This is getting posted a little late because we stay pretty busy! We’ll work on another update as to where we are today to share in a little bit, but here’s some about the past week!
A lot has happened since we last updated here, and honestly, to sum up everything that happened in the last week is probably impossible. We’ve felt times of extreme hope and times of deep sorrow. We’ve been humbled again and again by the generosity of those around us and the huge amount of support that we have and prayers that people are praying for Shiloh.
Shiloh is still stable. She’s such a little warrior with the sweetest temperament. She loves being snuggled and fed (via her ng tube), and if she’s got those two things, she’s a happy girl! Pretty much the only time she’s fussy is right before it’s time to eat, who can blame her?
On Monday (11/2), Shiloh went for an ambulance ride to Arkansas Children’s in Springdale for an MRI. This basically showed what we already knew about her brain, she has Semi-lobar Holoprosencephaly, this isn’t the most severe form, or the least severe. We talked with a neonatologist about it at Washington Regional but haven’t had the chance to meet with neurology yet, hopefully that will happen today. We’ve also learned that she has Diabetes Insipidus. A pretty uncommon diagnosis, but very common in children born with Holoprosencephaly. Essentially, her pituitary gland is much smaller than normal and her body isn’t able to process sodium like it should, leaving her with dangerously high levels and in a constant state of dehydration. This diagnosis is the biggest reason that we decided to transfer to Children’s in Little Rock, where there is a pediatric endocrinologist who will help us figure out what medication and dosage Shiloh needs to manage her sodium levels.
On Tuesday (11/3, her original induction date!) Shiloh was transferred to Arkansas Children’s hospital in Little Rock, she got to take a helicopter ride with Angel One. Before she left she got to briefly see her grandparents (from inside the incubator), what a blessing that the hospital set that up for us in the time of Covid and very strict visitor policies (ie. no visitors). We are so thankful for our time with the team at the Washington Regional NICU, they’re incredible.
Shiloh arrived safely in Little Rock and is set up in their NICU now. Zachery and I are down here too spending all day visiting our girl. Hospital policies at Children’s are that only one parent can visit the child at a time, after a day of only one of us being with Shiloh at a time, someone (still a little unclear who) set it up that Zachery has and exceptions card and we’re both allowed to be here together with Shiloh. We didn’t ask for this, or expect this, it was truly just God’s goodness helping hold us together. It’s really difficult leaving her at night, but we know she’s in wonderful hands here too.
As always, thank you all for continuing to hold us up in prayer!
Love, the Linns