Tuesday, December 31, 2013

A Summary of Posts from 2013 - Most popular & my favorites

2013 has treated me SO much better than 2012. In 2012 I went on a fantastic vacation and was hooded with a masters degree. We got a new baby, our first boy. So you'd think that'd be a year of amazing things. But it was rough. And I learned to value the boring and mundane.

2013 has been full of cozy corners, therapy sessions, books, worrying, doctors visits, test, two surgeries, finally deep cleaning parts of the house, nightly romps with the kids and nearly nightly story hours, a renewed commitment to my own health, and lots of healing. (Oh, about those nightly romps? One of JAM's first dozen words is "gick-gle." It means "tickle" and he scrunches up his shoulders and starts laughing even before I've started the tickles. He says it to signal that he recognizes he's on his changing table for the last change of the night, and that it's time for my hair to fall in his face or my lips to blow on his neck to start the nightly tickle fest. Usually then I hand him off to Steve who has a much-too-rowdy for my taste romp with the girls and JAM -- usually involving horse rides where JAM is the jockey and one of the girls is a very unsteady horse. It is a sight not to be missed if you're ever at our house around bed time.) This year has been somewhat of a steady plow through life, much less of the amazingly good and horridly bad of 2012, but that's just what we needed. Everyone has healed.

A half a dozen of the most popular posts of 2013:
1. The birth story of my son
2. By way of introduction
3. Viability and Recussitation  - the difficult case of the 23 weeker
4. Choice
5. 1st birthday pictures
6. Of spiritual support on the cusp between new life and death

Posts that are worth a look:
These posts were not extremely popular. They aren't sensational like the ones that made the top six, but I liked them nonetheless. (Listed in chronological order.)

Support Posts:
Bedrest support
What to buy for a micro-preemie
Good books for siblings of preemies
What I want my Early Childhood teacher to know about my former preemie

There you have it, 17 posts, mostly about my son, born on the 17th and 17 weeks early.

Happy New Year.

Christmas THIS year. Ice turned to warmth.

We started our holidays on an unexpected note.

An ice storm.  The weight of the ice on branches combined with the high winds led to many many power outages across our area.

This all happened early Sunday morning, so we sought solace at our church. We remembered that when an ice storm had hit our area in North Carolina, church was opened for all without power. We hoped this would be the case here, as well.  We hoped, at the very least, for a few hour of warmth before we had to go back to a cold home. We hoped a few hours was all it would take to restore power. I worried for trach babies across the area and babies dependent on oxygen. I would have never thought of that before JAM. A quick text to a friend whose baby still was on O2 confirmed that they still had power. Good. Better us than them!

I not-so-secretly delighted that we could FINALLY go to church as a FAMILY. For the first time since October, both of us parents could attend, and Jonathan could come with us. After all, while it wasn't safe for him to come to church normally (thank you RSV), surely it was safer for him to come with us to church than to stay in a cold home.

We got to church early to set up some breakfast goodies for the college students. The church was locked. Moments later an elder drove in and informed us that church was canceled.

By that time, and thanks to the 4G on my smart phone, I had put out a cry for help and a home had opened for us. This home was more or less empty. (The girls discovered guinea pigs in a cage in one of the bedrooms. At first they thought they were rabbits.) Dear friends had just recently left for some time away with family. The two boys who normally inhabit the house are just the right age such that our girls thought the toys and books left behind were just about perfect for a day or two of playing. 

We thought it would just be a few hours.

It was two days.

I feared for the lego creation in the basement. It was clear that Oldest Boy had worked for HOURS to make a perfect recreation of some spaceship.

Mimi, being only five, didn't really get that this was a thing.

Previous experience taught us that Mimi (and Ella) had no issues at this friend's house with
a. drawing on the carpet
b. drawing on the walls
c. destroying toys

And that's when the boys WERE around watching them.

We enjoyed day one. I read books while snuggled under one of my friend's favorite blankets. Steve read books in the other room, Jonathan at his feet shuffling toys back and forth on the short, previously-drawn-upon carpet (ahem, Mimi as a toddler). Mimi and Ella played with either their own toys or the boy's toys. There was a fair bit of running from my room to Steve's room and back again.

Day two was not disastrous. Youngest Boy is only a bit older than Ella and has great taste in books. Ella didn't bother getting out of bed for hours.

J and I DID get up as he had his weekly occupational therapy appointment that morning. I used this as an excuse to grab a coffee at the kiosk in the medical building. With THIS I was ready to tackle the day.

Then Steve and I got preemptive. We packed up the kids. We went in to an empty college campus, and we let Ella and Mimi get very creative on the white boards of a business department classroom. The nice thing about these particular classrooms is that they had white boards on three sides. The girls made a marvelous mural.

This marked the last day of the year that the campus would be opened. We grabbed some food on campus for lunch, and hoped that by the time our meal was over that power would be restored.

It wasn't.

So while Steve punched away at a syllabus for next year, I started looking for resorts near by. Three more days was the estimate. Three more days before power would be fully restored to the area. Oldest Boy's lego creation would NOT last that long in the restless hands of Mimi.

We found a resort. It was an hour away, high priced but with sleigh rides and a water park, and open for the holidays. We could do this. Downsize to a small one room cabin, and we've got a deal. There was even enough beds for my sister who was scheduled to drive in the next day. I could stay in the cabin with J. The kids could go swimming with Steve and Sarah and then have the joy of seeing their hair into icicles on the way home.

But I'd have to pack. A lot. And what of the presents? I'd have to go back into a cold house where I was only half-way through doing a load of important laundry. I needed it before the day was out or I'd have to start hand-washing clothes.

I sighed, told Steve I was ready to hit "send" on the order for the cabin an hour away, but I thought MAYBE  maybe I should check the house first.

I did.

The lights were on. I could see that from the driveway. A beacon of hope. Christmas was back on.

I didn't even bother to go in. I'd wait for the furnace to warm the place up a bit more. 

As I drove back to campus, the world changed a bit. The ice covered trees suddenly looked beautiful. Perfect for a Christmas day. By the time we got home, my outlook on everything had changed. I loved my family, I loved my house, I loved the winter wonderland that peered in on us from outside the window. Even the sun had come out.

