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Babies in the Neonatal Intensive Care Unit (NICU) face many different challenges depending on their individual situation, but they often share one...feeding. This may be due to not having fully developed their skills yet, or their condition or medical equipment makes it more difficult. If you have twins in the NICU, don’t get discouraged. It may take them a little longer, or sometimes further assistance. But with the help of NICU staff & lactation consultants, many babies can breastfeed successfully in the NICU. How you can help encourage your babies to breastfeed while in the NICU:  Photo credit: IG @silkysmoooth Skin to Skin Contact This is such an important step while your littles are in the NICU. It helps to maintain their body temperature, reduces their stress, regulates their breathing, strengthens your bond, and by all these things, it naturally helps encourage breastfeeding. It helps initiate feeding cues, like finding your breast. Seek out assistance from one of your NICU Nurses or the LC for some extra one-on-one support during this process to help you learn to support those feeding cues. Familiarize With The Breast When you find your baby looking for your breast or showing other signs of feeding, you may be ready to try and introduce it. Expressing breastmilk a tiny bit so it’s on your nipple will help them know where to go. They may not know how, and just want to nuzzle. If they latch, it may only be for a little bit. But all these things will help them learn where the milk is. Seeking Assistance The NICU is a wonderful resource of people who can help your babies. Breastfeeding support comes not only from lactation consultants and nurses, but the hospital speech & occupational therapists are also a wonderful source of information. Preemies may not have the simple skills yet required to be successful at feeding- sucking, swallowing, & breathing. OT & Speech therapists may help by finding you the right technique to help your babies be successful & encourage breastfeeding. Follow Their Cues If you have a little who’s doing well with feedings, ask your nurse or lc how to help you transition into breastfeeding. NICU babies can get tired easily while feeding. Watch their sucking pattern while feeding to know if they’re getting enough. If they are fast, it probably isn’t giving your baby the nutrition they need. If it’s slower, consistent, and stronger, they are adapting to your flowing milk. When they are full they will stop & be very sleepy or tired. It can be a slow process, but any breastmilk they can get while there will only help them grow stronger. Medical Equipment & Breastfeeding Some of the equipment that helps babies’ recovery, can also make it difficult for breastfeeding. If your babies need to be fed via NG tube or g-tube, let them learn to get used to you at feeding times by holding them & giving them a pacifier during it to help get them used to the experience and the pacifier will help build their sucking skills. When babies are on ventilators or other respiratory devices, it may not be safe for them to try to breastfeed. You can still introduce breastmilk by putting it on a swab to get them used to the taste. Once your baby is only using cannula in their nose, you may be able to introduce breastfeeding. Even if your littles are being safely fed by alternative methods, you can still pump your breastmilk & the staff will add it to their feeding tubes. How you can support your breastfeeding journey after coming home from the NICU:  You are a new mama, not to just one, but two. You are probably surviving on caffeine and baby snuggles, with minimal sleep. This being said, your number one goal for breastfeeding will be to help keep up your supply.
