Category: IUGR

  • NICU Awareness Month 2019

    NICU Awareness Month 2019

    Originally published on http://www.itsybitsybalebusta.com
    09/2019

    I only recently realized that September is NICU Awareness Month. 

    I’ll admit, I’m a little hesitant when it comes to Awareness Days. After all, who isn’t aware of the NICU? Whether or not you’ve had the misfortune of joining the club, everyone knows of this ward in the hospital and the incredible and miraculous work that takes place beyond those doors. What I tried to shed light on through my IUGR series and what I still feel people aren’t necessarily so aware of, is what it really means to be in the NICU Not only for the child, but for the entire family (you can find the post about our NICU experience, by clicking here). Even more so, I don’t think anyone really understands or acknowledges life after the NICU nearly enough. 

    It took three years for me to realize that I hadn’t.

    I vividly remember begging the nurses and doctors for any sort of indication as to when N would be discharged. I also remember the feeling of giving up asking and realizing that there really was no magical date or timeline. That everyday, we’d take two steps forward and one step back from that exit. He’d maintain his temperature, but then he’d only take a quarter of a feed in the allotted time and the rest would have to be administered through his NG tube. That one afternoon, a nurse would remove said NG tube, much to my celebration, only to return the next morning and see it right back there, taped to his face, because the night feeds hadn’t been successful. It is not a joke or exaggeration when people say that life in that wing is a roller coaster ride. There’s that feeling of losing your breath and your stomach dropping right as you’re at the peak – whether it’s when you’re about to watch a test be administered or when you see the doctor enter the room and you just know the results are in. It’s terrifying and heartbreaking and miraculous and inspiring. 

    The boys were born fifteen months apart. It took another two and a half years before we were ready to add to our family again. I felt so prepared, while I sat in the pre-pregnancy consults and ticked questions off of my list in my notebook. I was addressing all of the issues that had come up during N’s pregnancy as well as his diagnosis and how that would affect subsequent pregnancies and what it would mean for us. I listened to statistics and different courses of action that could be helpful in preventing any issues this time around. I took those preventative measures and met with a whole team, including an MFM and dietician. When the doctor made it clear that I’d be considered high risk, I nodded along and, if anything, was happy that it meant I’d have an increased level of care and monitoring.

    I had no idea.

    I was at that hospital more often during my pregnancy with baby E than I was almost anywhere else. I had two appointments a week – one ultrasound or BPP and a slew of other tests. Not just at the end or occasionally, but for almost the entire duration of my pregnancy. I’ll get into my pregnancy with E more in a separate post, but I want to make it clear that I was being attended to and monitored with the utmost vigilance and care. I had plenty of opportunity to ask questions, address concerns, and work with professionals whose patience and knowledge made all the difference. 

    I know exactly the day there was a shift. It was a couple of weeks after my pregnancy became increasingly more complicated and I had to be put on medical leave. I was seated, waiting for my name to be called for that week’s ultrasound when a new mom was wheeled out of the elevator and her exhausted looking partner was looking around the hallway for signs. For the NICU. So that she could go and meet her baby. Her face, the fear and anguish… it broke me. It took me right back three and a half years. I started to openly cry sitting in my seat. I wanted to run over to her, hug her, and tell her that none of this was her fault, because that’s what I felt the first time I was wheeled into the same room, in the same hospital.

    That was the day that the NICU wasn’t just a memory anymore. It was the day that it once again took precedence in my thoughts. From that point forward I asked at every appointment what the chances of this baby needing the NICU were. What weight she had to be to avoid it. What I had to do to prevent us from ever having to go through that again. Obviously, there were no answers. There were estimates and ranges, statistics, and the same line over and over again, “We won’t know until she’s here. For now let’s just focus on…” There was nothing I could do. Again. 

    My MFM was incredible and listened and acknowledged my concerns and some rational and logical part of my brain also knew that he couldn’t promise me we’d avoid the NICU, but I just wished so much that he could. Baby was measuring small and that meant that my fears were measuring quite large. He referred me to speak to the team psychiatrist who was amazing and reassured me that my fears were totally normal and helped talk me through them. 

