Ugh

No lie.  Today was a tough one.  I tried going to work after the appointment and just seeing a friend brought me to tears.  And a little while later Chris called and I could barely talk to him.  So I went home, with a bit of crying in the car.  Unfortunately my coping mechanism at the moment is to just want to ignore everyone.  Not exactly all that practical.  So why are things so bad?


Yesterday I got a call from Children's Hospital in Boston.  They could schedule me for an ECHO today, or next week.  Um, we'll take today, please.  So we go in this morning.  Ugh!  9:30 appointment, which meant we were sitting in rush hour traffic for 2 hours.  Got there a little bit late.  Finally get into the exam room around 10ish.

First one doctor takes a look, and then another one (the one we were scheduled to see) comes in and does his ECHO.  Many times I was finding myself dozing off.  This actually frequently happens for me- it's a dark room, you're lying on a bed. Plus it was hard to see anything because they only had the one monitor for them to see (at UMass they have a second monitor positioned so that the patient can watch what's going on).  So not only were there the two of them, but then there was also someone who I presume was a student.  And they were then all speaking in hushed mumble-y tones, not to mention they were speaking doctor-ese, so it was hard to know what was going on.

After they were done we go into another room to discuss the findings.  At this point they also had a nurse join us.  First they ask what we have been told from previous visits- what brought us to Children's.  Then the doctor starts explaining the situation.  To begin with, it's nothing new.  Which is actually ok.  Nice to know he was in agreement on the other findings.
- Tricuspid valve not working properly, causing the right ventricle to become enlarged
- Also an enlarged right atrium
- Small amount of blood going forward to pulmonary artery showing that there may not be an actual problem with the pulmonary valve (in earlier visits it was working fine- only on Tuesday did he notice it wasn't working, probably due to the enlarged ventricle and the messed up tricuspid valve)
- Left ventricle and right ventricle function mildly depressed. (this is a note from the nurse- I'm not entirely certain what this means.  I know the doctor did mention that the left side also was not properly functioning.)
- Very concerning heart defect (in fact, he said that on a scale of mild, medium, severe our baby has a very severe heart defect)
- Baby may not survive pregnancy or delivery

I think we were more or less holding it together until that last one.  What?  Where did this come from?  However, no mention of wanting to deliver early.  The plan for now is to come back next week for another ECHO and an MRI.  Also mentioned was that I should meet the NICU team, but that hasn't been scheduled yet.  I'm also supposed to keep my BPP appointments at UMass.  This doesn't quite make sense to me.  Wouldn't they want me to just have everything done all in one place?

Chris and I both agree that we liked the old cardiologist better.  He had a much better way of letting us know what was going on, but not freaking us out.  However, maybe he didn't realize how bad things were.  I don't know.  We also agree that we liked the hand-holding that we got at UMass- they took care of all the scheduling, etc.  I guess it helps that everything is in one place.  With the current situation we're dealing with two different hospitals.  Although luckily they are adjoining.

So what's the plan?  Surgery is in Baby's future.  The goal will be to repair the tricuspid valve and the pulmonary valve if needed.  Depending on how those go, other surgical options may be needed.  I'll deliver at Brigham & Women's with the baby being immediately transferred to Children's to go to the cardiac ICU.  In fact, I believe the plan is to have some cardiac doctors on hand when I deliver.  Although there is no way to know exactly how things will play out, we can expect Baby to have to spend about 4-6 weeks in the hospital.

Another thing that is interesting to note.  Given the problems that they are seeing, they would usually see messed up circulation in other parts of the body, blood flowing the wrong way through the umbilical cord, etc.  However, this isn't the case with our baby.  That's all looking normal.  He said he was very surprised by it.