How to keep your supply maintained: Feed yourself: Make sure you’re eating a balanced diet! Lots of fruits, veggies, protein, & whole grain choices. While breastfeeding be sure to add in 500 calories, your body is doing extra work! Keep Pumping!: By pumping in between feeding sessions, you are stimulating milk production. It can stay fresh in the refrigerator for 24 hours, or if you’re not using that much yet, pop it in the freezer to save for when you need it. Drink up!: Don’t go overboard with caffeine (eek!) and try to drink enough nonalcoholic fluids. You should try to have water whenever you feed, during pumping sessions, or whenever you eat Sleep!: This is a hard concept for a new mom (especially a twin mom!) but it’s so important to try and get enough sleep. “Nap when baby naps” may not hold true for twin mamas, so be sure to accept any and all offers from your partner, or any other friends or family members that offer to help. Handling Breastfeeding & Medical Devices at Home Your babies may still come home from the NICU with an NG tube or g-tube. You can attempt to breastfeed whenever they are hungry, or you can give them extra breast milk through their tube. There are some occasions where it may not be safe for a baby to breastfeed if they cannot swallow well. If this is the case for your baby, do not offer breastmilk outside of their feeding tubes until your doctor says it is safe to try other methods. You can still hold them during feeding and offer a pacifier. This will help strengthen your bond and help them adapt to feeding. About the Author: Krystal Workman is the inventor of the TwinGo Carrier, the first ergonomic twin baby carrier and the TwinGo Nurse & Lounge Pillow, a feeding pillow designed to support both twins and mamas. Her inventions were born out of personal necessity to care for her own twins, and as a way to emotionally heal from the touchless first few days in the NICU. Today, TwinGo has helped more than 10,000 families around the world keep their babies close. After all that parents have been through with their preemie’s health, parents will want a reliable baby monitor that can give them extra peace of mind anytime and from anywhere. The Safety 1st HD WiFi Baby Monitor was designed to stream high definition, high speed video right to the high-resolution screen on a parent’s smartphone – even on connections with low-bandwidth. The end result is a baby monitor that delivers the sharpest video quality with minimal buffering delays. A wide 130 degree viewing angle lets parents see the whole nursery without ever needing to pan or tilt, and 12 infrared LEDs lets parents see better in the dark. Visit our Facebook to enter to win from September 28 to September 30.  After all that parents have been through with their preemie’s health, parents will want a reliable baby monitor that can give them extra peace of mind anytime and from anywhere. The Safety 1st HD WiFi Baby Monitor was designed to stream high definition, high speed video right to the high-resolution screen on a parent’s smartphone – even on connections with low-bandwidth. The end result is a baby monitor that delivers the sharpest video quality with minimal buffering delays. A wide 130 degree viewing angle lets parents see the whole nursery without ever needing to pan or tilt, and 12 infrared LEDs lets parents see better in the dark.
The true innovation lies in the one-of-a-kind, hands free smart audio device that is sound and motion activated. It lets parents hear their baby from anywhere in the home and allows parents to easily view their baby just by pulling out their phone. And because traditional video monitors have poor battery life, Safety 1st designed the smart audio parent unit to last for up to 12 hours or more on a single charge. The smartphone integration also enables parents to set motion and sound sensitivity levels, communicate via two-way talk, access free 24-hour timeline events, share moments directly to text or social media and provide caregivers viewing access. Additionally, the baby monitor has an on-board enhanced physical encryption chip, which sets up a separate firewall between the monitor and a home’s internet connection to protect privacy.  Safety 1st, brand of one of the world’s leading juvenile products manufacturers, Dorel Juvenile, is a proud sponsor of NICU Awareness Month. In honor of NICU Awareness Month Project Sweet Peas is partnering with Safety 1st to offer a give away of their latest lightweight stroller, the Safety 1st RIVA Flex – a 6-in-1 travel system. Visit our Facebook to enter to win from September 14 to September 20. The lightest travel system in its class, RIVA Flex is an eco-friendly option that offers parents everything they need for a smooth ride with baby, while reducing their impact on the environment, both today and in the future. On the journey towards sustainability, Safety 1st designed the American-made innovation, which uses recycled plastics including its own recycled car seats, to be lightweight and durable to grow with baby, eliminating the need for multiple purchases and reducing landfill waste. The Riva Flex Travel System is a wonderful option for even the smallest NICU graduates with the onBoard35 FLX infant car seat and stay-in-car base that was designed with pediatricians to give a better fit from 4 to 35 pounds. Having a 4 pound rating assures that you will have the right car seat with the best fit when your NICU grad is ready to make the big trip home. The harness adjusts easily from the front of the seat with a simple pull for a secure fit for your child, and the stay-in-car base height adjusts for the right fit to your car. Engineering innovations make the onBoard35 FLX incredibly lightweight and incredibly safe.  RIVA Flex Travel System Features
