And Now…

In January of 2014, in a very boozy and sad dinner out together when J was in a particularly bad spot, ICU Dad and I had talked about what we would do if the worst happened. At that time, we had discussed bringing him to Toronto, to lay him to rest in a beautiful and historic cemetery in the middle of the city where my sisters and I buried my mother 15 years ago.

Characteristic of my family, we had taken advantage of a bulk discount on plots, so there was plenty of space.

We were not expecting J to die on April 3rd. We were expecting to bring him home. So when the palliative care team asked us what our “Plans” were, we just looked at each other, confused. How was this conversation possibly happening right now? How could it f*cking BE that we avoided this f*cking conversation after EVERYTHING that had happened in 2014, only to have it on the f*cking DAY he was supposed to be discharged to a beautiful and healthy spring and summer where we would finally get him on his feet?!?

Anyway, I (profanely) digress.  The “Plan” still felt right to both of us. My mom, were she still alive, would have been here helping to pick up our pieces. Instead, we could trust her to take care of our second born son.

In the days after J died, our families, who had been so devoted to James in his life, descended upon us to grieve for him in death.  Our friends in Toronto jumped into action to organize the service and reception.  Without exaggeration, I have no idea what we would have done without them.  A crowd of loved ones surrounded us at all times; they held us together and carried us through.

We said goodbye to James in the same church where we had said goodbye to my mother. There were nearly two hundred friends and family in attendance; some that we had seen the day before, and some who we hadn’t seen for years.  The priest, herself a mother of a child close in age to J, wept freely as she delivered the homily. I just held on to ICU Dad for dear life.

Mourning a child is not like anything I have experienced before.  I have days where I appear normal from the outside, and I can almost make myself believe that I am actually okay.

Then there are days where the tears stream down my face unnoticed, and I surrender to a flood of memories of his smell, his impossibly soft skin, his chubby little feet, his laugh. The feeling of his small, contented sighs into the crook of my neck as we settle in to snuggle after the workday. Those are unbearable days. It’s as though I am missing a physical piece of myself, some essential organ that has been torn out and left me mortally wounded. And I’m sure I will never be okay again.

My only strategy is constant motion. So whether it’s a good day or a crying day, we’re walking, working, gardening, playing, cleaning, home improving, eating ice cream cones with Max, anything…grieving like this allows for the inevitable sadness, but also gives a distraction when it becomes too much to bear.

As for this blog, ICU Dad and I decided that we would leave it up for now. So that the next time a sweet little peanut with Kabuki Syndrome or HLH or congenital glaucoma or any other complex constellation of issues comes roaring into the world, their parents’ incessant and obsessive Google searches might actually turn up someone who has been there before.  There are not too many of us who know how to parent a truly complex child in the modern medical world. I owe it to the next ICU Mom to be here, if she needs me.

Who knows, you might hear from the ICU Family in the future. But for now, I’ll just leave it at thank you. For the meals, visits, ICU overnights, groceries, shoulders to cry on, texts, phone calls, care packages, cards, prayers, and overwhelming outpouring of love sent to our family over the past two years.

Most importantly, thank you, my sweet baby James.  Our time with you was terrifying and insane and happy and perfect and complete, all at once. You were here for only 15 months and 29 days, and while I know you suffered at times, you also knew love and happiness. In only that short time, you transformed our family. We have faced and overcome unimaginable things, become fearless and competent and loving people we never thought possible, all because we love you.

I will carry your heart with me, my love. I will carry it in my heart.

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And Then…

Early in the week of March 30th, I met with the nurse practitioner that had been managing J’s ICU stay for the previous weeks. We were women with a plan. J was progressing really well, had been weaned nearly to home oxygen levels during the day, and after a lot of finagling around we finally found a BiPap mask that worked and was comfortable for him overnight; it was time to get him home.

