Well today at the hospital Matt and Aubrey took a little nap together… Aubrey loves her swing. We are still waiting to be able to do this at home. We did get Aubrey’s equipment today so we are ready for her to come home. Also the Great Strides walk is coming up and if you would like to donate you can pick anyone on the list on to the right and thank you all in advance.
Well they got her up to “full feeds” but she didn’t like it very much her belly was too full. Aubrey had the squirts and threw up a couple times but now she is doing better because they are turning the feeds off and letting her actually digest her food which is now breast milk. She isn’t having the squirts like she was but her butt is really red and irritated… partly because of the enzymes that they are giving her but it should get better now that she isn’t going at least once an hour. We hope that she keeps up the good work so we can get the heck out of there.
The last few days Aubrey has been in her own private room and doing well. It only took one day for her to become the favorite on the floor, I know its hard to believe. Today she will be off her IV fluids and getting all nutrion from her formula/milk. They have been aggressive with upping her feeds to full volume and she seems to be tolerating it well. Not much else to say. The picture below is Aubrey chill’n in her swing from her aunt Dannelle.
Well yesterday Aubrey started to suck her thumb for real… not just sucking on her fist so that was fun. Today she had her hearing screen and she passed…. Gold Star for Aubrey. Then the really big news is that Aubrey is a big girl now she is in her own room. We don’t like the idea of her being alone but she is right across from the nurse station so that is nice. We talked to one of the lung doctors and he pretty much said that there are too many cooks in the kitchen and that is why we moved… that and Aubrey doesn’t need to be in the NICU anymore. This way they have control over what happens and there aren’t 5 people who have to agree on what they want to do. She is going up 2cc’s every 8 hours and if she does good with that then they will do 3cc’s every 8 hours. Once she is up to about 21-23cc’s they can get her off the IV fluids because it is close enough to full feeds for her. Then when they get her to around 30cc’s an hour they will go half breast milk and half formula until she is just on breast milk and enzymes. They have given the okay for bottles so they are going to start that today. We got a time frame from the lung doc but I think we will keep that hush hush for now don’t want to get hopes totally up. Tomorrow we will set up Aubrey’s swing that her Aunt Dannelle got for her so she has something to do in her big girl room.
Well Aubrey had a good day yesterday she pooped 2 times and had a “smear” so today they raised her feeds to 2cc’s an hour. We asked what full feeds for her would be and they said somewhere around 55cc’s to 60cc’s over 2-3 hours. So right now she is about 1/10th of what she needs to be. The nurse said that usually what they do it get her up to the 60cc’s in three hours then work up to where they take the 60cc’s and give it over 2 hours then give her a break without food for an hour then they work up to giving the 60cc’s in one hour and she gets a 2 hour break without food. So that is the plan for her she has been very happy the last couple days with the food… much more awake.
Well they started Aubrey on a 1cc feed on Friday and today she pooped twice!! It’s not much of a feed but it is a start and it’s working so we are happy. She was going to get some of her stitches removed tonight whenever the resident on call made it over there so she is healing up nice. Aubrey’s grandma has been in town for the week and she has been holding her all week…. Aubrey has her fooled because grandma doesn’t think that she fusses very much. They had a problem putting her picc in so it’s not quite where it needs to be but they are going to leave it and pull out the double picc. Aubrey’s Great Aunt Pat and Great Uncle Denny and Great Aunt Barb and Great Uncle Bob donated to Great Strides but when I put the money in it doesn’t show because I made the donation to myself so I want to give them props and a big thanks. Also thank you to everyone that has been there for us the past couple months it’s great to know that we have people who care and thank you to everyone again for your donations to Great Strides. If you haven’t donated and would like to you have a little under a month to donate and the link is on the right hand side of the page just click on who you want to donate to.
Just an update for everyone… Aubrey has pooped with no detour outside of the body so that is good news. They have her belly tube off suction and it’s making it’s way out the other end. The doctors were talking about feeding her on Friday so we will see… she dreams about food… at least it seems that way with her licking her lips. That is the news that we have for now I would put some pics up but I don’t know how on this computer.
As some of you have requested here are some photos. Not much to say from the other day. She is doing well with her pain, no increase on the drugs and only one extra dose in 48hrs. Today she was moved back into an open air crib, so she gets her mobile and bouncy chair back that she loves so much. Her pain level appeared to be pretty low today, so Carrie and I decided to hold her. Now we just continue to wait, as most of you know I have no patience. The first picture is Aubrey holding on to her doggy saying “Guys my belly hurts.” The second one is just Aubrey looking around trying to figure out why she is still in the hospital.
They did a scope of the lungs while Aubrey was in for surgery and it showed some parts that weren’t as open as they should be but with age that should get better. They got her put back together and now we are just waiting to see how it all goes. She is pretty much just sleeping but every once in a while she wakes up and stretches… then remembers it hurts and freaks out a little. She has opened her eyes to look around a little bit so that is good. Her belly was pretty big today when we went in but it’s going down and so is all the bloating from the fluids they gave her in surgery. Aubrey came off the vent this morning and is doing good… nice to hear her making noise already. She also has some belly sounds that are coming and going which is really good because we didn’t think there would be anything till the end of the week. She might have an allergy to the antibiotics that they are giving her they are going to watch her tonight when they give her another dose. It’s a wait and see game again.
We won’t know till later this week how everything is going to play out but Aubrey is all connected again. She isn’t on much for pain meds so by tomorrow she should be more awake. They are going to try to have her off the vent tomorrow morning. They are giving her some steroids to help the process which I have been waiting for them to say since her second surgery. So far things look good but we should know how things are going by Friday… meaning if things are working the way they need to be and all that fun stuff… and in case anyone was wondering she is still cute.Â