- 6-in-1 Travel System: featuring six modes of flexibility, including forward- and parent-facing in the car seat, stroller and lie-flat carriage, RIVA Flex Travel system comes complete with the pediatrician-designed Safety 1st onBoard™ 35 FLX infant car seat and stay-in-car base for children four to 35 pounds. -Sustainable Design, Made Here at Home: committed to providing affordable, quality-made products, the Safety 1 st RIVA Flex Travel System is the first recycled stroller made in the U.S.A. with American and imported materials, including recycled Safety 1 st car seats. -Smooth Recline for Downtime™: parents will never need to disturb baby with this innovative feature that allows for a quick and easy transition from riding stroller to a completely flat recline in carriage mode. -Lightweight and Easy to Fold: RIVA Flex is one of the lightest travel system strollers in its class, featuring a one hand, self-standing lift-to-fold function. -Machine Washable, Zip-Off Fabrics: making clean-up easy for parents, RIVA Flex is the only travel system that offers zip-off, easy-to-clean machine washable fabrics for both the stroller and car seat. -Sun Protection and Storage: the travel system includes multi-position extended SPF 30 sun canopy, flip-flop friendly brakes, a large storage basket and two dual-use parent cup holders, which are top-rack dishwasher safe. ABOUT SAFETY 1st: Established as the brand leader in child safety 30 years ago with its little yellow BABY ON BOARD® sign and the first true collection of home safety products, Safety 1st continues to introduce new and innovative products to parents, consistently giving you the power to keep your children safe. "Knowing I was giving families hope, and comfort when they needed it most healed me in ways I didn’t know it could. " -Krystal Roark, Division Coordinator Project Sweet Peas - Greater Lafayette  When I speak of my NICU experience, sometimes I am brushed off. Why? Because my NICU experience wasn’t a long one. It can make others uncomfortable. My NICU experience ended after 8 days. It didn't end in the joyous day all NICU parents look forward to for us. It was the second time that week we were told our daughter had died. Just 7 days earlier our oldest twin didn’t make it either. We stood there in shock as we looked around at all the isolettes filled with babies. Our monitors were silent, the screens turned off. It was like a bad dream looking down at the tiny, fragile, body of my daughter laying there. No tubes, no monitors, just her looking just like her sister did 7 days earlier. They carefully wrapped her in a blanket and handed her to me. I rocked her and held her close feeling her skin grow colder. I used every ounce of my will to try and warm her again, but it didn’t happen. Nurses and doctors came in and talked to us about various things. I really don’t remember much, I was too busy trying to memorize every detail of her face and hands. I just sat there and rocked her. Rocking, rocking, rocking. When it was finally time, I placed her back in her isolette. I didn’t really know what else to do. What was I to do? They don’t really prepare you for this, nothing does. I kissed her for the last time, and my husband and I left holding each other up. I spent days in a waking coma trying to process things. Finally, I had to go through all the stuff from the hospital. All the gifts and other things sent to us. As I was going through them, I found a green bag with Project Sweet Peas on it. At first, I had no idea what it was. As I opened it, I saw it was a memory box for our first born. It had a little hand mold in it of her hand, tiny diapers, a teddy bear with a Pregnancy and Infant Loss Awareness Ribbon t-shirt on it, forget-me-not seeds, and so much more.  My eyes welled up and I began to sob. It was beautiful. I spent hours holding that teddy bear. It helped fill a gap in my arms. Pulling myself out of my funk, I decided I wanted to add some handmade items to future boxes. I began painting boxes, and filling bulbs with glitter and feathers, making PAIL ribbons. My husband would leave for work and come home and find me at the counter still painting. He didn’t mind though, it was the first thing that had gotten me out of bed in weeks. Little did I know at the time, that the painting and crafting was slowing helping to heal my heart. I eventually found a card inside the box and contacted the organization that provided the box to our local hospital, Project Sweet Peas. I was put into touch with Sarah. We talked about love and loss and how healing giving back to the community could be. I talked about our first born’s box and how much it meant to me. We met in the parking lot of the mall, I wanted to drop off the things I had made. I didn't know why, but I was nervous. I had never met anyone else who had lost their only children before. I didn’t know what to say to her in person, even though, I too had lost all my living children at the time. It’s ok though, we really didn’t have to do much talking, I was crying mostly and we hugged a lot.  After I handed her the items I had made, she handed me a bag. I was surprised, inside was another memory box for our second born. It matched the other. My heart felt like it exploded. More tears and more hugs followed. It was that day, and through Sarah’s kindness, that I decided to become a volunteer with the organization. It was hard at first, delivering the NICU care packages and memory boxes, but I never wanted what happened to me to happen to anyone else. Knowing I was giving families hope, and comfort when they needed it most healed me in ways I didn’t know it could. It got me out of bed and helped me to continue my life. It gave me purpose again. Every day I live my life, I live it for my daughters. Every time I give back to the community, it is a tribute to their beautiful lives. As I give back, their spirits are lifted and remembered. Almost 5 years have gone by now. I still give back and create those memories, and give hope to the families of my community. I’m no longer just a volunteer helper, I am the Division Coordinator of the very local division that gave me purpose again. They may not know it, but they saved my life. I hope that what I have done, and continue to do, helps save someone else’s too.  Learn more about Krystal and Project Sweet Peas by visiting: projectsweetpeas.com/Greater-Lafayette.