The next few days were perfect. Family, presents, songs, health, and good food were all enjoyed from our comfortable home, no longer taken for granted.

Jonathan sported the size 9 month fuzzy jammies his grandmother had gotten him, and the reindeer hat and socks I'd bought. I'd wanted to get him cute Christmas stockings, and my choice was easy. He's still in size 2 shoes, and the only sock-hat combination that didn't say "Baby's First Christmas" was the reindeer variety.

Merry Second Christmas, Jonathan! We love your curiosity and your smile. We love that you love hanging out with us.

For me?!

Adults just don't get computers like kids do these days.

How could I have NOT noticed this last year?!

Without my glasses everything looks fuzzy and bright!

Christmas Jammies

My aunt came to visit. She's one of my favorite people.
She fist-bumped me when I was only a NICU baby.
She bought me my first graduation gown.
She sounds like mom and is really nice.

Learning to squint for photos, just like dad.

Sometimes the gifts we get look scary at first. Like ice storms that take out power or a baby who comes too soon.

But when the your feet land firmly on the ground again and you get a chance to look around, sometimes - just sometimes - what once started out cold and unexpected has turned warm, leading us to appreciate life and all we have all the more.

We have been given so much. Merry Christmas, friends!

Friday, December 27, 2013

Christmas last year - reflections on advent & prematurity

Last Christmas my son had come home. Most pictures of him showed off unsightly tape and his NG tube -- the plastic tube that went down his nose into his stomach. The way we gave him food. We kept practicing with a bottle and were fairly sure that he'd be able to be off the NG tube all together (and probably breast feeding exclusively) by March. We were sure of it.

We were wrong.

But that's beside the point. After six surgeries and countless prayers, we had our July baby home with us in time for the holidays.

Steve's sister flew into town with her husband. We reserved a spot at a near by hotel in case they had sniffles. We told them that if they had even slight sniffles, they'd not be allowed in our house. Doctor's orders. We'd gotten them a room with a suite so that the girls and one of us parents could go see them and play games throughout the holidays.  Thankfully, sniffles they did not have, so we canceled that reservation and they lived in our basement for a few days.

Jonathan celebrated Christmas by giving me his third "real" smile in his lifetime. Precious.

And as we reflected on the birth of Christ, I penned this note to family and friends:
A final advent note

Thank you for following our story.  Thank you for walking with us.
Jonathan's first name means "gift from God."  It's a name that was placed on my heart before he was born.  I didn't particularly like the name before all this (no offense to all the Jon, John, and Jonathans out there) but I couldn't shake the name from my head when we were trying to come up with one for him.  The name "Amos" was one Steve suggested, it means "borne/carried by God."  "Amos" has been his story this far, and "Jonathan" the promise that carried us through.  God gives good gifts, and even when we did not know if we would be ever able to take Jonathan home with us, we clung to the truth that God is a good and gracious God that was with us and that knew our child. 

It's Christmas season, so I can't help but think more about gifts and gift giving.  "Emmanuel" (God with us) was the greatest gift we were given.  We've felt the greatness of that gift so much more in the last several months.  His presence assured us that we were not alone.  His Spirit reminded us that He knew our child, that no matter what happened, He was with us.  THAT, my friends, more than the miracle of Jonathan's life, is what carries us now.  We have a good God, who is with us and knows us, and gives good gifts.  May that peaceful inward assurance carry you this Christmas season.  May this be the gift that you are daily given.

We were grateful for each day that we had Jonathan in our lives, as there was a time we thought we wouldn't get to know him. It is by God's grace, not any action of our own, that Jonathan now sleeps under our tree.

Our child eats, breaths, sees, and grows.  He is with us still and now is in our home.  Слава Богу.

We are amazed at how great God's gifts are to us this year.


The gifts God gives often are on hard-to-walk paths. Jonathan's life taught us that. But he's not the only one. It was taught to us by Joseph when betrayed by his brothers, by the Israelites as they left slavery only to walk the desert, and (fast forward a ways) by Christ's example in life and in death.

But God's gifts are also good. I don't understand it, I cannot solve the problem of pain, it seems so much like a contradiction, but there it is. Over and over again in the fabric of time, the same theme. Asked to do the impossible. Pain. Healing and redemption.

Knowing this does not stop me from mourning or weeping or crying out to God in anger and pain at the many many injustices that are never explained. But I do push forward, hoping to see more, hoping my hands will have some part in it all. I don't understand the story, not fully. Maybe some day I will.

Saturday, December 21, 2013

Of labeling a child -- because words matter

It all started about a month ago.

"Hey, Steve," I said look at him across from my way-too-smart phone, "Did you know you were a special needs child?"

I had stumbled upon a support group for parents of babies with EA/TEFs. That is, with the rare birth defect that almost took Steve from us over three decades ago -- before he was yet a day old. The aftermath of that surgery, that defect, continues to be his self-described Achilles heel to this day.

Reading the stories on this support group was much like reading the blogs and tweets and chats of parents of premature babies. Lots of worry, rejoicing at successes, uncertainty about the future, doctors appointments and unanswered questions. And all these parents were talking about their worries for their special needs child.

That label. I'd never applied it to Steve. I don't think Steve had ever applied it to himself.

My husband describes his childhood a lot of ways. He talks about how one of the best things that happened to him was his mom holding him back and not having him start kindergarten until he was six -- and then home schooling him for that. "I was too shy," he would say. He then goes on and talks about how he was friends with everyone in early grade school, and then how he lost the popular status in fourth or fifth grade when he refused to exclude the less desirable classmates in school yard games.

He describes his middle school years by how he sort of dated this one girl that I also knew and how he loved band.  He describes high school by his debate days and a memory of seeing this attractive girl dressed as a hippy playing Peaseblossom in the high school rendition (1970s style) of A Midsummer Night's Dream. (Yeah, that was me.)

He has never, ever, described himself as a special needs kid.

