It is hard to believe I have not written even just an update in almost four months.  There have been so many things I have wanted to write…words to share that God has revealed or just funny stories to tell, but I would never write because I felt so guilty for not sending just a basic update on the babies.  There’s nothing more motivating, however, than a need for prayer, so I will write that update now.  Hopefully, this will free me to write regularly going forward, which was my desire when I started this blog last summer.

Titus is thriving in all areas.  He is doing well with his “catch up growth” and has crossed the 18 lb mark…quite an accomplishment considering he was only 3 lbs at birth.  He smiles, laughs, “jumps,” plays with toys, rolls all around the floor, demands attention and bottles, and does everything a baby his (adjusted) age should do.  His last ultrasound did show an increase in his ventricles, which concerned his neurosurgeon, but because Titus is not symptomatic, he has been given some time to prove whether anything needs to be done about this (a shunt).  We have felt the fact that he has not been shunted is his own miracle and are not about to let go of that, so we are praying that his repeat scan in a few weeks will show a decrease in his ventricle size.

Tess has settled down so much.  The fussy, crying baby who had so much trouble feeding when she came home in September is now a sweet, mostly content little girl who often drinks her bottle faster than her brother who is too distracted to eat!  She is up to 15 lbs, more than double her weight when we met her in August.  She struggles with very itchy eczema, the cause of which we have yet to identify.  She has made some small developmental gains such as learning to put her pacifier in and grabbing her foot, but she remains very delayed in most areas.

We have anxiously awaited her follow-up opthalmology appointment, which she had today.  We had taken her in December with great concern about whether she could see at all.  The doctor thought she had DVM (Delayed Visual Maturation), which he expected to resolve within three months.  Unfortunately, at her follow-up today, all indications are that Tess is still not seeing anything.  We had thought that we were seeing some improvement in her vision and tracking, but apparently, we were mistaken.  Perhaps she has just gotten more responsive to sound.  Her ROP (Retinopathy of Prematurity) is not the cause of this; it is likely neurological, due to her brain bleed.  The eyes themselves appear to function just fine, but there is a disconnect between them and her brain.  The question now is whether it is permanent.

The next step is to perform a test called a VEP (Visually Evoked Potential).  It is a 2-hour test that will take place next Thursday afternoon (February 20).  The test will measure her potential for vision and allow the doctor to predict whether Tess will ever see.  Best case, it will show lots of potential, which would indicate her vision is still just delayed.  Worst case, it will show no potential, which if replicated in future tests, would indicate permanent blindness.

We knew this was a possible outcome of her brain bleed, but of course, we greatly desire for Tess to see.  We seek fervent prayer on her behalf, especially over the next week as we wait for the test, but long-term as well, as her vision (hopefully) develops.  We know that God is more than able to intervene in this situation, regardless of what next week’s test indicates.  We also know He works ALL things together for good.  Whichever path will glorify Him in Tess’s life is the path we will willingly walk.  For now, however, we ask you to join us in seeking God for a miracle for Tess’s vision.  Our God has shown repeatedly that He loves to make the blind see.  He is able.

“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”  (Ephesians 3:20-21)