Friday, September 26, 2014

The Diagnosis - How We Arrived Here

So now that I'm here, at Aurora Sinai in Milwaukee, in a long-term care room, my new home away from home for the foreseeable future, let me tell you how we got here.  I am on bed-rest (within reason, I can walk around freely but must take it easy).

My pregnancy started off normal - REALLY normal.  No major morning sickness, only one HG flare up that landed me in the ER for fluids.  But the baby measured small throughout my pregnancy.   Eventually we had a growth scan and it was determined that he was less than fifth percentile for growth.  He was officially Severe Intrauterine Growth Restricted. That means a few things: More than 95% of babies at that gestational age are bigger than he is.  t can be caused by a few things - he could just be small - or there was something wrong. 

Something was wrong.  For the next 3 weeks, we did weekly Doppler ultrasounds at a hospital 20 minutes from our house.   

This week, there was a red flag - blood flow to and from the placenta is not what it should be.  We now can 100% say that this is what's causing him to be so small.  It's what's called "absent bloodflow" and it's pretty dang serious.  It means that not enough blood is getting to him or his organs, which can cause his organs to fail if it gets worse.  Not good.  Or even worse, he could go into heart failure and die.  So we are here, under constant care, in the best hands possible.   Each day we will have an ultrasound.  And each day that he shows no decrease in blood flow, we will continue on.  If and when that changes, we will talk delivery. He won't improve - we just have to basically wait for him to show signs of distress - and hope that it takes WEEKS to get there.  

I met with the NICU Doctor today.   He has a slightly less than 90% chance of being totally okay.   That means he'll survive, but he will have to stay in the NICU and he will have to have a breathing and feeding tube until 34 weeks minimum.   Right now we are shooting for 31 weeks, but realistically he can come at any time.  
This is where I'll update everyone on our progress.   A place I can also share our thoughts and fears and hopes, so that the next person who goes through this, knows they aren't alone.   

This was my Facebook update for everyone this morning - 

Good morning everyone! Thank you for all the messages, wall posts, texts and calls - I'm trying to return them all! Last night was rough. It took me a while to calm my mind enough to sleep. I'm here until he arrives (unless that changes and there are drastic changes).
We officially have placental insufficiency due to cord blood not properly flowing as it should. So here I am.  I am 26w6d today and our goal is to get to 28 weeks and then ultimately 32 weeks. I won't go any further than that because the risk is too high.
Today I'm meeting with the entire team of MFM Dr's as well as having additional Dopplers and growth scans done. Then off to tour the NICU and meet with the staff there. They did the first of 2 steroid injections yesterday along with magnesium sulfate (that stuff is no joke) to help with brain and lung development.
I am trying hard not to be terrified and honestly my mind is clear and my heart is full of hope. He will be okay, he's a fighter and we have the prayers of many lifting us up and we are in the best place possible. He's looking REALLY good on the monitors and my body seems to be doing most of what it should. He likes to run away from the nurses when they adjust the monitors. Or he kicks them.  (That's our fighter!)
I'm on a 24 hour urine catch and then I'll be off the IV and more mobile. They're going to stop the 24/7 belly band testing too today, I think, so I can get up and move around without having to unplug 4 different things. 
Greg and I will continue to update everyone as we can. We are so blessed!

No comments:

Post a Comment