He has talked about how sickly he was and how he learned to love reading because of his many many days home from school. He talked about how amazing it was when his mom finally found a doctor that understood his lung issues. He talks about how to this day when he starts to get sick he HAS TO take it easy because otherwise he won't recover for weeks or months.

But special needs has never crossed his lips.

Until this day, when I stared at my phone and stared back at Steve and announced that he was special needs.

"I guess I was," he said.


This conversation opened up new possibilities for me. A world where we don't define ourselves by our disabilities.

I've been struggling with how long to consider Jonathan a "preemie."

"As soon as he outgrows his preemie issues," was my initial thought. "As soon as I don't have to explain anymore."

But then came the rub. He will likely never outgrow his special needs. He will always have glasses.  He may see five specialists a year and have to take inhaled steroids to stay well. He may spend a long time struggling with simple tasks like swallowing food or learning to speak.

But so did his dad.

He may always be small. He may have issues with gross motor. He may never be super spatially aware. All these thing that would have been different if he'd not been born so early.

But, to an extent, same with his dad. Steve has had to bend many things in his life because of one small thing that had him have surgery shortly after birth. We cannot have pets. We cannot have wood burning fire places or heavily carpeted homes. We have to take illnesses seriously, because they migrate to his lungs.

So yes, my spouse has special needs. The label applies to him. But it's something he has, not something he is. All the doctors, all the specialists - they were and are a part of his life, but they did not and do not define his life.

My girls love the doctor's office because when they are done, they get a sticker.  One child chooses to put that sticker on the front and center of her sweatshirt immediately. Usually it doesn't come off, gets thrown unnoticed in the wash, and there's a sticky spot on the sweatshirt with little paper bits stuck to it for months.

My other daughter keeps the stickers. She doesn't put them on her shirt, she holds them and looks at them and puts them away in her backpack and then finds them again months later.

Both my husband and my son got stickers at birth. The stickers say "special needs."  If I put that sticker on them, I find myself saying things like "Well, you know, he is a special needs child."  When we put that sticker elsewhere, it ceases to be the first thing we see. When we do find the sticker in a medical chart or a realization that the camping trip won't work if we can't get a smoke-free cabin, we say something like "well, he can't be around smoke, because he has lung issues." Or merely, "he has special needs, so tent camping isn't a good idea."

Did you notice the difference?  When the label is put ON, he "IS" special needs. When the sticker merely exists, the sticky residue doesn't define the person, we don't always see it. He merely "HAS" special needs.

I have a friend from high school. She is a person with albinism. She insisted in high school that she was NOT an albino. "Well, yeah, you are," some people would say, "because those two sentences mean the same thing."

I learned from her that they don't. One ("I'm albino") puts the label as the forefront of your identity, the other ("I have albinism") describes a medical condition that may impact a few aspects of your life but doesn't change the core of who you are.


Steve isn't his Achilles's heel. He's just STEVE. Funny, intelligent, amazing, empathetic (even though he says he has a cold heart on account of being an economist).  Not special needs. Just Steve.

We're making a choice for our son. He's going to have to see specialists, yes. He's going to have a slightly more abnormal life than most little kids, yes. (Heck, he already has.) In that sense, yes, he's going to have special needs. But he's not going to be special needs. Because we can choose where to put the label. And as Steve has taught me, where the parent puts the label shows the kid who they are.

It IS so important that he have these medical labels, they help us know how to care for him. They help make it possible for us to give him as full of a life as possible -- even if it's not "what it could have been" -- even if he never outgrows issues from his prematurity.

I cannot discard the "special needs" label. But I don't have to place it at the forefront of his identity, either.  I can hold it in JAM's charts that I carry with me. In this way, I do not ignore his needs or pretend everything's "fine," I have him treated and followed so he can develop as best as possible, but I also don't define him by these needs.  JAM's dad has shown me - I can care for JAM and yet never leave him with the sticky residue of "23 weeker."

Because beyond all the medical labels we've collected for him, picked up at doctor's offices and specialists appointments, underneath all of that Jonathan is JUST Jonathan.

Monday, December 16, 2013

Today: my son is a minion

I didn't mean to, but I think today's outfit was the perfect blend of a minion meets a mime.
I've been laughing at this all day. Had to share.
Here is JAM at PT practicing his standing.

First day home -- a preemie's adjustment to life away from the NICU

Once again the text from our care page a year ago gives a much better view of our lives a year ago than I could recreate on my own. So, take a peek with me into our life a year ago, will you?

Life at home

Written Dec 14, 2012 1:29pm by Laura M

This is particularly long.  I have a few free moments while Jonathan is lounging/napping under the Christmas tree in a bassinet made by friends.  The girls and Steve are at church.  J won't be able to join them until cold and flu season is over.  So, while the house is quiet I'll update you.  And since I don't know what you wonder, I'll spill out as much as I can.  Feel free to skip around.

1 - Jonathan's reaction to home life
2 - Are you sleeping?
3 - What is Jonathan like?
4 - What is coming down the road? (surgeries and follow up appointments)
5 - How are the girls doing?

1. At home

Jonathan spent most of the day Thursday and Friday awake, trying to figure out this new world.  He slept fine Thursday night, but then Friday refused to nap.  It seemed that part of the problem was that he wasn't quite sure WHERE to nap.  So many choices, and none of them had his favorite mobile (a hospital-owned one).  Where were the safe places for sleep?  Plus, where was the dinging and the muted crying from next door and the voices of the doctors and the nurses?  Things were too strange.  Too silent. He worked himself into a cranky fit -- the first time I've seen that -- and then finally found the one place in the whole house that was familiar to him -- my arms.  I put him in the moby-style wrap I'd made for Mimi (don't worry, it's not pink) and he was asleep within minutes.  I wore him for most of the rest of the day, grateful that he didn't have wires on him any more.  Longest kangaroo care time ever.
After that, he got used to the sounds of our house.  He has slept soundly for the last day and a half. Last night he even slept through two of his care times.  (Unfortunately, we still have to get up and feed him through a tube.  He is too little to sleep through the night without nutrition.)

We are very grateful for the feeding tube.  He's still only taking half of his feeds, at best, by bottle, before he'll tucker out or start breathing too fast or choking.  This little tube of plastic saves us the common worries about whether or not he is getting enough to eat.

