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 zip-up 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
disposable camera
gift card to baby store
hospital parking pass (most hospitals offer long-term parking options, but it’s still pricey)
wet wipes
energy bars
BOOKS (Maddie’s favorites are Goodnight, Moon and Madeline)
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.
The Radiologist Dr. Looove consulted agrees that Maddie needs a more in-depth scan. Dr. Loove has opted for an MRI because it doesn’t have radiation (a CT does). I had to call today to schedule the MRI, but it’s not as easy as just calling. I dialed the number and listened for the option to schedule a pediatric MRI. They not only had that option, but there was even an option for pediatric MRI with sedation. I know that the fact there is a phone option for pediatric MRI with sedation should make me feel better – that this is something they do all the time. But it doesn’t. It just makes me feel sad. Because sedation is required, the MRI has to be coordinated with anesthesiology. I should receive a call back in a few days with the time and date of the scan. Yay.
In other medical news, Maddie had another follow-up with the NICU clinic (she’ll have these follow-ups until she’s about three). I wasn’t too worried about this visit – Maddie is doing great. I was curious to see what her stats are, and I was slightly anxious to see what weird thing the doctors decided to seize on this time (last time they said her thumbs were effed-up). Her pulse ox level was 95 (good for her), her blood pressure was normal, and her heart rate was normal. Yay! She’d grown 3/4 of an inch since November, and her head had grown AN INCH in circumference. But her weight. Always her damn weight! She’s been stuck at 14 lbs 15 ounces for the last six weeks. It seems like every three pounds she plateaus. It’s beyond frustrating. The rest of the visit I kept waiting for them to bring up her giant head and little body.
The nurse that took her vitals and set us up in a room said that the doctors were fighting over who got to evaluate her, which was cute to hear. Maddie was in a (typically) great mood, so I could see why that could be the case. Two developmental specialists came in to play with her. The male doctor interacted with her while the female doctor asked me questions and generally kept me busy so I couldn’t be a stage mom. It worked for a while, but soon the male doctor was asking her to point out things like dogs and cookies, and I wanted to shout “she doesn’t eat cookies!” but I resisted. Barely. After he played with her for about 45 minutes, he asked me if she did any “tricks.” I listed off what she could do, and of COURSE Maddie wouldn’t do ANY of them for the doctors. I wanted to tell him i have lots of videos of her performing, but I resisted. We then took Maddie into the hallway so they could see her crawl and pull to stand. I set her down on the floor next to a small child-sized table, and instead of pulling herself up on it, she looked at us, waved, and then took off down the hall. She was OVER the NICU evaluation.
The last two minutes of the evaluation were spent doing typical doctor things – listening to her chest, looking in her eyes, ears, and mouth, and checking her flexibility and reflexes. The doctors kind of bent her legs around a little, and the male doctor tried to hit that reflex spot on her knee with a make-shift knee-spot-thingee-hitter thing. Then they said they were going to talk with the attendings and come back to give their report.
While they were gone, I almost told St. Grandma (who came along) my predictions for problems. I just KNEW they were going to talk about the big head/tiny body thing. The female doctor quizzed me on Maddie’s nutrition for ten minutes so it was obviously something they were keyed on. Which is fine. I’m all for figuring out ways to help her gain weight. But I think giving her at least 24 ounces of pediasure, 8-16 ounces of whole milk, breakfast, lunch, dinner, and two snacks AND ice cream every day is a lot of calories. I’d be rolling into the plus-size store with that kind of diet.
The doctors and attendings (four in total!) came back after about thirty minutes of discussing Maddie. They were very pleased with her cognitive development. She did well at interacting, and they could see that she is a happy and well-adjusted baby. They said that her fingers have improved since her last visit (take THAT stupid thumb loops!) but that she still has a slight gross motor delay (which, duh. Ex-preemie!). Then they danced their way to the enormous head/slight body issue. They said that because she is small with a large head and low muscle tone, they think there might be an underlying genetic issue.
Um, what? Back up there. Low muscle tone?
Apparently when they checked Maddie’s flexibility and reflexes, they decided she had low muscle tone (something called hypotonia). And just reading the wikipedia explanation of hypotonia and how it effects development is irritating me because she has none of these symptoms. So now she has to meet with a geneticist. Oh goody gumdrops, more tests and blood work for my baby!!! I’m so excited, ZOMG!1!! And because of her slight gross motor delay, they want her to get evaluated by Regional Center (again). YIPEE!!!
