Tuesday, February 22, 2011

What can you do? How to help a NICU family....

I recently learned that a distant family member delivered a beautiful baby girl at just 25 weeks.  While it is not my place to disclose any of their information, I have been asked to write a blog post to give advice on how to "help" a family in the NICU. 

Please note:  These are just my personal opinions and suggestions.  I spent over three months riding the NICU roller coaster so I feel just as qualified as any to tackle the request of writing this.  If you do not agree, please refrain from sending me hate mail and posting ignorant anonymous comments.  Those rude comments are not appreciated and will be deleted.

Being in the NICU environment is both emotionally and physically exhausting.  I know that I probably aged five years during the three months we spent in the hospital.  If a new parent doesn't return your call, text or email right away, don't freak out!

What can we do to help?   We received this question a million times.  I've also been asked this recently by family members wanting to help the new parents of a NICU baby.  My response....PRAY AND PRAY ALOT!!!  I don't care what religion you practice, what this family and all NICU families need most are prayers!  I remember receiving prayers cards and signed prayer petitions from churches all around the world.  Hundreds of people were praying for my family.  These cards meant the world to me.  There were many days where I could barely put one foot in front of the other and these cards were what got me through the day.  Here are a few other suggestions:
  • Offer to run errands, including getting preemie clothes and other hard to find preemie items, such as diapers, sleepers & a preemie"coming home" outfit. 
  • Help prepare the baby’s room that may not be ready yet
  • Offer to walk the dog(s) or care for a pet if the family is away for long periods of time. 
  • If the family has other children, offer to help with child care so they can spend guilt free time with their new baby.
  • Offer to mow their grass!  This one was huge for us.  We were at the hospital from sun up to sun down most days.
Flowers, cookies, Balloons,  Gift cards???  What's best?  Gift cards were great in our particular situation.  My personal opinion, skip the flowers.  We had many people send us flowers after the girls were born.  Sadly, once I was released from the hospital I never really got to enjoy them.  We spent 12+ hours a day at the hospital.  By the time I got home I had no energy to water flowers or even to look at them.  All I wanted to do was crawl into my bed.  Most NICU's have restrictions on what can be kept near the children's bed sides.  In our particular NICU, flowers & balloons were not allowed.  If you really want to send something to the new parents, my advice would be a gift card.  After spending all day at the hospital, both of us were physically and mentally exhausted.  We didn't really want to eat but knew that we needed to stay healthy.  Neither one of us wanted to cook.  Luckily my Mom was with us in the beginning to make sure we remembered to eat and take care of ourselves when everything was falling apart around us.  After she left we had several gift cards that were sent to us for fast food restaurants.  Several of our close friends had found out what restaurants were close to the hospital and purchased us gift cards to them.  This was great!  My suggestion.....google the hospital that the new parents are spending their time at.  You can find out what restaurants are close.  Now days you can purchase everything online.  If you must send them something, a gift card is a great idea.  Gas cards are also great if the NICU family is traveling long distances everyday to see their kid(s).  You can also have food delivered directly to their home.  We had friends in California, over 3000 miles away, have a pizza delivered to our house from a local pizza parlor.  The Internet is a great resource.

To visit or not to visit?  Call, Text Email?  What's Best???  Again, please remember that this is from my point of view only!  Imagine after delivering a child, the doctors told you that your child may not live.  And if your child does live, it will most likely have severe birth defects.  Take a second and imagine how your life would crumble around you.  Would you be able to handle telling that story over and over and over to the hundreds of people who are calling you?

In our situation, rehashing it over and over became more painful every time would would tell our story.  We knew that everyone had the best intentions with their phone calls but it was very difficult.  Being in the NICU is emotionally draining enough without having to retell our story 50 times once we left for the evening.  My advice would be to start a blog or website.  If the parents are not physically up to it, designate one person in the family to maintain it and update it regularly.  This way distant relatives can check in and find out what is going on.  Cell phones were not permitted in our NICU.  When I would leave in the evening, I generally had 10-15 voicemails wanting to know what had happened that day.  This may sound awful but I had no energy to return calls.  I usually would call my Mom and let her know and have her pass around the information.  Terry would do the same with his Mom.  They were our "spokeswomen" when we couldn't speak for ourselves.  If you feel like you must call the best thing to say when you leave a voicemail is this "Hi this is Janet, I just wanted to call you and let you know that I'm thinking about you and praying for your family.  I know that your life has been turned upside down, I just wanted to let you know that I'm here for you if you need anything."  I would refrain from asking for a call back.  Let them know that you are there for them no matter what it is.  I would keep text messages to the same context. 