    When it came to the delivery day, I was thrilled that I was going to meet my daughter. That I was going to be able to experience being the mother to a strong, brave, and beautiful little girl who had given me such strength throughout my pregnancy each week when I saw her little face on the ultrasound. But if we’re being honest, I was absolutely terrified. I knew we were hours from either being admitted to the NICU or being admitted to a postpartum room. That fear dictated a lot concerning my delivery. When it came to N, I wasn’t allowed to accompany him to the NICU because I had received an epidural and had to stay in recovery. That meant I didn’t really get to see him for hours. I couldn’t let that happen again. Her being admitted wasn’t in my control, but my ability to accompany her should she have to go was (at least a little bit). So that was it, I opted for no epidural, not a single IV, so if she had to go I’d be ready to get up and go too. The intensity of the pain was greater than anything I could have imagined. The only thing that was still greater was the fear. Right before she was born I sobbed and screamed out, “I’m so scared.” At that point every doctor and nurse knew exactly why, as I had been clear from the beginning. They reassured me and seconds later she was on my chest. When they asked me to pass her to them to be weighed I began to sob. I couldn’t breathe waiting for the number to enter the room. Three and a half years earlier it was that number that sent the NICU team into action and whisked away my little boy. The agony waiting to hear that number… it felt like it took

    years. My incredible, strong little girl beat the mark by 104g. 104g meant that she could come back to my arms and would be assessed in room. She passed every single test beautifully and together we were admitted to the recovery wing. I took my first deep breath in months and held on to my littlest hero, knowing how close we’d come. All interventions and tests required were able to be performed in room next to me, and it wasn’t until we were discharged a few days later that I could finally accept that one of the test results wouldn’t return stating she’d have to be relocated to an isolette a floor down.

    I know I’m one of the lucky ones. That both times I was able to eventually bring my children home. That their stays weren’t more complicated or life-threatening. I know that. I also know that the delivery room nurses were well meaning when they reiterated that if my daughter were to need the NICU, she would get the best care and it would be what she needed to grow well and thrive and we’d get through it.

    I’m sure this isn’t what you expected as a NICU Awareness Month post. Part of me feels selfish that I’m not focusing on N. The fact that this was his experience, he was the one who battled, he was the one who deserves all of the attention and recognition, praise and awe. But I just wish I had come across one other perspective like this when I was pregnant with E. One other person whose experience standing by and advocating for their child in the NICU resonated with them in new ways long after the experience was over. I’ll be honest, in the years between Noam being born and this pregnancy, my fears of the hospital and NICU and everything from that experience hadn’t just disappeared. But with each passing day, they faded a little until they were a memory and not a nightmare. But when faced with the fact that this could once again be my reality, I didn’t know how to process it. You’ll see plenty of posts this month about what it means to be in the NICU, but I wanted to share my experience about what it means to be possibly facing the NICU after you’ve lived through it once before. It amazes me that new situations and experiences prompt new moments where I have to face what happened and get through it all over again in new ways, in a new context. Even after you’re discharged, you’re still in the club.

    If you’re facing the reality of the NICU again, if you’re worried or feel like no one understands, know that you aren’t alone. I hope you have a medical team that cares for you totally and completely. I hope you have the support you need to go forward. I hope you have the strength to face each appointment and, ultimately, the delivery. And if you need someone to hear you out, with no judgement and from a place of some sort of understanding, please feel free to reach out. NICU Awareness Month is about the wonderful nurses and doctors, the miraculous babies, but it could also be about you – whether you’re sitting next to an isolette today or remembering back to when you did.

  • IUGR Awareness Day 2017

    IUGR Awareness Day 2017

    Originally published on http://www.itsybitsybalebusta.com
    03/2017

    I cannot believe it’s been an entire year since I stepped out of my comfort zone and shared our experience with IUGR! The response from our series last year, was so overwhelming and has provided such a community on this journey, that I want to share where we are now, another year later!

    I don’t even know where to begin or how to describe the past twelve months. Sometimes I look at N, (who is now only two and a half months away from his second birthday!) and even though the memory of the NICU is still fresh – trying to reconcile the baby whose incubator I sat next to, whose preemie diaper covered his entire torso, and the little hurricane of love and chaos that’s running around my living room – well, I just can’t believe it could possibly be the same kid!

    Where once his photos were marked by the glare of an incubator, they’re now just one giant blur of a little boy running around, trying to take in and discover as much as possible before his Mommy catches him.

    Where I once sat sobbing, wondering how I’d be able to protect this frail, tiny, 3-pound bundle, I now sit holding my breath watching him go down the “big kids” slide laughing hysterically, calling out for me to watch his escapades!