The last step was fixing the suspected microaspiration problem.  When kids have lungs like J did, any illness causes a huge amount of lung secretions. If they also suffer from reflux (which J did, sometimes badly), it can cause small amounts of milk or saliva to be aspirated from below.  These small aspirations, if frequent enough, can cause further respiratory distress and eventually pneumonia.  Stop the aspiration, and hopefully stop James’ cycle of illness and constant hospital stays.

J was already being fed by G tube, which reduces aspiration since he was not swallowing food.  The proposal was to temporarily change from a G to a GJ tube, a straightforward and noninvasive procedure done with x-ray guidance to swap feeding appliances in the existing access point in J’s tummy.  With the GJ tube, J would get his food into his jejunum (i.e. the beginning of his small intestine), further limiting his aspiration risk by not putting any liquid into his stomach at all.  Then, once he stabilized and stayed out of the hospital for a few months, we could switch back to the G and hopefully at that point at least partially feed him by mouth.

ICU Dad and I went back and forth on whether to do this. We have tried so hard to limit the amount of interventions for James, but the logic was undeniable: J was just going to keep getting sick, unless we made a change.

The procedure was scheduled for Tuesday, March 31.  ICU Dad stayed with J Monday overnight, and I arrived Tuesday morning to relieve him and accompany J to the procedure.  We squabbled with anesthesiology over whether he really needed to be intubated and under general anesthetic for it (we lost), and then waited around for most of the day for the interventional radiology room to free up.

J was not happy that day. His food was turned off in anticipation of the procedure, and he was hungry (and a kid that is continuously fed is not used to the sensation of hunger, so really, he was pissed). Eventually, he was only calm held close to my chest in the rocking chair, and we sat that way for hours until they finally called for him in the late afternoon.

I took a picture of him before the procedure as I always have. Signed the consent form. Did the long walk alone back up to our ICU room to wait.

Before every single surgery that J has ever had, I’ve always had terrible sinking feelings.  There is something deeply unsettling about handing your child over to a doctor and just walking away.  The feeling that maybe you will never see them again.  I have usually made them bring him back to me to give him one more kiss.

Not on March 31st. I can’t believe that, in hindsight. I was worrying about the long-term effects of yet another use of general anesthesia, as I always have, but the whole thing was just so … routine.

He was finished in 30 minutes. The radiologist called me in James’ ICU room: “Very straightforward, once he was under it took less than 10 minutes, and he did great. You can tell the nurses they can start feeding him again right away.”

J was brought upstairs, extubated to BiPap, food started, and then he slept contentedly. I went out for dinner, then came back and turned in early.  It was not a bad night; he fussed here and there, but no more than normal. He was sleeping peacefully when I left the hospital for work early on Wednesday morning. The NP stopped by before I left to talk about resuming our home nursing services for Friday and other discharge planning stuff.  Routine.

I texted P, our nanny, around 10 that morning from the office, our usual exchange: “How’s J?”

“Great, we’re playing and he’s laughing so much today.”

“Good, give him a kiss for me.”

Then at 11:30, she texted again: “Something is wrong.”

To be clear, this is a woman who kept her shit together when J’s oxygen tank failed on her while she was out with him picking Max up at preschool in the fall.  The woman does not say “something is wrong” unless something is really f*cking wrong.

I called her.  Told her to find our NP, find the resident or the fellow and tell them.  They all knew P well, and they would listen to her.

I heard minimal updates for a couple of hours. Then around 2pm: “I have to leave now to get Max, but I can’t leave J like this.”

“I’m coming.”

I picked up my bag and walked out of the office and onto the train.  As soon as I got to the hospital and saw J, I went into a full on ICU Mom tear. James was not James. He was clearly in pain, with a panicked look on his face. His heart rate was over 200, and had been for 2 hours.  His blood pressure was dropping. I was marching around the unit, talking to the doctors, telling them to look again at the test results, repeating over and over “Something is really wrong.”

I held him for a few minutes, hoping it would help. I know now that it must have been excruciatingly painful for him to be held by me at that moment, but he didn’t cry. In fact, he just nuzzled his face into my neck with relief.  For the last time.

