Tuesday, January 28, 2014

The Runner

If you know me, then you will not be surprised that on an early autumn day a year and a half ago, healing from a c-section scar, I noticed a runner and at first I mourned.

I'm not particularly fit, but I love running. It is a banya for my soul. Each step, each mile has me beating my soles like birch twigs in a sweat house. I am cleansed as toxins housed deep in my heart and head are brought forth and released through tiny pores, flushed down the drain by a refreshing post-run shower. My heart rate regulates, my temper calms, and I can be more the person I wanted to be.

Once I could do it, running became a part of my self-prescribed therapy and a reference point for how far I'd come after being thrust into the life of difficult-to-digest emotions, the life of parenting a severely premature baby.

So look back with me, will you? See a glimpse of the runner that I saw as I drove into the NICU that warm September day. The story has been posted in two parts.
Part one
Part two

In the end the moment reminded me that even when you feel you're treading an unknown and lonely path, often there are footprints of those that went before you, if you take a second glance.

The full story can be found on differentdream.com. A warm thank you Jolene and the rest of the crew at differentdream.com for wanting to include my story on their blog for parents of special needs children.

Monday, January 27, 2014

Returning to the hospital - the difference between the PICU and the NICU

About a year ago JAM was breathing fast, upwards of 100 breaths per minute. He didn't seem in distress, but this didn't seem normal either, so he was brought in to the PICU (pediatric intensive care unit) to be monitored.

We were fortunate that this was the only time for a year that he needed to be in the hospital for an emergent need.

I learned that the PICU is different from the NICU. I learned that in the PICU a baby needs their mom or dad near them always.  Here's a list of advice I wish I'd been given prior to being admitted:
Six months old, size of newborn
  1. Warn the PICU nurses that your six month old son is the size of a newborn. Otherwise the hospital gown will wade on him.
  2. Sanitize and scrub in. A lot. Because PICU parents aren't as careful as NICU parents when it comes to germs.
  3. Best pump milk in the hour before his feeding time and keep the fresh milk in the room with you. I made the mistake of giving it to the PICU nurses, they put it in the fridge or freezer, I called to tell them it was his care time -- and it was over an hour before I saw that much-needed milk again. I was in tears by that point because I HAD the milk, I had a hungry baby, and yet I could not feed him.
  4. PICU nurses don't know what you mean by "care time." They aren't paying attention to when your baby needs to eat next. That's your job. They'll chart what he takes in, but they won't think ahead that it might be time to grab some milk. Thus, "care time" means nothing to them, and rather than ask you what you mean when you page them, they might just ignore your page and go on with charting. [Okay, this probably isn't normal. I think I had particularly cranky overworked nurses the night I was there.] Since they don't equate "care time" with "He's awake, so come take baby's temperature and blood pressure now and bring some milk while you're at it," be specific. Say "My son needs his milk from your freezer now." Don't assume they'll come in to help weigh diapers and such. As the nurse so kindly said to me when she finally DID bring his milk much much later, "this isn't the NICU, we don't do things like they do down there."
  5. Don't plan to leave baby's side for the duration of the stay. You'll rest better if you can stay at baby's side. Bring yourself snacks, sandwiches, etc. Plan on having friends bring you food, or be sure to sneak away - and tell the nurse you're leaving - as soon as baby finally falls asleep for a nap. And then come back fast. My six month old in the PICU had a weak cry in a hospital room far too big for him. He would have cried for way too long - so long that he would have given up crying and gone to bed hungry - if I hadn't been there to page the nurse for him. 


Last weekend JAM went back into the PICU for the second time. I'm grateful we've avoided it for a year. I'd hoped he'd never go back. I hope THIS is the last time.

Staying strong in the PICU
This time I was prepared. I brought a phone charger, books, phone, jammies, toothbrush, Jonathan's formula and his own toys. We didn't bring enough books for a sick toddler, and in the rush out the door after his nap time I forgot JAM's glasses, but Steve fixed that the next day.  We brought our own snacks, and I planned a day or two in advance who would be able to bring me food when Steve wasn't able to make it to the PICU to relieve me for a meal time.

My nurses were fresh (because we didn't show up at 11 pm this time around) and involved me in every part of his care that they could.

