Andrea Mullenmeister

@andrea-mullenmeister | contributor
Andrea Mullenmeister is a writer and mother to her warrior son who was born more than four months before he was due. Andrea writes about her family’s story of love, hope, and survival at An Early Start. You can also follow her on Facebook, Twitter, and Pinterest.

5 Things to Say to a NICU Family

As the mother of a premature baby born at the edge of viability, I have heard all kinds of well-meaning comments. Many times, these well-meaning comments weren’t actually supportive or helpful at all. I know people weren’t trying to be insensitive when they said things like “Will he be normal?” or “Since he was so small your labor must have been really easy!” Sometimes, it’s hard to know what to say. When a friend or family member said the “right thing” during our 93-day NICU stay, it was amazing. We felt supported and loved. Here are some examples of comments that made us feel better. We hope our experience can help you figure out the “right thing” to say to someone who is dealing with a medical crisis. Dear Friends and Family, Our baby is in the NICU. We should be celebrating right now, but we’re terrified. We need you. And we realize you probably have no idea what to do… Here are five things to say to us while our baby is in NICU… 1. Congratulations! Even though our baby was born sick, we are still new parents. We would love to hear the words “I know this is not what you expected, but congratulations!” This way, you are acknowledging that things did not go as planned, but you are also helping us remember that we had just had a baby, and that deserves to be celebrated. 2. “I’m going to make you dinner.” We are not focusing on our to-do list — we are focusing on the life of our child. Try not to say, “Let me know what I can do to help.” That puts the responsibility back on us and makes us feel even more overwhelmed. Instead, offer specific help, such as, “I want to bring you dinner on Tuesday at 5 p.m. I will package it in containers I do not want back, and I will put it on your front step in case you don’t feel like talking. Does that work for you?” (And then follow through!) 3. “I’m thinking about you.” We realize it’s hard to know what to say to us. That’s OK — we are not the best conversationalists right now, either. We would love it if you sat with us for a while in the hospital cafeteria, no words necessary. We would appreciate it if you sent us a card or note letting us know that you’re praying for our family. No matter your faith, we appreciate all prayers and positive thoughts. In the case of an extended NICU stay, it can be pretty jarring to realize that life goes on for everyone outside of the hospital walls. We need to know you’re still thinking about us! Please keep emailing or texting — even if we don’t respond. 4. “Of course I’ll wash my hands.” Keeping our NICU baby healthy is a top priority for us. If you will be a part of our lives, keep yourself healthy, too. Please don’t visit our home if you have a runny nose, cough, sore throat or any other sick-y feeling. It’s simply not true that preemie babies “need to be exposed” to germs. Also, please respect our wishes when it comes to vaccines and our decision to isolate our preemie once he comes home. 5. “This must be so scary for you.” Sometimes it’s easy for an outsider to think, “What’s the big deal?” Even if you think you would handle our situation differently, we are doing the best we can at the moment. We don’t want to hear comments that discount our experience. For example, if you’re tempted to say “Don’t worry — your baby will be just fine” or “I have an uncle who had a friend who had a preemie and he’s doing great!” Don’t. Every preemie is different, and we don’t know what the future holds for our baby — and neither do you. It doesn’t make us feel better when you downplay our situation. Our world has just been turned upside down and we are dealing with a lot of unknowns. By simply acknowledging that, you can help us feel less alone. Thank you for being here for us. We appreciate everything you are doing for our family right now. We know how different this is for you. It’s different for us, too. We are keeping hope that our baby will get better and come home soon. Until then, we need all the help we can get. Love, A NICU Family Follow this journey on An Early Start. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Letter to the Extended Families of Preemie Babies

Preemie parents struggle to find balance. When our baby comes home from the NICU, we want to celebrate. We want to have everyone over to ooh and ahh over the tiny being. We want so badly to have a “normal” experience with our baby. But we are also painfully aware of the risks involved. When doctors began talking about our son, Jax, coming home, they simultaneously talked about the importance of isolation. One of our doctors told us “the most effective way to prevent sickness and re-hospitalization is to limit exposure.” No contact, no germs. Maybe it’s not time to celebrate after all. Thankfully, our family has been very understanding about our decision to keep Jax in isolation during cold and flu season. I think they “get it” because we started an open dialogue with them before Jax was even out of the hospital. We shared all of the information from our doctors. We shared our concerns. We asked for their help keeping Jax safe when he came home. Unfortunately, some preemie parents get resistance from family about their decision to keep their preemie in isolation. So here’s what I have to say to those people. Dear Extended Family, Isolation isn’t about you. Let me explain… Babies who are born prematurely are different than full-term babies. First, premature babies have under-developed lungs and often require life-support and breathing tubes for days, weeks and even months. An important goal for every premature baby is to breathe on their own. Unfortunately for some preemies, this doesn’t happen. Some preemies come home on oxygen support or on a ventilator. Their tiny lungs are not capable of keeping them alive without the help of a machine. Even if there are no outward signs of breathing trouble, a baby born before 37 weeks might have immature lungs. (You can read about how babies grow in the womb here.) Second, “during the last three months of pregnancy, antibodies from the mother are passed to her unborn baby through the placenta.” A baby is born prematurely misses out on these antibodies. “Premature babies are at higher risk of developing an illness because their immune systems are not as strong and they have not had as many antibodies passed to them.” When you put these two things together — immature lungs and a weak immune system — you have the perfect storm. A simple cold can cause respiratory distress and re-hospitalization. We are in isolation to keep our baby out of the hospital and living. It’s not about you. So, please don’t be offended when we: Decline your invitation to the party. Ask you to wash your hands! (A lot!) Ask you to get a flu shot and a Pertussis vaccine. If you choose not to do this, please don’t be offended if we choose not to allow you to come in contact with our baby. Don’t allow you to visit when you are sick, even if it’s “just the sniffles.” Ask you to remove your shoes when you visit. Remind you not to smoke before visiting, or ask you to shower and change your clothes prior to visiting. Third-hand smoke is real and babies with immature lungs are extremely sensitive to smoke. We know these things can be a drag. We know hand-washing can dry out your skin. (We will still ask you to wash and give you lotion.) We know you think your new boots are really cute with your outfit. (We think so, too, but we will still ask you to take them off.) We know you believe in alternative medicine. (We do, too, but we will still ask you to get a flu shot.) We know you have always heard that “babies need to be exposed to build immunity.” We know this isn’t true for preemies. We know this is different for you. It’s different for us, too. We know you want to see us! We want to see you, too. We miss you! But for now, we need to do what’s best for our baby. Isolation is a way to keep our baby healthy and out of the hospital. I know how much you love our child. So we know you’ll do everything you can to keep her safe, even if some of the things we ask you to do are out of your comfort zone. Thank you for your understanding, A Preemie Family A version of this post originally appeared on An Early Start. The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to community@themighty.com . Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines. Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night .

