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What do you wish others understood about your #NICU experience?

What do you wish other people understood about your time in the NICU? How can they best support you and your family?

#Prematurity #PreemieParenting #Preemies #Parenting

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Community Voices

Was your child in the NICU? What are things people did not realize you were doing or going through when your child was in the NICU?

Share your experience here. Your answer may be used in a post for The Mighty. #NICU #Prematurity #Parenting #Preeclampsia #Preemie #Preemies

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Ellen Stumbo

The Hard Things About Being a NICU Parent

Being a NICU parent can be brutal. Babies end up in the neonatal intensive care unit (NICU) for a variety of reasons, but most stays follow some sort of trauma like a premature birth or complications during birth.When I gave birth to my oldest daughter, I wanted to hold her, but instead they whisked her from my arms and called an ambulance. She was transferred to another hospital immediately after her birth due to complications during delivery, leaving me behind. I begged my doctor to transfer me, too, but he refused, insisting I was too weak and it was in my best interested to stay in our small-town hospital and receive a blood transfusion before I could be discharged.I felt desperate and helpless, so I discharged myself, perhaps too early, with only a high prescription of iron tablets. I needed to be with my baby.I don’t believe you can ever forget the sounds, smells and sights of the NICU. It’s so incredibly hard, no matter how many days you spend there.With September being NICU Awareness month, we reached out to our Mighty parents. We wanted them to share their experiences to show the hard reality of the NICU and others can empathize with moms. We also want new parents going through this know what to expect, and to know they are not alone in their feelings and experiences.We asked, “What is one of the hardest things about being a NICU parent?” These were their responses: 1. “The feeling of being helpless.” — Paula G. 2. “Not being able to hold your baby.” — Cathy L. 3. “Depression is real. No one says, ‘Congratulations.’ It’s always, ‘I’m sorry.’ People wouldn’t come up to visit because it was too tough to see.” — Nicole W. 4. “One of the hardest things about being a NICU parent is having a family at home. You’re constantly choosing between spending time with your kids at home or going to the NICU. Especially when one of your kids just started school and they need your attention and time just as much as your kid in the NICU but in different ways.” — Madelyn R. 5. “I was put in a [post-delivery] room with another mother… boy, that was extremely hard because she got to bring her baby to the room. I was moved the next day.” — Angie K. 6. “That drive home from the hospital with an empty infant carrier sitting in the backseat.” — Corey F. 7. “My triplets were born so tiny and fragile, so strong and resilient. The hardest thing about being a NICU parent was watching them struggle with the inevitable ups and downs that come with an extended stay in the NICU. Having multiples, one day might be good for one but awful for another. Such an extreme roller coaster ride of emotion.” — Amy F. 8. “Although not the hardest part of being in the NICU, one difficult part was family or friends not understanding what we were going through. Some even judged me for following doctors’ orders and not allowing sick people to be around my son for the first two years of his life… missing holidays, parties, going to public places because you can’t risk exposing your child to life-threatening germs. We lived in isolation, and it did affect some of our relationships.” — Lizzy D.   9. “Living over an hour away from the NICU with three other children at home. Seeing your babies suffer and not being able to hold them. Recovering from surgery with swollen feet, with an overnight bag and breast pump in tow. Sitting in an office chair to hold them for hours at a time because there were no more recliners available.” — Meghan A. 10. “Knowing your kid was the sickest one in the NICU.” — Vanessa V. 11. “My daughter was nine days overdue. She was a huge NICU baby who other than all the cords and tubes didn’t look like she should be there. All the tiny little preemie babies looked like they needed the care [and] my daughter was a healthy-term baby, but so much went wrong and we nearly lost her. [I grieved] being discharged and going home to an empty nursery.” — Madison S. 12. “My daughter was in the NICU for the first 43 days of her life. Hardest thing was leaving every day not knowing when we would be able to bring her home.” — Grace B. 13. “My daughter spent 194 days in NICU after birth. Hardest days of my life thinking it would never end, having your body not ready to produce milk yet, but you desperately pump every two hours hoping for enough to feed your preemie, all while trying to keep your life together on the outside of the NICU walls, seeing precious little ones cling to life in tiny little incubators, trying to be happy for others who give birth to healthy children instead of feeling jealousy. And a very hard part is watching the pain and heartache come from other parents as they lose their sweet babies. Ugh.” — Margaret V. 14. “The reality that they may not come home and then the utter despair when you realize they are not coming home. The heartbreak when you leave the hospital and your baby never does.” — Hannah S. 15. “Being stuck in a different hospital for three days right after he was born [because of a] c-section before I could see him.” — Catherine F. 16. “Feeling helpless, post-traumatic stress disorder, not wanting to leave your child for severe post-partum depression help, and most of all, having most of the ‘firsts’ be in a hospital, hooked to wires. My daughter didn’t feel wind, sun, etc. for two months before she was released.” — Erika E. 17. “Total lack of understanding from society. If you complain, you are an ungrateful whiner. If you don’t, then everything is great and you don’t need support.” — Cheryl S. 18. “Being scared of some health problems arising, seeing him be hooked up to multiple tubes and monitors, but two things in particular were the hardest for me. One, having to leave him every night, we lived an hour away and every day we drove in and would go back home in the evening. Saying goodbye each day broke me apart all over again. The second thing would be watching him stop breathing. Any NICU parent knows that look, and no parent should have to. Unfortunately, preemie babies [often] don’t know how to breathe on their own and have to be reminded sometimes. So while he would eat or if his head was tipped too far down, he would forget to breathe, a monitor would sound, we would have to tap him to remind him, and another five days would be added on to him not coming home. ” — Melody P 19. “The hardest thing for me was the unknown of what may happen in the next minute, hour or day. To stare at the beautiful baby you were just carrying and trying to conceive how this could happen and not blame yourself even though you did nothing wrong. Then once you finally are in the all clear and trying not to worry about everything that could make your baby sick. ” — Jennifer C. 20. “Hardest thing is knowing that this baby might have issues with bonding. Knowing there was very little you could do to prevent it. Knowing that your baby might not make it. [That] skin to skin contact was almost impossible.” — Heidi G. Was your baby in the NICU? What was the hardest thing for you? Let us know in the comments. Thinkstock image by Ondrooo

