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.

"What?"

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.

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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.

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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.

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!

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. 

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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.

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

Weight/height:
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.

Therapy/Development:
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.

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.

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!

Day 123-137: PTSD & PPA -- an ode to Medievalists.

[I've sung odes to many specialists through this blog. Social workers, NICU support volunteers, OBGYNS, Early Intervention PTs/OTs, and scattered throughout this blog I've praised respiratory therapists, NICU nurses, MFM (maternal fetal medicine) doctors, and JAM's great team of neonatologists.  I dedicate this post to another sort of doctor: the medievalist. I know about a half a dozen of you, and I think you're all amazing. Last year at this time, y'all were just the sort of doctor I needed. And while you can't supply medical-grade caffeine, JAM didn't & doesn't mind hanging out with you either.]

A year ago Jonathan was alternating between doing fairly well and facing another stumbling block. He started breathing fast after his bout of pneumonia, but he also started taking bottles by mouth -- as long as he wasn't breathing too fast -- and we were excited to watch his progress. He ate his first bottle (14  ml) entirely by mouth at four months old. He grew by leaps and bounds and by the end of November he had outgrown preemie clothes and was in newborn clothes most days. While he was under 5 pounds on his due date, a year ago today he was an adjusted age of 2.5 weeks and weighed five pounds and 13 ounces.

An MRI of his brain showed only one small resolved hemorrhage that had healed some time before and hadn't been present at birth. For long term cerebral issues, this was huge and great news. During tummy time over the last week of November, Jonathan started kicking his legs. Steve said he was trying to escape the NICU.

And then, on November 29, he went down for his last NICU surgery. A central line removal. That should be easy. It was usually done with local anesthetic, but (despite protests from his dad and the nurse) they put him under general anesthetic for it because he'd had the central line for so long. Like the previous few surgeries, he did not respond well to the anesthetic. His lungs and gut did not bounce back well from the surgery, and within the day he was taken off food and put back on CPAP. Again. He needed the breathing support for a few more days before he was able to go back to room air.

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On the home front, we were exhausted. We knew the end was in sight, but that didn't make the race any easier. We tried to maintain some sort of normal. We had my sister over for Thanksgiving, and we trimmed the tree that weekend as usual. We had this dream that maybe this would be the last holiday in the hospital.

I mentioned a few posts ago that I had crashed after his second to last surgery. To turn a corner and nearly see the end -- and then have him go back into critical condition -- it was harder than I thought it would be.

Were you ever super busy in college, so much so that you skimped on sleep to power through getting all your projects done?  Then, not surprisingly, as soon as it was all over, you got a terrible cold. It was like that, only then we found out, sick and sniffling, that it's NOT really over afterall and we had another major hurdle to overcome.

I had sought out support and had seen my OBGYN. She'd prescribed anti-anxiety drugs, but as they would go into the breast milk and complicate the health story of an already medically complex infant, I decided to save them until I found they were absolutely necessary. She agreed to this plan only after I lined up what steps I would take first: trips to see a counselor/psychologist, and extra exercise to help release the tension.  She was sympathetic and supportive. She said that even she had had post-partum issues with some of her children, and reminded me that it was a hormone imbalance thing, and didn't speak to my strength or weakness. The NICU experience makes all that even worse, she said, so treat this like you would any other illness. In other words, don't try to power-through, treat it.

The counselor/therapist/psychologist appointment happened on the same day as Jonathan's central line removal. It was only minimally helpful. And that's an optimistic assessment.

She asked me to explain what brought me in. She crossed her black nylon legs and turned her wheeled office chair to face me. I was folded into a leather armchair in the corner with my drug of choice (an americano) next to me on the windowsill. As I talked I stared at the colorful scarf draped over her simple and slimming dress or out the window at the cold dead branches. She was the woman with a solution to everything, highly competent and intelligent. I was in my own winter of life, no signs of flourishing. She could handle my story, I thought. I looked at her qualifications, posted in frames on the wall. I'm sure she'd heard much worse.  I checked my phone to see if Steve had texted me about Jonathan's surgery, and seeing nothing, I set it aside and set myself to my own bit of surgery.

