The Boy Who Changed EVERYTHING

Using his Tubie

Well that's how we feed him now. I'm not sure if I love it or not.
I'm actually a little jealous of it.
I wish nursing him wasn't a hazard to his health.

He is from Tom and I.

He is our child.

He is God's child.

And I love him.

And I wish he didn't have to have this right now.

I wish I could just nurse him like my other babies.

This was not exactly what I had planned.

Surgery Day!

Bradley's surgery was scheduled on the first day of school.

School started at 9am and the surgery was at 10:30am.

Madeleine was starting Second grade; Jacob was starting Kindergarten.

We live in a very hot place, and Jacob was sweating from the heat

and I thought the drop of sweat was a tear.

But he told me later it was NOT.

Bradley was very comfy when we got there.

Then I told him what we were doing and that woke him up!

I wanted pictures and videos just in case.

I signed papers that said I wouldn't hold them liable if he died and so it was on my mind....

But the surgery went perfectly! Finished in an hour and a half!

And he came back looking like this

And I could not stop looking at this very anticipated new part of his tiny body.

The G-tube

Fingers crossed it works like it should!

My Broken Baby

I was feeling lots of stress and worrying about my broken baby
and Jacob's first day of school
and how Jacob would always remember his baby brother as

BROKEN
and having surgery on his first day of kindergarten and how much that sucked.

I couldn't sleep and I was lurking on blogs of mothers with children who had Down Syndrome.

And I found this quote:

‎"Christ is building his kingdom with the broken things of earth.
People desire only the strong, successful, victorious, and unbroken things in life to build their kingdoms, but God is the God of the unsuccessful – the God of those who have failed. Heaven is being filled with earth’s broken lives, and there is no “bruised reed” (Isa. 42:3) that Christ cannot take and restore to a glorious place of blessing and beauty. He can take a life crushed by pain or sorrow and make it a harp whose music will be total praise.
He can lift earth's saddest failure up to heaven's glory."
- J.R. Miller

LIFE SUCKS SOMETIMES!

I have thought that more than once these last six weeks!

And I worried that Jacob and Bradley would never really get to play together.

And that Bradley might just become an angel in our efforts to fix his tiny body.

And again I KNEW, that that would be okay.

That we were sealed to him eternally and he would be ours forever.

And I would get to raise him sometime later.

And that I had done the best I could, and given him the body he came here to get.

I knew that Jesus was there at the NICU with Bradley

and that he would be in his surgery the next day and would hold Bradley when I couldn't.

Scheduling Surgery

The next day the doctor came to talk about the results of his swallow study.

She said Bradley needed to be given the consistency of honey
if he was going to have any more food orally.
Honey consistency through a nipple is really hard to get through.
Even a cross cut nipple.
It's like drinking a frosty through a straw.
It's 1 tablespoon CRUSHED rice cereal to 1 ounce of formula.
TRY IT AT HOME.
It's like pudding.

She said liquids leak into his lungs when he swallows and

it was NOT from an anatomical cause.

It's not like his throat is not working. All his parts are good.

She said it is something neurological that is causing milk to go to his lungs when he swallows.

This took me back...HIS BRAIN? THE PROBLEM IS IN HIS BRAIN!?!

But he was so beautiful and he looked so normal!

The Doctor said he would need a surgery to place a feeding tube directly into his
tummy because he HAS to get milk, he's an infant!
Infants need milk in their tummy's often, and he would tire quickly and stop eating if all of his bottles were like drinking frostys through straws :)

She also talked about tightening his stomach around his esophagus because of reflux

...and I didn't really understand what that meant.

That afternoon I was napping and I suddenly woke up.
I remembered the swallow study.
The reflux that reached his lungs and spilled over into them.

They were sending milk down his gavage tube and

HE WOULD BE REFLUXING IT SIX MINUTES LATER INTO HIS LUNGS!

I realized he needed this surgery SOON!

Just as I had that thought the doctor called from the hospital.

She was thinking the same thing.

I had been inspired.

I told her to schedule surgery for as soon as they could.
It was Friday afternoon and she said the soonest would be Monday.

And when I got off the phone I remembered that

Monday was the first day of school for my two oldest.

We were going to have a very busy day!

The Swallow Study

I called at 10am while I pumped.

The nurse said Bradley had had some trouble eating in the night and was coughing a lot!

The speech pathologist came in for his 8am feeding to try and give him a bottle.

He could not take it because he was coughing SO MUCH.

They put the gavage tube back in and told me to come down and see him.

When I got in I picked him up and held him and took some pictures.

Then the doctor came in to talk with me about his feeding issues.

She said that he needed to have a swallow study done.

She said they were thinking perhaps he was getting some of his milk into his lungs when he ate.

They would have to feed him barium and watch it through an xray to see if he was for sure.

So I went down to the xray room with him.

We got there and there was a radiologist, and the speech pathologist.

The speech pathologist mixed up three different bottles of barium in different consistencies.

The first was the consistency of milk.

The second was the consistency of nectar.

The third was the consistency of honey.

They started with the first. I saw a little leak down his airway into his lungs.

The speech pathologist pointed to the screen and said - "see it"

Then they tried the second bottle and it happened again.

Then they tried the third and this time it didn't go down his lungs.

AND it was VERY thick and it was harder for him to get through the nipple. BUT HE DID!

Then the radiologist moved the camera to his stomach which was black because it was full of barium.

And we waited.

And about two minutes later some came back up.

And about two minutes later more came back up.

And about two minutes later more came back up and this time it reached

his lungs and spilled into them.

The speech pathologist said, "he's aspirating his reflux too"

And I knew that could not be good.

The speech pathologist came over to me and told me the results.

For now he could only have formula thickened to the consistency of honey through his bottle.

And that I could not nurse him because he would get it into his lungs.

And I left and realized that Bradley and I would never nurse again.

And I cried most of the way home.

Normal Baby

They gave him antibiotics and for the first time he started look like a normal baby.

And I would go and hold him and wonder why he had come to the hospital.

They weighed him every night and on this night he weighed 5lbs 10oz.

He had gained a pound and two ounces since birth!

He was so cute and I just wanted to bring him home :)

....And I didn't know that the next day would be so hard....

Bottles

When we got into the NICU the nurses said we needed to feed Bradley

through a bottle so that they could monitor how he ate and how much he ate.

I was fine with this and was happy to show them that he was having problems eating,

but that it was gradual.

But it meant I needed to pump.
Frequently.
To get up to 2oz ever three hours I started pumping every hour.
Because of the stress, I had almost lost my supply and it was a lot of work to get it back!!