2. Are you sleeping?

Yes.  Some.  Thanks to a fantastic partner and a freezer full of milk, we are doing well.  We start at 8, after the girls go to bed, and switch off who is in charge for the 11, 2, and 5 am feedings.  If we start sleeping at 8 or 9 pm, by 7 am we've gotten around six to seven hours of sleep, and hopefully at least five of those hours have been uninterrupted.  Jonathan DOES know the difference between night and day -- although he seems to think that "night" begins at 11 pm.  This is likely our fault, as we were often at the hospital until 10:30 pm or so.  Who wouldn't want to stay up to spend as much time as possible with mom and dad?  He's also most alert during the 9 am - 12 am time slot -- the morning times that Steve would often visit three times a week.

3. What is Jonathan like? 

Very content.  He cries at gas bubbles, a hungry belly, dirty diapers, and when he is too hot or cold -- much like most babies. He's more likely than most to choke on his food, so we have to be careful.  He's very alert when he's awake.  He likes to look into our eyes -- something that three short months ago I wasn't sure he'd ever be able to do.  He maintains long eye contact with us, closes his eyelids briefly in response to questions, looks like he has something to tell us, and is very patient with us once he knows we are working on meeting his needs.  (Unless he's REALLY REALLY hungry -- in which case the cries come out.  We waited for months to hear those cries, though, so we look at the cry as a sign of accomplishment.  As his visiting nurse said yesterday, "look at him exercising those lungs!")

Jonathan is on track for his adjusted age (1 month).  He can turn his head from side to side while lying on his belly; although like most preemies he is more likely to lift his hind legs than his head during tummy time.  He has, as we've noted, smiled at us on a few occasions.  He seems just as startled as we are delighted by these few real smiles.  He grasps his hands together from time to time, and is (as his occupational therapist noted) "the best non-nutritive (pacifier) sucker in the NICU."  Quite the accomplishment for a 23 weeker!  He can keep his gumdrop-style pacifier in better than my full term babies ever could.

4.  What's down the road?

Jonathan will be followed by nine different offices.  His pediatrician, a visiting nurse, a urologist, a surgeon, an eye doctor, a developmental specialist, an early-intervention clinic, an occupational/speech therapist (to work on feeding issues), and I will be visited by someone from a NICU follow up program.  I think that's it.  These folks, in general, want to see him/us somewhere between once a week and once a month for the first several months.

Jonathan likely has two more surgeries to go.  One for an incisional hernia near his tummy surgery site.  Umbilical hernias are common for babies and often self-resolve.  Incisional hernias are a rare thing -- his pediatrician says it is the first one he's seen -- but at the moment it is not hurting him.  It stands a SMALL chance of getting better on its own (but so far it has only grown bigger) and the surgeons want to wait as long as possible to repair it, as the bigger a baby is, the less difficult the surgery is for them.  We can see things move through his belly -- it is very odd.

Closer to one year of age he will also will have to have one small and common procedure due to a very mild birth defect that is common in males, and more common in preemie boys.  This should not be a big deal, but is one more time down the road when he'll have to be in surgery.

So we aren't out of the woods for surgeries yet, and we are swamped with appointments, but the road ahead looks a lot less scary.

5. How are the girls doing?

They are delighted to have their brother home.  Ella loves that she can kiss his head whenever she wants to. Mimi has had to keep her distance because of an illness.  She's not been herself lately because of her broken collar bone as well.  We hope that both those issues resolve soon enough and we can get a picture of all the siblings together.

It is hard to know the balance to walk between protecting Jonathan from illness and allowing his sisters to interact with him normally.  There is a lot of hand washing and hand sanitizer in our house (or "handzitizer" as our girls call it).  The girls are also a lot happier now that we are ALL in the same house together in the evenings.

Sunday, December 15, 2013

Day 150: Family JAMboree - the homecoming of our son

Steve and I got to the hospital after we got Ella on the bus and Mimi off to daycare.
In cap & gown

We chatted with the nurses and confirmed that he'd had a slow night. It was not only slow, but he'd taken his entire meal by bottle that evening. It was as if he wanted to prove that he was ready for home life. Granted, he'd still come home on a feeding tube, but we had good reason to believe he wouldn't have it for long.

He weighed 6 pounds, 10 ounces. Not bad.

I went about distributing chocolates, thank you cards, and birth announcements as well as pictures of Jonathan in his graduation gown to all the special people who'd helped bring us this far.

Steve began to pack up everything. It is amazing how many things a baby accumulates in a hospital room after five months. His locker was not full - but we found ourselves with bags and bags of hospital gear, including about half a dozen pink buckets that had been used for this or that and would be tossed if we didn't take them. And shampoo, about a half a dozen half-used and then forgotten diaper creams (we are still going through our hospital stash a year later), feeding supplies, pacifiers, blankets, baby clothes, hats - both those he'd outgrown and those he still wore, momentos from big accomplishments, and a lock of hair from his first "haircut." Oh, that was a tragic razor-to-the-scull occasion from before he'd gotten his central line in. They'd run out of spots to start an IV, so they went for cranial veins. The vein under the shaved haircut had failed, and so they'd ended up putting a unicorn IV on him instead - middle front of his scull. Those were days we were glad were behind us.
Tossing the cap!  Let's get out of this joint!

The nurses and family specialists had gotten us a button to wear. It said "I'm going home today."  We wore it with pride. At his meal times we fed and changed him. And we then did a bit of waiting.

Mid-morning the doctors did their rounds. Around 10:00 a doctor dropped by to give us Jonathan's discharge papers. It was the length of a short novel. He worked through each page with us and made sure we understood all the medical stuff that had happened to our son over the past few months.  He made sure to go over with extra detail all the unresolved issues, like the incisional hernia that had sprung up after the ileostomy reversal, and the extra surgery he'd need at closer to a year old for a small birth defect that had been found a few months earlier.