As her mom, I feel like nothing is wrong here. But I’m not a doctor (I just play one on the interwebs). I’m having a hard time figuring out what is necessary and what is excessive. Where do I draw the line? From MRIs to genetic tests, when do I say enough is enough, stop looking for problems that aren’t there? And what if I draw the line at genetic tests and there IS a genetic issue? My job is to protect her from trauma and pain. Why can’t this stuff be as clear-cut as not playing with knives and scissors? This humongous head is counting on me.
Today was a day I’ve been looking forward to since January 18th. The hospital Maddie was at for the first ten weeks of her life held their NICU reunion. The reunion is every other year, so they are always a big deal. When Maddie was sick, I used to tell myself, “just wait until October. She’ll be better and you’ll be showing her off.” But, even though that was my mantra, I can’t believe that it’s already October, and I was showing off my ELEVEN month old daughter today.
It’s been California-cold the last couple of days (you know, like in the low 60′s…heh), so I dressed Maddie in a sweater, tights, and a skirt. Poor thing was SWEATING at the party, because in typical California fashion, the weather was in the 80s today. It really was perfect for a picnic.
When Mike, Maddie and I walked into the picnic area, we were blown away by how ALL OUT the NICU staff had gone. There was a petting zoo. Pony rides. A bounce house. A Sundae station. Three hot food stations. A candy bar. A candy sculptor. Face painting. Puppet shows. Maddie will have a BLAST here in two years. This year, she just took it all in.
Shortly after arrival we were approached by a former “roommate” of Maddie’s from the step-down unit. It was so great to see him doing so much better. It’s almost impossible to remember people from the NICU, especially when you’re there as long as Maddie was. So many people come and go that you stop trying to even get to know them, mostly because it’s just too damn painful when they inevitably are discharged before you. Luckily, a few parents remembered Mike, Maddie, and me, so they came up to us.
Of course, as nice as it was to get toys and see former friends, Mike and I really wanted to see the people who saved Maddie’s life – her nurses and doctors. We had to make a few laps around the picnic, but finally we came across the nurse that was there the first night Maddie was transferred to the NICU. She was so kind and considerate that she became a favorite of Mike’s and mine. She volunteered to be one of Maddie’s primary nurses, which made Mike and I so relieved. When you can’t take care of your own baby 24hrs hours a day, it’s nice to feel comfortable with the people who CAN.
I’ve always struggled with how to thank all the amazing people who saved Maddie’s life. The doctors and nurses who pour their hearts and souls into the unit are 100% responsible for my daughter still being here today. Two little words don’t seem like enough. But today it occurred to me. Just sending them photos and updates and occasionally bringing her by is the perfect way to show gratitude. They want to know that Maddie is crawling, teething, and a terror at night. When they hear those stories, they know they succeeded.
I wish that parents with babies currently in the NICU could attend the picnic. I can’t tell you how much it would have helped my morale to see so many healthy babies. Every day in the NICU seems like a year, and it’s hard to ever imagine that you’ll have a life outside of the unit. I want to give all those parents a hug and show them Maddie. I want to tell them that someday they’ll be at the NICU reunion, too. That no matter how hard it it seems, there is a smiling baby only a few months away.
I just spent the evening playing with Maddie. She’s still army-crawling up a storm (one of these days she’ll figure out that her legs are helpful), discovering her toys, and interacting with Mike and me. It’s so much fun to watch her world expand by leaps and bounds every second of the day. We are loving every moment of this.
Now that Maddie is sleeping (an amazing achievement in and of itself), I’ve been thinking about how little she used to be. I’ve been going through her clothes, trying to make room for winter wear and packing away a few articles of clothing that don’t fit her anymore. I came across her preemie clothes and paused. There on top of the pile was the first shirt I ever bought Madeline, the first shirt she ever wore. She didn’t wear clothes until she was three weeks old. I found a pink and green camouflage shirt that I thought would show off her fighting spirit. At the time, she was still hooked up to a bunch of IVs, and was on the ventilator.
The shirt is for a preemie up to five pounds. In this picture she’s just past three pounds. It’s swimming on her, just like her diaper. I didn’t even know clothes were allowed for NICU babies until her nurse told me to bring her shirts and socks. I went out and spent $100 on socks alone. I didn’t want her feet to be cold.
I went to my You Tube site and I found a video of her, wearing the same shirt, on the same day. She’s agitated and crying, although you can’t hear the sounds of her displeasure because of the ventilator.
I’m so grateful that our NICU encouraged video and pictures. When I’m feeling down about Maddie’s slow weight gain, it’s so helpful to look back and see how far she’s come. I have footage of her first cries after her ventilator was removed. Her voice was so hoarse from the vent tube. Her first sneezes were so small.
I stare at her every day, and I still see that tiny three pound baby she once was. Sometimes you just need a visual to illustrate the days gone by.