What the Phrase 'Million-Dollar Baby' Means to Me

When I went into labor 17 weeks early, there was no time for us to consider our “options.” When the nurse handed me the consent form, I had no idea what I was signing. I had no idea the life of my unborn baby was literally in my hands. At that moment, I didn’t know that babies born too soon are babies who are born sick. I didn’t know they spend days, months and even years in intensive care units. The only thing I did know was that I was willing to give my baby every chance he needed to grow into a kind and curious human being. I believed in him. And I signed the paper giving permission  for doctors to use “all means necessary” to keep him alive. During my son Jax’s 93 days in the NICU, I started hearing the term “million-dollar baby.” There’s some controversy on whether or not saving the life of an extremely premature infant is worth it. Some people seem to think if a baby requires a million dollars to stay alive, then the quality of life for that child would be sad and the child would be a burden. Jax’s medical claims have far surpassed one million dollars. We are sitting right around $1,100,000. Jax has faced a lot of scary and life-threatening things in his life. He was on life support for three months, he’s had seven surgeries and he’s needed lots of support and therapy to learn to eat, walk and speak. He has a brain tumor. But if I had to look at his life in terms of “options” and dollars and then decide if he was worth it? Well, then I’d have to say the only option that matters is sitting right in front of us singing the ABC’s and eating Cheerios. It’s worth it. He’s worth it. And when his medical claims surpass $2 million, he will still be worth it. Because his quality of life is not sad. He’s not a burden. And no one can put a price on this smile. This post originally appeared on An Early Start. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Having a Micro Preemie Baby: What I Learned

I was on vacation when I went into labor without warning at 23 weeks, three days pregnant. I was airlifted to a strange hospital, hours away from home. I wrapped my arms and legs tight around the bed rails hoping that would keep the baby from being born. I didn’t want to meet my baby yet because I didn’t want to watch him die. When the doctor told me I had to push, I cried from the depths of my soul, “No! I will not have this baby today!” But I did. The delivery room was silent. After long, torturous minutes of resuscitation, we heard that first tiny mew – a sign of life. We watched our tiny son, Jaxson, who weighed barely a pound, struggle to breathe. We watched him fight off sepsis and endure at least six blood transfusions. He had serious problems with his eyes, heart and lungs. Doctors said he had a 4 percent chance of healthy survival. During our 93-day NICU stay, I discovered many things about myself – mostly, I found out that I had strength and hope. If I were to turn back the clock to the day Jax was born, I would tell myself these things: 1. You’re better at rolling with the punches than you think. You love plans and crossing things off lists. Having a preemie will throw that out the window. You’ll learn right away what it means to literally take it one day (or even one minute) at a time. You will learn to just be with the people you love, rather than worrying about what comes next. 2. It’s hard to accept help, but you will need it. You will struggle to put one foot in front of the other. You won’t be able to focus on anything but the literal and precious balance between life and death. So, your lawn won’t get mowed and you’ll forget to eat. When your family and friends bring you food, walk the dog and organize a benefit for you so you can pay your bills, don’t stammer and hem and haw — just say thank you. A huge weight will be lifted off your shoulders. You are not alone. You’ll become more willing to give and receive help. 3. It will bother you when people say things like “Well, you should be happy he’s alive!” When people say this, you’ll want to shut down. People are just trying to focus on the positive, but when someone says this, you’ll truly know they’ll never “get” it. You’ll come to understand that not everyone has to get it. 4. You believe in guardian angels. Not being a spiritual person before, you will struggle with letting go and trusting Jax’s guardian angels. Science, technology and skill will all play a huge part in saving Jax’s life, but there will be days that you’ll feel them. Don’t ignore this – open yourself up and have faith. You’ll see your guardian angels every day in the rays of sunshine. 5. Sometimes the strongest people are the people you least expect to be strong. Jax will prove this to you time and time again. Look at that tiny baby who weighs barely a pound, and watch him flap his arms and move his head and furrow his brow. Watch him fight! You will no longer doubt what people can do. The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability?  Like us on Facebook . And sign up for what we hope will be your favorite thing to  read at night .