Tuesday, March 15, 2016

9 Months Later

I'm purposefully posting this last installment of the series today.

A few days after IUGR Awareness Day. 

Because long after the 5k Walk ends and the spotlight on the diagnosis dims once again, the reality of IUGR continues for so many families.  



So where are we today, almost 10 months later?

I am so happy to share that today N is thriving, thank Gd. 

He has had quite the year, including one surgery, a surgical procedure and a working diagnosis. 

N has an endocrinologist, a bone health nurse, an occupational therapist, a general surgeon, an orthopedic surgeon, a dietitian/ nutritionist, developmentalist,  neonatologist and a fantastic family doctor, all who closely monitor and follow him. 

A week doesn't go by where he doesn't have an appointment. 

When we were given the diagnosis we weren't given a prognosis. All we were told is he'll be little. Today, for sure, tomorrow, who knows? Besides that there was nothing.

And that's not good enough.

Today, IUGR is still an unknown. I've actually had a doctor roll their eyes when I've brought it up. When I clarified that my full-term baby was 1774g, he had nothing to say. It isn't taken seriously. Until you're standing in the ER clutching your baby, terrified and listening to doctors trying to decide if surgery should take place tonight or can wait, it's ignored. 

There's no preparation. There's no consideration. Maybe I was just naive, but throughout my pregnancy and all the talk of our baby being, "too small," not once was the NICU mentioned. Not once did someone offer to show me what the NICU looked like or even where it was in the hospital. Not once did someone explain to me that babies born at a low birth weight were at increased risk for so many issues that N has had to face. 

As per the advice of our incredible cousin, who I mentioned a post back, I joined an IUGR Support group. While there is something incredibly comforting about finding a community in this chaos, there is also something so frustrating and infuriating; that we aren't taken seriously. That we're seen as parents who just have small kids.

And then there's this fear. This fear that lives in the back of our minds, that few say aloud and no one can ignore.

Will it happen again?

We've been told (& to a degree we know, as hard as it is to digest) that we were incredibly lucky with N. That our 13 days in the NICU and the fact that he was born at full-term, are amazing feats. But what about next time? If we have another baby, will it be as "lucky"? Is it at an increased risk for IUGR? Is there anything we can do to prevent it?

I insisted on a placenta pathology work-up and follow-up. I underwent voluntary tests, appointments and reached out to others who have experience, to find out if there was anything else I could do. In Hebrew there's a term, "hishtadlus," which essentially means putting in your maximum effort. I'm doing my hishtadlus and I know at the end of the day it's in Hashem's hands, but I need to know. I need to know I've done what I can.

And the results? 

Just like during our pregnancy and just like N's first few months, it's all inconclusive. It seems, "placental insufficiency," is what we're going with now. 

40-60% of IUGR cases go unexplained. So the questions I whispered when I walked into the NICU...

"Why did this happen?"

"Why did my body fail him?"

They never get answered.

And it could happen again.

If they can't find answers they at least need to find a way to support families. Say the word NICU during pregnancy, because having it thrown at you as a possibility 5 minutes before you deliver is not right. Explain to us what having a low birth weight baby means. Don't roll your eyes when we ask about milestones or if his IUGR diagnosis could be related to the reason he needs surgery. 

Spoiler alert: it was. 

Both times.

Like I said in my first post, I wrote this as the series I would have wanted to read. I wrote this from the parents' perspective, from my perspective first sitting in the OB's office, and then through delivery and finally the NICU. There's a lot that hasn't been said and so much that I haven't accepted enough yet to share. 

But at the end of the day it isn't about me.

It's about N.

We need these awareness days and these spotlights, so as parents we can find answers and help our children.

N is remarkable. He's a bundle of energy and noise and chaos and love and was so obviously always meant to be a part of our family. He amazes me at how he really, really believes he can do things. He believes he can stand and crawl and push past any obstacle in his way. And he has! Today N is 5 times his birth weight. FIVE times. He's conquered surgery, surgical procedures, reflux and more. He's meeting milestones. He's succeeding and making us all smile ear to ear (& exhausted...) while at it. His personality is approximately a million times his size. 