Despite Jonathan being sick and sad, over and over again this weekend every nurse and doctor that saw him commented on how well he was doing for his gestational age at birth. "He looks amazing for a baby born at 25 weeks." "Um, he was born at 23 weeks." "Oh wow, he looks really good." 

I reminded them that they normally get the more medically fragile kids of any population -- they're working in a PICU -- but I still stored their compliments in my back pocket, saving them for a rainy day.

In the end we have to add another specialist - a neurosurgeon - to our list of people that follow Jonathan. Not a lot is known yet, and we aren't terribly concerned at this point, but it was a bitter sweet weekend. It reminded us of how amazing Jonathan's road has been, and was a cautionary tale of how fragile he is still.
And a day later, feeling much better at home.

I think this quote from Steve Saturday night sums it up:
When we said "for better, for worse" this isn't what I imagined... I didn't think they'd come at the same time. An amazing baby that I couldn't imagine being without, that also can throw my world upside down in just a day.

The other Steve quote from this weekend comes from Fiddler on the Roof. Steve used it to express how greatly relieved he was while simultaneously being exhausted by the ups and downs that are preemie parenting.  (I'm telling you, the roller-coaster starts after the NICU.)

(Tevye): I know, I know. We are Your chosen people. But, once in a while, can't you choose someone else?

We are so blessed, and so grateful for our son. Jonathan has navigated some very tricky waters. It'd be nice to go back to boring some day, wouldn't it?  I could go for that.

On a completely different note, I'm on facebook now. I made the page right before JAM took his trip to the ER, so not a lot is on there yet, but feel free to "like" me there.

Friday, January 17, 2014

18 months old - Cognitive Dissonance

My son is a year and a half old today.

I look at pictures of him just after birth, and then pictures of him after coming home, and I cannot reconcile the two. The son on the right and the son on the left in the picture below are the same son -- but in my mind they are from two different worlds, with two different sets of hopes and dreams.

You weren't that pretty when you were born, but you've come a long way, dear boy.

Welcome to your toddler years!

Thursday, January 9, 2014

Today: J crawled

Have no idea why I posted this picture? Keep reading.
Today, about 8 days shy of 18 months, JAM crawled. He's been moving around on the floor for a while. He has even made one or two crawls forward before belly flopping. But today for the first time he crawled over a foot forward (dare I say two feet?) in the traditional forward four-point fashion. Want to guess what was so intriguing as to pull him forward finally? Post your guesses. I will be back soon with pictures.  [Update: Clearly I have now posted pictures. And the answer. So you missed out on the game, but enjoy the hints and responses anyway!]

Hint: Aunt Katie, you would be proud. And Becky A, you made this moment possible.
Double hint: if you were visually impaired, what would intrigue you?
Last hint: what did he NOT experience for about four months after he was born?

INSTRUMENTAL MUSIC!  Jonathan learned to crawl forward so that he could get to the other side of the room to see how such lovely music was being created.

By the way, these images are a bit deceiving. It actually wasn't Ella's wonderful rendition of "Open A String" nor of "Open D String" that caught J's attention.

Here's how the crawling came to be: Ella had her second violin lesson today. She's got an amazing teacher who has zero years of experience teaching violin and charges just as much per hour. (She calls her teacher "mom.")

Today after tuning her instrument, I fiddled around and played a hymn by ear, just for fun. As I played, JAM (who was playing on the other side of the carpet) slowly crawled closer and closer to the instrument to see what was going on. He never (not once) dropped his crawling stance. By the time I was done, he was pulling on my socks to try to stand up and see.

As you can see by the pictures, he was still interested in the violin when Ella played, but he's not QUITE as intrigued by songs that aren't really songs. (He spent the entire time as he crawled to me staring at me with either a very concentrated look or a big goofy grin.)

Methinks I best be rosinin' up my old viola bow. I should get back to playing that instrument while my son still thinks the music I make is pretty.

This moment brought to you by seven months of physical therapy, Becky A's handed down child-sized violin, and the letter G.

P.S. Letter G, thanks for sponsoring. While your clef is still not superior to C clef, I will grant you that it has its place in the world.