    N is wild and full of energy, love and life. He lives to make us laugh, and walking into his room first thing in the morning to the most enthusiastic “HIIIIIIII MOMMY!” anyone could ever muster at 6am, makes the early wake time bearable. He’s hilarious and a hurricane. He knows what he wants and if he doesn’t get it immediately… well watch out! He’s so social that the librarian at the library we visit a few times a week knows him so well that she has Paw Patrol colouring sheets lined up and Nick Bland books on display. 

    Being a parent is nothing how I imagined it would be. The emotion, fear and love it has drawn out of me is astronomically greater than I could have ever imagined it’d be. There are days where diagnoses, lack there of, appointments and doctors/ specialists/ therapists, become so normal and routine, that when I stop to think about what our schedule and life would look like without them all, I just can’t picture it. Months relate to appointments. I know July means a yearly follow-up at one hospital. I know that every three months there are follow-up appointments at another hospital. I know more doctors and specialists than I ever had an interest in knowing.

    But now I also know resilience. I know gratitude. I know hope and strength and appreciating things that people take for granted. I watch N amaze not just family and friends, but doctors who have been practicing for a very long time. I watch therapists stand back and say, “Wow,” in complete awe, when my little boy, the same little boy whose bones were so fragile a year ago, climbs to the top of the structure in the therapeutic gym, calls out and waves at us from the top, slides down the slide and then happily says, “again!” and is off before anyone can stop him! I watch him light up rooms, waving at and befriending the children with special needs around him, so easily, full of sensitivity and understanding that is well beyond his years. I’ve seen him figure out how to reach his goals despite his tiny stature. In the twenty two months I’ve been Mommy to this superhero, I have watched first-hand what it means to let nothing, NOTHING, hold you back. Not your size, your health, even your well-meaning Mommy.

    I’m learning to give N his space. I spent a pregnancy worrying about delivery, delivery worrying about the NICU, the NICU worrying about the world and then the first year of his life worrying about all the ways he could hurt himself or compromise his health. Everything from a fever to someone holding him incorrectly. I have watched this boy overcome so much in so short a time. 

    Today N is as healthy and rambunctious a toddler as any you’ve seen. While his size does set him apart – below the third percentile (to put that in to perspective, imagine an almost two year old in 9 month old clothing) it does not stop him.

    If you’ve just received your diagnosis, or have just met your (very) little one, I want to give you something not too many people gave me. I want to give you a little bit of hope. Not every story is written the same way, and thank Gd, because I wouldn’t have N if they all were. But I can offer you our story. I can offer you the fact that this little boy who started at three pounds, endured two surgeries his first year, who now in his second year has been discharged from a few specialists but still has an endocrinologist, pediatric orthopedic surgeon, pediatric developmentalist and neonatologist, that THIS boy is thriving. This boy is meeting and tearing down milestones on his

    mission to make “Tiny but Mighty” more than just a catch phrase. This amazing, exhausting little boy is going to change the world. 

    You can do this. You can go to the appointments. You can hear the skeptics and then you can look at your baby and know that for every question mark your left with, your baby has an answer. Their very own answer. One full of life and a strength that is greater than their size. They are feisty, they are strong and they are capable. And they are this way because they’re a reflection of their greatest advocate – you.

    They’ll hear percentiles and diagnoses and endless jargon from their doctors, but they’ll hear the encouragement and the knowledge that none of that is written in stone from you.

    The next time we attend our routine hospital appointments there will be a new set of foot steps running down the halls. N will, for the first time, be able to walk up to doctors and to his NICU nurses. He’ll be able to speak to them. He’ll be able to show them that Mommy’s no longer carrying him around, but that he is now the one doing the carrying. He’s carrying a lifetime of hope and lessons that he’s instilled in everyone that’s ever met him. He’s carrying so much life and love and energy that I just want to go back to the first NICU nurses with horrible images of his future, and say LOOK. Don’t think, don’t worry, don’t tell me what “usually” or “statistically” is likely to happen but to just stay quiet and look.

    Look at my tiny, little boy who’s making everyone around him smile.

    Look at my little boy who’s pointing out things in the room no one would otherwise notice.

    Look at my little boy who looks up to his brother with all his heart, who loves Paw Patrol, bears, cookies and milk, and making everyone laugh. 

    Look at my little boy who continues to spend his days conquering his size, the stares and questions, and the path lined up for him in the limited knowledge and information available on IUGR.

    Look at my little boy whose only restriction he wasn’t able to tear down was that of the intrauterine variety.

    IUGR. NICU. It’s amazing the weight of guilt, trepidation and anxiety those four letter combinations can induce. But what’s also amazing is what those four letters produce as well – namely the little, feisty bundles of strength and courage. 

