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.

When Life Gives You Lemon-Shaped Tumors

The Bomb

I have thought of a thousand ways to start this blog post and have crafted and edited it repeatedly in my head but to no avail. There is simply no easy, eloquent, funny or sensitive way to say it:

My baby has a large tumor growing inside his heart. 

The tumor is most likely attached to the interventricular septum and within the last eight weeks has grown significantly and is blocking blood flow from the left ventricle into the aortic valve. Apparently, the blockage is so great, barring a miracle, he will need surgery to remove the tumor and possibly replace his heart valve after birth as long as our little guy makes it that far. 

I am only 28 weeks pregnant and the doctors won't perform open heart surgery on a baby until at least 37 weeks. So for 9 more weeks, we get to hope and pray that the tumor's growth will slow and that our little boy will make it to birth and have a successful surgery afterward. 

The Specifics

This is an extremely uncommon scenario and because of that we are entering into an entirely unknown world with very little studies, statistics or information to help us or even the doctors understand what is going on. Most commonly, fetal cardiac tumors are rhabdomyomas and are associated with a genetic disease called tuberous sclerosis. Our little one's heart tumor doesn't seem to fit that category so we are in even more ambiguous territory. 

Fortunately, because of a little duct that fetuses have, called the ductus arteriosus, our baby should be able to survive until birth at which point that duct starts to close and immediate intervention will be needed to save his life. Stupidly, pediatric cardiac surgeries only occur at Seattle Children's and you cannot give birth there so we will deliver at Swedish and then rush Dad and baby to Seattle Children's via helicopter or ambulance while I get the "luxury" of recovering in a place where they have proper care set up for me. GAG. Talk about an oversight - somebody with a lot of money needs to invest in a labor and delivery unit at Seattle Children's for scenarios just like this. 

Currently, because of the stress his heart is under to pump blood pass the blockage into the aortic valve many things could develop poorly including a thicker heart muscle, fluid buildup around the heart, tissue calcification, or - if the blockage completes - a total shutdown of the left ventricle meaning it would stop developing at all. So far we have miraculously not seen any of these negative effects. 

The Outlook

Right now, our doctor believes our little newborn will undergo open heart surgery to remove the tumor, and most likely replace the aortic valve which she thinks has been damaged by the tumor. The procedure is called The Ross Procedure and the surgeons will replace the aortic valve with his healthy but not as critical pulmonary semilunar valve which they will replace with a fabricated tube of some sort. Unfortunately, even if all goes well in the surgery he will need many more surgeries throughout his life to update that tube as he grows. 

Best case scenario, is that when they go in for the surgery they discover the tumor hasn't damaged the aortic valve and his heart will be back to normal once the tumor is removed. Of course the truly best case scenario is that the tumor will miraculously stop growing or even shrink and they won't need to do surgery until he is much older to remove it...but... well... what the heck,  miracles do happen, so why not pray for that. 

The Feels

I have good days and I have bad days and today I felt like just divulging the news in a very straight informative manner. I think I will find therapy in writing to document his progress and our experience and I admit up front that I tend to be much more optimistic in my writing than I feel, but in the coming weeks I will address my emotions a little better including how I want to handle this with you as we go on this journey together because I will totally need and rely on my friends but just don't know how. I will say, I don't do well on the phone, but I would love it if you dropped by or sent an email and when I'm feeling responsive or brave enough (which comes in random spurts) I will get back to you. 

This is a crazy trial I never dreamed of having and really really really do. not. want. But, sometimes when life gets too good and our faith gets lazy, God finds a way to knock our legs right out from under us and force us back on our knees in the most desperate way.

Point taken.