Hospital Mom

October 2018

It’s 2am and I jolt myself awake again. I can hear Harper’s monitors in my sleep. I try and fall back asleep as images of Harper’s most dreadful moments flash through my head. Her lifeless 2 pound body, her blue face, the doctors yelling “start chest compressions”. Nothing prepares you for these moments, yet this is the reality you live in as a NICU parent. There is no escaping this reality, and no amount of counseling or self-care will make it any less traumatizing.

On September 30th, 2018 Harper was born at 1 pound 8 ounces. She spent a total of 176 days in the hospital. I have probably shared her story 100 times since she was born - proudly proclaiming every obstacle she’s overcome, and timidly retelling some of her scariest moments... but very rarely have I shared my story. Many of our friends and family kindly will ask “How are you holding up?” to which I respond “we’re hanging in there” or something of the sort, so as not to sound in-genuine while trying not to unleash the volcano of emotions stored up inside of me on some well-meaning acquaintance in the grocery store. So, this is my journey through Harper’s hospitalization and homecoming. Warning: This is far from a heart-warming story with a heroic homecoming or storybook ending. The following is my raw and honest perspective on suffering and life with a medically complex preemie.

When our journey with Harper first started the shock of it all kept any real pain and emotion at bay. Nothing seemed real. I felt like I was in a bad dream that I needed to wake up from. No matter how hard I tried to keep myself grounded in reality - my brain simply could not process it. As the weeks passed by reality began to sink in, but the hope of a glorious homecoming with our baby - though perhaps months away - kept us going. Slowly the weeks started to turn into months and our glorious homecoming quickly began to slip out of our fingertips. About 3 weeks after she was born, Harper was hit with a staph infection that nearly killed her. That staph infection spread to her femur bone and she needed surgery to remove it. Weeks later she caught pneumonia. And then caught it again. And again. For 42 days she was on antibiotics. Then Harper needed heart surgery, and eye surgery. The list goes on. I can’t count the number of times Harper has turned blue and needed intervention to keep her breathing, or even her heart beating. With each hurdle, my exhaustion grew as did my skepticism for us ever finding a light at the end of this tunnel.

Days turn to weeks and weeks turn to months in no time in the hospital. Nothing happens quickly. As you can imagine, your patience and sanity grow thin with each exhausting day. Alarms are sounding constantly. Doctors, nurses and specialists are asking to evaluate your child at all times - IVs, X-Rays, Sonograms, shots. Every stressor on your child becomes a stressor on you. Holding your 4lb baby’s head and arms down so a nurse can stick an IV in her head because we’ve blown ever other vein in her body from multiple sticks NEVER. GETS. EASIER. It is dreadful, but you power through it and do what you need to do, because what choice do you have? You don’t have the luxury of breaking down - though everything inside of you wants to.

My morning begins with a call into the hospital. I have the hold music from the hospital memorized and it gives me anxiety just to hear it because I know that with every phone call there is the possibility of hearing the nurse say “she had a rough night”. What does rough night mean? I want to say... she was cranky? Or she turned purple? Did she need resuscitated again? It could mean anything. I rush to get her laundry finished, down a cup of coffee, calm myself enough to sit and read and pray for a few moments and then head out the door. The next 8-10 hours consist of incessant alarms, nurses and doctors in and out, keeping Harper happy, holding her pacifier, rocking her to sleep just so she won’t turn blue from crying. One afternoon I might be lucky enough to leave the hospital when my husband gets off work. I walk through the grocery store and I hear something that sounds like one of Harper’s alarms. Immediately my heart starts racing, and I begin to feel anxious. I force myself to slow my breathing and remind myself of my current reality. I’m in the grocery store not the hospital. But what about Harper? Is she ok? I should call the hospital. After dinner I numb myself by watching Netflix. After 3 hours of not being at the hospital though, the guilt kicks in. Am I being a good mom? How could I leave her? What if something happens and I’m not there? Then guilt leads to more anxiety - sometimes badly enough that I physically start shaking.