Then he started to crash and the doctors were pushing into the room.  IV access, centerline access, intubation, dopamine, epinephrine, x-rays, consults.  I texted ICU Dad and told him to come – he was walking out of his office in seconds. When you live at the extremes like we have, you know the difference between a routine bad day and a Bad. Day.

Then diagnosis: the GJ tube had perforated James’ small intestine, and the resulting leak of formula and intestinal fluid had sent him into septic shock.

Surgery arrived shortly thereafter. The head of pediatric surgery was on call; incidentally, and perhaps poetically, the same wonderful man who performed James’ bowel surgery on his second day of life. We had seen him and spoken with him many times since that first day.  He looked rather stricken, but maintained an icy demeanor as he explained the procedure. At one point I had to ask him to stop and restart because I had become unable to process auditory inputs.  I thought to myself a few times that I might be so sleep deprived that I was actually having a nightmare.

J survived the surgery. He was returned to ICU with his abdomen open and a vacuum-sealed dressing overtop; the doctors were expecting a continuation of the extreme inflammatory response, so to close him early would be fatal.

He was on the ventilator and heavily sedated. ICU Dad and I sat together for a while, and then around midnight I got on the train home to catch a few hours of sleep and to see Max off to school in the morning (I hadn’t seen him in 2 days at that point).

There was no sleep to be had for either ICU Dad or me, unfortunately. Anxiety does not lend itself to rest.  Then, around 6am, I got a text from ICU Dad that I will never forget. “Rough night. J had a fever of 108.”

So, I did not know fevers went that high. You may recall, James never really got fevers, even when he had HLH (where a high fever is usually the first symptom).  Several ICU nurses and doctors later said it was one of the highest they’d ever seen.  I knew enough to know it meant nothing good.

Max sent off to preschool, P and I drove to the hospital. Well, I think we did. In honesty, I have no memory of that morning. I do remember a panicked feeling of: “GET THERE NOW.”

The next 18 hours were a blur.  ICU Dad and I stood together in the eye of James’ storm. First, the attending Dr. W. told us J was “hour to hour.” Then at midday we were downgraded to “minute by minute.” He developed a clot around an arterial line in his arm and the chubby, perfect little fingers on his left hand turned purple. I surrounded them with heat packs and breathed warm breath on them to try to stimulate circulation … the same as I have always done for Max in the cold weather. But so, so not the same, because this time it was my pathetically desperate attempt to save J’s fingers from amputation.

By the evening, as Dr. W. came off service, he told us we were “hour to hour” again.  We felt okay. The afternoon was not as scary as the morning, and everyone seemed calmer, so we were, too.  We asked the nurse if she thought we could step out for food, and she said yes.  Our mood at dinner was optimistic.  In the prior 15 months we had seen J turn SO many corners that seemed impossible only hours before. He had this. We were sure of it.

As we walked back onto the ICU floor, my phone started ringing. It was the ICU staff. J had taken a turn. His blood gas was not looking good. His platelets were extremely low. In the 90 minutes we had been at dinner, his feet and his other hand had started to turn purple.

We heard some familiar and some very unfamiliar words over the next few hours as we took turns sitting beside him.  The mood was changing.  And then, the attending arrived at the same time as the oscillator.

In 15 months, I have not once lost it in the hospital. Literally, not once. I have calmly instructed doctors to please ignore the tears running uncontrollably down my face as I asked rational and painful questions in a number of surreal conversations:

“The treatment begins with 8 weeks of chemotherapy.”

“There is severe brain damage in his right occipital lobe from an unknown cause.”

“The good news is, he doesn’t need a bone marrow transplant. He has a defect on his MLL2 gene, and the diagnosis is something known as Kabuki Syndrome.”

But when I saw that oscillator, I knew. I knew exactly where this would end. I felt like I was outside my own body, watching myself shriek and pull my own hair like a complete lunatic. Pushing away anyone who tried to touch me. I collapsed into a ball on the floor beside J’s crib and howled.

