What we think we know about Shiloh so far:
- She will be born with a bilateral cleft lip and palate.
- Part of the front of her brain is fused which makes the doctors suspect some variation of Holoprosencephaly, we will not know exactly until she gets an MRI sometime after birth.
- There appears to be a small part of the back of her brain that is not connected/missing which makes the doctors suspect partial Dandy Walker Malformation.
- Something doesn’t look normal with the shape of her skull, mainly near one of her eyes, which makes the doctors wonder how her vision might be affected.
- She is growing very slowly and has been labeled with IUGR (Intrauterine Growth Restriction).
- Shiloh’s chances at surviving at birth is still a very real concern. The doctor gave his guess that she has a 70% chance of surviving birth.
What we know, and are learning even more, about our Father:
- He’s always good. Even in this, we have no doubt of this and fully trust that He is using Shiloh’s life and story for his glory.
- He is sovereign. While this has come as shock to us and left our plans and dreams fragmented, He is not surprised by any of this. He has always known the intimate details of Shiloh’s life from the beginning of time. How comforting that is.
- He is faithful and unchanging.
- While we have no idea what birth and beyond look like for our family, we feel peace, the kind of peace that is beyond our understanding that only comes from our good Father. Which we are so incredibly thankful for.
- None of these things, which are so true, make this easy or erase the pain we feel. But we are thankful that we trust in our God who promises to never leave us or forsake us, who has walked this earth as a man and experienced pain and heartbreak, who is Alpha and Omega, Beginning and End.
Something else we’ve gotten to witness that has been incredibly sweet is Hadley and Paxton’s reaction to their understanding of all this. Trying to find the words to know how much to explain to them in an age appropriate way has been difficult. While they don’t know or understand all the details (which honestly we don’t either), they know that we’re praying for healing for her and that she keeps growing!
Paxton is already the sweetest big brother, he’s constantly pulling up my shirt to give his baby sister hugs and kisses or to sing to her. He hears our timers go off and knows it’s time to pray for Shiloh, most times he comes right over ready to pray for “Shisho.” His little heart is so tender and loving.
Hadley’s prayers for Shiloh feel so powerful and meaningful. Listening to her pray I feel what it talks about in the Bible as “the faith of a child.” Her understanding of God is so pure and trusting, we are amazed that we have the privilege of watching her relationship with Jesus grow.
Love, the Linns