March 2019

Fast-forward a few months to your long-awaited triumphant homecoming. After months of waiting for your sweet baby to be joining you at home the day finally arrives! She’s coming home! Much like your wedding day or some other long-awaited occasion, you have romanticized this moment so much in your head, that the following days stand almost no chance of living up to your expectations. It is a bittersweet day. The hospital people have become your people. Some of your only friends are now nurses and doctors and respiratory therapists. They have loved your child so well that saying goodbye to them is like saying goodbye to family. You are so excited to leave the hospital, but up until this point you didn’t realize that the hospital is your safe space. You trust the hospital. You know the hospital life… in fact it’s all you’ve known for the past 6 months. Now, you are about to enter into a whole new world of unknowns where you and a nurse that you’ve most likely only met once will be responsible for caring for your child 24/7.

You finally make it home after weeks of preparing. Your neatly organized home – the place you used to go to get away from all the hospital chaos - suddenly becomes eerily like a hospital room. Medical supplies fill your Living room – trach supplies, g-tube extension, feeding bags, emergency supplies, gauze dressings, suction catheters, ventilator circuits… all spread across your house. Joining you at home the day of your arrival are 3 nurses from your home care agency and a respiratory therapist. Hours of paperwork and endless questions follow in your home as you try and get your baby settled in her new environment. And then… everyone leaves. Silence. And it hits you. That the only thing standing between your baby and a life-threatening emergency is you and your training, and your ability to respond appropriately. Terrifying.

Every single piece of your daughter’s equipment has an alarm. A loud, annoying alarm. Her pulse-ox machine, her ventilator, the heater to her ventilator, her feeding pump… all sounding simultaneously to create an inharmonious symphony of chaos. Harper’s pulse-ox machine detects the amount of oxygen in her blood at any given moment. This is a safety measure to ensure that her body is getting enough oxygen given her unstable respiratory status. The only problem is that it ACCURATELY detects the amount of oxygen in her blood about 25% of the time when she is awake. A kick or a scrunch of the toes sends the machine into a tizzy thinking she’s not getting enough oxygen… ergo, it alarms…. About 100 times a day.

Your new normal is far from normal. You have a daytime nurse who is wonderful, but she is a new person you must learn to trust and at first she knows far less about your daughter’s care than you do. Night nurses are scarce, so you make do without one. All parents know the pain of sleepless nights with a new baby at home, but let me just say – you’ve never met a more exhausted parent than a trach/vent parent… I can guarantee you that. You take shifts staying awake during the night with your husband. On a good night you might get 6 hours but usually its closer to 4. You must stay awake and alert, even when your baby is asleep, because at any moment your baby’s trach could plug with mucus making it impossible for her to breathe, suffocating her in an instant.

Night after night of 4 hours of restless sleep starts to wear on a person. Each day that passes you begin to feel less and less like yourself and your anger and frustration at your loss of so many dreams grows. There is a thin veil between the ugly, crazy, scared, angry person deep down inside of you that you never wanted to meet and the controlled, normal human being you are pretending to be. But it feels as if there is no space for transparency. Losing control is a luxury that you often don’t feel that you have.

Of all of the terrifying, life-altering pieces of living with a medically complex child, the isolation is by far the most shattering. Days might go by before you even step foot outside the house. A trip to the mailbox may be your only exposure to the sun all day. You become your own worst enemy… trapped within the 4 walls of your house with an endless amount of both time and stress… the perfect storm to remind yourself just how out of sorts you really are.  Trips out of the house are a gift. You begin to view a trip to the grocery store as “self-care.” If you do muster up the courage to venture out of the house with your daughter, you are in constant fear of the unknown. What if someone gets her sick? What if she has an emergency in the car? But perhaps more dreadful than the physical isolation is the emotional/spiritual isolation felt daily. No matter how hard your friends and family try – almost no one truly understands what you’re walking through. How could they? You feel as if you’re trapped on an island with your chaotic life. You can see the mainland from where your standing – it looks so perfect… so easy… so normal. Passersby send their love, they might even bring you a meal or even stay and visit for a time, but soon their ships are headed back to mainland, and you are left to navigate your not-so-normal life. Nobody can navigate it for you. Even if they wanted to.

