Pulmonary Hypertension

The twins had echocardiagrams today to follow up on their PDAs.  Scarlett's PDA is still there but is small.

Grayson's has closed!  BUT the echo revealed he has Pulmonary Hypertension.  This condition makes it too hard for him to pump blood through his lungs and is the leading cause of death for babies with BPD after their first month of life.  I found that factoid about 5 minutes ago while googling the condition and seeing a link from our very own Nationwide Children's Hospital.  We will find out more tomorrow, but here is what we know now:

• The condition was not present 1 month ago on his last echo.
• The main campus cardiologists interpreted the echo and sent the results back to our NICU.
• Our doctor tried to talk to the cardiologist about a treatment plan but they never connected.

We assume if the condition was dire enough there would have been more urgency from the main campus cardiologist.

We also know that our NICU doesn't treat this condition so we will need to transfer to the main campus for treatment.  Our current team knows how involved we are and knows it will be tough if our kids are split up, so they will do everything they can to keep them together unless:

• They don't transfer him right away and when they do, Scarlett is close to going home.
• They decide they do need to get him there ASAP and only have 1 bed spot.
• They feel like they can't justify a reason to transfer her for the insurance to pay.

In the meantime, Grayson is back on his CPAP.  Trish said he was extremely angry when they put him back and it was the loudest/longest cry he has let out so for :-(

We have spent 69 days growing close to our nurses and practitioners.  If the best option medically is to transfer we will obviously jump on it, but it will be very difficult emotionally.  

Please pray for Grayson's health, and our mental and spiritual state.  We know what God created and how sin entered the world.  We know that God will use us and this situation for His glory.  We know that this pain is temporary and that these bodies are temporary.  We know that we are sinners who don't deserve anything good.  But we can't help but slip into our selfishness some times.  Like when it dawns on you that the routine of visiting your newborns then leaving them behind every night is normal.  Or when we see your beautiful babies home, snuggling with you or keeping you up all night and it feels like we will never get there.  Or when we see your facebook posts about how great or annoying your pregnancy is, and we wish we could rejoice or complain with you.  Please don't hide these things from us because we are extremely happy for you, but we expected to be there too.

UPDATE (11:59AM on 1/9/15): We were able to speak with the doctor today at rounds. The good news is they are considering Grayson's Pulmonary Hypertensions as "Mild to Moderate" and don't want to try medicine yet. He will have a follow up echo in a week to see if his condition has changed, but the only thing we are doing different at the moment is that he will stay on the CPAP with a higher pressure (6). We won't try medicine yet. They did tell us that we should no longer hope to have him home by his due date (Feb 9th).