Sage advice

Abby and I have been giving out a lot of advice lately, both to parents at the hospital and to parents that we have met through short bowel groups. Advice ranging from how we have handled the hospital and second opinions to this morning's advice via email about what to do when you think that you have a central line infection when your baby is on Omegaven ,a factor which makes things different than if your baby is on traditional lipids.

It is odd to us to give out this kind of advice since we are still so new to this process. But I guess that everyone is new to this when their baby is sick so we have become old timers somehow.

We preface everything by saying that we don't know the right way to do things, but here is what worked for us. I guess that we can still talk about it and smile makes people think that it must be a good idea. This preface was especially important as we collaborated on an email this morning about line infections.

I am going to start writing down some of the advice that we have given out. Since folks from all over are reading this, some of it might be worth something to someone, I guess.

Advice Number One: Nurses Make the World go 'Round- Some doctors may think that they are the top of the heap but for parents with a kid in the hospital, the nurses hold the keys to the castle. They are kind, caring people who have an extra large maternal section in their make-ups. They will love your kid like it is their own. You will get to know them and know about their families if you have to stay for a long time.

Although Ellie's doctor may disagree, the hospital staff don't work for you, but work with you to help your baby get better. Treating them like co-workers instead of servants has been a good approach for us and simple manners go far.

Please, thank you, if you have a second could you... these are all good places to start. They are doing stuff for you and your baby, let them know that you appreciate it every now and then.

I learned this on the first night in Boston when we shared a room with a mother who took a decidely different approach. When she needed something from the nurse, she would hit the intercom button and scream a demand into it. No please, no thank you, just demands.

I knew right then that that wasn't the right approach for us.

The upside is that the nurses won't cringe when they need to visit you and, even though they have to do their jobs no matter what, your baby may get better treatment if the nurses like to come and see you and your baby.