I wanted to get by here yesterday and post an update... BUT, I didn't leave the hospital last night until about 10 pm and when I arrived home, we were without power. There was a "wind storm" moving through our area and knocked our power out. The block before and the block after us had power... GRR.. So, we were without power all night and this morning when I awoke, still no power. We have a septic system and well water so when we don't have power, we don't have water either. *Sigh* So, I had enough water to brush my teeth and wash my face. LOL Let me get to what I wanted to post about..... Yesterday, we saw Dr. Dilustro, he said that Lily's fontanel is nice and soft, she still has small ridges vi sable. (So, she has filled in/up some) He had scheduled her CT scan for this morning. We also discussed the possibility of him taking her back to the OR for a third surgery on Friday. He said that he wanted to put the endoscope back in and see if the hole that he placed in the cyst is still there. I asked him if it were possible for him to put another hole in if he felt that it would be beneficial instead of shunting at this point. He agreed, he went on to say that he is in NO hurry to place a shunt at this time. She is acting like a "normal" newborn at this time and he'd like to continue to work on the cyst fenestration. His office is here at the hospital so he asked me to stop by the office when I got here so that we could discuss the results of her CT and what the next plan of action is. So..... This morning I got here early, came in and fed Ms. Lily and changed her and held her. When I tried to put her down she went into "melt down" mode. OOPS! So, I swaddled her snugly, held her super tight and rocked her. She eventually fell asleep. I went to Dr. Dilustro's office and was taken right back. He showed me Lily's first CT and the one from this morning. The first CT there was hardly any brain tissue where he had placed the drainage port during her first surgery. Today's CT revealed that the cyst is smaller, her ventricles are smaller AND there is now visible brain tissue where there was none before. He said that he has canceled her surgery that he scheduled and he wants to wait and see what happens. He can't see risking an infection and etc. just b/c he wants to see if the hole is still there. So, If she looks good tomorrow morning when he looks at her we should be able to go home! He said that we will be seeing him regularly. Probably about three (3) days a week. Eventually we will follow up with a Neurologist, early intervention, along with him. He said that he will probably follow her until she is about two or three. We still have a very long journey but... today things looked good. I am SO grateful!!!!! She may need future surgeries but right now he is waiting to see.
I'll post new photos tomorrow.