16 weeks 2 days

Hello,

Sorry I don’t have any new pictures today. Emily is sleeping a lot now and when she is not I am trying to encourage her to do so.

Anyway, Emily has been doing well. She had the speech therapist come and see her again on Monday. The therapist still thinks that Emily should not be bottle feeding. Which to us is a great surprise since Emily took 2 full bottles yesterday (60 ml or 2 oz.)!! There are clearly times when Emily wants to eat from a bottle. However with the speech therapist recommendations we are scared that someone will come in and demand that Emily stop taking anything from a bottle. We have been assured that will not happen. However just to be on the safe side I have requested a family meeting to discuss this and to get everyone on the same page.

Emily was seen by the Physical therapist yesterday. She did really well and the physical therapist was impressed with Emily and what she was not only tolerating but doing. It actually turned out to be a real session! (Emily doesn’t do well with new people normally.) The therapist said that Emily’s muscles are a bit tight, and that she was concerned with Emily’s sensory defeniveness in her feet (she doesn’t like her feet to be touched). I don’t think that is that big of a surprise though since they have been drawing blood from her feet for the last 3 months!! She did say that Emily can be on her belly and suggested that we roll up a blanket and put it under her lengthwise to help her get some feeling on her limbs.

Other then that not much has changed. She is on a flow rate of 2 liters per minute. Her O2 requirements have been around 50-60%. She is now being demanding when wanting to be held. She is pooing all the time so she has a diaper rash. Last night she was fussing right before her bath. Then we heard a noise and this awful smell, I mean awful smell came from her. Her diaper was full!

We haven’t heard anything about when we can spring her from the hospital. We were told early on that they normally only keep babies there till a month past their due date and if they need anything beyond that then they will send them to the children’s hospital. This is yet another reason why we need the family meeting. We feel that Emily’s issues now are not that bad (compared to where she was). Also I seem to be doing a lot of her care now (yesterday I even suctioned her nose all by myself!), which I like doing but I think it makes it more frustrating that I have to drive an hour to take care of my child. Hopefully Emily will turn yet another corner soon so we can bring her home!

One last thing, Emily does have her going home outfit now. You will have to wait to see her in it to though to see what she got. Also we have made a ton of new friends in the last year. If any of you want to be included on our Christmas Card list please email us at inactive and we will put you on the list. We may not send out the cards till after Christmas this year but they will be sent out!

Have a happy Thanksgiving!
Jennifer