New Year’s Resolutions for Preemie Moms

If you’re a mom to a preemie baby, or preemie twins like I am, chances are you’ve heard all of these tips — or proposed resolutions — before. But bear with me. Yes, you may have heard them time and time again, but for one reason or another, perhaps you just didn’t follow through. That’s OK. It’s a new year and another opportunity to restructure how you live. So here’s my resolution list. Take it as a friendly little reminder to let the little things go in 2017 and focus on being a tad more easy-going for your own well-being. 1. I will sleep when the baby (or babies) sleep. When you have a preemie, chances are you are not sleeping much. Between nursing around the clock or feedings every hour or so, you can always use more rest. So when the baby sleeps, remember you should sleep, too. Close your eyes, silence your phone, log off social media and shut your eyes. Whether it’s for 30 minutes or 2 hours, that sleep and rest can help. 2. I won’t waste excessive time on social media. Yes, I know this can be so hard to do. Especially because we all love to scroll up and down on our favorite social media apps to see what everyone is up to, but it can get excessive at times! I know, because I’m guilty of it! A few minutes here and there to see what’s going on is OK, but realize it can be more beneficial to put your phone down after 15 minutes or so and “unplug” your mind a little. Chances are whatever you missed online will likely pop back up in your feed tomorrow. 3. I will let the laundry pile up. If you’re anything like me, the problem isn’t loading the washer or dryer. It’s folding and putting all the clothes away! I have twin toddlers (boys), and they breeze through clothes like no one’s business! My sunken in bathtub has now officially become the “family closet” where I just sift through clean clothes to find something for each of us to wear, and that’s OK! Yes, I could spend hours folding and putting clothes away, but why stress when I can use that time to play with my babies? 4. I won’t feel bad for staying home. Nurturing a preemie baby can take a lot of time and patience. And it always seems like when you do take baby out of the house, he/she/they almost instantaneously get sick. I swear my preemie twins were sick every other week this summer. So instead of going out of your way to attend every birthday party or family/friend functions, know it’s OK when you feel like you should just stay home instead. 5. I will schedule some “me time.” Whether that be a trip to Target (my favorite place to go!), a drive-thru at Starbucks, a trip to the bookstore, a mani/pedi, or whatever it is you like to do — do it! Don’t feel guilty for giving yourself an hour or two to decompress and unwind. You deserve it, Mama! 6. I will be proud of my mama lifestyle. When my twins were fresh out of the NICU, I barely had time to eat, let alone get dressed and do my hair. I rocked the mommy bun for well over two years and learned to embrace a fresh, makeup free face in public. I often felt bad for spending all day in my PJs, and then after finally taking a shower around 7 p.m., I’d put on a clean set of PJs. I lived in PJs, and you know what, they are so comfy, easy and great! 7. I will eat something, no matter how small, every morning before 10 a.m. A banana, protein shake, slice of toast, bowl of cereal, handful of almonds, whatever it is that is accessible, shove it in your mouth! Even if it doesn’t sound good, you just need a little fuel. It took me forever to do this myself, but once I started putting something in my stomach before 1 p.m., I noticed I had more patience with my preemie parenthood responsibilities and felt better, too. 8. I will give myself the benefit of the doubt. Every night when I tuck my babies into their bed, I often feel tears well up in my eyes, because I remember a moment in the day I am not proud of. A moment where I lost my patience with them, a time when I knew I could’ve been a better mom. It’s normal. We all lose our patience; we are all doing our best and we all have the unconditional love of our precious preemies. You, Mama, are your baby’s lifeline, and even when you’re not at your best, you will always be good enough. So take a breath, forgive yourself for not being perfect, and remember tomorrow’s another chance to do better. Image via Contributor. We want to hear your story. Become a Mighty contributor here .

