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Thursday, March 17, 2011

Baby Joey: 9 days old

Just wanted to post a quick update and ask a few questions, hoping for suggestions:)

We have decided to go with the nickname Joey:)

So far he is doing good.  Some wounds have healed; others have gotten worse.  Mainly his knees, his hands, one ankle and one wrist.  His bottom was really bad but is starting to look better! 

He sleeps about 2-3 hours stretches (more during the day then at night).  He is eating well too (22 oz in the past 24 hrs) up from 18 oz the day before.  But getting him to start eating at each feeding is a S-T-R-U-G-G-L-E.  He cries so much and almost nothing we do can calm him down.  We have tried Tylenol ( we don't want to do anything stronger yet), he is on lactose free formula as all the other kids (and me) are lactose intolerant,  and Zantac for reflux but nothing seems to help.  He just screams and screams, then eventually starts to drink and sucks the bottle right now and usually is out cold afterward, but sometimes will scream for a while after he is done.  I am very worried about all the damage he is doing to his airway.  His voice is horse at times (but not all the time) so I know he has some blisters/irritation on his vocal cords.  His breathing seems normal.  He does breath heavy/fast at times, but no stridors and he doesn't appear to be retracting with his lungs when he does breath.  He does sound gurglly at times, but I remember Grace doing the same thing and the doctor said it was normal for preemies.   So I really don't know.  I though about changing to the formula that is already somewhat broken down so its easier for him to digest but I am not sure if its the right thing to do. 

Our doctor knows nothing of EB besides what we have told her.  But she is willing to see him and treat him as a 'normal' baby as long as we handle the EB stuff as much as possible.  Which we are fine with.  But times like these...its hard to tell if its EB related or normal EB stuff.  She thinks it could be normal baby issues or EB issues.  So in other words, really no help.

We weighted him today and he was btw 7-8 pounds:)  He goes in Tuesday for his 2 week checkup.  So hopefully he has gained so weight. 

I am working on a post about this birth story which is almost done:)

I plan to update frequently so check back often or just hit the follow this blog button up at the top left of the screen and if you follow other Google blogs, you'll see updates when I post them in your 'following blog list.'

We have help for the next 4-5 weeks, so it will be a little easier to update.  Plus i find blogging therapeutic so its good for me to blog:)


Here are some pictures of the girls holding Joey.




1 comment:

  1. Hi Sara: What a beautiful family you have. I sure hope the feeding gets a little easier. You guys are always in my prayers.
    Hang in there my friend, you are doing an amazing job. Love and Hugs Leah's Nana

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