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!!
 

 

 

 

 

Love

 

Sick

 

The kids came for visits.
We all loved on him and woke him up, but I know he was glad to see us.
 

One day while I was rubbing his feet and feeling so helpless I realized

he needed me to come rub him with MY loving touch.

The nurses have to much to do to be able to lovingly touch each baby.

They only touch when they have to do something.

Every time other people touched him it was usually to draw blood,

or give him an new IV or test his blood sugars.

HE NEEDED OUR LOVING TOUCH...

AND HE COULD TELL THE DIFFERENCE BETWEEN US AND THE NURSES.

SO I KEPT GOING TO GIVE HIM MY LOVING TOUCH AND

TO LET HIM KNOW THAT PEOPLE STILL LOVED HIM.

And sometimes I was at the right time to give him a bottle.

And he would drink the WHOLE thing in 5 minutes.

But he got infections twice while they were feeding him with the bottles and

I was glad they were finally seeing what I had been talking about.

BUT I hated seeing Bradley sick and hearing that it was

mysterious why he would get sick after eating for a few days.

And this puzzled me.

The NICU

The NICU grows babies.

Babies born preterm need their methods of high calorie feeds and dark womb like rooms.

But remember, BRADLEY came at 44 weeks! NOT 34!

It is really a shame how many babies come before they are ready
because of induction and c-section and then HAVE to spend time in the NICU,

but that is really a whole other THING :)

TANGENT!

And so we were moved to the

NICU and every nurse had their theory about our Bradley.

His first nurse said he had an infection from the meconium
that surrounded him at birth and had he come at the hospital
they would have done a better job of getting it out of his lungs.
She told me to go home, get some rest and she would grow my baby.

The next nurse was Joanne.

She was a sweet lady from Tennessee.

She had been born at home.

She believed in breast milk and nursing.

She let me nurse Bradley twice.

I will always be grateful to her for that.

It would be the last time he ever nursed.

The next nurse was Chuck.

He was a big burley man with tatoos and a fu-man-chu.

He told me I needed to drink a beer to up my milk production.

He told Tom and I that CPS could come take our

children for Bradley being diagnosed with failure to thrive.

He also said home birth was fine

but we should have done something to get him out

before 44 weeks and that our midwife was crazy for letting him cook that long.

He believes babies lose weight the longer they cook and

that we had in fact hurt Bradley by not coming to the hospital to be induced.

Several times that I left Bradley with Chuck I didn't understand how

Chuck could grow Bradley but I could not.

The last day that Chuck was our nurse the Doctor came in and talked about Bradley with me.
He had been in the NICU for four days and was starting to show signs of an infection AGAIN!

He was having trouble eating and Chuck had been putting his food in his gavage tube.
 I knew he was starting to show a reaction to his food like he had before.

BUT IT WASN'T AN ALLERGY BECAUSE IT WAS A DELAYED REACTION.

Allergic reactions come on sudden or soon after.

Allergy symptoms include, vomiting, blood in the stools, anaphylaxis.

None of which Bradley had ever had.

The Doctor in the NICU thought there was something more to Bradley that would explain WHY he didn't come till 44 weeks and why he was sooooooo small at birth.

So she sent out tests for micro deletions and micro duplications of Bradley's chromosomes.

And he got another infection.

And he got another spinal tap.

And he got another blood transfusion.

And his belly got distended.

And his intestines twisted.

And Chuck used a bulb syringe to keep Bradley's binki in his mouth.

And while Chuck did the best swaddling job I had ever seen, I knew he was wrong about us.

I WAS A GOOD MOM.

I HAD DONE EVERYTHING I COULD TO HELP BRADLEY.

BRADLEY HAD JUST STOPPED WORKING ON ME!

And I think Chuck and the other nurses were starting to see that.

Metabolic Disorder???

He was in the PICU for the next few days. We never really found out what was wrong with him and the nurses and all the specialist that came in just kept saying we had a very sick little boy.

They started feeding him my breast milk which I had been sporadically pumping.

When you are being told your son is going to die you don't feel like pumping much.

They fed him in a gavage tube.

He never woke up while we were in the PICU and the nurses and doctors were puzzled by this.

When they finally got blood out of his belly button line they sent it for some testing.
The doctors were convinced he had a metabolic disorder.
The had also sent out some initial chromosomal stuff.
He was technically eating again which had me worried that he would some
how reject the feedings they were giving him.
But I didn't know how he would if it was being forced down a tube to his tummy.
And he started improving and he was tolerating feedings.
And so five days after being admitted to the PICU we were moved to the NICU because they would be better at getting my baby to gain weight....and I thought perhaps he did just need to get fat and maybe we could be sent home in a week.

Bradley is in the Hospital: Part 2

After they got the surgically inserted line into him he came back looking like this.

The line was in his belly button and they told us that it could close in few days because it

was in a vein that only newborns have.

I went home that night so exhausted and thought about death and how close we had come.

I read Tom's patriarchal blessing that night and re-read the paragraph about his family. It says:

"Thomas, you will meet and become acquainted with a beautiful young lady who has been prepared for you to a wife and helpmate. You will take her to the House of the Lord and there, under the authority of the priesthood, be sealed together to form a new eternal family unit through whom some of your Father-in-Heaven's choice spirit children will be given the opportunity of mortality...You will also need to provide strength, council and wisdom to help the members of your family deal with the problems they will encounter in their lives."

All of this part seemed so pertinent now!

I re-read

"will be given the OPPORTUNITY of mortality"

over and over again.

What did that mean?

Was Bradley going to die?

Is this his opportunity?

Did he just need to come and get his body?

I realized that God loved me.

He had a plan for me.

