what to expect when my 14mo DD comes home from the hospital?

[whoabethy]

Didn't know where to post, so please move if necessary.

DD was born at 35 weeks and was diagnosed with gross motor delays.  She gets OT/PT 3 days a week.  She has been hospitalized for a week due to RSV.  She has had no previous hospitalizations.  While in the hospital she was on bipap (for 3 days) and had a central line which made holding her very difficult.  We held her as much as the doctors/nurses allowed, but it was drastically less than she's normally held.  She was in respiratory distress, so essentially she's been laying down or being held for the past week.  She has not had much choice about the uncomfortable/painful things that have been happening to her body.

Before this illness she had just mastered standing and could take 2-3 steps.  She had about 10 words.  She had a bright and bubbly personality.  

We probably won't be released for 3-4 more days.  I know she is still recovering, but it seems like her little personality has changed.  She also has no interest in doing the gross motor taks that she had just mastered. 

Since she's off bipap now my partner and I spent most of the day holding her.  My plan is to wear her constantly and give her as many choices about her body as make sense.  

But my question is, what should I expect when we get back home?

[MotherWhimsey]

it just takes a bit to adjust back to home life. The hospital is traumatizing but they seem to get over it a lot faster than the parents do. My kid has been in the hospital a lot and he's done okay with it all. We just got out on Tuesday and by Tuesday night it was like we'd never been in. So they do bounce back but sometimes it can take a while. You also have to take into account that she probably feels like poop right now and that's probably contributing a lot to it. Just give her some time and try to make things as normal as possible.

[momtoalexsarah]

My DD has had a number of hospital stays (she is almost 5 now)  We have  a motto, two steps forward one back.  This is acutly plain to see when she has a seriose illness (RSV counts BTDT bought the shirt).  We spent 2 weeks in after she picked up an infection when she had a cleft palate repair done.  We lost 6 months worth of ground (she was almost 3 at the time).

I would certainly have an OT sent up to see your daughter - they will help you and her with sensory stuff that commonly happens with the hospital stays.  As soon as we are admitted I make sure that my DD's OT and SPL know that we are in and they try and come to see her (there offices are at the hospital so that makes it handy).

Best of luck and she will pick the stuff up again, it will just take a little time.  My DD was a 35 weeker as well - we had 3 rounds of RSV buy the time she was 18 months. 

[whoabethy]

thanks, momtolaexsarah. hazel was released after about a week in the PICU. her OT and PT came to visit us the day after she got released.  she was on bipap for half of her stay, so pointing and grunting was her means of communication.  her verbal skills definitely took a hit.  she uses words, but when she gets upset it's back to the grunt/whine/point.  she also needs a lot more, as far as touch and attention.  but honestly, i'm so glad to have her home i'd probably be wearing her anyway.  :)

my main goal is just to make sure she doesn't get sick in the next few weeks and we'll take it from there.

[hannahgrace]

We've had lots of hospitalizations (like 20). Usually my guys are just happy to be home so they are cuddly and just tired. They spend a lot of time catching up on sleep. Hospitals are terrible for sleep! I've actually never seen them regress in their skills AFTER they get over their sleep deprivation.