There were a few surprises -- like I didn't know that in addition to the PDA, Jonathan had a PFO - a heart murmur that would probably resolve itself before his toddler days began -- but mostly it was just rehashing what we already knew. It was a very good review. I go back to the book even now to remind myself of near-forgotten terms or important details. I used it to figure out when his last blood transfusion was. It was an important detail, as he kept failing his newborn screen because his blood still showed adult hemoglobin - left over from his transfusions and not fully worked out of his system. We didn't get his newborn screen cleared until he was around nine months old.
Feeding him one last time before going home.

After going over the book, the doctor took another look at Jonathan. He smiled. Then he looked back at me. "You know..." he said, and then he stopped.


He expressed that he didn't know how to say what he wanted to say -- he wasn't sure he should say it.

"Go ahead!" I said. After 150 days of this, I could take almost anything.

"Well, do you know that in some areas of the country - what I mean is - did you know that sometimes some hospitals don't resuscitate babies born at 23 weeks?"

"Yes," I said, "I know."

"Well, Jonathan is a perfect example of why we do." Then he called him a miracle. It wasn't the first time we'd heard it, but it was the first time a doctor had said it. Over the next year we'd hear a handful of other doctors utter those words.

I'm so glad you gave him the chance, and us the choice to try. Thank you, doctors, for being a part of this "miracle" in the making.


We then had a meeting with the discharge nurse. She talked us through all the appointments and follow ups he'd be having in the next few months. She showed us where she had scheduled the appointment for us. She explained the places where we'd have to call first. There was a spot in the big book-binder of his medical history where we put business cards to help keep things straight. I cannot express how important that binder became to us in the following months.

Just like that, I became a personal secretary to a five month old. And even though I'd worked in administrative roles for over a decade, I needed every bit of knowledge I'd acquired to keep on top of his schedule.  Nine offices wanted to follow my son anywhere from once a week to once a month. NINE. Some were generous enough to stretch it out to once every three months after our first post-discharge meeting.

I was glad I'd gone down to half-time work.


By this point it was nearly 1:30. Steve and I were hungry. Jonathan's noon care time was done and he was napping with a full belly.

"Can we ... um... we really want to take him home, but, can we eat first?"  We tentatively asked the nurse.

"Oh, go for it!" she said, "Take your time!  No one else needs his bed right now -- and this might be the last good meal you get together."

So we snuck down to the food court.

We were back within the hour. We got everything set and gave Jonathan one last meal. By 3:30 we were home.

After we both scrubbed in to our own home, Steve picked a wide-eyed Jonathan out of his car seat and started off our homecoming party with a house tour.  He first introduced Jonathan to Rosemary, the unsung member of our household - a gigantic rosemary plant that Steve loves and I think is ... well, gigantic in a less-than-complimentary sort of way.

Steve explained to Jonathan that Rosemary had bloomed for the first time ever (in her four year life) that month - just for Jonathan's homecoming.

Jonathan was either over- or under-whelmed. He fell asleep.

So Steve handed him to me and went to pick up Mimi. Ella was in an after school activity and wouldn't be home until dinner time.

Here's Mimi's reaction:

Jonathan slept well that night. The adventures of leaving the NICU and then being put into a new and unfamiliar spot were enough to wear him out.

Saturday, December 14, 2013

Day 149: T'was the day before J's homecoming...

(alternatively titled: "When it rains in our family, it pours")

Twas the day before JAM’s homecoming, where all through the house
All his siblings were stirring. They woke up the mouse.
The stockings were hung on the wall over there
Jonathan soon would be home and at them would stare

The children were searching all over their beds
For old lost stockings that were on their heads
And I in my robe and pa with his tea
Were also wondering where the girls’ socks could be

When in the girls room there arose a thunk and a clatter
I sprang from the basement to see what was the matter
Away to their bedroom I flew like a flash
Tore open the door to see what’d made the crash.

And there on the floor with eyes wild with tears
Lay Mimi and her monkey and absolutely no sneers
The scream she emitted had me to fear
For broken bones on my little dear

She’d climbed down her bed stair so lively and quick
Mimi and monkey and that’s how she slipped.
More rapid that eagles I scooped up my child
And threw on some clothes, and left my hair wild.

We sprang to our car and to the hospital we drove
Faster than if we'd been burned by a stove
Being brave
To Children’s we’d go, not the nearest this time
We knew that there they’d spare not a dime.

To make Mimi happy and make her forget
They’d have her watch Dora and stickers she’d get
Into an CT machine to see her small head
And then there she lay on a hospital bed

Three floors under where baby brother was
We found out that screaming was all because
Of a necklace she’d left on the rung of the ladder
On that she had slipped. That was the matter.

But, we thought, a silver lining there might be
A trip to the NICU –her brother to see.
Arm newly slung and clavicle set
We went up four floors and in the NICU we met

Her darling baby brother, snug but alone
In his hospital bed, but soon he’d be home
Mimi smiled at the sight of her dear baby brother
Home soon for first Christmas along with the others.

We drove now away and toward the hospital we cried
Soon in our home, dear brother you’ll abide
There your sister will be careful to keep her things off the stairs
Because I think we’ve had enough of holiday scares.

The next day -- all was set right!
Baby brother was home
and Mimi's sling was set tight.
Two healing children in my home did lay
And I was so happy that this time they'd all stay.

**Two rules I had for my girls and bunk beds. Just two. 1) Don't put anything on the rungs of the ladder 2) Don't climb down the ladder with anything in your arms.  Mimi managed to break both - and her arm - at the same time.  The monkey she held was a GIANT plush monkey, about half her size. If things had gone better, the monkey might have broken her fall... alas, he did not. So sad for us all!

Wednesday, December 11, 2013

The dilemma - going back to work?

A year ago I was on day two or three of training in a new employee. She had come to our offices for our annual holiday party and been ushered in with joy. Now it was time to teach her my job. In under a week. Because Jonathan was coming home any day, and I was going to take the rest of my maternity leave, so she'd have to start quickly. 

This all was a long time coming.  Let's back up and see how we got here.

First, note (from my July posts) just how much I love my job. My plan had been to put baby into daycare at three months old and return to work full-time.

Then baby was born four months early.