Amanda Lynch

Postpartum Depression: 'Black Women Don't Get Depressed'

“Black women don’t get depressed” was a mantra I’d grown up hearing all my life. In my family, we are allowed to give ourselves a few days to have a “pity party,” but then you are expected to get up and carry on…business as usual. Well, in May of 2014, I gave birth to a 31-week premature daughter, Violet-Hazel, due to preeclampsia. A few days after her birth, she was diagnosed with necrotizing entercolitis (NEC) and given a 40-percent chance to live. I suddenly found myself having to balance my own recovery with spending nearly 12 hours a day in the NICU with my 8-year-old daughter in tow and caring for a sick preemie. I ultimately developed generalized anxiety disorder (GAD), post-traumatic stress disorder (PTSD) and postpartum depression (PPD). Through medication, prayer and counseling, I learned to work through my anxiety and depression. Hazy on homecoming day from the NICU There are days when I feel like my heart is still in NICU even though my daughter has been home nearly two years. There are days when a sound or a scent will remind me of our NICU neighbor, Tyler, who passed away while we were there. There are days when Hazy sleeps too long and I wonder if she’s stopped breathing again. I can’t control those reminders, but I can try to control my responses to them. Black women are expected to be strong, no matter the circumstance. In our community, we are expected to carry stress, balance our families and careers, and not bat an eye. We are told to pray and to trust God. I found that in pretending I was OK, I was actually denying myself much needed help. A part of trusting God was understanding I needed to take care of myself physically, mentally and emotionally. I thank God every day that my OB recognized my cries for help. There are still days those things linger and I have to rely on mindfulness activities and breathing activities to center me. If you find you are in a similar situation, don’t hesitate to get help. The true test of strength is how you handle yourself in times of sorrow. There is no shame in admitting you’ve reached your limit.

Alexis Pryor

Preemies: My Daughters Did Everything They Were Told They Couldn't

From the day we found out I was pregnant with twins, “can’t” seemed to become a staple on our future. “You can’t go full term.” It was almost like that sentence tried to set a precedent for how the rest of the girls’ lives would be. When I was put on bed rest, more “can’ts”: You can’t be off the couch for more than a few minutes, you can’t go to the restroom alone, can’t can’t can’t. When they admitted me to the hospital at four centimeters dilated and 22 weeks pregnant — you can’t expect too much to come from this, you can’t expect both of them to survive. Even when we were in the NICU — you can’t get your hopes up, we can’t tell you what the future holds, we can’t say whether or not she will make it through the night, can’t can’t can’t. It was then that we decided that word would never be allowed in our house. “Can’t” is such a strong word. It puts boundaries on things; it can make you believe that nothing is possible. In life, I believe you have to have hope; you have to hold onto the fact that anything is possible. I’ll never forget those days of sit-down talks where we would go over what the outcomes could be, what their futures looked like, the milestones that we shouldn’t get our hopes up for: how Lennix may never walk, how Charlee may never breathe without help. But with every limit, every “can’t,” they could and they did! They proved everyone wrong time and time again. As they get older, they will encounter things that aren’t as easy as they might hope it would be. They might struggle doing things that other kids do, but they will find a way to do it, because they can. As their parents, we will remind them everyday that they’ve overcome the impossible and that they did everything that everyone said they couldn’t do. If they don’t believe us, we will show them pictures from their hardest days, then hand them a mirror. There isn’t anything in this world that they can’t do. Charlee and Lennix are meant to do great things; they survived the impossible and I believe they will change the world, one “can’t” at a time. Alexis’ daughters. The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Submit a Story page for more about our submission guidelines.