 From Mini to Moose is a unique company that was recently founded by two NICU moms who are trying to make a small difference throughout the NICU community. Inspired by the premature birth of our daughters we both had a strong desire to become more involved in helping other families within the NICU community. After throwing around the idea of forming an Etsy shop, centered around the needs of the NICU community, the idea of taking some of the special onesies that we would be creating into local NICUs was born. From Mini to Moose the Etsy shop soon became only one piece of the puzzle and “From Mini to Moose - Special Delivery" was born. In order for us to make this idea a reality we reached out to family, friends and others in the NICU community for support. The response was overwhelming to say the least and over the course of two months we have received the materials needed to create over 400 of these special NICU onesies . In order for you to understand why we have a drive to make a difference in the NICU community you'd need to understand who we are. In college we were acquaintances who dated college roommates, and were in the same circle of friends. Fast forward a few years, we both married those same college roommates, and were expecting little girls! Samantha was expecting her first at the same time as I was expecting my second. In March of 2016 Samantha gave birth to her daughter Madison at 27 weeks. Maddie Moose as they called her only weighed a mere 1 pound 15 ounces, and would spend the next two plus months in the NICU. Ironically, a month later, I too found out my pregnancy was going to result in a premature birth and I gave birth to my daughter who we called Quinny Mini was born at just 28 weeks weighing a mere 1 pound 12 ounces. During this stressful time period I had reached out to Sam with many questions about what to expect in the coming months, and she became a true confidant, and friend. We often talked about things going on in the NICU, and the emotional journey we were both on. When friends and family would ask how my daughter was and I would always say “good” because I just didn't have the energy to explain, yet when Sam asked I would tell her every detail about my day, knowing she was the only other person really understood.  Our First DeliveryThe inspiration behind From Mini to Moose began around Mother's Day of this year. Mother's Day happened to be one of the holidays my daughter Quinn spent in the NICU, and I wanted to do something special for the Moms who would be spending time in Quinn’s NICU during that holiday this year. Sam and I often talked about preemie items she could include in her online Etsy shop, and as I often did I reached out to Sam for ideas of things that I could do. Sam had previously created a onesie for Quinn that said #preemiestrong, and somehow the idea of creating NICU inspired bodysuits was brought up. Sam was obviously on board with helping with the project and loved the idea of giving back to the NICU community. That week she spent hours helping me create 22 onesies for Quinn’s NICU. After dropping off these onesies we both felt awesome about giving back to the NICU community, and couldn't shake the accomplished feeling that we had. We realized that this tiny gesture meant so much to other Moms going through a really difficult experience much like we had. After our “Special Delivery” A few NICU Moms who received bodysuits reached out to us telling us how much these little onesie meant to them, and from that point on we knew needed to continue our Special Deliveries.  To date we have already completed our Mother’s Day Onesies, 4th of July onesies that encompassed three local NICUs, and have created the majority of beach themed onesies that will be needed for our August delivery. We have big plans for many more upcoming months throughout the year, and eventually we would like nothing more than to expand From Mini to Moose Special Delivery into the majority of NICU’s throughout the Tri-State Area. We hope that through our monthly project Mini to Moose Special Delivery, that we will be supporting other NICU Moms in any way that we can, even if that means just bringing a smile to their face on special holidays. Are you also interested in giving back? See our Facebook page for more information! where we donate custom onesies to the local NICUs (for more information visit our Facebook Community page).   ONE of the earliest feelings of my life in the NICU was being separated from my baby. This feeling still prevails within me as I am writing this blog. This feeling of separation can only be felt deeply by the families who have gone through similar trauma in their lives.