ICU Dad did what a good ICU parent should do in that situation: he completely ignored me and the nurses who were telling him to come and get his wife.  He walked out of the room with the attending and the fellow and got a handle on the situation.  And then once he was done, he walked back into J’s room, picked me up and looked me right in the eye and said “I can’t do this by myself. Get it together.”

For once, I couldn’t speak. Once I got my breathing under control, I walked silently out of the unit, out of the building and to the sidewalk beside the hospital.  It was very windy, and the cold air on my face brought me back.  “Stop it.”  I repeated that over and over for twenty minutes until I knew I was under control.

When I got back to J’s room, as soon as ICU Dad saw that I had my wits about me again, he collapsed on the couch. It wasn’t sleep. It was exactly what I had just done, in a different form.

The attending was waiting for me.  “I apologize,” he said. “I had forgotten that he was on the oscillator at the outside hospital before you got here last winter.”

“I’m fine.”

He laid it out for me, bluntly, as would only be appropriate if the parent on the receiving end was a truly hardened ICU parent: ARDS. Extreme inflammation. Disseminated intravascular coagulation. Purpura fulminans. Organ damage. Extremity damage. Potential brain damage. We would know how things would play out in the next few hours.

I sat holding J’s hand for hours, until I couldn’t balance on the chair any longer.  Then I woke up ICU Dad and he took my post.  We stayed that way until the morning, both knowing but not wanting to say out loud what was coming.

Around 8 am, Dr. W., that wonderful, soft-spoken ICU attending who had cared for J so many times over the past 15 months, came into the room and closed the sliding doors.

“You have always asked me to be honest with you about James…”

James died at 2:15 in the afternoon on April 3, 2015.  He was peaceful, dressed in a favorite pair of pajamas, not attached to any machines, and cuddled close between his Mommy and his Daddy.

Déjà vu All Over Again

(Written March 22, 2015)

In January, when I last posted, I seriously considered changing the name of the blog. I mean, the holidays sucked, but James made it through and we were home and happy – I thought continuing to call myself “ICU Mom” was not really appropriate any longer.

Well, approximately 45 ER and ICU days and nights later, I think I’m safe to stick with it for now.

It’s been a mentally and physically exhausting three months.  Bright spots here and there, but exhausting.

This time last year, we were trapped in our third PICU month, with James unable to wean from high flow oxygen until a dogged attending physician finally made enough consultation requests to get J’s Pierre Robin Sequence diagnosed. What followed was more waiting while James got stable and big enough to withstand the mandibular distraction surgery.

It was an incredibly, achingly frustrating period.  Sitting in a hospital watching your sick kid try to gain weight … I shudder just thinking about it.

This winter, despite rarely leaving our home and the constant and incessant hand washing, housecleaning and glove and mask wearing of every person around him, James has been sick.  A lot.  Mutated, vaccine-resistant flu at the end of January (10 PICU days), home for three weeks only to catch rhinoenterovirus (10 more PICU days), home for less than 24 hours then back to the ER and the ICU for another 4 days, home for 6 days and then back to the ER and the ICU where … we have now been trapped since March 9th, with James unable to wean from BiPap and high flow back to his home oxygen baseline.

The doctors say he is just worn out from the winter. He just needs time in the hospital on increased breathing support to get strong again, to fix the microaspiration that they believe is causing the constant respiratory infections, and then we can bring him home (with a new breathing contraption, BiPap, in tow).

But this winter, mom is back to work full time, and big brother is suddenly noticing Mommy and Daddy never seem to be home at the same time. And, frankly, it takes a Herculean effort not to completely lose your shit when you think about everything James has come through in the past 12 months … only to end up in the exact same f*cking place.