Wednesday, January 8, 2014

Guilt, Part II -- Survivor guilt

“How old is he?”

Oh, the dreaded question. I was at a church potluck. We hadn’t been at church much over the winter months, so I didn’t really know many of the new members. Now it was early summer, risk of RSV and colds were diminished, and we were finally taking our baby out in public.

And I was sensitive.  He was 9 months old, but he looked like a newborn. He was still wearing 0-3 month clothing.

“He’s nine months, but he was born four months early.” My quick standard line.

The middle age gentleman that asked the question became very still.

“Oh.” He said, “What’s that for gestational age? Like, 25 weeks?”

Oh-oh. He knew something. Middle aged men don’t typically do gestational age math that fast.

“23 weeks,” I said.

“Oh, wow,” he said, “How did they do that? I mean, how was that possible?”

I said something light-hearted about how it was pretty amazing, and then hinted at the difficulties by saying something like “it was a pretty near thing,”

And then he shared. His son – born at 29 weeks – a full month and a half further into the pregnancy than my son – had only lasted until his second night. Then his heart and lungs gave out.

This was over 30 years ago, but as he spoke, he was transported to that NICU of that past, to the bedside of that baby, to his boy Samuel, and to the few moments they’d had together.

“They didn’t tell us that anything like that could happen. It was so sudden,” he said, “I thought he would be okay. I’d gone back to work that day. When I left him in the NICU, it looked like he was fine.”

Sam had lived less than two days, over three decades ago. But he wasn’t just this man’s son-that-had-died. As he spoke of Sammy, Sam’s name was used over and over again. His baby boy Sammy, forever a baby, but never forgotten.

I cried with him. Me and this stranger. We cried over Samuel. We cried over the tragedy that babies die. And when he asked again how it was possible that my son survived, I still didn’t have an answer.

“By God’s grace and a great medical team,” I said, feeling very insufficient. The truth is, JAM hit some of the worst preemie ailments at a very low birth weight, and he was born the wrong gender (preemie girls fare better than boys) and yet he’d squeaked through. He shouldn't have made it, and yet he did. I had no answer.

I don’t know! - my heart screamed – I don’t know why my son lived and your son died.

In the book of Job all these wise friends try so hard to explain all that had come of Job’s life. And their wisdom was nothing. It was them, trying to explain an unexplainable God. In the end, God has choice words for these friends (Job 42:7). Sometimes there are no answers.

So this middle aged father and I cried for his son, raw emotions of a pain that will never fully heal. Jonathan looked up at us from his car seat carrier. I didn’t get it.

NICU survivor guilt.

There are other types of survivor guilt, too. There’s comparison guilt.

Comparison guilt (my term) is when I feel guilty that my child is doing better than someone else’s child. Since you don’t get much earlier than 23 weeks, most of these other children were born later and had more time in the womb. So they should be doing better.

And then there’s the flip-side of the comparison guilt coin: comparing my child to the micro-preemies who ARE doing better. These are the babies born around my son’s birth weight and gestational age who fared so very well. These are micro-preemies who left the NICU prior to the babies’ due dates. At a year and a half or two years old, they are basically entirely caught up. They’ve graduated from early intervention services. They have perhaps some signs of prematurity (like a head shaped like a toaster – yes, that’s a thing) but they’re the sorts of signs most people won’t notice much. It's so easy to see that and have a pang of regret when I know I should rejoice with them. Most of the time I DON'T mind that they're doing so much better. Most of the time I rejoice with them. But then there are moments when they get unexpectedly quiet or awkward, as they realize I still have to battle to get where they are. I don't want them to feel guilty, I don't want to feel pained. I want their support and friendship, because they do understand so much of what I have been through.

So how do you fight these guilts?

First, recognize that every premature baby is different. If I sat down and went point-by-point over what my premature baby was doing compared to someone else’s, and at what ages, we both would leave feeling kind of down. And what would it help? Feeling guilty about how well my child was or was not doing compared to other preemies was not going to equalize things. You can’t make a preemie get better by pointing to another preemie who did better. So don’t compare.