So this is it. The end of the series. Thank you, to everyone who's commented, emailed, messaged and been in touch one way or another. Thank you for reading about our experience and sharing in the emotion and chaos of it all.

And to those who can relate. I'm sorry. I'm so sorry. And I won't say that I understand, because I don't have your baby and I'm not in your shoes. But I offer you my story and my experience. I want to give you hope and possibility when I tell you that my now 15lb, 9 month old, says Mama and Dada and crawls faster than I can catch him. That your baby is so strong. 

And so are you. 

And above all, you're not alone. It doesn't matter how many people don't understand your diagnosis or how many doctors roll their eyes, there are people and doctors out there that do understand! And you'll find them! They're out there! 

And there's this tiny baby, your baby, who's stronger than you can even imagine right now, who's ready for whatever comes their way and needs to know you are too. 

You CAN do this.

You WILL do it.

You both will.



If you'd like to read the full series, you can find the links below!

 



Sunday, March 13, 2016

IUGR and the NICU

It was over.

Our baby boy had arrived.

No more wondering when we'd be induced, if he was growing well enough, or what was happening, period.

Now it was time to face the other side.

He had arrived and he needed help.

When I was finally wheeled into his private room in the NICU, the confusion, pain and sheer terror of the past two months hit me full force. 



There were machines everywhere. Monitors were going off. I couldn't even see him through everything that was attached to him in one way or another.

I cried. 

The tears poured and I couldn't stop them and I didn't want to.

Why hadn't I been able to help him?

Why had my body failed?

Why had I failed him?

And now, he was stuck in this clear box, attached to wires and monitors, with a whole team around him and I was a spectator.

I, who had done my best, who had carried him for 37 weeks 1 day, who had just given birth.

I can't describe that pain. 

I had been separated from him for two hours. The nurses and M had a routine down. They were sharing information and he knew exactly what syringes to pass over and what he was doing. 

And I was sitting in a wheelchair, on the edge of the action, numb, thanks to the late onset of the epidural, and useless. 

So I cried.

After a few minutes, everyone noticed and asked me if I wanted to hold my baby. 

I couldn't even speak and I didn't feel worthy, but I nodded.

They opened the isolette and this tiny bundle of blankets, with a handful of wires dragging on the floor beneath him, was placed on my chest.

I said hi, and told him I was his Mommy.

And as the tears poured down onto him, he looked up at me. In that moment I knew that he was stronger than I'd ever be. Those eyes, the mischief and love and strength in those eyes, it was clear as day.

The NICU sucks. I could use a hundred more eloquent words, I could go on and on about the quality of care and how lucky we were to have it, but I don't want to.

Because the NICU sucks.

My dreams of Y running into my hospital room to meet his brother had been unceremoniously slashed. No visitors, no walking through the hall with the new baby, no quietly staring at him preparing to go home.

Instead there were rounds and specialists. Heel pricks and medication. IVs, monitors, wires and hand washing. So much hand washing. 

And then he started choking. And I begged, I begged to switch places. That whatever he was going through I would take it. I would take it times a million and I would not complain. 

But it doesn't work that way.

In went the tube and out came the air and everything he had been trying to get out. In went IV's and in came the specialists. Arguing right in front of us about what to do. 

Let me tell you, when you're lost, when your baby is struggling and when doctors STILL can't get on the same page, Mama Bear comes out. 

Forget that I was numb, forget that I had given birth two hours ago. It was done.

Mama Bear had arrived.

I somehow stood up and spoke up. I got my strength from my baby boy and I knew I could do this. As that day went on I made myself heard. I asked questions at rounds, I stood at that incubator and insisted I did as much as I was allowed. When everyone would leave I'd open his little isolette door and I'd hold his hand. I'd run upstairs to have my vitals checked every few hours and then return right to his side. I walked the halls and no one would have ever known I had just delivered. I cried and didn't even know I was crying through most of that day. My postpartum "healing" lasted approximately two and a half hours and then I was up and dressed and ready to do my part. 

Because that's the NICU.

