But if there’s one thing I learned on my journey to becoming a mother it’s that one-size-DOES-NOT-fit-all – especially when your baby weighs 12 ounces at birth!!
Yes, you read that right. Our daughter Lana Rose was born at 24-weeks gestation (which is only slightly more than half of a full-term pregnancy), weighing 12 ounces (330 grams), and measuring 10.5 inches in length. To give you a better perspective: she was roughly the size of a smartphone and weighed the same as a can of soda. The reasons for her pre-term birth are due to severe preeclampsia, HELLP Syndrome and IUGR – topics I plan to cover in a separate post.
In case you didn’t know, November is Prematurity Awareness Month in the U.S. An estimated 15 million babies are born too early every year. That is more than 1 in 10 babies. Almost 1 million children die each year due to complications of preterm birth. Many survivors face a lifetime of disability, including learning disabilities and visual and hearing problems. Globally, prematurity is the leading cause of death in children under the age of 5. And in almost all countries with reliable data, preterm birth rates are increasing – especially here in the United States!
That’s why, on August 16, 2015, at 9:01 a.m., a very incredible miracle was delivered and made my husband and I parents for the first time. To say we were ill prepared for what lay ahead is an understatement! Prematurity doesn’t have a playbook, comes with incredible ups and downs, and far too many possible outcomes and variations that truthfully, no one – sometimes not even the doctors—can predict. We spent six long months with our daughter at Children’s Minneapolis, and in February 2016, we were finally able to bring her home!
Along the way, my husband Mike and I learned some incredibly valuable life lessons – things that made us better, stronger, wiser and kinder people – and the kind of parents that Lana needed to face the many challenges that she (and we) had to overcome. These lessons are ones that can be applied to just about anyone in any number of life’s different situations—and even to parents of healthy, full-term babies. Hopefully, our story can be a guide for you or someone you know going through a challenging or unexpected journey:
1.) Accept, And Ask, For Help
Sounds easy enough, right? Wrong! So many people (us included) are ashamed to accept help or afraid to ask for it. When going through a medical crisis or any life-changing event at one point or another in your life, you WILL need help – in many different areas of your life. We both grew up to be fiercely independent and self-reliant people. But after our daughter was born, and was swiftly whisked away by a flurry of neonatal doctors and nurses, we knew that things were largely going to be out of our control. We realized very quickly that the best thing we could do for Lana was to be by her side and pour all our love, strength and hope into her Isolette. Thankfully, our families live in the Twin Cities, so they were our first ring of support. They drove me to the hospital every morning for the first 8 weeks after my C-section, as I was not able to drive myself. They picked-up groceries for us; prepared meals; took our dog for walks or kept him overnight if we needed to be in the hospital. Additionally, many of our friends, and friends of our parents stepped up and volunteered their time and support. We definitely couldn’t have made it through the six months without the help of our friends and family.
2.) Believe In The Power Of Prayer
One of the first things I did after my C-section (and after regaining some mental and emotional clarity), was to e-mail our close friends and relatives with our Hebrew names so that we could start receiving some prayers out there. We also called our incredible Rabbi (Rabbi Ettedgui), and he made a special visit to our home to give us comfort, strength and a beautiful hamsa to hang in Lana’s hospital room. We also set-up a CaringBridge site and shared our request for prayers. We have family and friends spread out across the country and all over the world. Being there for someone and offering help is sometimes challenging; but saying a prayer and sending good healing vibes into the universe is a free and painless act of love and support. My father organizes The Sephardi Minyan of Minnesota, and everyone in the group prayed for Lana’s recovery. You see, the power of prayer doesn’t just help the individuals affected by tragedy. The power of prayer extends to those that pray, too. It’s a mitzvah that gives on both ends of the equation. Our daughter is now a healthy and thriving 2-plus year old! I don’t think Lana’s story would be possible without the power of prayer.
3.) Always Trust Your Gut
This goes for just about anything in life—but more so in times of crisis. Before Lana was born, I was told by my OB in my 20th week that my pregnancy was considered high-risk. I was told to simply resume normal, everyday life and call if I have any questions or concerns. Between weeks 22 and 23, I started feeling an increasing amount of abdominal pain, fatigue, nausea, headaches and shoulder pain – all of which seemed a little off to me; (we learned later that I was experiencing symptoms of preeclampsia, and its ugly step-sister, HELLP Syndrome). I called the OB three times within that time period, and described the abdominal pain (as that was the most unbearable of all my symptoms). Each time, I was (mis)diagnosed with having round ligament pain—which is basically pain associated with a pregnant woman’s stomach expanding to accommodate her growing uterus. But something didn’t feel right. I finally listened to my gut (literally and figuratively), and on Tuesday, Aug. 11, 2015 at 3 a.m., I woke my husband up in a panic and told him to take me to the hospital. I was having trouble breathing coupled with chest pain. My symptoms had reached a fever pitch, with my blood pressure topping out at 180 over 120. All of my organs were going into a frenzy, hence the abdominal pain and headaches. The shoulder pain, we came to learn, was actually liver pain radiating to my shoulder. Had I continued to adhere to the doctor’s misdiagnosis of my symptoms, it’s very likely that neither Lana nor I would be here today.
4.) Advocate, advocate, advocate!
