And then there was you, my sweet Oliver Blue…
On September 15th, 2015 at 12:37 my sweet Oliver Blue was born. From the moment he was born, I have desperately wanted to tell his story and share our journey. I have also desperately wanted to sleep, and shower, sleep, and did I mention sleep? Turns out blogging is not so easy with a newborn. But thanks to
late night all night feedings, my brain is filled (albeit foggy) with a story like no other. For there is no one else like you, Oliver… this I know…
When I was about 31 weeks pregnant, I found out Oliver was breech. Not to worry, I was told. Babies often flip on their own… In fact, only 4% of babies are actually still breech at term. A few weeks later though, Oliver was still head up, butt down and the last thing I wanted was to end up with a C-Section. To this day, I still have this completely idealized/romanticized vision of Jonah’s birth… While 24 hours of labor was no walk in the park, I remember the process being perfect and I swear, when he was born, I saw this angelic-like white light. Granted it was likely the delivery room surgical light they used to make sure my hoo ha was still in tact after pushing, but to me, it was magical and in some ways, enlightening.
Eight years later, I so desperately wanted the white light again. And I especially wanted to experience that with Peter. (Even if he wasn’t going to look “down there.”) SO I was willing to try anything. Armed with all of my “I know how to fix this” know-how, I went to a very well known prenatal chiropractor in LA who is known to work magic through massage and adjustment to get baby to turn. He pushed, he pulled, and he practically turned me upside down for 4 weeks… Simultaneously, the plan was to I try out a form of acupuncture called Moxabustion, in which you burn Mugwort on the outer edge of your pinky toes. If you’re unfamiliar with mugwort, it is basically a black chalk stick that smells like a mixture of bark, ass, and a dumpster outside of an herb store in Chinatown. You can imagine how delighted Peter was burning these sticks nightly at my feet for 10 days straight for 15-minute stretches. In many years from now, your dad can tell you this story and we can all have a good laugh at how nutty this was. I have a feeling you and your brother and dad will have a great time teasing me and all my wacky ways…
Call it kooky, call it “so LA,” but research suggests that massage, acupuncture, yoga, inversions, Chinese smoke sticks and even the handstands in the pool that I did all could have helped the baby flip. But alas, he wasn’t budging. So at 37 weeks I had to make a tough decision: Schedule a C-Section or try an External Cephalic Version, a procedure done in the hospital in which your OB manually/externally tries to push the baby around into position.
But something about the ECV just didn’t sound right. Something about it felt drastic. Peter and I felt like it was messing with Mother Nature. As much as I dreaded the idea of a C-section, we felt like there had to be a reason that he’d been breech… You must have loved this position. It’s the way you’ll lay on my chest, I would think. So maybe, just maybe, This is the way you are supposed to be born, Oliver… This will be your birth story.
So, we scheduled a C-Section for September 15th at noon. As a woman who panics at the notion of taking an Advil if I’ve had too much diet coke, (there’s got to be severe interactions, no?), I was terrified about the amount of anesthesia that was going to be pumping through my veins and even more terrified about the recovery. When we got to the hospital that morning though, the same nurse who was our instructor at our birthing class greeted us. We took it as a sign—this was what was meant to be. She was loving and sweet and even let Jonah back into to the room before I went into the OR. Everything was going to be perfect.
The OR was cold and white and weird like I expected. It’s surreal… Shmoozing with the tech nurse about what Pandora station you’d prefer during the surgery, all the while knowing that in exactly X amount of minutes your life will change forever.
The procedure started and I remember Peter by my side as they tugged and pushed… the weirdest sensation in the world. But then we were getting close…”Here comes his butt,” the doctor said, ”Get your camera ready.” I looked at Peter. Brett Dennen’s “By & By” came on. My eyes welled with tears. Peter squeezed me. It was about to happen. The white light would be different this time but I would still feel the warmth.
But something in the room shifted. Something changed.
“Hang on just a sec,” we heard the doctor say followed by mumbling and yanking and pulling and more pulling on my belly. “Is everything okay?” Peter asked. “Yes, he’s just a little stuck said the doctor.”
In a conscious effort to stay calm, I inhaled and exhaled slowly. Next thing I remember is more pushing and pulling and someone saying, “What’s THAT?” and the Anesthesiologist leaning over the curtain and saying, “WHOAH!” and my doctor saying, “Call Peds, get Peds…”
Oliver, one day I will get through telling this story without crying, but you should know I’m sitting at our local coffee place, which you will become very familiar with quite soon, and I am crying. Granted, this is my first time basically out of the house and I’m operating on like 3 hours of sleep and I may be currently leaking milk through my shirt, so I’m sort of a hot mess. But it’s still hard to talk about. It will take time. I hope I can one day teach you about patience and time… Or maybe you can teach me.