    Take their little hand in yours (when you can catch them!) and give yourself the gift of stepping away from all the charts and skeptics and fear, and immerse yourself in their adventure and wonder instead. They may be small, but the difference they’re going to make in this world is anything but.



  • IUGR: First Birthday!

    IUGR: First Birthday!

    Originally published on http://www.itsybitsybalebusta.com
    07/2016

    I can’t believe how much time has passed since I shared our IUGR story. It was never my intention to let this amount of time lapse between posts, but something about chasing around 1 and 2 year old boys all day, leaves very little energy after the battle of bedtime has been won (or at least I like to think has been won, and that they’ll be asleep for the night!). 

    Something changed with our IUGR series. For the first time I really felt like my writing meant something. It was difficult to open up about such a private and trying time in our life, but I’m so grateful that I did. The response to this day has been an overwhelming confirmation that sharing our story was something more important than even I initially realized. I’ll admit, my intentions were slightly selfish, using this space as a way to finally organize my thoughts on the experience and give them a new home in written words, rather than just memories following us day to day. 

    So where are we now? If you’ve done the math you’ll realize that N is now 13 months old! That’s right, at the end of May we celebrated his very first birthday! 

    Six days before he turned one, we found out he no longer required monthly nutritionist/ dietician appointments and that he was thriving! Three days after he turned one he was discharged from OT! And I know one day he isn’t going to be so thrilled that his Mama screams his weight from the roof tops, but the week of his first birthday my baby weighed in at… 

    Wait for it…

    17.5 lbs!!!

    SEVENTEEN AND A HALF POUNDS!

    He’s literally over four times his birth weight! My tiny three pound baby is this adventurous, curious, non-stop (like legit NON.STOP.) little boy!

    If you follow me on Instagram, you may have seen a photo I shared leading up to his birthday. 6 days before he turned 1, we had our monthly routine appointment with a few members of his NICU team. I had only been able to bring myself to visit the actual NICU once throughout his first year. It was too traumatizing to walk those halls again, but we did visit once, close to his surgery near the end of last year, and I just wanted to see the place where he had fought his first battles and won, as a reminder of exactly what he was capable of facing. It was hard and there were tears, but it was also so great to see our nurses again and nothing compares to the feeling of “just visiting” and not having to go through the whole sanitization process and taking up a seat, days post partum, next to an incubator, hoping that, that day brought good news.

    This time was different though.

    This was a milestone. This was a celebration.

    It still wasn’t easy for me and for that I felt guilty. This was supposed to be N’s day, a celebration of his first year and everything that he had overcome during it. I have this problem of overthinking and getting anxious. For months leading up to his birthday, the thoughts just kept spiraling and I’ll admit they were self-centered. With each decoration I chose for the party or each detail I organized, I couldn’t help but think, “how am I going to get through this day?” Weird, right? But to me, N’s birthday marked the day my body failed him. It marked him coming into the world where he was better out than in. Where a NICU staff had to pick up where my body had stopped and get N to where he had to be. I couldn’t help but dread the arrival of this anniversary. I barely got to see N on his actual birthday. He was born late at night and taken to the NICU while I stayed behind in recovery. It was a traumatic day. 

    So I worked myself up. I was sure I would be a mess the day of. I had overthought so much about how hard it was going to be, there just wasn’t any other choice.

    And then the week leading up to his birthday came around. 

    Being super Type A, I had a list with everything that needed to get done each day leading up to our little guy’s special day! This kept everything in check, made sure nothing (or at least very little) was forgotten, and that I wouldn’t be stuck doing everything the night before the party! The very first thing on the list? 

    NICU Appreciation Day!

    So back to that Instagram post.. Six days before N’s birthday, we headed down to the hospital for his appointment. But the magic started the day before!

    Countless cups of flour and oatmeal,  so many blueberries and chocolate chips, and even more flour to top it all off! I didn’t know how I was going to walk into that NICU and say thank you to the nurses and staff who got my baby home in thirteen days when initial estimates were in the months range.  Having finally just gotten my feelings in order through writing out our experience for our IUGR series, everything seemed so fresh. The more I thought about it and the more forums I asked, one suggestion came up again and again. And not only was it clearly the answer, it couldn’t have been a more fitting one for this “food blogger” Mommy…

    Baked goods!