Second, recognize all that you share in common with those around you. Share. When I say don’t compare, I don’t mean don’t talk about how things are going. DO find good friends with similar experiences. DO share. But shift the focus. Instead of focusing on keeping score or tallying up a report card on your kid (I love lists, so it is WAY too easy for me to make mental lists on my kids), instead of this sort of comparison, focus on hearing each other’s story. Talk honestly about how things are going. In other words, do empathize.

Cindy, one of my NICU friends, taught me this. She shines better in this than I ever could. She naturally empathizes with others’ situations. She did this even when she was worn by months and months living at her daughter’s bedside. I admired her strength.

Some days her child was more stable than mine, other days less. It was clear from a few months in that our preemies would be walking very different paths. My son was on a volatile up-and-down path that wove this way and that with rapidly shrinking and growing shoulders; her daughter was walking on a narrow, slow going, and steep climb. Her situation was no less scary than Jonathan’s, it was just different. And yet on her daughter’s bad days, Cindy rejoiced with me that my son’s days were good. On her daughter’s good days, she mourned with me that my son’s were bad. In this way she taught me empathy and true friendship.

I’ve found another hidden gem in all this. I’ve found that when I listen to other people, JAM’s past helps me listen well. I know how to hear their pain and what sorts of questions to ask because I can empathize, because I’ve been somewhere similar, even if their stories are vastly better or worse than ours.

The shoulders I leaned hardest on when JAM was in the NICU were the shoulders of parents who have experienced similar things. Sometimes their preemies weren’t always “micro-preemies” like mine. In one instance the son wasn’t a preemie at all, but a grade school boy with cancer. Yet both boys were admitted to the hospital on the same day, and both of us mothers learned to navigate that building like it was the back of our hands. One day part way through our saga we met at her house, grabbed a bottle of wine and five of her closest friends and just shared, and laughed, and absorbed it all.  It was just the sort of therapy we both needed.

“You’ve been through the valley of the shadow of death with your son,” one micro-preemie parent said, “You understand us better than most people do." I wasn't sure I did. They had dealt with bereavement, a place I hadn't been. But I guess I'd done the right sort of relating, the right sort of listening, so I had begun to understand. I hadn't been where they were, but in some senses, I'd been terribly close.

To summarize: don’t compare, just relate. Throw off the shackles of guilt, and instead use the good and bad of life experiences to better empathize with those around you. Mourn with those who mourn, rejoice with those who rejoice.

I can do this.

Sunday, January 5, 2014

Weather -- My internal trialogue on bad winter weather

I wrote this just over a month ago for another crowd.

Given the recent crazy weather in the United States these days, I thought I'd post it here for a broader audience.  I am a Michigander these days, but that doesn't mean my North Carolina and Minnesota sides don't duel sometimes.

Stay safe!


I had to go out on the roads this morning. My Minnesota and my North Carolina had a talk with my Michigan. The internal trialogue went something like this...

NC: This is HORRIBLE weather! NO ONE should be out in this weather! 
MN: Yeah, yep. This is a Minnesota winter alright.
MI: But, wait, where's the lake-effect snow? Light, fluffy, easy to make snow balls out of?
MN: Sorry, MI. Looks like we're all confused over here. This is a Minnesota snow. Complete with the prairie winds.
NC: We should STOCK UP! The grocery stores are going to be all out of MILK!
MI: Um... after we left the land of BBQ, most of us went vegan... did you forget?
NC: We should STOCK UP! The grocery stores are going to be all out of ALMOND MILK!
MN:That's one way not to have to worry about gettin' out to milk the cows. Who ever heard of milking almonds?
MN: Yep. Bad weather. Sounds reasonable. But you do know that normal people don't raid grocery stores, right?
MI: Passive-aggressive ignoring. Not clear who it is direct toward. MN thinks MI is just really worried about the roads. Good to drive slow. NC just continues to glare.
NC: but this IS bad weather, right? I mean, three cars in the ditch in 500 yards -- that's bad even up here, right?
MI: Yep.
MN: Yabetcha.

All three then agreed to a shopping trip where the inner-Laura reigned and lots of comfort food was purchased. Soups. Lots of soups. Pasta. More soups. Spinach. Pinto beans. Pizza. Pizza sauce. Bread to be warmed in the oven. And more soup. No milk, almond or otherwise. My North Carolina lost that fight. We then drove slowly home and the trio of voices in my head melded into just one voice: mine. Wanting to snuggle into some warm slippers and take a nap. Because no matter which state you are from, this is some frightful driving weather!