Each one of us ended up in NICU expecting the unexpected. Initially, it was very hard as parents--both me and my husband wanted to be with the baby. At that time, I just wanted to hold my baby close to my skin--in my arms and never let him go. The acknowledgment of the separation feelings were important at that time. Every day my other kids would rush towards the door expecting our new baby to come home that day. It was painful to tell them that baby was not coming home yet. A mother's bonding sprouts the day the woman is told that she is expecting. It is a wonderful feeling. During pregnancy you think about what the baby will look like, his birth, first eye contact, first skin-to-skin contact, first touch of holding tiny fingers--all of these are crucial for the families. In the end, I must say that I am forever grateful to the NICU for letting moms and dads hold babies' hands, use the skin-to-skin method and their cradling program. These programs helped to ease separation and develop a healthy normal bonding with the beautiful child. What was the first feeling you had when you were in the NICU? How did you bond with your baby? Blog by C  By Steven Lam When our babies are in the NICU, it can be greatly stressful for everyone involved. Our babies may often be stressed due to maternal separation, noise and bright lights, procedures, and other events. The types of pain that our babies can experience in the NICU include:
Like most infants, preterm infants also have pain responses, although they may be immature and less localized than in older infants. They often experience hyperalgesia (exaggerated pain responses), allodynia (pain from things that are not normally painful) and a longer latency in their responses. These pain responses include physiological changes like heart rate, blood pressure, and oxygen levels, and hormone responses. They may also display behavioral signs of pain such as changes in their facial expression, body movements and of course crying. However, it is important to note, that not all responses, like crying, moving, tachycardia, and perturbations in blood pressure are pain responses. Therefore it is important to properly assess infant pain. Most Neonatal Pain tests usually evaluate for acute procedural pain, and not for discomfort or chronic pain because immature infants have inconsistent responses. One such test is the Premature Infant Pain Profile or PIPP score. The PIPP score uses gestational age, behavioral state, heart rate, oxygen saturation and facial expressions such as the brow bulge, eye squeeze, and nasolabial furrow.  But how can pain affect our babies in the long-term? It is possible that pain may affect long-term memory, pain perception and responses, and possibly alter social and cognitive development. Therefore it is obvious to try and address pain and stress in the NICU, especially acute and chronic pain. Chronic Pain or Stress is much more difficult to assess, and often times may be superimposed by other types of pains like from procedures or inflammatory pain. When addressing acute pain, due to procedures, it is important to look at the procedure itself and whether it is necessary but also if local anesthetics are available. While morphine has been used for more serious procedures, the long-term risks may not be ideal. Other sedatives may also have other negative side effects and have been shown to show that there is insufficient evidence to recommend use of them during therapeutic hypothermia. So if these aren’t working what can we do? There has been a shift in approach in trying to limit the number of painful/stressful procedures and interventions as well as creating a less stressful NICU environment by involving the parents.  These includes many non-pharmacological approaches from swaddling, pacifiers, music, and family-centered care.
Sucrose has been used as a neonatal analgesia which did result in lower PIPP scores but no changes in pain specific cortical activity or reflexes indicating that it is not pain relief. However, maternal holding of the infant has shown greater promise in reducing pain. While this may lead to some issues where nursing staff may seem to be challenged by the parents, dialogue between nurse-parent collaboration may provide the best outcome for young ones. I Parental participation may prove to be the one of the safest options that can be combined with other methods until more work is done in pharmacological methods where evidence supports positive outcomes. References:
 By: Elizabeth Payne Dr. Vincent Smith has practiced neonatal and perinatal medicine at Beth Israel Deaconess Medical Center in Boston for over ten years. Dr. Smith is a big proponent of family-centered care, an approach that encourages heavily involving the families of NICU patients in the care of their babies. We had the pleasure of speaking with him recently on the value of family-centered care. Tell me about your experience with family-centered care models. Dr. Smith explained that one of the big advantages of family-centered care was having extra sets of eyes on each patient, watching just that patient. Families, he said, “are getting a PhD in their baby”. They oftentimes notice changes, both positive and negative, before the staff, and are able to notify their child’s providers about any such changes. “Moms are the first to know,” he noted with a smile. One of the ways he has tried to encourage family-centered care is having parents go on rounds with providers, making them a part of the healthcare team instead of an extension of the patient- this has resulted in a higher satisfaction rate among families. Family-centered care encourages parent/child bonding, and gives the parents more understanding of what is going on and gives them some degree of control during a confusing, tumultuous time. With support and understanding of what is happening, parents become more confident in caring for their child. "It’s a beautiful thing when people stop being scared and start enjoying their baby,” Dr. Smith said.  What are the best practices for family-centered care?