Truth be told, friendships are hard. By the end of the day you are so physically, emotionally and relationally drained that a single phone call can feel overwhelming. Though you want others to understand your pain, sharing the details of your child’s care over and over again becomes exhausting. Replying “I don’t know” to the question “So when do they think she’ll get the trach out?” for the 100^th time depletes any enthusiasm you might have. You do begin to appreciate the sweet souls, some of whom unexpected, who begin to rise up in your life and support you consistently with no expectation of anything in return. Voicemails and texts go unanswered but they still call week after week. Sweet cards and notes arrive in your mailbox. But you will also grieve the loss of many dear friendships… of those whose lives are moving on without you because your lack of emotional capacity keeps you from maintaining friendships the way you used to.   

Grief used to be a word I thought was reserved only for death, but being a mom to a medically complex child introduces you to a world where grieving the loss dreams becomes a part of your daily routine. First it was leaving the hospital empty handed. Then it was not being able to hold my baby whenever I wanted, then it was dreams of what first holidays would be like. Then you must begin grieving what a “normal life” was supposed to look like with your child… playdates, walks to the park, trips to grandma and grandpa’s house etc. not to mention, grieving the loss of your career which has been abruptly put on hold to care for your child.. grieving friendships that will never be the same. The list goes on.  Many days the overwhelming pain, sadness, grief, anxiety and guilt compounded into one day feels like too much for any single person to handle. Some days I’ve had the thought “I just don’t want to be Harper’s mom anymore.” This is a suffering that you cannot escape no matter how hard you try. There is no real “coping” with your reality, because you have a new reality every day. And the timeline for this madness is undefined.

For a while, you are strong, hopeful, brave. But after a while, this sort of hardship causes even the most resilient of souls to begin questioning the most basic foundations of their beliefs. If God is real, how could he call this sort of “plan for my life” a good one? Can God really say he loves me if he is willing to watch me suffer like this? Whether you believe that God causes suffering or he allows it, either way, if he’s any sort of real god he has to have the power to fix it for me…. Why wouldn’t he? Ok, God… my baby has knocked on death’s door, and now she’s on a ventilator… I’ll give you that one – at least she’s still alive – but the loss of friendships too? The loneliness? The loss of my career dreams? The anxiety attacks? The night nurses quitting on us leaving us exhausted from staying awake all night? The stress on our marriage? … When will enough be enough for you, God? Why me?  What do you want from me? How do you expect me to trust you when you’ve allowed something like this to happen… when prayer after prayer goes unanswered? To be honest, I’m angry. Like really angry. Like spewing out cuss words at God at 4:30 in the morning when my daughter is covered in formula because her g-tube feed was leaking all night, angry. Like losing it because Chipotle got my order wrong again, angry. Like desperately wanting to cry because you feel like the straw that broke the camel’s back was like a whole hay bale ago, but you can’t because your tears dried out months ago kind of angry. Truthfully, a year ago, I felt confident that I knew the answers to these questions. I felt sure that I could handle these types of hardships with pure grace. As it turns out, it’s easy to know the right answers about suffering when you’ve never actually suffered. Today, I can’t easily answer any of these questions. I wish I could. I stand before God speechless at the seemingly harsh journey he has mapped out ahead of me, desperately searching for a glimmer of hope… searching for freedom not only from my circumstantial hardship, but from the ugly, broken, sad and angry parts of me that these circumstances have uncovered.

Someday soon I will share with you some of the glimmers of true hope and some of the valuable truths my husband and I have learned so far from this process (because we do have some). But for now, this is what you get. Because this is real. And because sometimes, it is ok to be sad and angry and broken and it is ok to not have any of the answers.