Then I had to go back to work after eight weeks of leave because I wanted to have SOME leave time left for when JAM got home from the hospital. He'd be coming home as a four or five or eight month old, yes, but he'd still be functionally a newborn. I needed to have eight weeks for myself to heal, then another three to four weeks to survive the sleepless nights. I wished for the days when I could do both together.

For friends and followers from other countries: in the States your job is only guaranteed for three months of leave through the Family Medical Leave Act (FMLA). You can spread that leave time over the entire year (take some time off here or there) but there is no legal protection for your job past that. That time off does not need to be paid, and so often for lower skilled jobs it isn't. In my case they would pay for the eight weeks of personal recovery, the last four weeks would be unpaid time.

So I went back to work shortly after J's renal failure, just before his eye surgery.  My hubby stationed himself at bedside and did work from the hospital room twice a week so that we were sure to have someone there sometimes when the doctors did rounds.

I called Steve for a report, or the NICU nurse if Steve wasn't in, two to three times a day, usually when I pumped.  I packed myself up, stood up from my desk, and went to the work-provided pump room, a delightfully cozy room in the basement of the chapel with a skylight that brought in natural sunlight, and a locked fridge and cupboard to store your milk and pump. It was awkward if I had to kick some poor praying student out of the room(usually they thought it was a prayer room, because of its location), but overall it wasn't so bad. And that's when I'd call, ask for room 317, give the nurse his security code, and ask for an update.

In the evenings I'd go home and have dinner with the girls and Steve.  Steve and I would then draw (metaphorical) straws to see who would stay home and put the girls to bed and who would go into the hospital and spend two to three hours holding JAM and getting him weighed, fed, and ready for bed.

Usually Steve would defer to me. Because he's a gentleman that way. Plus, twice a week he had guaranteed guy time with JAM while he graded papers at crib side. So if I felt particularly drawn to the NICU, I went and Steve stayed home. But it wasn't every night, because every now and again I'd feel my daughters pull at my leg and beg me to stay and cuddle with them.

This was our routine all of September and into October. And we waited. As the doctors say, we waited for things to "present themselves." Would he live? What would his needs be? It was too hard to guess. We didn't know. So we waited and carried on, making our new routine our new normal.

And then, at the end of September, JAM stabilized. We were fairly sure he'd live. 

By then I knew enough to know preemies like Jonathan don't just bounce into babyhood. They have to be gently cajoled into doing the things that their peers would do naturally.  They spend many months or years seeing physical and occupational therapists to learn how to move, eat, and talk.

And they're fragile. Very fragile. With underdeveloped, scarred lungs and no bonus of antibodies from the third trimester, things can get dangerous for them quickly. So he wouldn't be going to the daycare I'd picked out for him almost a year earlier. It was too risky.

Thu at the end of September I approached my bosses (I'm lucky enough to have two) and explained to them my dilemma. I couldn't work full-time and maintain the schedule Jonathan would keep if he came home. Steve's job made more than mine by leaps and bounds, so it made most sense for him to hold primary bread winning responsibility. I guessed our son would be seeing a lot of different doctors and may specialists. I guessed because I'd read other blogs and posts in forums about preemies. And because my friend, a mom of triplets, had JUST posted that her two year old son had finally graduated from PT.  That's what really did it. (Thanks, Janice!) It was a cold blast in the face. He wouldn't have a "normal" infanthood, I guessed. And I guessed right.

I told my bosses that I'd either start seeking part-time employment elsewhere or, if they thought it possible, I'd be open to turning my position into two part-time positions.

They liked the last option best.

But it had to be approved by a cabinet that met once a month. And the first month, they didn't get that far into the agenda. So it wasn't approved until November.

And then we worked really really fast. I wasn't a part of the hiring committee officially, but they let me hold an exofficio position as I would be working most closely with the person hired. I laid out an ideal interview schedule and showed how we could get the person interviewed and hired within the month. It would be difficult, given the holidays were coming up, but it was clear that if we didn't get it done soon, Jonathan would come home before I had had a chance to show the new person the ropes.

Little did we know the woman we'd be hiring had had this sense -- months before (like, the month I got pregnant??) that it was time to give up her full-time job at home and seek out-of-the-home employment.

So she'd been waiting.

And she was perfect.

And a year ago, I finally finally (none too soon) was transferring my job from a full-time to a half-time position.

And when I took my baby home, I could stay home with him.  No more worrying about the work that was piling up at work. 


Looking back now, we made the right decision to have me drop to half time. Sometimes I wish I could have pulled out entirely. The cost of nannies in our house the first half a year that Jonathan was home was steep. It was hard to find someone who was reasonably priced but also not afraid of the medical equipment that Jonathan brought with him. Luckily we found two, and each was available for one of the two full days I worked. Steve took a half a day, and we were covered.

This past year we've gone to a small in-home daycare for JAM. It would be best for him to be at home only, but last year showed us this wasn't a reasonable expectation. His daycare provider has been gracious with us, even giving us "free" days sometimes when Jonathan has gotten sick.

I don't begrudge work, though, I am glad I have it. I enjoy my colleagues. The balance is perfect, and Jonathan's immune system is holding up better than we'd expected.

But working full-time.  That wouldn't have worked. We spend an average of three hours per week going to or in appointments.

I am grateful for the wisdom to pull out, and the timing (albeit slower than I would have liked) of the transition.

And I am grateful that when push came to shove, we always found the perfect person for the job - whether taking over part of my position at work, or taking care of JAM at home. To the three amazing people that fulfilled those roles (you know who you are!) THANK YOU.

Sunday, December 8, 2013

JAM today -- 16 (almost 17) months old

I realized that I've been playing old hits lately, and haven't given any updates on the current state of JAM.

Mostly this is because I'm so delighted to be finally at a point where everything, EVERYTHING happening in the NICU a year ago was fun and exciting, so it's not so hard to look back. PTSD and flashbacks, BEGONE!

But last week a brave response from a reader in my post on questions of viability for 23 weekers reminded me that I haven't really talked about him NOW that much. And maybe that'd be a good thing to do.