Dr. Smith believes that leadership starts from the top, and suggested that the leaders of a healthcare team teach by example. "Staff want to do the right thing,” he explained, but often they are not aware of family-centered care and have not been trained in it. We also discussed the role of “veteran” NICU parents in supporting parents whose child is currently being hospitalized. Dr. Smith believes that parents who are living proof that getting through the NICU can be done are an invaluable resource to parents whose children are currently in the NICU, providing them with hope, support and acting as a sounding board for questions that other parents may feel uncomfortable bringing up to healthcare providers. Providing a welcoming environment and training on how to care for their child are also key in making parents feel comfortable. Learning how to care for their child and being reassured that they will not hurt the baby was especially valuable to parents and allowed them to feel more in control of the situation. Additionally, staff and parents should work collaboratively. “Families will teach you a ton”, Dr. Smith noted. What are some of the challenges of family-centered care? One of the biggest challenges in the NICU in general is the previously mentioned parent apprehension about hurting their child; however, in family-centered care, parents are well-supported by staff in learning how to care for their child, helping them to “stop being scared and start enjoying their baby.” There are some challenges when it comes to implementing family-centered care, as it is not always taken seriously and some providers dislike changing their way of practice. When it comes to family-centered care itself, one important thing to remember is that it must be tailored to each family and family dynamic. The role of non-parent family members- such as siblings, aunts, uncles and grandparents--can vary from culture to culture and family to family. It is also important to remember patient’s perceptions of the roles of different healthcare providers--even if a team works collaboratively, parents tend to find it comforting to hear “big” news from the doctors and direct their basic questions to nurses. What still needs to be done? The mindset of “we’ve always done it this way” had to change in order for family-centered care to be implemented in a unit. As previously discussed, the traditional view of doctors as planners and nurses as implementers is ineffective; the entire unit must work collaboratively. In some places family-centered care is considered a “squishy” approach and is pushed aside in favor of more traditional approaches. Most importantly, the leadership of the unit and the administration must be on board for family-centered care to be implemented. In order for this to happen, awareness of effectiveness of family-centered care should be spread. Within family-centered care, parent apprehension needs to be addressed; staff need to address patient needs on a case-by-case basis and “nudge along” the parents as needed. The biggest obstacle here is parents worrying that they are going to hurt their baby; staff needs to reassure them that this will not happen. “Babies are well-designed”, Dr. Smith pointed out.   Noah Matthew was born on a rainy winter day in 2009, Pearl Harbor Day to be exact. We jokingly surmise that it was Noah’s way of warning us that it would most definitely be, ‘a day that would live in infamy’ for more reasons than one. My pregnancy and Noah’s birth were not like many others of his preemie friends. I, of course, did what any neurotic first-time mother does, including making a playlist of songs I would like playing in the delivery room, putting headphones on my tummy with Mozart blasting to aid his brain development, reading every single pregnancy book, and anxiously awaiting the arrival of our first child. Our plans took a tailspin at the end of October 2009 when I contracted the deadly H1N1 flu (swine flu) at 24 weeks pregnant. After a very unfortunate initial misdiagnosis at a local urgent care facility only a couple days after the onset of symptoms, I entered the hospital emergency room, and, unbeknownst to me, was already in very critical condition. After being rushed back to triage and following a flurry of activity that included multiple IV lines, a breathing mask, and several medications, my vitals continued to decline. The doctors instructed my husband and me that it was in my and our baby’s best interest to be placed in a medically induced coma for a couple days to allow my body to get some rest and not work so hard to breathe. A couple days turned into weeks, and I woke up almost two months later as a new mom to a very tiny preemie baby. Over the course of six weeks, I was on a ventilator, got a massive blot clot, went into renal failure, and eventually had to have a tracheotomy placed to help me breathe on my own. As I began to wake up from being weaned from the paralytics, Noah started experiencing heart decelerations, and the decision was made to deliver him via emergency C-section at 29 weeks and five days gestation. I regained full consciousness the evening following his birth. With the help of my husband and our nurses (and with my