(Update as of 27 weeks)
This update will start positive, take a negative dip, then end positively again. Hang in there.
We went to Columbus today in search of a second opinion from a different Maternal Fetal Medicine (MFM) Specialist. We were not hoping for better news, or different news. We were just hoping to find someone who would deliver the news with the intent of educating and empowering us, rather than discussing termination options. Someone we could partner with going forward. Because we ARE moving forward.
During the 6 hour appointment, we met with a genetic counselor. No huge revelations there, but she understood our hesitation in doing an amniocentesis, and agreed we could get that information in a few weeks once the boys have safely arrived.
We then had a two-hour ultrasound where we took a much closer look at the boys’ brains. She did an awesome job of talking us through what we were seeing, or not seeing. Here’s where it gets interesting. Remember that Absent CSP? Perhaps it was just tardy, but it was there today. In both babies. Now…just like its absence wasn’t particularly ominous…its presence isn’t particularly promising. But nonetheless…it was present today.
Also present today? Signs of the corpus callosum. We were previously told that the corpus callosum wasn’t there (also known as complete agenesis of the corpus callosum / ACC.) Today…at least a partial presence was detected. So we may still be dealing with an incomplete corpus callosum…but we are thrilled that there are at least SOME pathways present, even if they are incomplete or malformed.
Remember that gap in the cerebellum? Well, it’s still there. But when the previous doctor used a scrap piece of paper to explain it to us he made it appear as if there were two spheres that weren’t touching. That missing connection, known as the vermis, IS partially there after all. The top part in particular has some connectivity, although the gap was still clearly identified in both boys toward the bottom of their cerebellum.
I’ll let all that soak in.
In all three brain malformations…we received better news today than we did last time.
You can decide whether we were just led to a more prepared ultrasound tech, or if God is still at work in these little brains. But either way…the news was slightly different this time, and there ARE communication pathways in the brain where we previously feared there were none. In terms of potential that feels HUGE.
Now…all that said, (and that is a LOT)…the diagnosis didn’t change. We are still looking at Dandy Walker Malformation. And in the end, the expectation of some form of handicap or delay is still there with no real way to predict severity. Fatality seems highly unlikely to this doctor, which is fantastic. But she still fears some level of mental retardation to an unknown extent. So while we’re in the same place we were, with a lot of unknowns, it feels more hopeful.
Overall, we were very pleased with this staff. Before we had a chance to bring it up, they discussed partnering with the pediatric neuro team, and how important early intervention would be. That’s a far cry from “there’s not much I can do for you now” or “I’m sorry the news isn’t better” which was the message last Tuesday. We appreciate their interest in looking forward and upward, and have decided to shift our comprehensive care there going forward.
In other news, L is 25% bigger than N. And there was a bit of a jump in that gap since last week. I will return to this doctor in two weeks, and if that gap is the same, or larger, they will keep me overnight for observation and consider intervention.
In other other news, 36 weeks will be the max they will allow us to go. However, given the increased amniotic fluids in both sacs, I am likely to go in to labor earlier. She said not to worry about bed rest at this time. In fact she preferred I stay active, mentally busy, and hydrated. Just…not to overdo it.
Shew! What an update!
The overall message from today’s update is…God is at work here. And we can feel it. When I pictured their little brains still fighting to form some of these missing parts or to make their presence known, an old song from early Sunday School days started to roll through my head…”He’s still working on me…” If this God can make the moon and the stars in a week, just imagine what he can do in a couple of tiny brains in a couple of months.
Tina Surber said:
I kept waking up Monday night with you on my mind and each time I would say a prayer. This verse came to me and I am claiming it for your boys. “For you created my inmost being; you knitted me together in my mother’s womb. I praise you because I am fearfully and wonderfully made.” Psalm 139:13&14
Praising God for your encouraging news!
gary strawn said:
We love you all soooo very much and are praying with all our hearts to our God above who has always been our inner strength in all things. P & N
Jo Lisa said:
We will continue prayers !!! The boys have already been blessed with amazing parents.. God is most definitely working!! Love you!
Karen hall said:
Prayers for those precious babies and you and your husband Our God performs miracles everyday.
Julia Wheeldon said:
That is encouraging news! I absolutely believe God is working on Landon and Nolan. He has picked an amazing momma to share your testimony. We love you all and will continue to pray!
Janet Mitchell said:
Praying for you all – thanks for the update!
Sheila Blevins said:
Yes! God is still working on Landon and Nolan. He is still working on you and your family. God is being bomarded with prayers on your behalf – and He can handle it. Continued prayers for you, Justin, Karson and those precious babies!
Michelle McCaughey said:
God has Landon and Nolan safely in his hands…and He is smiling.
Devon and Bryan James said:
We are continuing to pray for you, Justin, Landon and Nolan. God is definitely working and he is NO way near finished!!!! We love you guys!!!!
John and Nancy Arnold said:
Continued prayers for all of you, Grandparents, Gr-Grandparents, Aunts, Uncles….our prayer is that God will do his work in His time, and if it is his will, that these little babies will continue to improve….in Jesus Name we pray…Splinter and Nancy
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Don and Jan Jones said:
We’re continuing to pray for your family and those precious little babies. God is still at work and remember He is always in control.