    So for almost a full day, the oven, mixer and cooling racks were at capacity. I know what it means to bake with love. To infuse so much excitement and love into a first birthday cake or your baby’s first chocolate chip cookie and feel their excitement and your pride with their every bite. But to bake out of sheer gratitude? This was a whole new ball game. I wanted each muffin to be perfect, each cookie exactly as soft or crispy as it was supposed to be. I wanted our nurses who seemed to never eat, or ever get a break, to feel the warmth and comfort specific to

    a homemade baked good and know that while they’re running around on their endless shifts, they’re thought of, remembered and appreciated.

    The large boxes layered with warm homemade blueberry and chocolate chip muffins, as well as oatmeal chocolate chip cookies and gift cards for coffee for the entire NICU, kept me grounded and calm walking through the halls again that morning. The same halls I’d run through in the morning to get to N and sob through walking as slowly as possible when I had to leave every evening. The halls where I would stand and wait for rounds to be done. The halls where I would put on my sunglasses so new Mom’s doing laps around the floor holding their new babies wouldn’t see my tears of sheer jealousy, as shameful as they were. The halls that saw me walk in 23 ½ hours post-labour, terrified and disoriented and thirteen days later, saw me carry out our little boy. Those halls. Oh, those halls.

    But that day, those halls brought us to a celebration. The shouts of “NICU Grad” when we walked in followed by a rush of nurses to the door were overwhelming. The love and support from this incredible group of people, even a year later, had only grown. How many children do they see come in and out of those doors? But they remembered our baby. They remembered how feisty he was and our little inside jokes. They played such a huge role in our family that I know they’ll always be unforgettable to us, and we’ll do this every year to instill an appreciation in our son for his first team, but to think that they also remembered us? Amazing.

    We spent a fair amount of time there. N’s nurse, the one who was there the night he was admitted, was on shift and I was thrilled. She held him from the second we walked in until it was time to leave. She smiled at N, and looked right at me and said, “I told you you’d make it to the other side.” I had no words. All I could offer, was that I hope next year N runs in and jumps into her arms, instead of having to be carried!

    It was a day that changed everything. I stopped worrying about how I was going to feel on his birthday. I stopped seeing that room as one of nightmares and for a split second I saw it for what it is, only to those on the outside. A room full of so much love and LIFE. A room where every breath, every note and every movement is done to help these new, tiny little beings thrive. I wish I could somehow work it out that everywhere our boys go in life, they’ll have the same

    overwhelmingly supportive, warm, strong atmosphere pushing them and cheering them on. I can say this “from the other side.” I couldn’t say this from that rocking chair. But it’s been a year, and so much happens. You survive days you’ll never think you’ll be able to and go on to face better and sometimes harder, and sometimes super impossible things. And somehow those days pass too. And before you know it it’s time to put on a party hat, bring out the cake and celebrate. 

    I walked into N’s room on the morning of his birthday, to find him standing in his crib smiling. All the worry, all the anxiety about how I’d feel that day evaporated. We went for ice cream and to a play place (which the four of us got to enjoy to ourselves, since it was completely empty!) and we had pizza for dinner and we celebrated and spent time together and really enjoyed the day. I will admit, his Hebrew birthday was difficult. As Shavuos  wound down I couldn’t stop thinking about how a year before I was on my way to the hospital, ending the holiday with a 22 minute terrifying labour. It felt more real and scary and difficult than I had expected it to, but thankfully the feelings passed just as quickly as they arrived.

    So now we’re in to year two. N is crawling at what feels like lightening speed, pulling himself up and walking along furniture. He’s babbling endlessly, has a bunch of words and loves to sing and dance all day long. He pretty much never stops and hasn’t shed his feistiness from those NICU days one bit.

    *One of the greatest tips I received on my search for how to thank the NICU, was to split up the gift! Bring boxes for the day staff and separate boxes for the night staff to ensure they get to partake in the fun and know they’re remembered and appreciated too!

  • IUGR: 9 Months Later

    IUGR: 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.

    IUG…What?
    Part 2: An IUGR Pregnancy
    Part 3: An IUGR Delivery
    Part 4: IUGR and the NICU
    Part 5: IUGR 9 Months Later

    Originally posted on http://www.itsybitsybalebusta.com
    03/2016

  • IUGR and the NICU

    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.

    IUG…What?
    Part 2: An IUGR Pregnancy
    Part 3: An IUGR Delivery
    Part 4: IUGR and the NICU
    Part 5: IUGR 9 Months Later


    Originally posted on http://www.itsybitsybalebusta.com
    03/2016