Wednesday, January 1, 2014

Guilt, Part I- NICU parent guilt, a how-to

I should have felt parent guilt a long time ago. It was hinted at by side comments from people when they found out that I, a mother of two, was not a stay-at-home mom. Pitied looks. Side comments about how they grew up so fast, and didn't I want to cherish this time with them? And here I thought I was cherishing my time with them.

My dear friend had an MA and two (and now four) kids. She also got a pitied look from people when they asked what she was doing with her degree and she responded that she was a stay at home mom for her adorable boys. Wouldn't they be too sheltered? Wouldn't they like to be in a preschool environment?

Seems you can't win. There's plenty of reason to feel guilty.

Steve (my spouse) told me to tell those that asked that we'd talked about the work thing a lot, and we'd decided that since my girls enjoyed daycare and Steve enjoyed his job so much, we felt it was really best for family dynamics if he continue to be a working parent rather than a stay-at-home dad. "Why does it always have to be you they ask?" he said.  I love my partner.


But NICU guilt is different. It's harder to brush off, harder to fight, harder to grasp.

Picture this: your baby is sick, maybe dying. Your children at home have had their world turned upside down - first by their mom being suddenly put on hospitalized bedrest, and then a few weeks later just as things settled down, by a rush back  in to the hospital in the middle of a mommy-daughter craft time. Now all of a sudden they have a baby brother, but they can't see him because he's too fragile. They're worried.

Things are so uncertain. You are sick with two forms of sepsis. (Er - if you're a guy, just pretend you're a woman here.) Your c-section scars mean you can't pick up your older children. [guilt] Your child in the NICU can't be touched because his paper-thin skin is so underdeveloped it would hurt him. His eyes are fused shut. You don't know why, but your body failed him. [guilt] He should still be in your womb, he should still be there for three to four more months.  But he's a week old and weak. You can't drive to the hospital on your own. [guilt] You can't take your older children with you. [more guilt] This means that you and your partner can't spend much time together. One of you is always with the children at home, the other at the hospital. 

You make things work for a while. Then work starts up again - for both of you. There's no choice. Your household depends on two incomes - or at least an income and a half - but going to half time means that you lose your paid maternity leave, that you have to pay it back. So you put your older kids on the school bus and trudge back in to work. You wait until after the girls have had the supper your spouse cooked before you head back in to the NICU. You spend your weekends there to make up for the missed weekdays.

You miss a surgery to stay at work. It seems odd in retrospect, but if it fails, you'll have to send your son to Detroit so they can reattach his retina. Hours away, and you'll have to go with him. You don't have enough time off for that. Your partner attends the surgery so that your son is not alone. You should both be there, but really, it's only his eyes. You couldn't do anything to help anyway. It's not like the last time, this is a minor surgery, he's not going to die. Just his vision.

NICU nurses explain to each other during shift change why you're not there - why neither of you are ever there during the day, except for the two hours twice a week that your husband can get in to be around when doctors round. [guilt.]

It's okay at first, your baby is still unaware of his world. The NICU nurses take good care of him, and you are banking your last three weeks of maternity leave for the day he's released.

But then he grows up in the NICU. He knows you - the sound of your voice and your smell. You're his mom, and you're one of his favorites. He is stable and wants to be held and played with. [guilt] He misses you when you're gone. [guilt] He has learned to cry. [heart-pang]

You want to spend every moment you can with him.

Four months in, with no end in sight, means your daughters miss you too. Your oldest starts screaming at the world more, your youngest goes back to bed wetting. [guilt] You rarely talk to your spouse any more. [guilt] You can't even have babysitters over without being embarrassed at the state of the house. Clothes no longer get folded, they're just washed, rifled through, worn wrinkled, and thrown back down the stairs in a heap to be washed. [guilt] Saturdays are mis-matched sock days. Dishes are never done except for pump supplies which seem to take two hours a day to wash. You wonder why you never purchased a dishwasher.

You're failing at this parent thing. There's so much guilt.


