our second child

After only 1,5 hours i hear a shrill cry and a warm little body is given in to my arms.

"hi little buddy,look at you!"

Noah is born , his skin is a bit dry `cause he was born so late,but he is beautifull.

I hold him thight,our son....

All of a sudden the midwife says "something is wrong"

She takes Noah and checks his reflexes.

"I `m sorry,i`m going to call an ambulance and the paediatrician.Something is really wrong".

Our nightmare has begun.

 

Noah`s hearth & breathing are fine,but he is all limp.

He doesn`t move and doesn`t respond.

Quickly the umbilical cord is been cut and Noah gets some clothes on.

The  placenta comes very quick and they put some clothes on me too.

Only 30 minutes after Noah has been born we are in the hospital and i sit on a chair watching two doctors doing all kinds of tests with our baby.

Sad about what supposed to be a happy event,we do have faith it will all be allright in the end.It can`t be the other way,after such a beautifull pregnancy,can it?

 

The next day one of the paediatricians comes to tell me one of the tests of Noah`s brain doesn`t look good.It`s shows a lot af seizures.They don`t know what causes them,but it`s really bad.

I`m crushed by this message.I`m alone in a room,at the baby-ward in front of the nursery room and something is wrong with our baby.Our baby is on another ward,behind glass and has all kinds of tubes and plugs connected to him.

No celebration when i come home that night;just an empty belly and empty hands.

It kills me to leave our baby behind in the hospital.

 

Sunday februari 1

Noah is brought to a specialized childerens hospital in Rotterdam `cause there need to be more tests done and they need to be done there,

Patrick is with him during the day,i am in the evenings.

Noah seems to make some progress , he gets medication against the seizures and starts to move a little.

Thursday februari 5 we have a meeting with one of the paediatricians.She can`t tell us much at that time,but she does tell us they fear Noah has an metabolic disorder with a bad prognosis.

As we walk out we say to eatchother "as long as they are not sure and we live between hope and fear , we go for hope.Everything will be fine."

The next day Noah is brought back to our local hospital.

 

Saturday februari 7

I talk to the paediatrician ; no more test will be done untill the results from Rotterdam are in.

Noah is stable and doing pretty well,so we agree to start to prepare Noah`s coming home.

 

Sunday februari 8

They start to teach us how to feed him trough a tube which goes trough his nose into his stomace.

We want to have Noah home before the next weekend.

 

Monday february 9 ,

Noah has a big seizure on my lap.

The paediatrician is called in,this is not good.

 

Tuesday february 10,

The seizures keep coming.

In the evening the come in a row and everytime his oxygenlevel drops.

Around 8 o`clock a paediatrician comes to tell me it gets critical ; if they have to increase his medication one more time,Noah might stop breathing.Machines could take over,but he`d never gets off of them again.

I hold him and feel,know,we`re going to loose him.

When will someone wake us up and tell us this was all just a bad dream?

Patrick stays with him that night ; i`m at home with Jessy.

Noah gets trough the night without increasing the medication.

 

Wensday february 11,

On my way to the hospital a question pops into my head : "what are you going to do when Noah really has a fatal disease?"

Take him home,without a doubt.

Thats the first question i confront Patrick with when i arrive at the hospital.

Without hesitation he gives me the same answer.

 

One hour later

The paediatrician wants to talk to us.We go with him to his office and take a seat.

"I have very bad news to tell you.Noah has a metabolic disorder called Zellweger-syndrom , and he will die."

My heart breaks into thousand pieces and i feel tears rolling down my face and yet i hear myself calmly say : "we want him to die at home.We want to have him home as soon as possible."

They promise us they`ll do whatever they can to get Noah home,but the most important thing needs to be done by Noah himself.The seizuring has to stop,he needs to be stable.They don`t want us to take him home like this,with a chance he`ll die the first day home.

 

Thursday 12 february

A lot of work has been done.We have oxygen & breathing equiptment at home,a heart-monitor,a pump to feed him,tubes,a pump to clear his airways if necessary.

We have the medication he needs,our doctor is notified and will take care of Noah here.

Now it`s waiting for Noah.........

He needs to be and stay stable enough to go home tomorrow.

We want him to come home so much.....

A long night,a very long night.

 

Friday 13 february

Patrick calls the hospital , my heart pounds and my hands are clammy.

Please.....please........please..........

Noah is stable,we can take hime home!!!!

We take him home ourselves,the "normal" way in the maxi-cosi.

That evening we have a little celebration after all ; our baby is home.