I've been trying to get Madi to understand she is not an only child all day today. Has not gone over so well. She has to learn how to sleep on her back and in her bassinet or crib. Have I ever mentioned the child only sleeps on mine or Ricky's chest? We are the only ones to blame, we know so you don't have to say it. She also is not use to crying. If she makes a sound she is picked up again, we know. So today she has learned how to calm herself. It has been noisy here :o)
Gracie is coming home!! The OCRG (sleep study) test will be done tonight, she had her Echo, and will have her car seat test after the OCRG. Looks like Wednesday or Thursday for her homecoming. She is on continuous 1/8 of oxygen. They will know if she can stay at that rate or need to go up for feeds. Oh and she can hear. I already knew that but we have the test to prove it. I'm keeping all of the proof for all the babies to use to my advantage in several years ;o) I'm so excited!! but it is very bittersweet because of Mr. Brody.
Talked to the doctor regarding moving Brody to TCH. She totally understood our concerns about careless errors. She would love for him to stay there because the group has a history with him but understands if we want to move him. She suggested that if anything is out of sorts when we are there to address it immediately instead of letting it build up then it being too late. I don't really have a problem with that. Every time I see something off I call it right away, you just have to in this situation. I'm not sure what we will decide to do. Now that Gracie is moving, the only ties we will have is Brody's primary nurses. This doctor seems to think we have another week and a half at least with him on the vent. I don't understand this since he is getting very little support but I'm no doctor. She only had him today and one of our favs will have him for the remainder of the week starting tomorrow. We shall see what he thinks. They did order him a bounce chair to help with development. I'm excited and scared since he is still intubaited.
It is going to be a crazy busy week.
We have to: train with OT regarding Gracie's range of motion, bottle feed, have home oxygen and apnea monitor delivered, have car seat installed, have medications filled and pick up (down town, bummer), Madi's ROP apt on Wednesday, Gracie's Pedi apt on Friday, and Madi's RSV shot on Friday too. Has anyone figured out how to clone us yet??? Oh and I forgot... Ricky's on call this week :o( BOOOOOOO!
Krista
(quote from Ashley Smith)
Monday, October 18, 2010
Oh, YES we do!
Brody is now 8 pounds!
I celebrate each ounce these babies gain. It is so amazing where they
are now and where they started. I will find out tomorrow if we are transferring him to Texas Children's Hospital. We have had some careless errors that have caused some set backs for him. Someone (no one knows who) let his tape come off and his vent tube went to far in his chest, this caused one lung to get too much oxygen (the other one could have collapsed) and when they finally realized it, the damage was done. They had to increase his oxygen from the upper 20s to mid 40s. This is a huge increase. It has taken him 48 hours to recover from something that was 100% preventable. It is extremely difficult for me to accept these errors. Our insurance has paid out over $7 million dollars to the hospital so the least they can do is make sure my babies are 100% safe at all times. We feel that since they have been there so long, they are not getting the best treatment/ not top priority. It is aggravating especially when Brody is working so hard to get better. He deserves better. Wish us luck because I'm sure the conversation isn't going to go over well.... just a feeling I have.
Gracie is on her way out the door. I took her car seat to the hospital today so when they order the car seat test its there. She has changed so much! Her hair is at least 2 inches long all over! She is just precious. Bottle feeding is going so well. She is finishing feeds within 15-20 minutes! That is awesome considering her paralyzed vocal cord. The other amazing news is her voice is starting to come back. It is a very soft voice but if you listen closely you can hear it. She is having an echocardiogram tomorrow and as far as I know, she will just need the sleep study and car seat test in order for her to come home.
Madi is having a lot of issues with reflux. I've had to suction her a couple of times. She hates it and so do I. Her apnea monitor has been going off a lot. She is breathing but not deep enough. Also, it seems to be worse when she is on her tummy because she gets to comfortable.
I know its really weird but I can't wait to get Gracie's car seat base installed next to Madi's Then we will just have Brody to bring home. The NICU is actually going to accommodate us (first time ever) and allow us to bring Madi for Gracie's discharge since we don't have anyone to watch Madi. Not that no one would but we aren't comfortable and others wouldn't be either with Madi's monitor and choking issues. Plus, we are a family and it should be a family event. This means Madi and Gracie will come along to bring Brody home too! Madi has her ROP appointment this week. I'm hoping this is the last one... fingers crossed.
I looked at some pictures of my dad today. I wish he were here. I can't imagine what he would think of these babies. It has been over 6 years and I still think about him daily and miss him so much. He always had crazy nick names for people. I wonder what he would call Brody, Gracie, and Madi ???
Hope everyone has a great week. It looks like this will be a wonderful week for us. It would be the sprinkles on the cake if we find out about Ricky's job ;o)
Krista
I celebrate each ounce these babies gain. It is so amazing where they
are now and where they started. I will find out tomorrow if we are transferring him to Texas Children's Hospital. We have had some careless errors that have caused some set backs for him. Someone (no one knows who) let his tape come off and his vent tube went to far in his chest, this caused one lung to get too much oxygen (the other one could have collapsed) and when they finally realized it, the damage was done. They had to increase his oxygen from the upper 20s to mid 40s. This is a huge increase. It has taken him 48 hours to recover from something that was 100% preventable. It is extremely difficult for me to accept these errors. Our insurance has paid out over $7 million dollars to the hospital so the least they can do is make sure my babies are 100% safe at all times. We feel that since they have been there so long, they are not getting the best treatment/ not top priority. It is aggravating especially when Brody is working so hard to get better. He deserves better. Wish us luck because I'm sure the conversation isn't going to go over well.... just a feeling I have.
Gracie is on her way out the door. I took her car seat to the hospital today so when they order the car seat test its there. She has changed so much! Her hair is at least 2 inches long all over! She is just precious. Bottle feeding is going so well. She is finishing feeds within 15-20 minutes! That is awesome considering her paralyzed vocal cord. The other amazing news is her voice is starting to come back. It is a very soft voice but if you listen closely you can hear it. She is having an echocardiogram tomorrow and as far as I know, she will just need the sleep study and car seat test in order for her to come home.
Madi is having a lot of issues with reflux. I've had to suction her a couple of times. She hates it and so do I. Her apnea monitor has been going off a lot. She is breathing but not deep enough. Also, it seems to be worse when she is on her tummy because she gets to comfortable.
I know its really weird but I can't wait to get Gracie's car seat base installed next to Madi's Then we will just have Brody to bring home. The NICU is actually going to accommodate us (first time ever) and allow us to bring Madi for Gracie's discharge since we don't have anyone to watch Madi. Not that no one would but we aren't comfortable and others wouldn't be either with Madi's monitor and choking issues. Plus, we are a family and it should be a family event. This means Madi and Gracie will come along to bring Brody home too! Madi has her ROP appointment this week. I'm hoping this is the last one... fingers crossed.
I looked at some pictures of my dad today. I wish he were here. I can't imagine what he would think of these babies. It has been over 6 years and I still think about him daily and miss him so much. He always had crazy nick names for people. I wonder what he would call Brody, Gracie, and Madi ???
Hope everyone has a great week. It looks like this will be a wonderful week for us. It would be the sprinkles on the cake if we find out about Ricky's job ;o)
Krista
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