arms being propped up on pillows because my body was so atrophied from lack of movement for almost two months), I was able to ‘hold’ my son. That was and always will be one of the best moments of my life. Noah spent the next three months in the NICU, dealing with issues ranging from a close call with NEC (necrotizing enterocolitis), lung and breathing issues requiring extreme oxygen support, Gastroesophageal reflux disease (GERD), ROP (retinopathy of prematurity), growth issues, anemia, which required several transfusions, as well as hernia repair surgery in his umbilical and groin areas. In comparison, our journey in the NICU was, for the most part, uneventful when you think about everything Noah endured while in utero. He was exposed to drugs that could have made it impossible to survive, or at the very least cause brain damage. I never thought there would come a day when I would ever say that I was thankful I went into complete renal failure, but I am because my blood was being cycled out of my body and scrubbed clean 24 hours a day, seven days a week. Because of this, Noah received only very residual amounts of those toxic drugs. The post-traumatic stress I experienced in dealing with my own mortality and subsequent paralysis in my right foot, made things that much more stressful and still stays with me in some ways today. I had to struggle with the notion that I was no longer this strong, independent, capable person I had been before. Instead, I counted my blessing as I sat in a wheelchair beside my son’s incubator. And again when I held onto a walker to be able to watch my husband change my little two-pound son’s diaper. How would I ever be able to take care of this fragile human being who depended on me for his life when I could barely take care of myself? You sit there in a room with beeping monitors and flashing numbers on a screen that act as a constant reminder that your tiny little baby is not like all the others. One of the most difficult things in the NICU is seeing other babies and their parents who got there after you did leave before you. I can’t tell you how many times I looked over at my husband and thought, “Why not us?” Our chance of survival was less than 10 percent, but we were able to defy the odds. With the help of modern medicine, through many prayers, and by the grace of God, we became miracles. To say that I have learned to look at life and tough situations very differently would be an understatement. Despite all the anxiety, fear, and sadness, we experienced the most special and rewarding memories. The relationships and bonds we made with the nurses, doctors, and fellow NICU parents are as strong as they were all those years ago. We don’t take things like our health and waking up every day for granted anymore. We know, beyond the shadow of doubt, that the miracle of birthing a healthy child is a blessing. And most of all, we are so very thankful for all the nurses and doctors and organizations like Miracle Babies who were there for us during one of the scariest times of our lives. If there is a support group you can join, or a way you can give back to those in the shoes you filled not so long ago, I encourage you to reach out and do something. Miracle Babies has afforded us opportunities to do just that. There is no way to be able to say thank you enough. We are forever indebted to them and the wonderful life they breathe into this community and this family of NICU warriors. Veronica Pacheco Abstract taken from “Miracle Babies guide and journey though the NICU.” Written by: Sean Daneshmand, MD and Susan Newman, MSN, RN, NNP-BC   When you are a parent of a NICU child, your hero or heroes sit before you every day. Much like a fireman saving you from a blazing fire, my children saved my life. They saved their own lives and they are only 4 years old. They fought battles and won. We are a family of warriors. I have become a very strong woman, an extremely proud and devoted mother, and a person that is grateful for each passing day. I try my best to thank God for my children because I saw miracles happen right before my eyes. I go about my day as all other people do and I have my simple challenges and my crazy moments. I deal, I move on, and I live my life. Not everyone knows I am a NICU Mom, but I know that it makes a difference in the woman I am each day. Every day I think of our journey at least once; every night while watching my children sleep, I thank God that they are here with me. We are a family of warriors. I think we all live a fairly normal life, but our experience in the NICU plays a huge role in my everyday. All five of us have both external and internal battle scars. My husband and I have memories that could most likely be compared to those suffering from post traumatic stress disorder. Sometimes, when a friend mentions anything related to a hospital experience, without invitation I immediately start telling my story and give details about my children’s stay at the NICU. The memories come flooding back and my mouth starts speaking even before I know what I am saying. I think most of my friends have heard my stories, but they just allow me to talk because it is polite and because they love me. We are a family of