Some facts about JT
He has gastroschisis
He has schizencephaly with hydrocephalus
He has lots of hair
He’s considered chubby
That’s all from the sonograms
Here’s what I know
He likes music
He likes nesquik chocolate milk
He would be a great soccer player
Around 4 am, sleeping just isn’t the thing to do
He’s camera shy, but sometimes will put on a show if your watching my belly
I will carry you
Today was a pretty long day for baby and mommy. First was the MRI, which was backed up a little. So I had to wait a little while for that. Which was fine (except we were pretty hungry). When finally in the machine, I had to hold my breath when they said, and release when they said. That was kind of tough. And I could feel JT moving, which the lady commented on after, said he wouldn’t cooperate for one picture they needed.Next was the heart echo. All was good there. That was good news, and went quick. Then we waited for a while. I think it was lunch for everyone.Finally the ultrasound occurred. It was rather funny, he kept rolling and kicking. The poor technician. He just would not hold still. She said he keeps bouncing his butt around. Goofball. She could not get two shots of the head like she wanted, just one. I am convinced he is camera shy. I got a profile of his little face, she printed it because his mouth was open and his tongue was poking in and out. I think he was laughing. It is the last picture I included in this post.When the doctor came in, he was still wiggling away. But he saw what he needed. The gastroschisis doesn’t seem to be that bad. He said that he is four pounds, four! He is actually a little chubby, and his tummy is growing so it seems like to him that can be repaired…This is when all the serious talk began.
First off lets get this out, this was the cup half full doctor.
I’m not going to sugarcoat anything. Just going to put it down as sufficiently as I can from what I recall them saying.
His brain can’t be repaired. What you have is what you have, or in JT’s case, what he doesn’t have… The doctor talked to the MRI doctor, he actually made it sound like a handful of doctors are talking about this case. It seems no one knows what to tell me exactly. There’s so many things wrong… It’s worse than what they thought. He asked me very soon in the conversation, do you know the difference between a chromosome problem and a syndrome, and I didn’t so he explained that his chromosomes where all there, but say someone handed me 35 computer disks completely intact, well, they’re intact, but the information on them is screwed up.
Its not just the semilobar problem anymore, because its not just the back that is connected, there is also a connection in the middle, and one side is swollen. Ontop of that, the top part of his brain just seems to be absent. That’s what separates us humans from the animal world, it’s what says I’m hungry, I need to breath, I need to not put my hand in the fire, I want to watch tv…
Since it’s showing so many signs of other things, he made it sound like each doctor considered it to be something different. But as of right now, they are labeling it schizencephaly with a case of hydrocephalus.
He thinks I should deliver there, not in my hometown like the doctor at home thinks. Because he said basically there is more to comfort care than just comfort care. I could choose to draw the line at this or that… We just don’t know what his brain is capable of, and five days into comfort care am I going to be like ok what now? So he thinks Pittsburgh is best. And he said you never know what a brain is capable of, there’s always stories of people missing parts of their brains and other parts compensating. He said that the gastroschisis can be fixed most likely very easily, so then during this comfort care he wouldn’t have an open wound. He made it sound like we could enjoy him for a few days..
Then we talked to the neonatologist. Or the little baby doctor as the other doctor kept referring to her as.
She didn’t give us such a good prognosis. She doesn’t think either way we can even feed him. It’s most likely that he’s not going to want to eat. And then because the gastroschisis surgery would cause him to be fed by a little tube, and she doesn’t know basically how he’ll handle it/if it’d be worth it. So it was sort of a loose, loose there. She said his tummy can be covered, and that he wouldn’t last very long, especially if he just didn’t come with the want to breath or eat. So she made it sound like less time.
They say he’s doing so well now because I’m supporting him. Why can’t I make him better? I guess God is just sending a little visitor. I don’t understand why. I know I won’t until I’m in heaven racing John to see our little boy. I just wanted to take him fishing so bad, and dye Easter eggs, and lay on our backs on a blanket on the fourth of July and watch fireworks…
Ecclesiastes 3:11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.
These are all the photographs we have so far of JT.
There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this? People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this
So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you
Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says
I’ve shown him photographs of time beginning
Walked him through the parted seas
Angel lullabies, no more teary eyes
Who could love him like this?
I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen Me
To carry you
johntruett 