Step One

Spent the morning at the perinatologists. Got some cute shots of baby (thumb sucker!!), but still wouldn't reveal the goods. Ha! But...baby's cord has three vessels and not two like they told us yesterday!!!

Here's what we know right now: 1) Baby's organs are all reversed. Heart and stomach are on the right side of it's body instead of on the left. It's the least of our worries, but does affect how they read the sonograms. 2) Baby has hypoplasty of one of the heart ventricles. They are assuming the left (HLHS), but since the organs are reversed and backwards it could be the right. This means the part of the heart that pumps blood out into the body did not develop correctly. In the womb, this is not as serious, but once baby is born it would immediately need open heart surgery. 3) Baby has a complete heart block. The part of the heart that acts as the pacemaker is malfunctioning, most likely because of the hypoplasty. The top of the heart (atria) where blood comes is is beating at 130. The bottom of the heart (ventricles - sends blood to lungs or body) is beating at 90. Once baby is born they could put in a pacemaker to correct. There is nothing they could do in-utero though. Due to the difference in the rates within the heart the baby is at a 50/50 risk for heart failure in the womb. This would be fatal unless they just happened to catch it at a time when they could deliver baby in time.

To top it off, they need to know if there are any chromosomal abnormalities before they can even begin to make an action plan to care for baby. If it's Trisomy 21 (Down's), or no chromosomal issues, then we go to a pediatric cardiologist for the rest of the pregnancy. That would mean I would deliver at Children's Mercy with a scheduled c-section and baby would go immediately into open heart surgery, with other surgeries to follow over the course of a few years. If there are chromosome issues other than Downs, they are completely incompatible with life. I could continue the pregnancy with my normal OB and deliver at my normal hospital with a hospice team instead of the normal neonate care.

I had an amnio done in the office today. Honestly, I was terrified of it but it was not much worse than getting blood drawn. I had only heard horror stories but it was fine. I feel fine now and they did an US the whole time to make sure baby was ok, and then checked baby out again afterwards. We will get the first stage of results next week, with more to come over the next couple of weeks as they go through everything completely to see if they can figure out the cause for the defect. If nothing shows up, then this was not chromosomal but just random chance. If trisomies are present, then again it was random and most likely would not occur with another pregnancy (doctor said less than 1% chance). If the issue is missing chromosome pieces, then DH and I would be encouraged to get future testing because it means the risk to a future pregnancy is higher, but still rare.

The doctor told us he sees the hypoplastic hearts frequently since he's the specialist - that's what he does. The inverted organs on their own are more rare, and the heart block by itself is even more rare. But he's never seen all three present at the same time. I feel like we should go buy a lottery ticket because apparently we can hit 1:1,000,000,000,000 odds.

So we have some answers, but we still don't know yet what is going on. The doctor has said there is no risk to me right now in continuing the pregnancy. DH and I have decided to not choose termination, but to carry the pregnancy as long as we are able to. I know things will come in waves, but for right now I am not really sad. I am accepting the fact that we will most likely not get to raise this baby but we may get the chance to see & hold our baby if even for a little bit. I know this is something I didn't cause and something I could not have prevented, and it most likely will not happen to us again with another baby. I'm not angry or thinking "why us?" To me it's not an indication of God not caring for us or not providing for us. It's just something that happens, and we will make the best of it that we can, and DH and I will get through it together. (Someone may need to remind me of this later when I am breaking down).

And now I need a nap.