warriors, but I am forever fragile from this experience. We are a family of miracles. Even though I am tougher than I was before the NICU stay, I am still as fragile as the second the doctor told me 30%. He told me that 30% of the children with my son’s condition do not survive. I am still as fragile as the second that the social worker asked if we would like to see a member of the clergy. I am fragile as the time I was holding my breath when my son’s ventilator was removed for the first time. I am as fragile as the time that they took my son to the operating room in an isolette when he weighed less than 5 lbs. Even though I am tough, even though we are warriors, I am forever fragile because I know that life is fragile and I know that every second with my children should be cherished because they were gifts given only to us.  All that being said, I am a regular mom. I live a regular life and I think regular thoughts for most of my days. I have the occasionally slip ups every now and then, but it’s not easy being a mother and it is not easy having triplets. People often ask me how I do it, and I know how I do it. I do it because I would never want to do it any other way. I need these three children like I need air and I know that I am not perfect but they have made me who I am and have showed me that they are willing to fight for me. I will fight for them every day. Like any mother, I have to discipline them and teach them how to be respectful and loving children, but how do you teach the fireman who saved your life how to fight a fire? Every time I become frustrated with my children, the NICU flashes like lightening over and over again in my brain. “Be thankful for those children, they fought so hard to be with you.” I can get over much of what the NICU imprinted on my soul. I can forget the horrible moments easily and move on because I have my children with me. There are a few things that my body and soul will truly not ever let me forget. Whenever I am in a doctor’s office or a bathroom or in the ER with my daughter when she gets croup, I have a hard time getting up the courage to wash my hands. As we all know, hand washing in a hospital is necessary and 100% disgusting if not done. However, the smell of the hospital soap brings back every fear and and every memory I ever had at the NICU. The smell makes me remember how terrified I was of every germ and how even the smallest virus or cold could make a huge difference in the lives of my children. I remember using hand sanitizer at least 100 times a day, and I washed my hands before entering the NICU until my skin was raw. I kept my cell phone in a baggie tucked in a sanitized bag. I clean every inch of my home when the babies came home and every person that came near them had ALL vaccines. I put signs on their carriers that said “DO NOT TOUCH ME”. I was scared to death every second of every day. I am a warrior, I am fragile, and I am a NICU Mom through and through. I have the guilt of not carrying my children to term. I have the memories of each roller coaster moment from all three of my children’s 94 day hospital stay. I have found strength in the eyes of my babies, and I have learned to be compassionate for all. The NICU is like the teacher of a class you never wanted to take. It gives you lessons that you will remember forever. Many of my memories from the hospital stays are horrible but I have a few that are great. I am forever thankful for the nurses and doctors that raised my children for those three months when I could not. I will never forget the names or the faces of the nurses and doctors that saved my son’s life especially. I know who you are, I know where we were standing when you told me the news, and I remember the love you showed me. I have met countless heroes along the way and I think I can honestly say that I am grateful for this crazy journey. When leaving the hospital with my third child a neonatologist said to me “Ya know, one thing I learned about the NICU is that every person’s journey affects them the same way. Whether you are here for one day or nine months, all parents are affected. The fear that you have is the same.” Here’s to all my fellow NICU Mamas. We are all warriors. We are all fragile and each of our journeys is our own. Do not feel weak when the smell of the soap brings you to you knees. It is just God’s gentle reminder that we should continue to be grateful for the wonderful gifts in our lives.  ---
About the Author: Heather S. is the Mom of three miracle triplet’s Savannah, Max and Lillyana. They were born at 28 weeks 1 day and spent over three months in the NICU. Her son was transferred to AI Dupont Hospital For Children’s NICU at just 13 days of age where he received several life saving surgeries. Her triplet’s just turned 4 years old in August. Heather has been generously giving back by volunteering with Precious Kisses, a division of Project Sweet Peas based in the Philadelphia area. She and her family, friends, colleagues and school students have be helping support families with babies in the NICU at Nemours Alfred I. duPont Hospital for Children. She strongly believes that helping others promotes healing. |
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