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Meet Ulysses

by | Aug 23, 2019 | Birth Defects, Birth Defects, Congenital Heart Defects, NICU, Pregnancy Complications | 0 comments

My son is now 10 weeks old. He has a congenital heart defect and severe birth defects, limb differences with all four limbs affected.

I’m here now because I have a story to tell, a story with infinite ellipses and a looming question mark. It’s just the beginning of a story, really.

But does the story about my new son start the day he was born? Or the week before when we learned he had profound defects and would likely not survive? Or the start of my pregnancy when I learned he was one of three, two of whom did not remain viable?

I think to get the most understanding of who this boy is, what he means to us, I have to back up even more.

My older children are almost thirteen and nearly six. I joke about the seven year age gap being one of the “best kept secrets” of family planning, but there really wasn’t any planning involved. The big space, while wonderfully beneficial and I wouldn’t change it now for anything, wasn’t the result of careful decision making, but rather inexplicable secondary infertility. I always imagined myself as the wisecracking mom to a passel of feisty kids. I wanted the rowdy chaos of a big family. But my quirky biology didn’t comply.

I lost a pregnancy early in the second trimester, about four and a half years ago. I’ve had a number of very early miscarriages, which were disappointing, but nothing like the devastation of losing one after crossing into the proverbial “safe zone.” That loss resulted in lingering complications. It was a difficult time to live in my own body.

So when I found myself surprisingly expecting back in the early spring of this year, it was hard to believe. It was hard to tell myself that it was true, let alone to tell anyone else. It was too fantastic.

I felt like maybe I could protect the idea of it and make it stay real somehow by not breathing it aloud to others. And then I started bleeding. And I bled constantly for over a month, during which I learned I was losing two tiny embryos. How ironic that years of wonky fertility would find me knocked up spontaneously with three, each in a separate sac? But the irony turned around on itself, like a mobius strip, and it was a pregnancy loss after all.

There were weeks of not knowing if it would be a total loss or not.

When the bleeding stopped, there was one scrappy baby, holding on in there.

And suddenly, I was the caretaker of this tremendous and wonderful news. It was too unreal and too thrilling to me to want to share the news.

How could I tell anyone that I was pregnant and have them possibly understand what that could mean to me? Of course, such knowledge comes up organically, in conversations and double-takes (is she or isn’t she?), and it didn’t stay my sweet secret for long. But, even once the word started getting out, I didn’t make a deal of it.

I didn’t tell Facebook (also, fuck Facebook. while we’re at it.) and I didn’t make any grand announcements.

You’d think if I was so happy about it, I’d want to sing a song from the roof and do a mass postcard mailing, but it was just too precious to expect anyone else to appreciate, and I felt very protective.

Once the high drama of the first trimester passed, it was a long dull slog through ill-fitting pants and raspberry leaf tea and heartburn.

I had delightfully warm and chatty visits with my homebirth midwife; we organized the house and checked off an industrious home improvement To Do list; there was only completely glad anticipation.

I had what I hoped would be my last prenatal appointment on November 2nd, which was also my “due date”. My midwife didn’t feel certain about the baby’s position and had me zip down to an imaging clinic for a quick ultrasound. I had a lot of anxiety on the drive. I was down to the wire, for sure, and didn’t have any time to flip a breech baby.

The ultrasound tech saw right away that baby was head up. I sighed and tried to remain cool.

I’ve got this, I thought. Maybe the baby won’t have the exact birth we’d been planning, but it’ll be okay.

And then the tech asked me to wait in the room. I was confused by this, and called my husband. “Baby’s breech” I told him when he answered, “but it’s a baby in there, not, like a cat or something. I saw the head and I think the hands.” And then he asked me, “the right number of fingers?” And then I had to hang up quickly, the tech was coming back with someone else.

I was introduced, in that small dark ultrasound room, to an older man, the radiologist. He shook my hand and then blurted out, “Your baby has multiple abnormalities.”

He said the baby had deformed limbs, missing fingers, probably missing other parts. I could barely hear him from this whooshing sound suddenly throbbing in my head. I stood up and grabbed my bag. “I don’t know the words to say,” I remember saying. And that’s all I said. I walked out of the room, walked past the waiting area and said to my big girl, contentedly reading a book by a window, “We’re leaving now,” as I walked out the door.

