Wednesday, February 6, 2019

The End of January

As we continue to receive cards and hear about prayers, we grow in our faith, and in our love for Caroline. The support we've received is overwhelming, and we're truly blessed and thankful to all those who are working with and supporting us, even in small ways.

On Tuesday the 29th, we had our second appointment with the therapist, to discuss our progress on telling our other kids about Caroline. We're still discussing the concepts that parts come together, and sometimes they might not all develop correctly. Throughout the week, Jane and Edward had a few questions at random times to show that they're still thinking about it, and that was a good sign. 

In the middle of the week, Katie (the genetic counselor) called Jessica. The first phase of the genetic tests had come back, and the cultures are Caroline's!  A small victory. They're already off for the second set of tests, and we should know around the end of February if they have confirmed a diagnosis of Meckel-Gruber. There is a 25-50% chance that the test will be inconclusive, because they have not yet identified all the genes affected by Meckel-Gruber. Additionally, some genes where they would expect problems may be "clean" even though she still has the condition.

Wednesday and Thursday we experienced the deep chill of a polar vortex, with sub-zero temperatures and cancelled school. And late Thursday/early Friday, the snow came, for a third day of the school-kids getting a break.


On Friday, we also had another ultrasound and visit with Dr. Murnane. Caroline buried her face into the placenta, which is on top, so she was doing a good job of hiding and being shy. It was easy to see how large Caroline's kidneys were, and how they have pushed her heart up almost to her shoulders. We were hoping to get some better pictures of Caroline, but because the levels of amniotic fluid were so low, it was very difficult to see, and the 3D images were not clear at all.






The bottom of the normal range for fluid amounts is a 5. Last week there was just under 5, but this visit they estimated in the high 3s. Around this time (weeks 21-24) is when Caroline's lungs develop, and they grow by "breathing" the fluid. Since there is so little fluid, she won't have much practice, and it's therefore likely she will have a shorter time after she's born. It was tough news to hear, and all-in-all a sad appointment. That aside, Jessica is still healthy and safe.



Saturday Tom worked at a major annual Rotary charity event that he helps coordinate. Jessica was there for the food, and to share time with a friend, while the kids got to burn some energy off in a play area with bounce-houses and face painting. We were able to make it to a mass with Jessica's Irish ladies' group that evening. The boys were literally bouncing off the walls, and Jane certainly drew some smiles with the giant butterfly painted across her cheeks from forehead to chin.

Throughout the week, Tom started talking to Caroline more, and we've had some listening sessions with the at-home Doppler. It warms our heart to listen to hers, as we have a new understanding how precious each beat is - for her, and for all of us. Jessica is also starting to feel her move more frequently and Tom was able to feel Caroline kick for the first time that Sunday.


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