'O'verwhelmed

Exactly one week ago at Lindsay's 20 week ultrasound we found out that our little guy has an omphalocele. We were shocked and devastated. The initial info that we were given was that there was less than a 50% chance of him making it. We were also asked if we'd like to terminate, which was a bit traumatizing to say the least. We definitely want to give our little Crew (his name for now but reserving the right to change later ;-)) the chance to live his life to the fullest, so they said they'd get us scheduled with the Fetal Center at Primary Children's Hospital. We left the appointment definitely feeling overwhelmed by the big scary 'O' word, omphalocele.

We shared the news with all of you, our family and friends, and we immediately felt so much love, comfort and support! Your prayers, fasts, kind messages and acts, etc were incredible. We couldn't believe how many people reached out to us and how many of you fasted. You know who you are, and we thank you!! Really, we can't thank you enough. It all helped us to make it through the last week to our appointments today.

Today we had our appointments with the specialists at the Fetal Center. The first thing that we learned is that apparently last week they were concerned about the opening of Crew's O being too high, which increases his chances of getting pentalogy of Cantrell. When the doctor today saw the ultrasound she was reassured that the O actually appears lower on his abdomen, reducing the likely hood of that. Whew. Fingers crossed. 

They also told us that as far as they can see in the ultrasound, there do not appear to be other birth defects. Also good news. However, they did reinforce what we've learned online, that associated anomalies often aren't found until after birth.

Oh, Crew has a giant ompalocele - forgot to mention that. His is considered giant because his entire liver is in the O, as well as some of his bowel (intestines). We've heard, and been told by the doctors today, that the chance of the O changing size is possible. Even today during the ultrasound I caught his intestines flowing in and out of the O. It was so strange, and a bit unnerving to see them moving!

We did cell-free genetic testing on him back at 10 weeks in order to learn that he was a boy and also learned that his risk of having chromosomal defects like trisomy 13, 18, or 21 (Down syndrome) are very low. We do not definitively know that he does not have them, though. They would need to do an amniocentesis in order to find that out. We don't want to do that, because they said that his chances of passing from the procedure was higher than the chance of getting a giant O (which is 1 in 10,000). Don't want to play the odds further.

We learned today that there isn't much to do until he gets here. They expect him to get to full term because our other two kiddos had to be evicted either after or at their delivery dates. The doctors were glad to hear this, because then he'll have all the time possible to grow and get strong before he comes to join us. It's almost guaranteed that Lindsay will have a c-section this time, though. A giant O is almost always too big and dangerous to birth vaginally. The c-section will also be larger than normal in order to get him and his O out safely.

Once he's here, there are two options to close, but it's almost guaranteed that we'll actually only have one. The first option is a staged closure where they will keep him in NICU longer because as soon as 1 day after birth they will start to close the O and put the organs back into his abdomen. This can put extra pressure on his lungs and heart, which increases the risk of pulmonary hypoplasia and pulmonary hypertension. The surgeon we met with feels that every kid with an O, small or giant, has both of those at least to some level. Forcing the organs back in would just kick it up and could make it much worse. Also, little boys sometimes end up with organs pushed down low into their other parts.... the pictures were horrible. They call it a scrotocele. We don't want that. Lastly, our little guy is in the 2nd percentile for abdomen size, so likely everything wouldn't fit anyway.

So.. The option that we're almost guaranteed to be taking is "paint and wait." I'd link you to something direct, but can't find a good one. Basically, they apply ointments/creams (? something silver based) to the O, then wrap it with gauze, then wrap with that stretchy tape you get after a blood draw. :-) Super technical there, I know... It will then form skin around the O. The pressure from the wrap helps the organs naturally work their way back into the abdomen this way. Once that happens, they will wait at least 2 more months to make sure that there aren't gastro problems. After that, they will close the O by removing the skin that covered it, pull muscles together, then skin. Kiddo *should* get a belly button at that point. The surgeon told us today that the soonest he has closed with this method is 10 months, and the longest is 3.5 years. Oof. This way also has the benefit of us all getting out of NICU faster up front.

Next steps are a fetal ECHO, and an MRI later.

One of the biggest takeaways today for at least me was the doctors confirming that if he has an isolated O with no associated anomalies like it appears he does, that puts the survival all the way up to 90%. 

I'll stop here :-)

Again, we are SO so grateful for all of your support! We love you all!

We went to a pumpkin patch tonight and saw the best pumpkin to represent Crew and his O. We love it!