13 september

septembre 13th

Hurrahh !!!!!!!!!!!!!
Summer is back in the babyward. Yesterday the respirator was turned down bit by bit and Summer had to breath all by herself more and more. After a slow start, 20 breaths a minute is enough she must have thought, she decided to do it herself.
This went so well that they decided to remove the tube from her nose to look if she could do without. And she could without any problem.

pff, at last without that thing in my nose

Now she had to show that she could pee, that was a problem because the sack remained empty. When the nurse replaced the catheter the problem became visible, she peed in her diaper, And the second time the did the same so the nurses gave up and removed the catheter. Only some drugs had to be removed now and that went well to.

On the lap for the first time since a week

When that all succeeded, she could go back to the babyward. With just one medicin in the IV our Summer is back, and an improved one. She takes her breaths easy and is not so stressed. At last , after all the fears and sorrow, there's some rest.

Cisca is taking us back to the babyward

septembre 15th

Summer is doing very well. Yesterday she got her first bottle and drank 20cc. What a victory. She's a different child. So easy an not so irritated. you can see the comfort in her eyes.

the first bottle

Tonight I went to a ring of parents with Downies. It's good to tell your story to people who know how it feels. And at the same time to see how different people react with the same problems.

septembre 17th

It's a bad day today. We feel nothing is happening in the hospital. Summer is irritated and not very well. Since friday we are asking for a NET doctor. She squicks and sounds very raw still. And if you hear today that nobody has taken the time to look at her and nothing has changed you feel left alone.
The drinking is not going very well either. The feeling is bad and tomorow we want to see someone and something has to happen.

septembre 19th

It's going somewhat better, but b not so good that we can cheer. The squicking and raw sounds are stil there but she looks at ease some more. This morning we talked to the doctor and she is watching if it gets any better. If not the specialist has to take a look. But then she has to be sedated again and that not preferable. Its all a bit unsure and there's no sight on her coming home yet.
Merel is doing okay and is , under the circumstances, even very cheerfull.

Summer in the pen.
What's that hanging in front of me

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