I explained, I thought, in a very level voice without too much drama -- just the facts -- all that had happened in our family in the past five months. I consulted my coffee cup and turned the paper cup in my hands whenever it got a little difficult to explain. I tried not to make it too gory or overblown. I didn't even mention the blood transfusions or the time he turned grey in my arms. Just his early birth, the surgeries, the hospital stay. Just the simple stuff. It was, after all, our first meeting. Despite my down-play of the situation, she looked sympathetic and shocked.

She then explained to me that I was like a fire alarm that had been pulled. I was constantly alarming, even about small things. She said I should try yoga.  She passed me a brochure about post traumatic stress and anxiety.

Constantly alarming? Overreacting? She hit a nerve, and not the right one. I just needed to relax? I left confused. I had told her I was having flashbacks, but I didn't think I was a pulled alarm. So, yoga and visualizing were the answer, then?  I told her I'd be running instead. I could handle running. I didn't want at all to go deep into myself.

I walked out the door of the psychologist's office a bit disheartened. I made the next appointment with her, but wasn't sure how much it would help. I was NOT a fire alarm.

I hadn't even cleared the waiting room when my phone rang. It was Mimi's daycare. "Your daughter has had a terrible accident" they said. 

"Oh no, what hospital?" I thought.

"You'll need to bring another pair of pants to school" they finished.

So maybe I over-react a little. (Or maybe I just know how accident prone my Mimi can be) But a fire alarm?  Blaring lights? Not all the time.

I dumped my paper cup on the way off the elevator. I climbed into my car to head home for new underwear for Mimi. Since the professional's analogy was so bad, I tried to think up a better one. The psychologist had told me to visualize, so I visualized. "There" I mentally stabbed at her, "I'm doing what you told me to do!"

I thought of myself not as alarming unnecessarily, but instead as a cool glacial brook. Yes, that's what I was. That was my natural state. But then I'd accidentally wandered through hot springs. It's where my path had taken me. I knew I could keep flowing, and I'd find the glacier again, I just didn't want to end up evaporating in steam as I tried to get through this piece of the mountain.

Sounded good.

Do you remember Christina from the day things went wrong? and the oxytocin rules? She'd been through most of this drama with me. I told her about the appointment and my made-up analogy, and while agreeing I wasn't a fire alarm, she told me my analogy was bad.

She reminded me that cool streams come FROM glaciers. They don't flow TO glaciers. So I guess I'd never find the cool ice again.

"I meant I would flow through another glacier. I can do that, right?" I replied, "And get more cool water that way? Please tell me it is so, because I'm tired of hot sulfur smells."  I dared her to come up with something better.

And so she did.

"I think of you more as the youngish tree with deep roots that's planted between the street and the sidewalk and is currently in the middle of massive street construction, stubbornly hanging on and waiting for the street to get quiet and pleasant again. And in the meantime, you're making people feel better just by being there," she said.

With friends like these, who needed psychologists? You are strong, Christina reminded me. Strong and capable. You can get through this without being uprooted.

I asked Christina if she could perhaps prescribe me some drugs, too, being a doctor (PhD) and all.  So she took out her black bag of doctor tools. She is a medievalist, remember?  She discussed with me the imbalance of my humours and how to deal with my excess of black bile from the cold autumnal weather. She encouraged me to put on music and dance and eat warm, moist, succulent, easy-to-digest foods.

My doctor friend tells me I'm a solid young sappling who needs to get on her groove and indulge in comfort foods. I can handle this.

Seriously, why didn't I seek out Dr. Christina earlier?!?

Moral: Sometimes medievalists are better than psychologists for what ails you.
Also, I hear sometimes ale ain't too bad for what ails you, either.