Baby T's Story, Chapter 16- Home

Thursday 3/8/12

Baby T and I experience another restless night in peds.

Our lack of rest solidifies my desire to get him discharged.

I truly feel that he is now ready to recover at home.

The pediatricians visit early and discuss that Baby T seems ready to go home

and likely can be discharged without the NG tube.

I'm so very excited about their confidence in T being ready

and even more excited about leaving the NG tube behind.

Neurology comes and feels that the NG tube is necessary for discharge.

At this point I've already called my family to let them know we

should be returning home later that day.

I'm confused by the differing opinions between the staff.

During rounds I practically plead that they discharge us.

They debate whether his NG tube is necessary.

OT is requested to re-assess his swallow.

The peds concur that discharging with the NG would be

best just to make sure that he continues to gain weight.

The only problem is that the NG training and equipment take a day to order.

This would delay our discharge until tomorrow.

IB Dad and my parents arrive and are confused by the change of plans.

I'm upset since exhaustion is now really catching up with me

and I feel that he is so very close to coming home.

Our bags are packed.

I try to chin up and convince myself that one more

day wouldn't be terrible.

But it is.

We need to go home.

Luckily, a sympathetic nurse hears me (and my family) out.

It turns out that her daughter was hospitalized as an infant and

discharged with an NG tube.

The nurse understood our urgency to return home.

She put rush orders in on our equipment and facilitated

a quick NG feed training session.

I requested to see the pediatrician once more and

we went over the discharge orders.

Baby T is to get weight checks weekly,

will have Occupational and Physical Therapy appointments.

And will need a pediatrician appointment the next day.

He will get 800 ml of breastmilk in the NG tube over

an 8 hour period at night.

Otherwise he can breastfeed on demand and

be supplemented with baby food.

Many of the PICU staff hear about our imminent discharge and make their way

over to peds to say good-bye to Baby T.

Last nap in the hospital

The equipment arrives.

Papers are signed.

The IV is pulled.
We load up all of the frozen breastmilk (over 100 oz)
which requires a cooler for transport.

We dress Baby T for the first time in over 2 weeks.
Soon we are discharged.

Walking out with him feels surreal.

I walk him down the corridors that I've previously

walked in such a sad state.

We pass the parent room where I've slept

many nights during our stay.

We take the common elevator

and Baby T catches the curiosity of many

since he still has his NG tube.

Every step we take puts more distance between him

and the machines, needles, dressings, medications, health care workers,

cribs, tests, lights and tubes.

Soon we settle him into his car-seat.

We put miles between us and the hospital.

Ready to go home!

I cannot stop myself from repeatedly commenting to IB Dad about how
strange it feels to be finally leaving the hospital with Baby T.

We arrive home and are greeted by our girls and IB Dad's mother.

Baby T lights up when he sees his sisters

but he's easily overwhelmed with their exuberance.

We quickly settle into our home once more.

IB Dad and I set up the equipment for the

overnight NG feeds.

While we're waiting for the breastmilk to thaw,

we talk and marvel at our sleeping Baby T...

and end up falling asleep together.

We wake up a couple of hours later laughing at

how tired we must have been in order to fall

asleep in mid-conversation. 

The milk is thawed so we

set up Baby T's first NG feed at home.

Being reunited with my family,

Baby T sleeping at my side,

in my own bed,

in our home.

We are

finally,

unbelievably

 home.


Click to continue reading Baby T's Story, Chapter 17