Home again

We have been back home since last Tuesday, back from the hospital.

We have been through a lot.

Avigail has been through a lot.

She passed the operation well. She could immediately get off the ventilator again and because she had to be on the monitor for 24 hours after the operation, we could see very well that extra oxygen is no longer needed through the nasal cannula.

What a milestone!


We are very happy that we can now carry her around the house without tubes behind her.

Her face is finally patch-free.

And has she started laughing at us!

The day before the operation was a special day.

Special to know that so many, young and old, have fasted for the life and healing of our daughter.

The joint prayer time by Zoom was also heartwarming and beautiful.

Not only in the Netherlands by Dutch people, but again we saw people from Germany, Belgium and Israel connect and we knew that people were praying for us in even more countries.

All unique, but as 1 vote.

What exactly did this operation entail:

They placed a drain to allow excess fluid to drain into Avigail's abdomen, where her body will clean it up itself. This drain was actually the original plan, just because Avigail was still too small/light, it was not yet an issue.

When they discovered at the beginning of February that brain chamber 4 was isolated from the rest, this drain would no longer make sense and Avigail would soon die due to the growth of brain chamber 4 that produces moisture itself because this chamber 4 presses against the brain stem due to its growth.

However, this is not yet the case, Avigail is alive.



But because brain chamber 1, 2 and 3 also still produce a lot of moisture, it has grown which puts pressure on her brain, eyes and tension on her skin with all the inconveniences that this entails.

As they expect growth to continue, they expect more inconveniences such as even tighter and thin skin, cuts, wounds that no longer heal, heavy head for to lift/care for us and for Avigail to move.

The operation has now been to prevent the inconveniences that were to come.

We now clearly see that her skin and eyes have less tension/bulging.

So the drain does its job.

But according to the doctors, nothing has changed about the threat that brain chamber 4 poses to her life.

However, G-d has the final say.


We have seen the MRI images from before the operation.

There we saw a lot of moisture.

So much so that we were actually surprised that we noticed so little in her.

You would lose your courage for the future.

But greater is the miracle of every day!

Next week we will celebrate Shavuot and Avigail her 200th day anniversary.

May many more miracles follow!

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