Scarlett June: July 22, 2012

Going in to see Scarlett today was wonderful. I am getting use to this new schedule and anticipate when it is time to go see her again. 

The phenobarb to help with the seizures made Scarlett so sleepy today since they had to start her off with a high dose, but it was so nice to see her relaxing peacefully and hopefully her little body is getting a better chance of recovering. 

Dr Simmons talked to me about removing Scarlett's breathing tube in a few day, but first giving her a few doses of steroids to reduce any inflammation she may have in her airway. 

Her feedings are up to 12cc's and they are upping them 1cc every 3 hours. The residual (the amount they pull out of her stomach a few hours after feedings to see if she's digesting it) is remaining low.

We should know soon what the results are for the microarray test. I don't know how to prepare myself for the new we may hear except to keep praying that we'll remain strong. I want to believe that even though she has all these problems, she'll be a perfectly normal child, but the more and more we dig into her problems, the less hope we get. But I don't want to give up hope completely. Where would we be if we didn't have         hope? Jon and I have prayed so many times that we'll remain strong, that we'll be accepting of the Lord's will and that if it be His will, that she can overcome some of these hardships. Whatever lies ahead for the future, Jon and I feel we'll be okay- no matter what happens.

Last night, before we left the hospital, the nurse whispered under her breath that the nurses in the NICU wanted our other children to see Scarlett, but since children are not allowed in there, they would have to sneak them in. It felt like we were little rebels.

Tonight, we let the kids pass through he NICU doors, wash their hands and quietly walk towards Scarlett's bed. It was so amazing to see our children interact with her. They were so curious to see what their little sister looked like in person instead of in pictures. She was real. They touched her hand and felt her soft dark hair and stared at her for the whole 5 minutes they were allowed in there. 

That night as we sat and asked our children what they were grateful for that day, they each said they were grateful they could see Scarlett.

We don't know when our children will be able to see her again, but I was so thankful they let them see her even if was was for just a few minutes and against the rules.