At 12:37 Oliver Blue Heilbron, 8lbs 4oz was born and a few seconds later (which felt like hours) we heard his glorious cry. I couldn’t hear the music anymore. Just his cry followed by lots of doctors and mumbling and “Stay calm, Jennifer, we’re almost done.” I couldn’t speak. I didn’t want to speak. I was terrified to speak.
“What is happening?” Peter asked. The doctor calmly said, “He has a mass on his chest. Peds are on their way.”
“What… Mass…” I tried to get out words but shaking had started and I couldn’t. This is what Oliver looked like moments after birth. Though his mass is a little bloated here because of all the fluid from delivery, this is essentially what it looks like. This is part of Oliver’s body.
The next part, hours really, are a blur to me. It was Peter that did the doing. It was Peter who would be my son’s champion. I couldn’t do anything. It went something like this… Peds rushed in. They told Peter they didn’t know what the mass was but they had to get him up to NICU right away and did he want to go. My poor husband was very torn—here I was still in surgery—but of course, “Go, go,” I kissed him and the head of my gorgeous boy before Peter and a team of about 10 or more people went up to the 4th floor. Oh, the 4th floor. I hope no one ever has to take his or her baby to the 4th floor.
As soon as they got up to the NICU, Peter said everyone was scrambling—NO ONE knew what this mass was. Apparently words like “Tumor” and “Cancer” were muttered. At one point, Peter said a doctor was Google imaging “large chest mass on baby.” Not exactly reassuring. Finally, moments later, the head of Pediatric surgery came through the door and within seconds looked at Oliver and knew what it was, “Lymphangioma. This most definitely is Lympangioma.”
Downstairs, I was in recovery trying to find out what was happening. My baby had a mass. Was he okay? When could I see him? Was I ever going to see him again? I was panicked. Finally, Peter and the Head of Pediatric surgery came to fill me in. The doctor explained what it was and how they would likely treat it (which wouldn’t be for a while). He assured us, “He will live. This is not life threatening. I promise you.”
“But how,” I sobbed. “How did this happen? When did this happen?” I had had tons of ultrasounds. I had the best doctors, the top treatment. I am a renowned hypochondriac and with a list of questions at each visit. I asked if it was possible they missed this. Did I ignore warning signs? I don’t ignore anything. The doctor said emphatically, NO… to everything. Except for him being breech. This is likely why he was breech. He was stuck. Or not. Or maybe because of this mass, he just liked that position.
So, why did this happen? WHAT DID I DO?
“Before you start blaming yourself and wondering what it is that you did—the marijuana you smoked in college, or that questionable guy you once slept with, I can assure you, there is nothing you did to cause this.” Through the convulsing and shaking, I managed to laugh. He went on, “This is very rare and random. A total fluke.”
“But last year… exactly a year ago, I was pregnant…” I cried. Peter told him about our loss. “Is there a correlation between that baby… the trisomy 13 and this?”
“Nope. Nothing. You unfortunately were struck by lightening twice.”
But I didn’t believe this. No one gets hit by lightening twice. That’s something people just say to make you feel better. Something has to be wrong with me. How could I have done this to my baby? How could I have done this to Peter? My heart ached with fear and guilt…
A side note– Apparently, when Peter was finally able to go to the waiting room to tell our family that Oliver Blue Heilbron had arrived (which
was over an hour after I was supposed to deliver– so you can imagine how panicked everyone was) Jonah sensed there was trouble. Peter told him he had “a bump” on his chest, but that he would be okay. Jonah took one look at the photo and said, “Aw! He’s perfect!” And you are…
Finally, at 5pm, nearly 4 hours after Oliver was born, I was wheeled up to the NICU to fully see and hold my baby boy for the first time. Jonah was with me.
So sweet, so calm, so excited and not phased by the severity of the situation. He had a baby brother. Did anything else matter? Oliver, you will never have a bigger fan and protector than your brother. If you ever doubt just how special you are, look into his eyes. They reveal everything.