ICU Dad and my weekly schedules are madness right now. ICU night with J, straight to the office in the morning, straight home afterwards to get Max, feed, bathe and put Max to bed, unpack and repack for the next night at the ICU, collapse into an uneasy sleep where we’re often awake texting each other in the middle of the night from the anxiety of it all, repeat.  During the workday, our indomitable nanny P spends the day with J at the ICU, feeding us constant updates via text.  If not for the most dedicated set of ICU grandparents that ever lived, we would never even see each other.

The doctors keep telling us: “Just get him to spring, and then you will go home and he will get strong. Next winter will not be like this.”

Get him to spring. It’s just a few weeks away. We’ve got this.

James

IMG_0053As many of you know, James passed away on April 3, 2015.

I had written a post in March that, with everything else going on, just never made it to the blog.  Then April 3rd happened. Then I hemmed and hawed and started and stopped and said “I can’t f&cking write this” and then, as usual, I just got on with it.  It’s not my best work. But after everything he endured, James’ story cannot be left unfinished. It deserves telling. So, following this is the un-posted post from March, the account of James’ final days, and where we find ourselves, now.

James and the Terrible, Horrible, No Good, Very Bad (Holi)Day.

A belated Happy New Year from the ICU Family!

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N-E-T-S Nets! Nets! Nets!

We went into these holidays with high hopes – my parents and all 5 of my siblings (and one sibling-in-law) descended upon us just before Christmas, and the plan was to have both families together to celebrate.

All was fantastic, initially. Luckily our two families get along well, and we really were having a great time – basketball game, big family dinners around the table, board games…classic family holiday season.

As I reflected on the one year anniversary of the day everything went pear-shaped with J (Christmas Day, natch), holding him while looking around the table our families who we love so much laughing and having fun, anticipating leaving in the morning for a week of skiing at a cottage in Vermont, I though to myself “We deserve this, dammit. We deserved a happy Christmas, and we finally got something good.”

James' and my view of the Christmas dinner table.  And then, 24 hours later...
James’ and my view of the Christmas dinner table. And then, 24 hours later…

Yeah. Spoke too soon; have I learned nothing these past 12 months?

The next morning, James had a respiratory attack. My doctor sister sat with me while we tried a variety of nebulizers, and we eventually got him stabilized after about an hour.

I should have recognized how sick he was getting. But we are just desperate to keep him out of the hospital because of the infection risk, and if I’m being honest with myself I could not admit that something might be disrupting this picture perfect holiday season we had been so enjoying. Also immediately afterwards, the septic tank at my in-laws’ house overflowed into their basement, and between the floating poop in the suitcases and trying to pack up for Vermont while James slept quietly, we got distracted.

This. Urgh...
This. Urgh…

Without being dramatic about it, James nearly died in the ER that day. This was as close as we’ve come since last year. It involved ICU Dad driving like a madman to the local fire station, transferring to an ambulance with me holding J on the gurney, and steroids, epinephrine, Code Blue etc. (I do feel a little guilty for all the profanity the kiddos in the ER must have picked up from me that afternoon, and who knows what J was thinking as his mom was yelling in his face “Come on James, WAKE UP. WAKE F*CKING UP, BABY BOY”). That sh*t was terrifying.

Yes, on J’s one year anniversary of his entry into PICU … he was admitted to PICU again.

At least Max got a ski holiday.
At least Max got a ski holiday.

The rest of the weeks were a blur. Once he got on some antibiotics and diuretics, J had about 2 touch and go days in the PICU followed by rapid improvement – it took 9 more ICU days, but he’s home again. Max still got his ski vacation, it was just with his grandparents and aunties and uncles instead of Mom & Dad. As we had closed on our new house two days before Christmas, we still had to move, which I handled while ICU Dad stayed with J in the hospital. Painters, movers, family members cleaning on their hands and knees … it got done, but it was really like one thing after another (e.g. the furnace at the new house was dead when we arrived, the washer dryer were not working, a nasty busybody neighbor at our old condo complained about our move, condo cleaned for the new owners, the cat decided to express his displeasure with the move by using the duffel bag containing all of the Christmas gifts our family had received as his litter box – which I didn’t discover after he had been doing so for over a week. And on and on and on.)

