To our family and friends,
Our apologies for the length of time that has elapsed without giving an update, but we greatly appreciate your continued prayers on our behalf. The Lord has been answering prayers and giving us clear direction as we seek advocacy for Matthias. We certainly still have a lot of questions and variables to consider, but we are grateful that God is making a way for us and showing us how to walk therein.
In our pursuit of supporting and caring for Matthias, we realized that we needed to consider care facilities and options outside of NM. The two primary locations for this were Boston, MA and Sacramento, CA. It became evident that Boston was a definitive “no” and that UC Davis in Sacramento was willing to consider taking us on as patients. It couldn’t be any clearer than that. We have been in communication with the Fetal Care Center in Sacramento and have been working with them to determine next steps. As such, we will fly to CA this coming Friday, February 27th, to then meet with doctors/specialists/surgeons/care team on Monday, March 2nd, as well as complete further testing. This will be a very full day, but we are hopeful that we will come away with a better idea of what might be possible. Some of these considerations are the kind of care that can be offered to Matthias to include potential surgery, a temporary relocation for our family that would take place prior to Thias’ birth and continue for however long is necessary to care for all of his needs, and whether we can still be taken on as patients even if intervention measures are not considered possible.
In the meantime, we have continued to see our local providers to keep tabs on his development and growth. At the end of January, it was confirmed through a pediatric cardiologist that the hypo plastic left heart syndrome was present, and therefore, the left side of his heart is severely underdeveloped. However, his heart has a good heartbeat and doesn’t appear to have any great stress or fluid build-up around it, which we are so thankful to the Lord for. Matthias is still on the “small” side as far as growth is concerned, but that is not abnormal for a Trisomy-18 baby. The cysts that were seen on our first anatomy scan have resolved, and there have not been any new developments of concern to transpire up-to-date. Praise the Lord! Another praise we have is that my placenta shifted locations, which will allow for the consideration of a normal delivery, as otherwise, the likelihood of needing a c-section was much increased. Starting this week, I will begin weekly ultrasounds with an anatomy scan every 3 weeks or so. We were told this is standard, “by the book” procedure for a high-risk pregnancy.
Once we return from CA we hope to have a clearer picture of what comes next and what our course of action will be leading up to Matthias’ birth. There is still a possibility that he could be born as a still birth, but we are very prayerful that God in His mercy will allow us to meet him alive this side of heaven. Please continue to pray as God leads.
With much love,
Beth and Daniel
