This Week with Trisomy 18

This week and today has been one of difficulty to put it mildly, but the Lord continues to be so faithful, and fill me with His peace. Several weeks ago I was so blessed when I learned that God had healed my little Zane's heart. The joy of that news was such an incredible blessing to me. However, as this week and particularly today's doctor's appointment drew near I began to get a little anxious as I do before each doctor's appointment since finding out about Zane's condition.

Some people have been asking, "If the heart is okay then do they still think he will not survive, and why?" From what I understand the addition of a chromosome on the 18th pairing will cause Trisomy 18 babies to be unable to mentally process vital activities such as breathing, eating, etc. once they are outside of the uterus. While these babies are safe in mommy's tummy the placenta and umbilical cord do that work for them. Having an understanding that just because the heart was okay didn't mean we were out of the woods, I knew this appointment may be a bit difficult.

So what did we learn today? The good news is they now feel very confident that Zane does not have a clubbed foot which is wonderful! Also, his cystic hygroma at the back of the neck and spine is almost completely resolved. They were also able to rule out a cleft lip, which is great! However one of my concerns, that he was not developing as I haven't gained weight in the past month, was confirmed today. Currently Zane is two weeks behind where he should be as far as his size goes, which isn't a great sign. The issue that I learned about today that seems more disconcerting is Zane's umbilical cord. As I have mentioned previously, there is a cystic mass in his umbilical cord, as well as having only one artery where there should be two. Today I learned that there are several cystic masses now in the umbilical cord and they are quite large. When the doctor pointed out to me where the mass was, and what I was looking at my heart sank. The largest cyst in his umbilical cord is about equal to the size of the width of Zane's body currently. I am amazed and blessed that Zane is still alive and fighting after seeing so many of those masses, so large clogging up his life source. The concern at this point is that I am very likely to miscarry because if the cysts continue to grow they will not leave room for the nutrients to move freely through the cord to Zane. Currently the amount of flow passing the cysts is incredibly small but still working. My little man needs prayer for these cysts to miraculously resolve.

I have to admit that today was very difficult, and definitely sobering. He is my little boy, and it just didn't look good. He is so precious, he has a little tiny jaw, tiny clenched fists, and low set ears but is still so adorable even on ultrasound. My heart broke as I longed to save him, and I couldn't keep from feeling helpless for a moment. However, the Lord reminded me gently "I am the one that raises the dead, I am the one that heals holes in a tiny baby's heart, if anyone can save Zane it will be Me." I do not know what the Lord has for my baby boy, but I know no matter His plan, it is far better than anything I could do on my own. I much rather trust Him to save Zane, than for it to be solely in my hands. Also, I felt so blessed today by the experience of that particular ultrasound before I received the update on what was being seen. I got to watch him in 3D real time, kind of like watching a video of him squirm around. We got lots of great pictures of him in 3D, and while we were on regular ultrasound they viewed his little feet and got him to move around. It was so much fun to watch his little toes wiggle and his teeny feet kicking back and forth. I continue to be thankful for the time that i have been blessed with to feel Zane alive inside of me, for every second I hear his heart pitter patter, and for each moment I get to see him on ultrasound. Please continue to pray for Zane as he continues to fight this big battle each day. Thank you all, and be blessed!