The next few days at the hospital were overwhelming, terrifying, and comforting all in one. When one doctor came out, another doctor came in. When Peter would fall apart, I would keep it together. When I became unglued, he picked me back up. After a nurse that came in to check his hearing remarked that maybe the mass “was supposed to be a twin,” and “we just need to get rid of it,” we realized that not everyone will treat Oliver with love and dignity as we do. So Peter bravely sent an email to all of our friends and family to share with them what was going on with Oliver… to show them what a healthy baby with a lymphatic malformation looks like. Oliver, I am so sorry the world is so cruel. Do we wish you weren’t born with this? Yes, but Daddy and I realize that if this mass wasn’t a part of your body then it wouldn’t be you. And I wouldn’t trade you for anything in the world. By the way, Jonah wants you to know that that woman was a “farty jerk” and he will “kick her ass” if you want him to. Yes, “ass” is a bad word and yes, I let him say that… because you’ll learn, sometimes, even when you’re 8, you just need the real word.
A week after returning home we went to Children’s Hospital LA to meet with one of the world’s foremost experts on Vascular Anomalies. The doctor determined that Oliver has a lymphatic malformation -a disorder of the development of the lymphatic vessels, which occurs sometime between the 8th and 12th week of pregnancy. It is extremely rare… it occurs in 1 to 5,000-7,000 children and even more for newborns at birth. Mostly it is seen in their necks or other extremities. Rarely is it seen under the armpit on the chest. I could try to explain it here, but you’re better off just reading about it. I found this description to be the most straight forward.
In Oliver’s case, they believe there to be 3 macro (or large) cysts that are stuck together. To treat this, Oliver will have to undergo a series of injections known as Sclerotherapy. He will likely need 3 treatments and they will be done 2-6 weeks apart, all of which will require general anesthesia. These procedures will start around his 6-month birthday. In January, we will take him for an MRI (which will also require general anesthesia to keep him still); the MRI will serve as a roadmap for Oliver’s doctors to know how big the masses are and how they will treat them. He has had a chest X-ray and ultrasound and at this point, they do not believe the mass is interfering, connected, or touching any vital organ. Unfortunately, the mass does push up his right arm, thereby causing shoulder abduction. Here’s a picture of our little guy working with the physical therapist practicing his modified version of tummy time.
While he has full range of movement in his arm, there will be some issues with his shoulder and possibly muscle/bone structure as he gets older. At some point, he will need to see an orthopedist and this may require surgery. We have already begun weekly physical therapy sessions, which help us work on exercises to strengthen his neck muscles as well as figure out how to navigate everyday things like the car seat, sleeping positions and solutions… On that note, Little One, you will eventually sleep, right?
Thinking about the road ahead is overwhelming, scary, and also hopeful. There are so many questions and still so many unknowns. How will this look after the procedures? Will it for sure require surgery? Will it reoccur? Will he be able to throw a ball and play baseball? Whether or not he will play little league may seem trivial and selfish to ask, but we are real parents. And parents ask these questions.
We have sought the comfort and guidance of therapists, rabbis, friends and family. One of the questions we kept coming back to was WHY this happened… if there wasn’t/isn’t a medical reason, is there a spiritual reason? Are we being punished? I’m not going to get into a whole theological discussion here, because a) I’m determined to finish this post and b) I’m operating on two
nights weeks of zero sleep, but one of the things our rabbis helped us understand was that Oliver’s Neshama, his “spirit” or “soul,” is what God intended for us to see and nurture. If there is a “reason” at all, it is because we were intended to be his parents and this was meant to be his story. Thank you for choosing us, Ollie boy.
But still, I’m his mommy. And mommies worry.
As imagined, there isn’t a large support network out there in the blogosphere for parents/children with lymphatic malformations. As we continue to learn more about Oliver’s condition, I hope to share about our experience in the hopes that maybe I can connect with just one other mom out there who is going through what I am. In the meantime, I miss blogging. I did a lousy job this summer keeping up to date (not going to blame it on a new house and being pregnant, but I’m just going to say it was hard with the new house and being pregnant). I started this blog when I was a new mom with Jonah and it’s always been my outlet for storytelling, sharing and kvetching. Where else can I talk (cry) about my tribeswoman mammaries AND share tips on designing a darling nursery at the same time? I cover it all, people! And I’m feeling desperate to get back to that part of me and back to feeling “normal.” It’s pretty easy to beat myself up about the fact that in 4 weeks, we’ve barely left the house and I’ve washed my hair only 3 times. But life isn’t what it was 8 years ago when Jonah was born. I was younger and I didn’t have another Jonah. I also didn’t have a C-Section and a baby who was born with a medical condition I wasn’t prepared for. We’ve been thrown a major curveball. So for now, I’m trying to move slow, take one day at a time and be as kind to myself as possible, which is harder than anything else I’m realizing. But since I don’t have the energy to write, I can’t fit into any of my clothes, and my hormones are still wackadoodlydoo, I might as well curl up with my Ollie B… on my chest… head up, butt down, exactly the way you like to be.