Food for the hard working helpers...
Food for the hardest working family a girl could ask for…

I started to visualize myself as a pebble in a rushing stream, and it’s a concept I’ve come back to many times since that week. When the water is rushing all around you, all you can do is let yourself be carried along until it calms.  And, at the risk of being labeled a Pollyanna, other than those horrible moments in the ER, I do not think we will have bad memories of this holiday season.

The truth is, while we’ve had a tough year, that doesn’t entitle us to a damn thing. If we wait around for good things to start happening, based on our luck we’ll be doing just that…waiting. Sounds pretty boring to me.

Happy 2015! James, you are hereby ordered to be in next year's NYE picture, at home. OR ELSE (your mom will seriously lose it).
Happy 2015! James, you are hereby ordered to be in next year’s NYE picture, at home. OR ELSE (your mom will seriously lose it).

We have to make our happy and joyful life out of the circumstances we’ve been handed. These holidays were a challenge. But really, what will I remember about them? ICU Dad and I got to spend New Year’s Eve together this year because J is the only kid I know who has an ICU Grandfather who couldn’t stand to see his son spend another NYE on a hospital couch. My 21-year-old sister, who spent a day in Brooklyn on her own choosing paint colors and contracting with a house painter. My sister and brother-in-law scrubbing our new house, top to bottom, just in time for the movers to arrive with all of our stuff. Max’s grandparents and aunties and uncles, coming together to soften the blow of yet another stretch of hospital time for his younger brother. So much laughter despite the darkness.

And that James, sweet baby boy (thank you universe, yet again), survived.

I cracked a joke to a colleague at work, after being asked how our holidays were, that my standard is now “Is everyone alive and safe? If yes, it was great.”  He laughingly responded that my standards had gotten pretty low if that was the case.

James and his Grandma -- post-ICU stay.
James and his Grandma — post-ICU stay.

Maybe they have. Or maybe, our standards are pretty f*cking outstanding. What would the holidays mean without the people you love? If you are not lucky enough to be surrounded by those people, does it really matter where you are or what you are doing? Not to me.

Yes, my baby was in the black hole of the PICU again. But, hello?! He survived and is back at home and making progress once again. Many parents whose kids were in the same position as J are coming to terms with an unimaginable loss this month.

Yes, my cat sh*t on our Christmas gifts. But, hello?! We were blessed enough to have a duffel bag full of gifts from parents, sisters, brothers, aunts and uncles, and a washing machine to clean up the damage. How lucky are we?

Yes, the furnace wasn’t working when we arrived at our new house. But, hello?! We are lucky enough to have a new house with enough room for our family to grow in the coming years, and I had my eminently capable sister and brother-in-law on the case to arrange the repair. Amazing!

Does it sound like I’m drinking the Kool-Aid? Possibly. Or maybe just too much wine. I’ll tell you what: my life feels much more manageable, fun and joyful in this frame of mind.

There is no such thing as a charmed life. Bad things will happen to you, as they have to us. Our job, as parents and as people, is not to let those things write the story of our life. Instead, we have to weave them into a greater tale – right now, ours is about two parents who love each other, their two children, their family and their friends more than anything in the world.

Everything else is just white water rushing on by.

Sorry about all the excitement, guys.
Sorry about all the excitement, guys.

On the day you were born.

Happy (unlikely) first birthday, my sweet James.

There is a story about your first year that hasn’t yet been told. It’s a hard one for me. But one day you will want to know about your birth, and since I can’t remember how old I am most days, I must record this for you. But, despite the nearly unbelievably painful events of the past twelve months, my feelings about this day in particular are still raw.  Forgive me if I’m more emotional than usual.

Very early in the morning of December 3, 2013, I woke up and I knew something wasn’t right. I still can’t really explain it – you were moving, I still felt physically fine. But I had a terrible feeling.

