Day 47 - Unclothed

Today is day 47 of Joshua's life which leaves just 59 days until Christmas and his hopeful homecoming and also leaves just 33 days until his surgery! The days sure are whittling away, slowly but surely! I took a picture of Joshua unclothed, just to sort of record how he looked all hooked up to everything. Someday I know I'll want to see it again and to show him what it was like. It's not pretty. But I like to think of it as signs that he's healing and getting better, rather than signs of how sick he is.

Joshua is mainly just working on gaining weight at this point. All parts are functioning as well as the Dr's expect them to, they just want him to stay healthy and gain weight until surgery day. He's up to about 10 pounds 8 ounces now. He's taking 2 bottles of 8 ml each per day. Sometimes I can substitute one bottle for about 5 minutes of breastfeeding. We've had one really successful nursing session and 2 not so successful ones. He loves the bottles and the one time he successfully nursed. The speech and occupational therapists (two really nice and sweet girls) are very impressed with how well he does with the feedings. He definitely hasn't lost the know how when it comes to eating! These are all wonderful things that will help the healing process after the next surgery, go much smoother and quicker. Another thing to be grateful for!!

He got a bigger crib. His nurse said he was way too big for that tiny little bed!! So he got a new one and he has a bin full of little toys, a mobile, a swing, a bouncy seat, some books (ours from home), a big mirror to admire himself in and several paci's!! He's got quite the loot going on!!


He's working on social smiling, maintaining eye contact and head control. He's moving along well in those areas and is very alert and attentive. He does not like to be assessed by the nurses every 4 hours (who would!) and lets everyone know of it!! He likes his swing and sitting up in my lap. He likes to see his world!! He has been staring at his mobile a lot lately. I guess these are all normal baby activities, but in these situations, everyone wants to be sure they don't get "delayed" or whatever, so they're always talking about it.

Yesterday someone brought by a little orange onesie that said "This is my costume" and left it in our room. We weren't sure who it came from, but we found out that whoever it was from had brought one to all the babies. We also received a hand knitted little blankie the other day. These are so nice, but it reminds me of how we are now the ones people feel bad enough about to donate their time and money for. You know what I mean? It's very easy to sort of forget how sad this situation kind of is for us because it's just our life and we're living it, but if someone mentioned this story to me about someone they knew, I'd feel terrible for the family and if they asked me to donate something, I'd do it in a heartbeat. You know? It's sort of hard to explain, but it's just hard being the ones that are the recipients of peoples kindness and generosity during bad times. I don't want to be in such a situation like that. But nonetheless, I am and I am grateful for the kindness and generosity of so many people.

There are lots of babies there that are much sicker and have far worse prognosises than we do. Nearly everyday we hear the alarm of a baby who's in dire need. It's this horrible loud alarm and they announce the location of the baby so the response team can respond. I hate that time. I tear up nearly every time and instantly pray as hard as I can for that baby. This is the place where all the really sick babies born at all of the hospitals in Cincinnati come. There are happy stories of recovery and there are sad stories of never leaving this hospital. It's really hard being there and witnessing all this. I'm just so grateful that we're just passing through. It seems like forever, but our stay will end and we'll go home and begin our life as a family of 5 very soon. I can't wait. But I just ask everyone to pray for all these babies. They all need it.

Well I'll leave with a picture of my baby after I dressed him. His outfit says Whooo's A Cutie? I am!! He definitely is!!