Tuesday, August 24, 2010

NICU and dealing with the medical community tips from my perpective

So yesterday morning I was thinking of tips for parents that find themselves with NICU (Neonatal Intensive Care Unit) world.  This is not a place I wish on anyone but if you are there here are some quick thoughts from my perspective.  And remember I had a full term, rare syndrome, respiratory compromised baby.

A lot of this can apply to all sorts of situations in dealing with the medical community.

Please know that I have had very good nurses, doctors and therapists.  There are good and not so good ones out there as there is with most things.

-2. Communication - People would call me that I knew and some that I didn't know and they wanted to offer help or just to talk and I really didn't want to talk to people.  It was just too much, and I am an extrovert.  There are people I just didn't call back, and that is okay.  I also had my parents or husband call people or being in charge of updating family members so I didn't have to talk to as many people.  Also a great thing to do is to get a blog, Care Page, Caring Bridge page or something similar so you can post updates and progress.  People love and care about you and your family and want to know and pray for you so this is a way to help do that.  Also, allow comments, it can pick you up (even if it make you cry, again) to know about all the people that care.

-1.  Don't be afraid to cry or show your emotions whether in the NICU (we all understand) or in private.  Get it out, grieve the loss of those things that you wanted to and thought would happen when your baby was born.  It is good for you all the way around.  This can be hard.

0.  Touch and Kangaroo care - ask to be able to hold your baby and do kangaroo care as soon as it is possible.  Since I had a term baby, kangaroo care wasn't really mentioned and I wish it was. 

1.  Read your kids chart... you can find out some great info and keep up on what the doctors think.  If you can't read it ask a nurse or the doctor to come and interpret for you (you will be able to read them fairly well by the end of your stay.)

2.  Ask, ask, ask questions.  There are not stupid questions.  You may need to hear things over or clarified.  You are probably in a state of shock, stress, ect... your brain can't process it all at once usually.

3.  If a doctor, specialist is coming to see your baby and you can't be there (maybe becuase they are coming at 6 am!)  ask the nurse to have them call you after their exam.  Or leave a note on your baby's bed to have them call you.  They have done this for me and it is a great help to hear it from the doctor directly and ask them questions directly.

4.  If you want something a certain way or to make sure tubes are laying a certain way and it just isn't happending.  Tape notes around the areas you are concerned about.

5.  Don't be afraid to ask doctors, nurses, therapists, anyone who comes near your baby if they have washed their hands and ask them to go wash if they haven't.  Usually just asking prompts them to wash if they haven't.

6.  Pump your milk... mom's this is something concrete you can do for your baby.  Most NICU's have lactation consultants and the one I was in had a pumping room or you could pump at your baby's bedside.  This can be quite a chore but is well worth it.  Breastmilk is best.  Even formula cans say that they are the next best thing to breast milk.  Also, this can be a time to get away, call on the phone, or just have a moment to yourself.

7.  Trust your instincts, if you don't think something is right then ask questions to understand, bring it to the attention of the nurses (who can really get things done for you).

8.  Nurses - find nurses you like and trust and ask them to be primary nurses for you.  Getting to know your nurse for the day or night and having a relationship with them is a great way to make sure your baby is getting the best care.  Nurses can be great or so so, work on making sure you get great ones.

9.  You can say no to things, you can said wait I want to think about this or research thing.  There are things that need to be done immediately and can't wait and just have to be done yes I know.  But there are many things that you can take a little time to think about.

10.  Nutritionists and dietitians - I have not had good relationships with them as a mom wanting only breastmilk and no additives and then feeding my tube fed baby a blenderized diet made up of all real foods.  Push them to give you clear evidence that what you are doing is not working.  Check their math or get someone who is good at statistics to check their math.  They are many times not quite right with their math and that can lead to decision you don't want.

11.  In general you have to be an advocate for your child... I know you may hear this a lot, however, the doctors and dietitians are dealing with a lot of patients and their first suggestions and courses of action are usually the generalized ones.  Your child is different and unique so you need to make sure they are aware.  Don't assume they know everything in your child's file or even the obvious stuff.  Don't be shy to remind them, remember this is your child's well-being at stake.

Okay well that's all (as if it wasn't a ton) I have for now.

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