An obstetrician appointment was already scheduled for that day, and I walked over from my office. When the unflappable Dr. R. asked how I was doing, I answered honestly: “I don’t know. I can’t point to anything specific, but something just doesn’t feel right.” She responded that since I hadn’t actually complained to her about anything yet (despite a rather stressful pregnancy), she just wanted to hook me up to the fetal monitor for a few minutes to confirm everything was okay.

It wasn’t. I was having contractions that I couldn’t feel, and your heart rate was dropping every time I did. Not yet an emergency, but she packed me into a taxi and sent me up to the hospital for more monitoring. ICU Dad came to meet me.

After lying around completely uneventfully for 4 hours, your dad and I thought everyone was overreacting, and we were both anxious to get back to work. The attending doctor agreed to discharge. The nurse was just about to take the probes off my belly, when I had a major contraction and your heart rate went dangerously low, and was sluggish coming back up. Suddenly, where everyone had been happily chatting before, they were mobilizing, acting like they were about to perform an emergency caesarian in the triage room.

So we didn’t get to leave. We got admitted. On December 3, you were 34w5 days. Every doctor in the unit was focused on keeping me pregnant for two more days, as 35 weeks is an important milestone for infants born prematurely.

The monitor was wrapped around my massive belly. I got steroid shots in my butt to help your lungs prepare for life on the outside. The decelerations got much worse. Initially, I could still get up and move around, and go to the bathroom by myself. After a few more hours, I was actively contracting (still couldn’t feel anything) and it got to the point where I could only lie on my left side – any other position would send you into distress. I lay in that position for more than 24 hours. The smallest movement would cause your heart rate to drop.

Obviously, that was not sustainable. We halfheartedly entertained the idea of trying to induce labor and deliver vaginally, but as the contractions got more serious, it was very clear you wouldn’t tolerate it.

So off we went for the C-section. Your dad and I were excited. We couldn’t wait to meet you. And, after everything that had happened, we were both nervous. We wanted so desperately for you to be healthy.

I’ll say one thing about urgent C-sections – they happen fast. About 20 minutes after the spinal anesthetic was administered, I’m lying there not feeling a thing, listening to the surgeon and anesthesiologist chatting, and wondering what they were waiting for. I piped up: “uh guys, you know he’s in distress, right? What’s going on down there?”

I’ll say one more thing – spinals are effective. Just as I was telling the surgeon to move it along, he pulled you up and out. You were here!

Hi there, little buddy.
Hi there, little buddy.

You had a loud and beautiful cry. You looked just like your older brother did when he was born. You were perfect. 9/9 Apgar score. 4lbs 6 oz., pretty respectable for a 35 weeker!

I called out incessantly, asking to see you. And when I did, I wept with both joy and profound relief to finally meet you.  (Your father was dismayed at my urgency, as he was forced into a bird’s eye view of my intestines while carrying you over to the operating table.)

The doctors had warned us in advance that they would be taking you to the satellite NICU right away to do a full exam. So you were whisked away, and your dad and I proceeded to have a rather bizarre discussion with the surgeon while he closed me up. Who, it turns out, lived two blocks away from your father in Detroit, and was the doctor at Camp Tamakwa in Algonquin Park in Canada, where an old friend of mine from high school was a camper. New York City is like a small town sometimes.

Anyway, I digress. Actually, I’m procrastinating because this next part is hard to talk about.

Once all my insides were returned to their proper location, the OR nurse wheeled me into the recovery area. Where we waited for you (and for my lower body to wake up). Waited and waited. Until pretty soon the recovery bays, separated only by curtains, were filled with women cuddling with their newborn babies. We asked the nurse again and again how much longer it would be. She was kind, and she kept calling the satellite NICU, followed by the refrain “just a few more minutes.”

Finally, a resident clearly coming to the end of her call shift came into our curtain area. She appeared completely exhausted, hurriedly told us she had examined you, and then bluntly and without warning ran through the litany of issues identified: pelvic kidney (at least that one we expected), cleft palate, imperforate anus, etc. I don’t really remember what happened after that, to be honest. It was all a lot of white noise. I know I asked questions, but she might as well have been responding in Swahili for all I was absorbing. I did hear clearly that you couldn’t leave the NICU, since you required corrective bowel surgery within twelve hours.