I know friends and family want updates. I know some of them want to ask about his abilities, but feel afraid to do so. Friends, it's all a matter of wording. Ask "What's he doing these days?" and I'll brag. Ask "Will he be normal?" or "Is he special needs?" and I won't know how to answer. I know you want bragging points, but it's not that simple, so what you'll get instead is me mumbling something out,  probably over-explaining and definitely feeling a bit uncomfortable. Can you blame me? He's alive and he's thriving, and THAT to me is enough. What would you say?  He's just JAM. My semi-perma-baby-but-finally-growing little-buddy JAM. He's one of the easiest going, funniest little babies I've ever known. (And if you are from our grad school days and knew Ella as a baby, you know that's saying a lot!)

His favorites are his sisters, with mom and dad taking second-best. He thinks tickles are amazing. He gets them every night for bedtime, and he'll remind us if we forget. When we change his last diaper of the night, he'll say "icgle" and "awrawrawr" (the sound we make when we tickle) and pre-emptively raise his shoulders up and start smiling -- he knows what's coming next. If you'd met him in person, you'd be in love.

So now on to cute pictures and some stats - my blog version of over-explaining. In/while short, he's pretty amazing. (And, yes, Grandmas everywhere, I do wish I'd removed Mimi's shoes, that scrap of paper, and their friend's birthday present from the background before filming. But alas, at least the floor was MOSTLY clean...)

A snapshot of JAM at 16.5 months

26 inches, 16 pounds 4 oz.
He fits well into 6 and 9 month sleepers. So, still small, even for his adjusted age (12 months). While we aren't sure why, it seems like these sorts of statistics are pretty typical for babies born at 23 weeks gestation, so we aren't too concerned.

He takes all nutrition by mouth, but he's picky. The only table food he'll get excited about are soft roasted beets. Otherwise we fill his tummy with purees and teething biscuits as well as a toddler formula (that is like an energy shake for babies).  He has a g-tube (feeding tube) but we've started the three month countdown for removal, and it will probably be out by February or March.  He's starting back into feeding therapy to learn to accept (and not force-vomit) other textures.  Feeding therapy helped him get to where he is. He didn't take a bottle consistently until he was about 10 months old --mostly because he remained tachypnic. He didn't take purees well until 11 or 12 months old.  He'll chew on toys now, but that is because he knows they won't go to the back of his throat.

He can say a handful of words. "Amah" is "mom," and "muh" is "milk." Yes, it's hard to tell the difference between the two. I usually hold up a bottle, and if he starts waving his arms wildly, I know he meant "milk."

"Ubp" is "up," "Eahhhya" is (Ella swears) "Ella," (although as that's his favorite string of vowels, it seems he says her name a LOT), "pah-pah" is "please change my diaper, I think I made a stink," "a-go" is "go"and "owe" is... well, both the best pronounced word in his vocabulary, and also very sad to hear. He doesn't cry much, but he will moan "owe," interspersed with little whimpers and snuggle his head into my shoulder when he's having a particularly rough day.  Ear infections are a common cause.

In occupational therapy he just graduated from some vestibular training combined with training to help him learn to turn his trunk and reach across himself for toys. Prior to that he wouldn't catch himself when he started to fall while sitting, because he was very unaware of where he was in the world. His startle reflexes were off a bit in the NICU a year ago, too, so we weren't super surprised, but it was hindering his ability to learn to manipulate the world. He's all better now. See the video of him sitting up?  Isn't he amazing?

He can stand and walk if he's holding on to something, like our fingers. He's still working on crawling. He wears ankle-foot orthotics to help stabilize him and develop his walking muscles as he's still quite a bit (4 months) behind on gross motor. Mostly we believe this to be a result of many many gut surgeries, the last of which was when he was an adjusted age of four months old. Hm... the math sorta makes sense.

To help him catch up (in theory he has eight months to go before he should be like a normal two year old), he's going to OT and PT appointments once a week and he has an early intervention teacher come to our house for an hour each week.

Doctors/Specialists (seen about twice a year each)
JAM gets to hang out with:

  • A nephrologist to follow up on his kidney failure from a year ago and (unrelated) kidney stones and (possibly related) hydronephrosis.
  • A pulminary nurse for his chronic lung disease, which so far only presents as fast-breath when he gets a cold. It is well managed with a twice daily puff of inhaled steroid and PRN albuterol (just when he gets sick).
  • A developmental pediatrician and a dietitian in the same office. They're keeping an eye on his "failure to thrive" status.
  • An optometrist because he's nearsighted. They also follow-up on any issues from the scarring from the surgery for retinopathy of prematurity

In short, he's a joy to us. But not only that, he seems to REALLY be enjoying himself.

Yes, he has appointments galore to try to catch up, but this just means that we're not entirely home-bound during RSV season. That's my silver-lining, at least.

Some things he's accomplished since birth: able to open his eyes, breathe on his own, take from a bottle (this all in the first three months), able to roll over, take food from a spoon, recognize his name (all by 9 months), no more preemie arms, lessening of oral aversion, able to rock on all fours and walk with assistance, able to respond to gravity and to language. Able to imitate word sounds / has a few words in his own vocabulary (all by 16 months).

When compared to my daughters, both of whom were, without much help from me, walking by 10 months and had a vocabulary of over 20 words by a year old -- yes, he seems behind. But compared to himself? I'm awfully impressed. He wants to learn, and we're working daily to get him to the next step. It's a terribly fun journey. I'd skip the first four months of it, and maybe the March and June surgeries, but otherwise it's been great.

Saturday, December 7, 2013

Day 147: Final exams and holiday shopping -- NICU style

Sneaking on his cap and gown a few
days early
A year ago , December 10, 2012, I was Christmas shopping, NICU style. I was preparing a bundle of goodies, not so much to celebrate Christmas, but to celebrate JAM'S impending graduation. I had snuck Jonathan's graduation gown on him and had taken few pictures in the NICU. Then I went to the store to get a ton of prints of Jonathan wearing his cap and gown with his name embroidered on the front. "Jonathan, NICU graduate." Seriously, if you want to get a celebratory item for your friend whose child is having a NICU graduation, THIS is it. Having it embroidered was extra special.

