart showed a much lower pressure then before! It was a little more than 60 mmHg compared to 130mmHg just before we started with the medicine. This was definitely a great step forward and we were very happy! To make the day even better we got a load of cards from the Netherlands! It touches our hearts to know how much people care <3

Both Emma and Margreet got a beautiful bouquet of red roses for Valentine’s Day.

Later during the day Grandma and Grandpa Sweden dropped by again with dinner and took the time to watch Emma getting a nice warm bath 🙂 

Mats and Malin came and visited on Saturday and had nice salads from Redfellas with them. If you haven’t noticed by now, we are using our entire network to gain access to good food :-).
Emma found a warm and nice place with Malin. 

Later at night we visited Albin and Jerry and Fredde got a chance to feed Albin and try out feeding with a PEG tube (Percutaneous endoscopic gastrostomy). We will probably get a PEG tube for Emma as we cannot feed her with a bottle anymore. 

Emma (and her parents) ended the week with a couple of rough nights… The food probe was vomited up, her saturation was dipping frequently and set of the alarm a few times per hour and she was quite unhappy. 

On Sunday morning she had long saturation dips which she had problems recovering from. They were as low as 50%. Once the doctor looked at her heart with ultra sound the dips had more or less stopped and he could not find anything they didn’t see before. For a few hours Emma acted like her saturation problems hadn’t occurred but during the afternoon the problems came back. She now gets a lot of oxygen and paracetamol to ease her pains and calm her. Luckily she could share room with Albin for the night so Fredde can get a good night’s sleep (or as good as one can get during these circumstances)

We have to finish off with something happy and that is that the Aanstoot-Nilsson family has celebrated a lot these last days and enjoyed a lot of Olympic medals! Emma is lucky to have two nationalities :-D. To be honest it feels that all family members have two nationalities <3 (we are glad that we are competing at different Olympic events otherwise things could get ugly…)

As we are posting this we had another rough night with Emmy dropping seriously in saturation, luckily they got it under control. She is now getting more medication to help keep her saturation on a good level.