When going through an acute medical journey, it’s sometimes hard and scary to speak up on one’s behalf. You may feel as though you’re not qualified and that the doctors know best. However, let’s remember even doctors can make mistakes. Several times during Lana’s NICU stay we learned to speak up on her behalf…and for our preference and comfort as her parents. A huge weight had been lifted when we spoke up and advocated for our preference. In the case of being a NICU parent, you feel helpless at times as you aren’t able to care for your child in the way that you were expecting to. Advocating for our preferences empowered us and helped us to regain our strength, confidence and rights as Lana’s parents.
5.) Know that goodness and kindness are alive and well:
Sometimes in the darkest times is when the brightest light shines through, at just the exact moment when you need it most. For us, that light was in the form of food. Deliciously prepared home-cooked lunches and dinners (and yummy desserts, too!), delivered every day to our doorstep for the first three months after Lana was discharged from the hospital. One of our dearest friends took it upon herself to set up a MealTrain for us. We shared it with local friends and family, but our friend “L” took it a step further. She not only shared it to her network, she also posted it to the Minnesota Mammaleh’s Group — a Facebook group for Jewish moms in MN. After hearing about our story, moms from all over the Twin Cities and surrounding areas signed up for our MealTrain. More than 60% of the meals that were delivered to us were coming from moms and families whom we never met before. What tied us together, of course, is our common faith, a handful of common friends and good old-fashioned kindness. To this day, I don’t think I could ever thank the moms and families enough for showing us so much kindness during that challenging time for us.
6.) Take time for yourself:
Everyone seems to say this to new parents in one way or another, and new parents (ourselves included) find every excuse to ignore this piece of advice. The best piece of advice that you can ever follow in any situation—new job, new baby, new relationship, major life change/transition—is to take time for yourself. In our case, it meant taking breaks from going to the hospital, or not staying as late so that we could get to bed at a decent time. Another thing that was really helpful for us as a couple was to take time away from each other. We were going through the most mentally and emotionally draining situation that any parent could potentially face: a long hospital stay with a child in critical condition on life support (at least for the first few months). Taking time for yourself—in whatever capacity that might be—is not only essential but critical to facing and embracing a challenging and/or unexpected journey in life. Take the time, however long you need, and then dive in head-first and take on your challenge with a renewed sense of purpose and determination.
7.) Everyone has a story; don’t be so quick to judge:
We met and interacted with so many different families, and each one had a unique story to tell about themselves and their family. Everyone is on their own path and experiencing life’s ups and downs differently. It’s not always possible to know what’s going on beneath the surface. The times that I was running errands outside of the hospital, I felt as though there were a lot of judging eyes upon me at the grocery store (it might have also been the PPD that was talking inside my head). Ok, I’ll be the first to admit that during the six months that Lana was in the hospital, I was not exactly at my best. I didn’t take care of myself. I looked stressed and worried all the time. I rarely smiled and basically kept to myself. Anyone on the street who didn’t know me or didn’t know what I was going through would have probably made all kinds of assumptions about me, and most of them would have been wrong! Unless you know someone personally, you can never really know their story or what they’re going through.
8.) Turn your obstacles into opportunities
If there’s anything you can take away from this article it’s that your hardships don’t define you, and that you can overcome a challenging situation and come out on top! Right after Lana was born, I was fired from my job (yep, that actually happened). In many ways, it was a blessing in disguise. I was in no shape mentally, physically or emotionally to go back to work. My whole world was just turned upside and inside out. I had neither the mental fortitude nor emotional strength to think about the mundane and everyday concerns of my job. As a result, I became a stay-at-hospital mom, and later a stay-at-home mom for the first 18-20 months.
When Lana came home from the hospital, she had many needs that required a full-time stay-at-home-parent to manage: continuous oxygen; feedings and medications administered through her feeding tube; weekly home nurse visits; multiple doctors’ appointments; chronic reflux and vomiting; feeding therapy; physical therapy; occupational therapy; vision therapy; aquatic therapy; keeping track of all her appointments and ordering all her medical supplies. Plus, in addition to all the medical stuff, she needed all of our love and affection and plenty of kisses and cuddles to make up for all the time in the hospital.
Before Lana’s second birthday, she had outgrown many of her medical needs, and was requiring less and less medical support. She was walking, talking and really just thriving! I knew it was time for me to go back to work. Considering all the changes and challenges that our family had gone through over the past two years, my husband and I thought long and hard about what our next career moves were going to be. Since Mike and I are both digital marketing professionals and possess complementary skills, we decided the best thing to do for our family and for our career was to launch our own marketing consultancy, Proofpoint Marketing. We launched four months ago, in July 2017, and it has been one of the best decisions we’ve made! We work from home, so we have the chance to interact with and be around our daughter on a daily basis (and we don’t have to commute during rush hour!). We found an amazing nanny with a background in nursing. She has become a very special part of our family and has really helped our daughter thrive and advance. And we have awesome clients that trust our expertise and fulfill our professional needs. We plan to remain a remote-working agency, and hope to grow our client roster and hire employees in the next six to 12 months! Most importantly, we are very excited to be giving back a portion of our earnings from Proofpoint to two organizations that are near and dear to our hearts: The Preeclampsia Foundation and The March of Dimes.
Without Lana’s beautiful light in our lives, we would not be on this path today. We would not have met so many of the wonderful people that have helped us and touched our lives deeply. We wouldn’t have learned so many valuable life lessons. We wouldn’t be as close as a couple and as strong as individuals as we are today. We are incredibly blessed and try very hard to live each day as gratefully, humbled and purposefully as we can. And what about Lana, you ask? She is an active, happy, beautiful, playful, whip-smart 2-year-old with a smile that brightens the darkest days. Her spirit (and story) she leaves a lasting impression on everyone she meets.
