Quick Update

Earlier this week I was told Lucian's Grade 1 brain hemorrhage was resolving. If you have a perplexed look on your face right now, a sort of - did I miss something expression, then you look like I did when I heard the news. What hemorrhage? Apparently during the first and second weeks of life brain scans are done and then again at some point during the first month. The second scan showed that he had a grade 1 hemorrhage. They are graded from 1 through 4, 1 being the least severe. Not being informed of this, on a scale of 1 to 10 rates at about a 15 for us. We expect to know what tests they are having and what the results are, particularly when the results are of consequence. Over the weekend they "ran out" of breastmilk, after I asked EVERY day how the supply was and was told there was plenty. Instead of calling (1) when they were getting low, (2) when they were using the last bag or (3) before giving formula - they just gave formula as if it wasn't going to be a big deal. Lucian's septum is not improving and they're now telling us we will meet with the plastic surgeon to discuss the surgery he will have to have before coming home. We were completely at our breaking point after not being informed about the hemorrhage so I spoke with the social worker for about 40 minutes and we had a meeting with her, the attending doctor and nurse manager a few days later. We discussed what we find to be unaceptable along with our expectations, especially in terms of being informed.

In addition to all of that we just found out Lucian has a hernia and needs a stitch, they'll stich the other side as well to be on the safe side. Emma-Sky was thought to have infection again and had to have another spinal tap along with urine and blood tests. They stopped her feedings again because of this and she's still having issues passing stool. All the cultures came back negative and she's now back up to 3.5 ccs of breastmilk along with IV fluids until she's up to a full feeding. Lucian's up to 21 ccs. Some good news - Emma's been on just nasal canulla and Lucian joined her tonight! They've both been around 2 lbs 9/10bounces these past few days. I've been able to hold them a handful of times since I last wrote and Adam has too.

We want them home so badly... it's hard to put into words what it's like but we're trying to remain strong and have faith that everything will be okay.