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July 29th

Today is the day. In the meeting with the ped. Arenka demands to take Summer home where she belongs. He doesn't agree and tells us it's at our own risk. What risk? That we teach her how to drink her bottle wrong? What nonsense. Summer will come home as soon as we learn how to feed her by tube.

At that moment we decided that this was our last conversation with this doctor and we would find a better one.

That evening we started lesson 1.... and it went alright. On pediatrics is a sweet nurse who stood by us and agreed totally.

for a moment without the tube in bath

August 1st

This morning the happy news came. Summer comes home! We really worked hard to learn to bring in and replace the tube, and we made it. 
And it's about time. After 2 weeks riding to and from, I have had it. And Merel has to. she's being so difficult right now.

August 2nd

Summer can go with us, but first she has to go to a academic hospital to check her heart with an ultrasound. An ultrasound?? Why?  He has told us several times that there was nothing wrong with her heart . Mess up number ?

In the LUMC(hospital) we are quickly helped. The ultra is showing us lots of colours. And then shock number? ...I'm losing count. Summer has an heart condition, AVSD. She's missing the septum and has to have surgery. He tells me that 95 % succeeds and I think that means 5 % don't.

Again something I have to tell Arenka. At 2 PM we have an appointment with the new ped. Just to see if she feels right and she does.

home!! first time in the car

Then back to get Summer. We have a long and emotional meeting and the nurse is a sweet girl who takes care of Summer real great.
Summer goes for the first time in her MaxiCosi and we go home. But first a short visit to grandma and grandpa. He is very worried and has  a hard time with everything. And then home. Summer sleeps in her own bed for the first time.

a visit with grandma and grandpa. Merel watches over her sister

august 3rd

After a good night Summer refuses to drink and all her feedings go by tube. We panic and ask ourselves if the decision was the right one.

August 5th

Everything is back to normal, and she's drinking better then ever. She's very awake and aware, watching everything that happens around her. And so we go into town, for the first time with the four of us. Quick, between meals. At last the 'normal' life back again. And Merel's enjoying her little sister.

Tickling your sister, that's fun!


Copyright 2001 Rob Breedeveld