I know by the time I got into the car I was crying. I know that I tried explaining to my daughter why I was crying, except I didn’t know. I know that I called my husband and somehow told him.

I know that my midwife called me and told me not to drive myself home. I know that I told her I’d be fine. I’m fine. It’s fine. Fine.

I know that I kept telling myself I can’t crash the car because I have to take care of my daughter.

I know that by the time I got home, about forty-five minutes away, my husband was also there.

I know that we left almost immediately to the city, where somehow I’d been fast-tracked into an appointment at a maternal fetal medicine clinic for a level II ultrasound and an amniocentesis to see what congenital birth defects that he had.

I know that I cried all the way there.

What happened next is we learned this baby we’d been expecting all along had “significant” and “profound” birth defects, in and out. We learned he was a boy.

We learned that he had syndromes that were considered “incompatible with life.”

Two days after that appointment, we had a consultation with a neonatologist and a meeting with the hospital ethics committee. Maybe you already knew that hospitals have ethics committees, but I did not. By this time, our baby’s file had been shared with a multitude of specialists who carefully analyzed his congenital birth defects.

The neonatologist told us that she did not think it would be unreasonable for us to proceed with an out-of-hospital birth. By which she meant, there is not a lot they can do for this baby, so maybe you just want to spend his last moments peacefully at home.

We were braced for the worst. The best was still very bad. Based on his rare and complex congenital birth defects, all best guesses determined that the likelihood of him having severe neurological impairment was very, very high.

Would he be able to eat?

Breathe?

Hear?

The ethics committee gave us their veritable stamp of approval, entrusting us wholly with all decisions. We discussed how long we would continue support for our child? What kind of support? I learned the phrase “palliative care”.

There was one week in between my world falling apart and his birth. One week of such deep despair I won’t even begin to describe it. One week of waiting for him to be born so he could die and we could say goodbye.

One week of listening to Pearl Jam’s Just Breathe over and over and over again, like some kind of prayer.

Among our ethics committee approved plan was my insistence on avoiding a C-Section. I don’t suppose that the hospital sees a lot of vaginal breech births. Probably fewer Pitocin-induced vaginal breech births. I also was firm about refusing fetal monitoring. Did I want to hear the heartbeat of a baby who would not live?

No.

And while my other babies were born triumphantly without pain relief of any kind, I assumed I would need something to get me through this dreadful thing I had to do. In the end, though, the drug made labor so hard and fast and intense, I was out of my mind with the hurt of it all and did not have time nor wits to request pain medication.

I say that not out of pride, for there is nothing to be proud about what was the darkest moment of my life, but just to illustrate what an unusual birth it was.

Everything about this boy has been unusual.

There was no tender welcoming a new life into the world. He was zipped across the hall, neonatologist and NICU nurses and cardiologist and geneticist and who the hell else at the ready, to check out his birth defects. I turned my head away and didn’t even want to see him go.

We heard him cry. It was a confusing sound. We thought he would need intubation. It was assumed that his heart defect would prohibit his lungs from working efficiently.

But he was crying.

And they brought him back to me. And they said he was healthy.

And I held his tiny broken body and I nursed him and he latched on better than my other babies latched on as newborns.

And I cried.

I cried because he wasn’t dead and I cried because he was alive. No one mentioned the possibility of leaving the hospital with a disabled baby. How do you even prepare for such a thing? There is no preparation. There is only disbelief.

congenital birth defects

His stay in the NICU was brief, just over a day, for monitoring. This little champ maintained a near perfect blood oxygen level, despite his heart defect. He’ll need surgery sooner than later to repair his broken heart. The pediatric cardiologist explained it as a common congenital defect, a routine surgery. But in my world, there is nothing common or routine about open heart surgery for a brand new baby.

Prior to this roller coaster, the most serious medical situation my family experienced was that time my daughter had stitches by her eye eleven years ago. How’s that for contrast?

How do I tell you about this baby?

I do not want the sum of him represented by what he is not, what he is missing, the challenges that await us.

