F.Y.I.

I am friends with the March of Dimes and March for Babies on both my personal Twitter account and my Facebook account. Yesterday March of Dimes made an announcement that a beautiful 17 month baby girl from California passed away - her name was Madeline Alice Spohr. She passed away due to lung complications from severe prematurity. Her story is amazing. They asked that donations be made in her memory to March of Dimes in lieu of flowers. [In one day they went from around 2 or 3 thousand dollars to over 18 thousand dollars. If you google Madeline Spohr you will find a ton of blogs mentioning Maddie. She was very loved, especially so in the blogging world.]

Her mom Heather had a blog, and as I read through it, I came across this article titled NICU FAQ and found it absolutely true and absolutely perfect. (It's something she gave words to that is so hard to put words to.) So much so, that I wanted to share what she had to say, since I think everyone should know this information. [I copied the information since her site is loading slowly because it's having a large quantity of hits right now.]

NICU FAQ
March 26, 2009
by Heather Spohr

Last week I became a March of Dimes Mom (my picture and bio aren’t up yet because I haven’t found a picture I like!). I am so honored to be able to give back to the community that did SO much for Mike and me when we were dealing with Madeline’s gestation and hospitalization. Once a month I’ll be blogging about the issues that Mike, Madeline, and I deal with due to prematurity. You know…pretty much like I already do!

The number one email I get is “I have a friend/cousin/neighbor with a baby in the NICU. What can I do for her/him?” After receiving three emails like this in the last four hours, I thought I would post my advice here. As with all advice, take it and adapt it to your friend. Everything I’m suggesting was what MIKE and I needed - it might not apply to the person you know in this situation. Disclaimer, shmishclaimer, let’s get on with it.

Things you can SAY:

Say Congratulations - this might seem like a no-brainer, but I can count on one hand the number of people that congratulated me on becoming a new mom. A baby is an amazing, joyous event, and should be treated as such.

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.

Things you should NOT say:

“When can I see the baby in person?” No one wants to show off their baby more than new parents. If they are comfortable bringing you into the NICU to see the baby AND the baby is healthy enough, they will practically drag you back there.

“When is the baby coming home?”As soon as the parents know, YOU will know.

“She’s going to be okay.” Do you have a crystal ball? That’s what I thought. You DO NOT KNOW the baby is going to be OK. Believe me. TRUST ME. Infections are the dirty secret of the NICU, and they can hit any baby at any time. They are MAJOR, sometimes life-threatening setbacks.

What you can DO:

Offer to help. Volunteer to: walk dogs, do laundry, bring books & magazines, lend a computer if the parents don’t have a laptop, Google medical terms, print up NICU terms, babysit older kids, send cards, start prayer groups (should you be so inclined), pick up pumping supplies, be another set of ears when the parents need to hear important information - this could go on and on. Just BE THERE for your friends however they need you.

Sit in the waiting room, especially during a procedure.

Meet your friends for dinner in the Hospital Cafeteria. Better yet, BUY them dinner. BEST, BRING them dinner. Most NICU parents forget to eat. This is obviously not good, ESPECIALLY if the mom is breast feeding. If you make an appointment to eat with them, they will have to eat something.

If you can’t be there in person, call or email. You might not get a response, but it will definitely be heard and appreciated.

Offer to be the mom’s chauffeur. In my case, I’d just had surgery and wasn’t cleared to drive. Mike often went to the NICU first thing in the morning, but I had to stay home to pump and recover. My friend Brianne took me to the NICU and I was SO grateful.

Be the spokesman. The parents will have MANY people that want to know how the baby is doing. Offer to be the point person. Answer questions, email updates, keep everyone else informed.

What you can BRING:

FOOD

Comfortable clothes, especially for the new mom who just gave birth. NOTHING fits her. Bring her yoga pants, sweats, anything she can be comfortable in.

Button-down shirts and hoodies. These are AMAZING for when parents practice Kangaroo care.
A disposable camera to leave at the baby’s bedside so the nurses can take a picture of the baby when the parents aren’t there.

Gifts for the nurses. Nurses run hospitals - doctors just drop in. The parents will soon realize this, but they will have a hard time getting out of the hospital to get stuff for the nurses. Help them by bringing cookies, cakes, etc.

A NICU Parent Care Kit. These are some of the things Mike and I had, or wish we had:

kleenex
hand lotion (EXTREME CARE)
chap stick
antibacterial lotion
energy bars
gum, mints, mouth wash
tooth brush & toothpaste
hairbrush
gift card to baby store
hospital parking pass (most hospitals offer long-term parking options, but it’s still pricey)
wet wipes
energy bars
oatmeal cookies (oatmeal is good for breast milk production)
a notebook & pen to be a journal of thoughts, treatments, etc

ALWAYS REMEMBER:

The Dad. Mike heard countless times, “Oh, your poor wife.” As if he wasn’t also suffering! The dad’s baby is sick, too.

The NICU is a roller coaster, and just because you got good news from your friend yesterday doesn’t mean you’ll get good news today. Be prepared for any kind of update.

Be the kind of friend your friend needs. Some people want optimistic friends, some want realistic, some want silent pals, some want comedians, and some want all of the above. Know your friend, and LISTEN to what he or she needs. And then BE what s/he needs. Even if that means being the realistic friend when you’re normally Pollyanna. Even if you have to make fart jokes when you’re normally quoting statistics. Even when you have to admit that the baby might not make it. Especially then.

Don’t tell the parents how scared you are. THEY ARE MORE SCARED.

Saying something is always better than saying nothing. Get over yourself and contact your friend. They will remember that you didn’t. Yep. THEY WILL REMEMBER.

In the end, you know your friend/cousin/neighbor the best. Do what feels right. But do SOMETHING. The NICU is a hard place to spend time - do what you can to make a few minutes a little brighter. You’ll be glad you did.

Did I forget something? Let me know!!!

Madeline Alice Spohr 11/11/07-4/7/09 born at 29 weeks.