Visiting is another area that I feel is taboo in the beginning.  Terry and I were like walking zombies for the first few months.  I personally was recovering from delivering triplet girls.  I was exhausted and hormonal.  I couldn't sleep, I couldn't eat, and some days I couldn't figure out how to tie my shoes without crying hysterically.  Terry and I had an understanding that if one of us was able to fall asleep for even ten minutes, we would not wake the other.  Neither of us had really slept in weeks and if we could fall asleep, no matter what time of day it was, we obviously needed it!  I remember falling asleep for the first time in a few days only to be woken up by someone who stopped by wanting to know how the girls were doing.  I really recommend calling first!!  The new parents have gone into survival mode and if they are up for visitors that's awesome, but make sure they asked you to stop by and you didn't invite yourself! 

Visiting in the NICU is also a touchy subject.  Our NICU was fairly stict on their rules about visitors other than the parents.  Sadly being a parent of a NICU child robs you of those days were everything is supposed to be sunshine and roses.  You imagine all throughout your pregnancy how those first days will be.  You imagine all your friends visiting and telling you how beautiful your new child is.  NOPE, not for a NICU parent.  You don't get to introduce your child(ren) to the world for many, many, many months.  Several of our friends asked to visit the girls in the NICU.  Please know that there is a reason why it's call the intensive care unit!  Not just anyone is allowed in there.  If you aren't invited in to the NICU to meet the new child don't push it!  If you are asked to visit the baby do it!!  Most of the time this is a cry for help from the parents.  They don't necessarily need you to see the baby but they are reaching out for help from you.  They are looking for support from a friend during this difficult time.

What not to say!  While I know that everyone means well, here are a few things that you should NEVER say to a parent of a NICU baby or to someone who has just lost a child!
  • Everything happens for a reason.  (Really, what possibly could be the reason this is happening to me right now.  I hated this one!)
  • God has a plan.  If he didn't think you were strong enough to handle this he would of let this happen to you.  (I think this one was on the top of my list of worst comments.  Your faith is being tested more than anything in the world right now.  You don't need any more of a reason to doubt your faith in God.  Yes, ultimately He controls everything, but during this time you don't need a reason to be mad at God.  You need to trust in Him, not question Him.)
  • When is the baby coming home?  This is like pouring salt into a wound.  It's just a constant reminder that you've been released from the hospital empty handed.
  • She's/He's going to be ok.  Really?  Do you have a crystal ball?  How do you know this?
  • Don’t tell the parents how scared you are. THEY ARE MORE SCARED.

Things you can/should say!
  • Say congratulations!  This may seem like a no brainer, but I can probably count on one hand the number of people who congratulated me on becoming a new Mom.  Having a baby is supposed to be an amazing event regardless of the situation.
  • Ask questions. Just like you would ask a mom with a healthy baby how breast feeding & weight gain is going, ask a NICU parent how their baby is doing. Don’t be afraid to ask what acronyms and medical terms mean. The parents will be happy to talk about their child – it makes the baby more real, more THERE, even when the baby is miles away.
  • Ask to see pictures – just like you would with a healthy baby.

Again, while I don't feel like it is my place to disclose this particular families information without their permission, I ask for your prayers for this family as they continue their journey through the NICU.


Lisa said...

Very informative! Thanks!

Robin said...

AWESOME post, Janet. I learned a lot!

Jody said...

As a mom of 25 weeker micro preemies I agree with everything that you said Janet. People can also help by cleaning the house, stocking the freezer full of meals for when they are home, gas cards are a bonus since you drive a lot, sending disposable cameras so the nurses can take photos when parents aren't there. They sell preemie/NICU scrapbooks on line that have all the important stuff you want to remember like weaned off vent, and first bottle stickers. Walmart sells great preemie clothes for a good price. Also informing the famliy/friends that when they do come home their are major rules to keep that little one alive and germ free that will need to be followed for 2 years till their lungs are built up and they can surive the bugs.

Jennifer said...

Janet -

Thank you for taking the time to write this post. There are so many things here that I would have never considered.

I think it's a good reminder for people how they can really be helpful in such a situation.

Thanks again!


Amy's Blah, Blah, Blogging said...

Great information! So many don't know what to say/do in such a situation that was very helpful getting it from someone who has been there. I was, thankfully, only there for one week. That was enough for sure! My prayers go out to your family.

Do you read the blog Another Ordinary Miracle? Her baby just came out after 200 days in the NICU. That might be a good blog suggestion for your family member.