By the way, any doctors out there reading this, here's something you don't want to do, FYI... When a NICU Mom leaves her baby for 15 minutes to get vitals checked and eat an apple she's being forced to eat since she hasn't eaten in 24 hours and that apple is taking precious minutes away from being with her baby, you don't walk into the room and loudly announce, "I have bad news." 

NO.

The thoughts that ran through my head... 

Turns out the "bad news" was that there was an emergency and our baby had to be transferred to another hospital because he was deemed one of the most stable. 

Let's just say that doctor didn't deliver any more news or even whisper one more word to me for the rest of our time in that hospital. 

I made it very clear that I wouldn't be staying and allow my baby to be discharged alone, so after a lot of confusion and one more check of vitals, I signed whatever I needed to and was on my way. I remember walking behind N's stretcher through the halls of the hospital. I remember sobbing, and whispering that his first carride shouldn't be in a transport ambulance. I remember the looks of the people in the hospital foyer, whispering and staring at the incubator strapped to a stretcher.

I remember M driving slowly behind the ambulance, and my heart in my throat the entire time.

We arrived a few minutes before N did. I walked into our new NICU and I'll be honest... I wasn't happy. We were now in a large room, with over 20 incubators, a handful of nurses walking around and zero privacy. We had come from a private room with our own nurse around the clock. I was scared that his care was being compromised. I recognized that there was an emergency and another baby needed his private room, but my baby needed it too.

I was wrong. And I've never been happier to be wrong.

Our new NICU was the greatest thing that could have happened to us given the situation. From the minute we walked in, we weren't spectators anymore. Even though it was 11:23pm, our nurse was full of love and energy. She offered to let me take N's temperature. She showed me how to change his diaper through two small holes in the isolette. And every time she addressed me, it was, "Mom." For the first time, medical staff recognized me as his Mom! They let me be in charge of my baby as much as I could be. 

And they were amazing. They walked me through everything. They taught me the medical jargon and in a day I was holding N's chart and could understand it perfectly. 

And then they told me I had to go home. The second full day there, I had noticed that by the time evening rounds came, the parents would leave. They were kind enough to give me a rocking chair that first night to stay by his side, but then they insisted I went home, showered and slept. 

After hours of back and forth, I stood up, placed my hand on our little boy's head, whispered our little pep talk phrase to him, and closed the isolette door. 

I sobbed through the hallway, and down the elevator. I screamed in the parking lot, when I saw his car seat in the car, empty.

I had a 15 month old at home who needed me. I couldn't stay and they didn't want me to. I knew he was safe and taken care of and that I would be back in a few hours for morning rounds, but that day I physically felt the pain of my heart being torn. Half of it was in the hospital, a hospital that was a 40 minute drive away, and the other half was at my parents' house, with no semblance of normalcy and waiting for his Mommy too.

Speaking of, our incredible 15 month old. He handled everything beautifully. Even though he spent almost 2 weeks napping in hospital hallways, or having lunch with Daddy at the Eaton Centre and dinner with Mommy in Yonge Dundas Square, he smiled, he enjoyed all the bonus Paw Patrol and he stepped into his role of big brother, seamlessly.

During the NICU experience I was pulled in a thousand directions. I would get home in the evenings so exhausted I couldn't think. I would call our baby's nurse throughout the night when I'd wake up because my body was telling me it was time for a feeding. I'd celebrate on the phone with the nurse when she'd tell me that he took 50cc or when she told me his umbilical cord fell out or that he'd had a great bath. And then I'd hang up and sob. Because I was his Mom. I was supposed to be there doing those things, experiencing those things.

I sat there day after day, doing shifts with M so we could both spend time with our baby. I sat there watching other babies be admitted for a few days and then discharged and hated and was ashamed of the jealousy I felt. I stopped saying the, "H" word. It was hard to watch the nurses redirect their eyes the first few times I asked when they thought we'd be going home. The first hospital had given estimates between a couple of days and over a month. Here they'd just say the same thing, "he's very small..." 

So I stopped asking. I put all of my love and energy into those days. Some days were great and I'd keep it together until I got to the elevators. Then I'd put on my sunglasses and cry all the way to the car. Other days I'd cry at the isolette when a random doctor would show up and causally say, "just here to do an ultrasound and check for any brain bleeds." 