First final exam EVER! Just a little scared (carseat test)
I would be handing these, along with chocolates, out to everyone who had helped get him here -- the NICU nurses, the social worker that I'd come to appreciate SO much, the doctors, the therapists (respiratory, physical, and occupational), and even the really amazing cleaning staff who probably quite literally helped save Jonathan's life, just by doing a good job at their job. (I went back to the NICU a month ago -- I can't remember why, I think I was dropping something off for a friend -- but a custodian I barely remembered remembered both me and my son by name. Shocked my socks off. I guess a bit of gratitude goes a long way?)

Dr. Dad is trained in helping undergrads feel more prepared
during finals week. Here he counsels his son on surviving
his first ever final. You can pass this test, buddy!
JAM WAS going to graduate. Yes, he was. Two more tests (car seat & apnea/bradicardia monitor test) and his finals would be done. It was a matter of days away now, if all went well. And while I wasn't sure if it would be within the week (it would, barely), I was nearly confident it would happen before Christmas.

About his final exams:
Carseat -- could he sit up in the carseat for many hours without having an apnea or bradicardia event?  Would he remember to have his heart beat and breath, even in such a strange position?  If so, we knew he'd survive the trip home.

Monitor -- He was put on an event monitor for several days. It recorded every event he had (apnea and bradicardia episodes).  Basically they wanted to know if he was breathing well and if his heart was beating okay. If he passed, we could go home without a monitor for him. I had heard that the home monitors often gave false alarms and kept already exhausted parents up much of the night re-positioning or rechecking, so we hoped that his central nervous system was enough developed that we didn't need one of these.  Either way, we were glad we'd know for sure by the end of the week.

See, sometimes, to pass a final, all you've gotta do is breathe well and keep your heart beating. (Be inspired, oh college students... be inspired. You, too, can make it to the holidays.)

Remember the duck from the summer? This shows how he's grown.

Wednesday, December 4, 2013

Day 138 - 146: Happier days in the NICU

He had just needed to get over the last hump. He was so close. I knew that.

Even so, I was surprised at how fast things clicked into place. I was still seeking counseling for post partum anxiety or PTSD, and my son was leaving that whole world so very quickly behind him.  I said it was like he was running his own couch-to-5k, surprising all of us by his speedy progress. Every day he added to his list of accomplishments, and there were whispers of a homecoming.  He was going to graduate.  I stopped posting as much on his care page (where I typically put all the most depressing stuff) and I started bragging about my cute baby on social media sites instead.

Some serious guy time.
When JAM's dad got his PhD, I was glad. When I got my MA, I was tired. When Jonathan got his embroidered cap-and-gown from my sister, declaring him a NICU graduate, I nearly cried. I put it aside, full of pride. He was GOING to make it. And he would wear this cap-and-gown. I put it in his drawer at the NICU (you all can see it on the anniversary of his graduation day - it's less than ten days away!) Then I picked him up, just like that, just picked him out of his open crib and rocked him in my arms at bedside. I didn't even need to ask a nurse, I just needed to be careful of the monitor wires.  But even that didn't concern me. I'd been there long enough that I knew how to reattach them if they got pulled off.

He held his own heat. His monitor barely alarmed. He looked up at me and knew me. I called the nurse in to weigh him. Then I sat down in the rocking chair and took out a nipple shield. Maybe he'd take a little milk from me this time. We'd know if the scale went up when we weighed him after nursing. Sometimes he got a few mls on his own.  And when he didn't, we'd feed it through the NG tube while he was in my arms, so he'd "get the idea."  Perhaps my pumping days would go away after his NICU days ended.  I sang to him, I tucked him in, I wasn't afraid any more.

Some of what Jonathan accomplished in his fifth month of life (before he was a month out from his due date):

Only an NG tube, with a "so I can get my milk" mustache (of tape)

  • He was up to 5.75 pounds - and then a week later six and a half pounds. That's HUGE. My friend said "That's like the size of a full-term baby! ... A small full-term baby, but still, I've had friends who had babies that size."  'Bout time. He was only 4.5 months old.
  • He held his head up and moved it from side to side while on his tummy.
  • He was eating about 16 of the 50 mls (or about half an ounce) of food by bottle. His occupational therapist said he had a better suck than most preemies. I blamed his love of his pacifier.  He often was breathing too fast to take a bottle by mouth, though, so there was talk of having us trained in NG tube placement so we could thread the plastic down his nose to his stomach ourselves at home and insure he got the calories he needed.  Most NICU babies have to eat all their food by mouth for a few days before they're sent home. The doctors were willing to let us just take him. We weren't going to complain.  
    • (Note: While most third trimester preemies have to pass a feeding challenge -- eat all their food by mouth for a few days -- before they're allowed to go home, many micro-preemies come home on some hospital equipment, and many of them depend on that equipment for a year or more. We'd assumed he'd come home on oxygen, and probably a feeding tube too. An NG tube only was WAAAAY easier than oxygen plus a tube, so we were thrilled.)
  • He passed a hearing test
  • He impressed a physical therapist (although he was a little slow on some of the reflexes)
  • He developed an incisional hernia where the gut surgery had been.  It was cosmetic (and kinda cool when his bowels rippled) at the moment, but would need to be monitored and eventually fixed. That meant (sigh) another surgery.
  • Once his central line incision healed, he got to take his FIRST EVER BATH. Imagine waiting four or five months for a bath.

P.S. It is with bittersweet joy that I write this post. From here on out the pictures and updates will be joyful,and I celebrate that. At the same time, there's a little 3.5 pound baby boy named Andrew who was due to be born today. He's three months old. I want him to have the same happy ending. His twin has already passed. Andrew has just been diagnosed with PIE - emphysema in infants. He is on a vent and his oxygen is at 100%. His tummy is stretched and bloated. He's off all feeds. Things are looking bleak.  My son hit a critical point on his due date too (remember? that's when I cracked), and I remember how it was so hard to see. While I celebrate how good December was for us last year, I hurt for him, and I hurt for his parents. We had hoped they were nearing the end of their journey. Dear baby Andrew, we're walking with you over here. You are in our prayers today!