Leah is 3 days old, and such a joy to our family! However, things with her have definitely been up, and then followed by many downs. She’s made progress, only to have new symptoms arise, or to fall back behind on the progress she’s made. She is in need of continuous prayer still, as her life truly hangs in the balance, depending upon what her brain will and won’t be able to do for her tiny body.
Her MRI results came back, and we only have gotten a very preliminary update on her brain. It has been diagnosed as having ALOBAR Holoprosencephaly, which unfortunately is the MOST SEVERE of the different types. Here’s a medical definition for those who are interested:
Alobar (most severe)--where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).
We have not yet gotten any explanation of what our expectations for Leah’s survival should be based upon this diagnosis. From a few internet searches, it seems that we might get a bit more time, and by God’s hand could even surpass that…we’ll just have to wait and see what things her body can handle, and what things just won’t be able to function properly.
Our emotions are truly at both ends of the spectrum right now. We are so saddened to hear the severity of her brain malformation finally diagnosed, yet at the same time truly feeling that this is our "best case scenario still". A scenario that brings us much joy, as we’ve gotten time to love Leah. The reality of getting to care for a baby with very special needs is something we’d found ourselves actually hoping to have the opportunity to do, as we processed everything these past few months. Compared to not having her with us, we’re thrilled to care for her needs, whatever they might be, for as long as God allows.
Our current prayer requests are that we could bring her home soon, and have the chance to love her around the clock. As trying to make it up to the NICU has already proven to be a very hard task for a mom recovering from delivery, and a dad who’s trying to make sure that mom gets some rest in between a vigorous breast pumping schedule. However, compared to our expectations, the joy of being able to feed our daughter is worth the slightest inconvenience. Kyla is the most anxious to have Leah come home so she can get more than a mere glance at her new baby sister.
Leah’s body temps have been hard for her to regulate once again, and her blood sugars are not staying high enough without help from her IV, which was removed this morning. She's also been having more seizures even with the anti-seizure medication. All of these things would prevent her from coming home any time soon.

We are also in need of much rest, both physically and emotionally.
Thank you all for your continued prayers and support. I know I won’t ever be able to write the "Thank You Cards" for all the flowers, gifts, meals and financial assistance at Leah’s WaMu Benevolence account. Which is hard for me, since I’ve always been the Thank You Card queen, with a record turn around time of 1 day upon receiving a gift. It’s always been that way, since I feel so appreciative whenever someone is generous.
We are looking to the Lord to continue to provide abundant blessings to our family. We truly feel that Leah’s life is the biggest blessing yet, along with the bittersweet reality that she is one very sick little girl.
We are overwhelmed with the love from all of you, who have yet to be able to meet her or hold her yet. But your love is so present and obvious from your messages and postings. We’ve read each and every one and are so encouraged by how our little Leah is impacting your life in a positive way!