Yeah.

I can't say enough about the nurses. They'd make M & I laugh, actually laugh. They'd pull up a rocking chair on their break and sit there and talk to us about the world outside, a world I was angry at, that just kept spinning. They would tell me about their kids and their experiences. They'd tell me I had a feisty baby and that he was doing great. They'd tell us we were doing great. They took care of our heart and they did it so gracefully and with such sensitivity. They'd meet me at the door and excitedly rush me over to our baby, to show me how they'd put him in an, "I love my Mommy," onesie. They made it okay. 

At this point, I also absolutely need to mention my husband's cousin (someone I had never met or spoken to, someone who lives on the other side of the world) who changed that NICU experience
for M & I. She gave us hope, advice, and  a sense of understanding that touched us so deeply and carried us through our time in the NICU. I still go back and read her initial messages, reaching out, full of advice I still hang on to. She is one of the ultimate examples of strength and courage, and even though we still haven't met, I consider her both a hero and a great friend.

And then the day came... 

I walked into the NICU and couldn't find his isolette and subsequently couldn't find my breath. And then I looked a little closer and realized our baby was laying in a bassinet, on room air, attempting to regulate his temperature and successfully doing so. The first step to going home! Still no one said the H word, but later that day it was suggested I bring in the car seat to run his car seat probe. I called M immediately and we both knew this was the step we needed to get him disconnected from all monitors and IV's. Within a couple of hours M had arrived with the car seat and the next day they ran the probe. I had to leave in the middle, I couldn't watch the numbers fluctuating, that if 89 appeared on the screen it would mean he wasn't sufficiently maintaining his oxygen in his car seat and couldn't go home yet. An hour later I got the message from M on my phone...

"He did it!" 

No more wires, no more monitors! The next morning for the first time since he was born, we held our baby and just our baby. 

We were set to go home Sunday. 

I'm so grateful to my parents, that they gave us the ability to stay in a hotel near his hospital for Shabbos. I couldn't fathom leaving him for 25 hours, so for two weeks I'd go for Shabbos morning, go back and join M & Y for Shabbos lunch in our hotel room and then M would join him for the afternoon. Sunday morning we woke up super early, laid out his coming home outfit (that I had actually brought with me everyday to the hospital) and got ready to bring our baby home.

Turns out the preemie outfit was way too big, but nothing could put a damper on that day. We dressed him and took pictures, collected everything we had kept in the hospital, filled out forms, made follow-up appointments, put our baby in his car seat, all 4lbs of him now, and made our way to the NICU doors. 

That's when I heard the Mom next to our now empty isolette tell her baby boy, "one day you're going to be big like him." 

"Big" like our 4lb baby.

I will always remember that whisper.

It will always take me back to that room, the buzzing and humming, the lights and hand washing and rounds. 

The only place in the world where my baby was "big" at 4lbs. 


Previous Posts in the Series: 


 

Thursday, March 10, 2016

An IUGR Delivery

"Well if the baby's as small as they say, labour will be a breeze."

File that under more comments not to say to someone navigating their way through an IUGR diagnosis. 

15 months before I went into labour with N, I had delivered Y.

That was a twenty-six hour production. And I didn't even know I was in labour! I got to the hospital for a regular OB appointment and the receptionist kindly pointed out that the sharp stabbing pains I kept having at regular intervals, were actually contractions. Who knew?

Not the case this time around.



I ended the last post, 3 hours away from the end of Shavuos and on my way to the hospital.

I have at times been called stubborn, I'll admit it. And most of those times, maybe I was being stubborn... But I was so determined to make it to the end of Chag that no one was going to tell me I was in labour. I had seen the OB and had a full scan Friday afternoon, hours before lighting and all was well - or as "well" as it could have been, given the diagnosis of IUGR. Baby was still deemed better in than out. I don't know what it was about Shavuos. I was well aware that I was allowed to make my way to the hospital, regardless of the fact that it was a holiday. I just felt like we had run there so many times, that so much had been thrown into chaos since our diagnosis, that all I wanted was a quiet, drama free yuntif.

