The Latest Complication: IUGR and The Case of a Big Tumor in an Itty Bitty Baby

Last week I saw five different doctors (four Seattle days in a row, ugh) and yesterday and today they gave me a steroid shot to hopefully jump start baby's lung development. Side effect? Sleeplessness. They also gave me some complex bad news. Side effect? Sleeplessness.

I am so exhausted.

At 19 weeks pregnant, we did the normal anatomy scan of our little guy. His growth looked great, everything was fine except for that tumor. Since that time we have had many ultrasounds and echograms with our pediatric cardiologist but apparently they don't look for anything else besides heart development in those scans. Furthermore, it has been a nightmare getting my records to my various doctor's offices which meant a lot of time went by until my OB realized we needed an immediate scan of the rest of the baby.

Fast forward to yesterday when I went in for that scan at yet another specialist's office and we learned that in tandem with the growth of the tumor (and likely because of the lack of blood flow), our baby's rate of growth has dramatically reduced and he is now measuring in the 7th percentile leading to our latest diagnosis and buzz word of the day: IUGR (intrauterine growth restriction).

No big deal I thought, small babies, growth percentiles... that's all normal and kind of hogwash anyway. Apparently I thought wrong. IUGR babies have two common outcomes, pre-term delivery or stillborn. At 29 weeks pregnant, a pre-term delivery would be viable and actually not all that unusual for an IUGR baby... except for... minor detail... baby needs emergency heart surgery after birth and they won't perform open heart surgery until 37 weeks - and I'm assuming on at least an average-sized and healthy baby.

This particular Maternal Fetal Medicine doctor (which is Swedish's group of "complicated pregnancies" doctor) who I had never met before, let me know that the baby would have to be delivered at 37 weeks absolute maximum to avoid stillbirth and that I would need to come to her office at least twice a week for 2-3 hour appointments for monitoring - toddlers not allowed.

That's when I lost it. Oddly (courageously? morbidly?), until this time, I haven't really cried at any of my doctor's appointments - teared up on occasion, but mascara smearing ugly crying, no. But to have one doctor tell me that the baby can't even be operated on until 37 weeks minimum and the longer he is in the better while the other doctor is saying 37 weeks maximum but most likely earlier because he will either stop growing or die completely in utero before then... and oh by the way if they don't see significant improvement they will be admitting me to the hospital (again toddlers not welcome) well it's a lot to handle. But to separate me now, for the millions of doctors appointments, upcoming delivery, and the predicted months long hospital stay after he is born from my active, dependent and still very young toddler is too much.  I am so fortunate to live close to my mom who has been such a godsend in caring for K throughout all this and most appointments so far, but this is too much for me, for him and for my mom.

So I made my first decision against the doctor's recommendation: I will aim to only go over once a week for all the monitoring, ultrasounds and other appointments that toddlers aren't welcome at. I am a mother to both my boys but is it right to not be a mother to one while the other has so little chance? At what point do we read the writing on the wall?

This latest development is complicating to say the least, and I plan to demand an appointment with the many doctors involved so we can all get on the same page and develop some sort of plan. Also, it seems about time to start seeking out second opinions - even at the cost of more appointments, time away from home, and additional confusion.

I will continue to keep you all posted via the blog and please don't feel obligated to comment. This is a hard topic and quite frankly not one I wanted to keep relating over the phone or text message so I'll do so here and be a little more taciturn on the subject in other forms of communication. If you are a praying type, I'll take those in abundance. Also a nap. I'd take that in abundance too.