One of the lines going into his belly button cracked this morning while they were trying to adjust how deep it was going into him so he is dehydrated.  He has high potassium and sodium.  His bilirubin levels are high so they have him under a “grow lamp”.

New line is installed at 1407. His blood transfusion is still running.

I just keep going between mom’s room on the 5th floor and the NICU.

1518 mom is nauseous again.

2117. While doing the transfusion RT blood volume went down.  They were not sure where blood loss was occurring so they did an ultrasound on his brain,  they found the bleeding. The bleeding is limited to one side of his brain but on the worse end of the scale. Follow up ultrasound tomorrow.

One of the  NICU Dr. comes and explains the seriousness of the situation of intraventricular hemorrhage, all the complications and potential outcomes and possible difficulties RT can have in life. Potential lifelong issues ranging from learning disability to cerebral palsy, seizures, lack of motor skills on one half of his body, poor balance, deafness, blindness.

I ask if our baby has a chance to only have the lesser issues and yes. He says RT has a 70-90% chance of a bad outcome. It’s a big range bease brains are so intricate. I have to have faith RT will have a fulfilling life. He is my son and I will not give up on him.

Dr. then asks how much we are welling to do to keep baby alive. Do we want them to perform chest compressions if needed? He plans on removing baby from ventilator the next day because he is breathing “too well” he says his co2 levels are too low. I didn’t even know this was a thing. They were telling me his breathing was great, not that it was too good.  If he is unable to breathe after they pull his ventilator do they want me to re-intubate?
How is this even an acceptable question. In my mind my son has a chance of a long fulfilling life and an oportunuty to change the world. This doctor is asking me if I am willing to give up on my son.

When would I be willing to give up hope for my son’s life? What kind of a question is that for a parent?

I tell him, as it stands now I either have a ton of faith that RT will pull through and be that 30-10% chance. He has made it this far and his lungs work “too well” he is a fighter and will keep fighting. The other option is I am in shock and denial that he will be handicapped. I just know many people can be handi-capable. As I say this I feel like the Dr is staring me like I’m an idiot, and making the wrong decision.

RT won’t have a chance at anything if we give up on him now. Failure is not an option.

I feel anger.  Why have we been put in this situation.

Is it  my anger, fear, and stress that make me think that Dr. had horrible bed side manner? He definately seems like a capable doctor he was the head of that organism that moved my son from the delivery room into the NICU.  He probaby just wants to give me all the information so that I make an informed decision. Maybe he was looking at me with concern when I said I could potentially be in denial.

I come to realize I am defiantly not in denial,  I comprehend the situation, the risk, the possible outcomes and the percents. To me I only see one decision and that is to continue haveing faith, take each day as it comes and help RT fight every step of the way.

A second. An inch. A minute.

My son will  prevail, he will survive he will thrive.

We all love you RT.