Alas, baby did not agree.

We arrived at the hospital and M and I were totally ready for another 26 hour drawn out experience. Honestly, the contractions weren't bad at all, and I was fully capable of walking around and talking, but I just knew something was going on and I knew I had to go in. 

We were admitted pretty quickly, and apart from declining filling out the questionnaire on our triage experience, it wasn't as complicated as I thought it would be, given that it was Shavuos. 

We got into the delivery room and got comfortable. I walked around and we laughed and wondered if we'd actually be having the baby today. After having to prepare so many times, and having one false go, we just weren't sure. 

But I had made it. And not just to 37 weeks, but to 37 weeks ONE day! If labour stopped again, I knew that the OB was planning the induction for that week anyway, so I was as calm as I could have been. I had read about so many women making it to 25 weeks, or 30 or 32. I knew it was a big deal that we had made it to over 37 although I was still terrified that we may have pushed the baby too far.

And then the nurse walked in. She explained, that if the baby was under 2000g it would be taken to the NICU immediately. I asked what the last estimate was from our most recent ultrasound, but the information was unavailable. I did the math. 2000g... That's over 4 pounds. Obviously, now at "full-term," my baby was going to be at least 4lbs... Right?

The next hour or so was pretty peaceful. The contractions were completely manageable. I was informed that the anistheisologist would be heading into a complicated c-section shortly and if I wanted an epidural my window was closing. I wasn't in pain but figured better safe than sorry. I was at about 6cm with regular contractions. The anistheisologist came in and asked if I was in to be induced today. She was shocked when she found out how far I was, given how little discomfort I was in.

Ha.

So I got the "walking epidural" and got into bed to rest for a bit.

Ha.

My total active labour was 22 minutes. The epidural never had a chance. Truthfully I never clicked the button because I thought I had all the time in the world, because...

Y = 26 HOURS

N = 22 MINUTES

Out of nowhere I had a contraction that seriously had me convinced I was dying. Within seconds I was screaming that I was about to deliver. Everyone assumed it was just hitting me that I was in labour. My OB was actually on-call and he had just checked on me and let me know it would be a couple of hours still. When the nurse called him asking him to come back in, he was reluctant.

He barely made it. 

In 22 minutes and with four pushes, and the most vividly excruciating pain I've ever experienced, I went from laughing and walking around to silence in the room.

The cord was wrapped around our baby's neck twice. And they were all staring at him.

M told me that it was a boy, but I wanted to know what else was going on. 

And then they passed him to me and I knew.

IUGR was in my arms.

Growth restriction, my restricted baby, was in my arms.

I held him as tightly as I could because I did not want him to be weighed. I didn't want that number to enter the room and ruin the moment. 

My beautiful baby. I could see the strength in his eyes, but there was no mistaking the struggle in his size.

He fit in my hands. Not my arms, but my hands.

And the nurse, with the most understanding and compassionate eyes, held out her hands and I passed him over to her. 

And a minute later the number entered the room.

1774g.

I had given birth to a full-term, 3lb 14oz baby. 

You just don't know what a 3lb baby will look like until you've held one. I've had people say, that so and so was so tiny, when now I was realizing, they were basically double my baby.

1774g. A number I will never forget. 

And with that number, my beautiful baby boy, who I had held for far too shortly, was on his way to the NICU.

I begged M to go with him and insisted I would be fine. The second he was rushed out and the door closed I cried.

And cried. And cried.

The nurse, our incredible, incredible nurse held me. 

I asked if my baby was going to be okay and she told me that I had to make sure I was so that I could be there for him.

She stayed with me until I was transferred to a room. She brought me to my room and settled me in. She was there during one of my most difficult hours. 

And then she left.

I had to stay in recovery for at least an hour. The second the hour mark hit, I pushed that nurse button repeatedly. Finally someone came and within two hours of giving birth, I was up and on my way to the NICU.

And then the epidural finally kicked in. Because, obviously right?

So into the wheel chair I went. NOTHING was keeping me away from my baby for another second.

And with that, physically numb but emotionally raw, I received my welcome to the NICU.