But what else is there yet?

His issues are not minor. His bilateral leg condition alone occurs approximately once in every one million live births. He will never walk without serious, invasive surgeries and devices. Amputations. Prostheses.

Do you know what a mindfuck it is to hear such words about a newborn?

Can you feel the weight of this?

My big boy, the bouncy one, the easy-going one, the boy with the casual shrug of his shoulders, mentions his baby brother’s hands like it’s the most obvious, simple thing ever. “He only has three fingers on one hand,” he says, “and two fingers on the other one.” So matter of fact. No catch in his throat. No mourning the loss of future handprint turkeys or making the motions to so many kid songs.

I’m not there yet.

I’ve been looking at and loving on those tiny malformed hands for fourteen days now and it’s still hard for me, even as they tell me “it’s just mechanics” and “he’ll figure it out” and other encouraging platitudes.

I am usually so guarded and private. It’s out of character for me to share so much here, even as I’ve intentionally omitted specific diagnoses (a grouping of several, with no umbrella catch-all for them all together as of this point). But everything is different now. Since we’ve been home from the hospital, I’ve been hiding. A few people have met this surprising baby, but we haven’t yet left the house, save for doctor appointments.

I can’t hide indefinitely. I will have to be brave and bold enough to withstand whatever questions and curiousness occurs when the world meets Ulysses.

He looks an awful lot like his big sister did as a newborn. Same deep eyes, same frowny mouth. When he’s all wrapped up in a blanket, you would never know that he has such serious things going on. And I can assure you that he does not know. Everything else about him is just what you’d expect from any newly born babe. He squirms and fusses.

He makes those mysterious sleep smiles. He flails his arms when a loud sound startles him. His brain seems normal. Everything else about him seems normal.

There is nothing normal about our life now.

We have so many appointments scheduled. He has already had more doctors examine him than maybe my other two children, myself and my husband have ever had, all together. I don’t know how to get used to living such a highly medically managed lifestyle.

It’s been just three weeks since everything changed. So much information to process in such a short amount of time. I’ve blamed myself incessantly, even as I know there was nothing I did or did not do to cause this. That is the absolute truth, and yet, I worry that people will wonder… of course they will. People with murky knowledge of genetics, people who have grown lazy in their own good fortune, people who can’t possibly know how wanted and treasured this little baby has been all along.

Everyone’s delighted that he survived the birth, that he is thriving.

And yes! What a great outcome!

But now what?

Since I wrote that, we have laid out a plan for open heart surgery (soon) and orthopedic surgery (before his first birthday). He is growing plump and smiley.

Exaudi Orationem Meam

by | Oct 10, 2010 | Anger, Anxiety, Birth Defects, Birth Trauma, Encephalocele, Fear, Feelings, Generalized Anxiety Disorder Resources, Hope, How To Cope With Post-Traumatic Stress Disorder, Loneliness, Medical Mystery Tour, Neural Tube Defects, NICU, PICU, Post-Traumatic Stress Disorder, Sadness, Stress, Trauma | 9 comments

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.

I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.

Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies.  A Baby Garden.

Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.

According to her room placement, though, she was the most ill.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.

It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”

Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.

I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.

We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.

I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.

The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.

I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.

Guess that’s panic for you.

After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.

She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.

And she is so, so blessed.

We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.

Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.

Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.

Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.

Talk about being torn.

I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.

By myself for the first time, I tearfully found my way back to the Secret Place, The Land of  Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.

I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.

Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.

After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.

In the brief time I’d been gone we’d gotten a new nurse.

When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.

She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.

That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.

The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up  to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.

Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.

I was about to lose it.

Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.

I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.

Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.

Fucking bitch.

She told me to “relax” and then left.

I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.

My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.

I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.

It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.

Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.

Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.

Then (dun, dun, DUN), the absolute worst person to show up did.

Lactation services.

Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.

(also: why are people in the Lamaze videos always naked?)

But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.

No.

She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.

I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.

“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”

Again, she could have gracefully bid be farewell. But no. She kept on keeping on.

“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.

I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”

I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.

Dave told her to get the fuck out of our room.

Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.

I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”

And just like that, we went from critical to discharged in less than 36 hours.