Rooming In

This was sent out before we knew she was coming home on this day. Her being discharged was the best Mother's Day present I could have ever asked for!

From May 9th (Mother's Day)...

We spent the night "rooming in" at the hospital last night. Basically, we used the hospital like a hotel, had Emily in our room, and had minimal assistance from the nurses. This is an important step in bringing her home. It shows the hospital that we can handle her care without much (if any) asssistance from them. In fact, the only time we needed anything was when we needed Emily's nurse to bring us more breastmilk from the refridgerator. We are still feeding her breast milk, but it has to be thickened by adding Simply Thick, and also we are adding some calories to it increase her caloric intake without increasing the volume of milk. So there is a little bit of formula powder we are adding to the milk.

She is also on Reglan and Zantac, which both appear to be working. We want to minimize the amount of time she is on Reglan because long-term (3+ months) and high dose usage (she's on the lowest dose possible) has been associated with Tardive Dyskinesia, a condition that causes repetitive involuntary facial tics and uncontrolled movements of the limbs. The condition is irreversible and there is no current cure. Obviously we don't want to trade reflux for Tardive Dyskinesia... that's not an acceptable trade-off. The pharmacist that filled her prescriptions yesterday told us that he would try to Emily off of the Reglan as soon as possible. Reglan speeds stomach emptying and supposedly works really well, but the side effects are severe. This will be something we are going to ask our Pediatrician about when we have our first appointment with her. Depending on several circumstances, we may discontinue the use of Reglan on our own if we feel Emily is doing well enough that she does not need that drug. Or perhaps something else could be prescribed. Difficult decisions lie ahead.

Still no "official" discharge date... although it appears all signs are pointing towards either today or tomorrow. We still don't want to get our hopes up, so we alway assume "Tomorrow", because "tomorrow never comes"... So everyday we wake up and say "Maybe tomorrow..." knowing it could be today. But when we go back this afternoon, we're going to make a strong case to the attending physician that we can take her home today, and nothing else will be accomplished in another 24 hours in the hospital. There really isn't much they can do for her at this point other than monitor her. Her nurse last night told us that there wasn't any point in keeping Emily here any longer and that she should go home with us. We'll see how it goes...

(This was taken right after we found out she was being discharged.You can see me holding my Mother's Day present from her.)