I was meant to go through this right now.

God loved Bradley.

AND THAT WE WOULD HAVE TO BE PATIENT

TO SEE WHAT HAPPENED WITH THIS CHILD OF GOD.

Our sweet infant child, teaching us HUGE life lessons.

Bradley is in the Hospital: Part 1

Bradley was doing good after his birth. He was eating. He had gotten my milk to come in.

But I felt a strange nagging feeling that something was not right with him.

I had a hard time when anyone would ask me about his weight or how he was doing.

My husband, my Mom, my midwife, and my pediatrician kept reassuring me

that everything looked fine with him, he was just a small baby.

I was reassured by the fact that he was eating really good.

On Wednesday August 3, he ate every hour,

which is typical for a baby that is trying to get more milk.

The next day he slowed to every three hours and had a very long nap in the afternoon.

That night he was up all night, crying, and very unhappy.

The next day he ate less.
The next night the same as before.

 Saturday night, after not sleeping much,
 Tom took Bradley downstairs and tried to force him
 to take a bottle with formula (which he was not a fan of) while I slept.

At 4am Tom brought Bradley back to me,
 telling me he hadn't slept much or eaten much for him either.
 Tom said we should probably take him to the Doctor in the morning.


Bradley cried until 6am.


 I called my Mom and cried to her, I told her something was not right with
Bradley and he had not eaten a full feeding since 6pm before we went to bed.

As I was on the phone with her he finally took the bottle and drank 2oz.

Mom and I talked about it and I realized he had eaten only two real feedings in 24 hours.

I had been trying to drip breast milk or formula into his mouth and he would not suck.

I also realized he hadn't slept in 36 hours. I decided he did need to go to the Doctor.

My doctor is open on Sundays so I called and got him in at 9am.

When we got to the Doctor, they weighed him and he'd lost an ounce.

The Doctor came and looked at him and said he needed to go to the

hospital if he wouldn't suck and he had lost weight.

Dr. Levin said Bradley didn't have any reserves to not be eating.

This was the last picture I took of Bradley at home.

This is a picture I took with my cell phone in the Emergency room.

They got one IV in him. Took blood, did a spinal tap, and took some urine through a catheter.

They said he was showing signs of infection because of his low temps.

He was admitted for failure to thrive and hypothermia.

They admitted him to the Pediatric ICU, because we had come from outside the hospital

and he couldn't take outside infections to the NICU.

We got up to the room, meet the nurse and talked with the
 Doctors who all could not believe my story about being
 44 weeks pregnant and having a 4lb 8oz baby.

The nurse said they would work on stabilizing him

and he'd probably go to the pediatrics floor in a few days to fatten him up.

They hydrated him with an IV and put some reflux medicine in his tummy and before I left he took a bottle from the nurse. I was so happy to see him eat!
The nurse encouraged us to go home and get some rest.
 I was EXHAUSTED.
We left and came home and slept 12 hours.

IT WAS WONDERFUL!

We decided to go check on our other kids who were with Grandma.
They were doing fine and Grandma said she could keep them so we could go see Bradley.
 As we drove to the hospital, I called to check on him.
The nurse said Bradley had had a rough night and had stopped breathing.
They had put him in an incubator to maintain his temps better.

They also needed us to sign a consent to try to get an

PICC line into him to get some blood out of him for testing.

I told her we'd be right there!

When we got there he looked like this.

I put my camera in the door of the incubator to get this shot of his face.

They tried for the next 24 hours to get a PICC or a CICC line into him to get blood.

They never could.

He was showing signs of infections.
And his levels were all very out of balance.

They were having to intibated him because his breathing was so erratic.
We thought he was going to die and the nurses and doctors did too.

It was one of the scariest things I had EVER been through.

The doctors requested we come back to the hospital to sign for a surgically inserted access line.

They told us this would be our last chance to get access into this baby
 and that after that they could do no more for him.
His breathing tube had come out and the nurse said I could come and hold him ONE LAST TIME....

I realized I hadn't ever take a picture holding him and I wanted one.

The nurse took this picture of me holding him and I could not stop crying for the pictures.

The pediatric surgeon came in and went over the risks of his surgery.

The surgeon said that this was his last chance to get any help from them and that

our baby would die if he couldn't get this line in.

He also said that our baby had a VERY HIGH chance of bleeding to death because he wasn't clotting very well and that we should know that there may be a chance he could die from bleeding to death.

Tom and I could not stop crying.

I felt like he was going to die.


We sang to him and rubbed his little hands and feet and told him we loved him.
I hugged Tom and told Tom that he would be ours forever and it didn't matter if he died.
Then they took him.
And it was so quiet. And all I could do was go pump.

Tom and I went into the pumping room and talked about a funeral, and when we would do it.

I talked about burying him in his blessing outfit.

And then we just cried. It was the saddest I HAVE EVER FELT!
After I was done we went back to Bradley's room.

We were still crying and talking.
AND THEN THE NURSE SHOUTED
"THEY GOT THE LINE!"

They got the line? Did we hear that right?
I asked her if I'd heard her right, she assured me he was fine and
he was going to return from surgery in a moment.
And then he was back.

Out of it still, but back and still ALIVE!
NOW HE COULD HAVE A BLOOD TRANSFUSION AND GET BLOOD OUT FOR TESTING.
They finally got blood out of him on Wednesday, 4 days after we were admitted.
It had been a very long 4 days.

That night when we got home,

I was going through some dirty laundry and

I found a little hat of Bradley's in my dirty clothes, that he had worn.

I sat and smelled it for a while.

That familar scent of my baby.

And cried.

I put the hat in a special place and told Tom he could never-ever wash it.