No one told me about NICU guilt. It's hard to manage, hard to have it not consume you. But you can take steps to ease things

How do you fix NICU guilt?

You probably can't. But here are my tips for helping make it a bit easier:
1. Accept a C+ job as good enough. As parents we want to be perfect. When a child is hospitalized, you can't. Perfect is out of the question, so accept good-enough.

I learned this from a wise friend years before our JAM session began. She and her husband were both in grad school getting their PhDs. They were writing dissertations, teaching college courses, homeschooling their ten year old, taking him to swim practice, and had another baby on the way.  By my count they had at least three full-time jobs.

"How do you do it?" I asked her.
"I do a B+ job on everything, and an A+ job on one thing. Each week that one thing changes." 

THIS was the most impressive and refreshing piece of parenting advice I'd ever heard. She went on to say that sometimes she focused on being an amazing home school parent. Other times on getting the kitchen REALLY clean, and other times she sent her son off to his room with a book, ignored the dishes, and spent the day writing her dissertation. She learned to focus. 

As a NICU parent, don't go for B+. Accept C+ in nearly everything. You're going for survive, not thrive. Throw a load of much-needed underwear in the washer, and call it a day. Don't even bother folding.

2. Acknowledge that this isn't forever. I don't know why, but that helps. Eventually your child will be home, there will be no more NICUs. For now, you're growing deep roots. Don't expect fruit

3. Outsource & accept help. In economics they talk about comparitive advantage. YES, you as a parent might be the best person to take your older kids to the park, AND you're also the best person to be at your son's bedside in the NICU. But you can't do both. Someone else can (and is very willing to) take your kids to the park, and they'll only be marginally less good at it than you. (Sometimes, if it's a favorite aunt, they'll actually probably be better at it than you.) Thus, outsource. Let other people bring you meals or watch your other kids. Accept as much help as you can. Free you up to be the mom or dad you need to be for your NICU baby.

4. Focus. This is the hardest bit, but it's also the most helpful. I know so many parents that get consumed by NICU guilt. When they're in the NICU they worry about their kids at home. When they're at home, they worry about their NICU baby. When they're at work, they're really not there at all -- they're just trying to get their head on because life is so fragmented. Their head is always in three spots, sometimes more, always feeling the pressures of the other places.

This all goes back to point one. Know that you will get a chance to be with your baby or your at-home children or at work each day, and spend your time focusing on where you are that moment. If you're with your kids, invest in them. If you're at work, make a check list and work through it. If you're in the NICU, rest in the knowledge that (presumably) someone else has things covered at home/work, and let your attention be focused on your sick child.

5. Create a schedule. This really helps with number four. It was so much easier for me to be at work or with my girls if I knew that there was another time that I'd be at the NICU. My partner and I made a commitment to have one of us parents be at the NICU every day for some amount of time. In the 150 days we were there, we only broke this commitment twice, when we were both too sick to enter the NICU. That's not too bad.

If you're a single parent, get a dear friend or grandparent to help with the NICU duties so that on occasion you can have a night-off. The road is long and occasionally you'll either get sick or just worn, and you'll find yourself having to stay home. Knowing that your baby still is being seen by a care giver will help you rest away from the NICU. (Most NICUs have a program or training an alternate caregiver must go through to be allowed access to the NICU, check with your NICU social worker or the front desk).

If you are living far from the NICU, also make a schedule. It may be a weekly rotation of responsibilities instead of a daily dip into each area, but, again, knowing you're not "abandoning" your baby in the NICU or "neglecting" your family at home (horrible words - strike them from your vocabulary!) will help you be okay with feeling split between two places.

Wow. Doesn't that look marvelous?  Isn't it amazing how easily I've lined up just exactly how to survive NICU guilt?  This woman had it all together!
Except I didn't. I don't. It's not that easy. I promise this - if you are a new NICU parent reading this, your heart will be pulled in hundreds of directions and it will hurt, no matter how much you plan to make it work. Maybe this advice will help a little. Maybe not. Know this, though - you're not alone, and you are okay. It will get better.

Hang in there.

Parents of Preemies / Hospitalized Children -- Please help! Share below what things helped YOU stay sane in the NICU / PICU / hospital. Feel free to link back to your blog.