(An update from Michelle)
Hello friends,
I'm sorry to keep you out of the loop for so long. The last few days have been such a whirlwind I haven't had time to think enough to be able to relay what is going on. Yesterday evening J.J. and Erin took Maya home. It was a very scary time for them and we are praying that God would give them peace and a feeling of knowing exactly how to care for Maya. The doctors really have no idea how long Maya's fragile heart will be able to keep her alive. All babies have a valve that remains open on their heart until about a week after they are born. When that valve closes Maya's heart will have to work much harder, and we do not know if it is going to be strong enough to sustain her. She is eating well and able to keep her temperature up, and K.C. and I have been able to hold her. Our kids haven't had that chance yet so we are taking them over to her house today in hopes that they can hold her and love on her. They have been pretty afraid of touching her because she is so small and fragile.
It is extremely difficult for all of us to understand how it is possible that such a beautiful and perfect little baby has absolutely no ability to survive. We are still trying to grasp the exact nature of her condition. We found out yesterday that additional genetic tests revealed that she has full (not partial) Trisomy 18. It is a miracle that she made it full term and is doing as well as she is given that fact. It is very, very rare for a full Trisomy 18 baby to survive to term.
Please continue to lift up J.J. and Erin's entire family in your prayers. Everyone is completely exhausted mentally, physically, and emotionally. We will be taking shifts over the next week so that someone will be there with J.J. and Erin at all times. Thankfully we have a very large family with most everyone in town, so it shouldn't be too hard to accomplish that. A hospice nurse will be checking in on them each day.
Pray that Maya's heart will be able to keep her little body alive at least through Christmas. Of course feel free to pray for much more than that. Every moment we have with her is a blessing. Pray that J.J. and Erin would be able to experience the joy of their little girl even through all the sorrow. Please also pray that God would give K.C. and I the strength we need to care for our children and J.J. and Erin even through our own sorrow. It is difficult when we have to be apart so much in order to care for J.J. and Erin.
Please know that you are not bothering us if you call, e-mail or text. Your communication with us has been a huge blessing and will continue to be as we deal with the imminent loss of our niece.
Blessings to you all,
K.C. and Michelle
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2 comments:
I just found your blog through Google Alerts and wanted you to know (1) that my prayers are with Maya and her family and (2) that, you're right, most T-18 babies don't survive, but some do. My Lily is now 19 months old with full T-18. I have a blog for her www.iseeloveblog.blogspot.com. If you go to that, you'll also see a list of other T-18 children on the right hand side. For me, seeing these children gave and, to this day, gives me hope for my own little one. Miracles do happen, and the fact that Maya has made it this far proves that.
I came here from Travis' blog. I was college friends with Travis and know Michelle through Legacy Preschool.
Praying, pryaing, praying. Please keep us updated.
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