Preliminary Diagnosis, Continued Prayer

Our little Brinley is not yet 3 days old and has already been through so much. She's beautiful and wonderful and it's harder to leave her each day. Thank you all again for your prayers! They are necessary and effective.

Sarah and I got some good sleep on Thursday night, called around 5AM to check on our baby (she had a good night) and headed over to the hospital around 10:30. We met with the Doctors and nurses and got an update on her status and the plan for the day. She already looks much better than day 1 as a lot of her puffiness from the delivery has gone down. Her breathing and feeding tubes are still in of course and they actually started feeding her about 1PM yesterday for the first time. She's getting just a small amount to start and it will be mommy's milk as long as we can supply it. That part is going very well now after Sarah was able to meet with the lactation consultant who was so very helpful.

The geneticist came over to see her in the early afternoon and examined her then went off to do a little research on her findings. She, along with the ENT specialist, were able to come up with a preliminary working diagnosis for Brinley. It's not positive but seems to fit very well so far and is called Oral Facial Digital Syndrome. They still need to do an MRI to check her brain and they will still be looking for overlapping conditions but it is good at least to have a starting point.

The other major thing needing to be done aside from the MRI is the examination of her mouth and trachea and the airway. It needs to be done in a very controlled setting so is waiting on when the ENT specialist can be in to do it, no later than Thursday but hopefully much sooner. Her eyes also still need to be checked.

We got a call last night about 2AM that she may have an infection so they are doing blood-work and have started her on antibiotics. Pray that her immune system would stay strong and that the infection would be gone or come back negative. I'll be heading over to Albany Med shortly to be with her and talk to the doctors while Sarah is at home with the girls. She'll be going over later today. Pray for continued grace and strength for us through this. God has been so faithful and we are feeling so blessed by all the support around us.