(22 weeks, 0 days)
This morning we began our meetings with UT Southwestern, the third and final level of specialists.
Owen continues to be very sick and the fluid is continuing to build. The fluid is compressing his abdominal organs, making them very hard to see on sonogram, and determine if they are there and functioning as they should. Owens amniotic fluid levels are decreasing as a result of the internal organ compression.
The cause of the Hydrops has been preliminary diagnosed as something called Noonan Syndrome (PTPN11). This affects the heart, kidneys and lymphatic system which is most likely contributing to the fluid accumulation. Although it is nice to know the likely cause, it does not change our course of action, or the looming Hydrops. Neither parent carries this gene, so Owen is a unique baby with a random gene mutation.
If his swelling and organ compression weren’t enough, Owen’s lungs continue to be an issue for him. His heart is still strong and we give God the glory for that victory. His lungs are completely collapsed and both of his lungs are filled with fluid, inhibiting their growth and formation. There is a slight possibility that they can drain the fluid within the lung cavity, but it too is both risky to myself and baby. So, we wait and pray for the medical team’s wisdom.
Unfortunately, with Owens diagnosis, also came mine. I am in the beginning stages of “mirror syndrome” meaning that I will continue to retain fluid, as well as Owen. This can affect blood pressures, respiratory, heart rate and so forth. Now we juggle the risk between maternal and fetal health. We will be watching very closely from here on out. Our doctors are supportive of our decision to carry Owen as long as possible, despite the lack of possible intervention.
It feels like we didn’t get much good news today, but we still have our Owen, and as long as he is with us, we will fight. We will continue to bathe him in prayer and continue to petition our Lord for miraculous intercession.
“Then Jesus told his disciples a parable to show them that they should always pray and not give up.”