Dad was standing beside me, holding my hand, when she arrived. By the end of the discussion, the color had drained from his face and his knees gave out. He abruptly sat down among the absurdly numerous bags, briefcases, and baby gear that we had been hauling from room to room for two days, and put his head between his knees.

We sat there in stunned silence. Waiting for my frustratingly useless anesthetized legs to wake up so we could get out of the recovery area and to our room. Listening, unbearably, to the neighboring happy families experience those euphoric first moments with their babies while we sat there. Without you.

Your sweet baby feet, hours old.
Your sweet baby feet, hours old.

Your Dad was finally allowed to see you. (Since he was, you know, able to walk). Bless his heart, he brought me back many photos to pore over – fingers, toes, ears – every bit of you, as though he could anchor you to us through his iPhone.

Eventually, I just could not keep it together any longer. It had been over four hours of this torture.  I utterly and unreservedly broke down, sobbing and crying out to whoever would listen that if I couldn’t see you, I had to get out of there. I didn’t care where I went, but I couldn’t be in that recovery torture chamber for one moment longer. I could hear the other families in the neighboring areas go silent. Sound carries pretty well through curtains, of course. The rational (and Canadian) part of me felt guilty for intruding on their special moments, but the mother in me had been pushed past all reasonable limits.

That OR nurse knew exactly the root of my desperation, thank God. She rushed away and returned with a wheelchair, loaded my semi-functional and still uncooperative and hysterical body into it and pushed me into the satellite NICU where I wasn’t technically supposed to be, even though every instinct was telling me I couldn’t possibly be anywhere else.

Finally, after hours and hours of waiting, I touched you. After the resident’s report, I was honestly expecting some kind of unrecognizable entity. Instead, I saw your beautiful face, you grasped my finger, and I watched you turn to the sound of my voice. Felt your impossibly soft skin. Knew you for my own.

I was changed.

Not in the peaceful transformation of a woman into a mother meeting her baby for the first time kind of way. There is very little peace in the modern medical horrors imposed on newborn babies struggling for life. Nor is it found in the heartbreaking realization that your child may be different, and the terror of not knowing what different might mean.

Sweet and gentle big brother...
Sweet and gentle big brother…

No, your first year has been transformative in a different, but no less fundamental way. It was the beginning of ICU Mom, ICU Dad and big brother Max. Now, we find laughter in unlikely places. We are thankful for small blessings. We are, as your brother so often says, “best pals”. We have perspective. We don’t hide from things that are painful to hear and accept, we stare them down and then start planning our solutions. We are unafraid.

ICU Mom and Dad would never zone out when a resident delivered painful news. They would never let anyone tell them they couldn’t see their baby. They wouldn’t sit there and cry, they would ruck up and demand action.

You did that, James. You brought out courage in each member of this family we didn’t know we possessed, and I will be grateful to you for that for the rest of my days.  There is something in you, my boy. I don’t know yet what it is, but everyone who encounters you feels it too. There is still so much uncertainty ahead for you, but I know at least this for certain: you were meant to be here, and you were meant to be ours.

Happy Birthday, my sweet James.20141109_mini_4261

Here’s Something Nice …

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Pretty sure this one was taken when our blogger nurse Kate was on J — I know because the blanket is insanely neatly folded over him …

One of our most beloved PICU nurses who took care of James for what felt like weeks and weeks in a row is a blogger, and she was recently asked to write a post on the topic of love for Huffington Post.  She gives a mention to J (using a pseudonym, H, for privacy’s sake) in her note, and I thought it was lovely: you can access it here.

Makes me smile that she called out our laughing.  I tell you, “Dark Humor in Dark Times” is not just something I made up because it sounded good: some days, it was all that got us through.