November: Prematurity Awareness Month- How to Support Families of Preemies
/This post is part three of a four part series about awareness months which help tell the story of my family. Parts one, two, and a letter to our littlest fighter, can be found by clicking on the links below.
September: NICU Awareness Month
We are extremely fortunate to have an amazing village of friends and family who rally around us in our time of need. Our largest time of need was after emmy and elle were born over 13 weeks early. We had never felt such love and compassion from others as we did while the girls were in the NICU and after they were able to join us at home. People would continuously ask what they could do to help and to be honest, sometimes that was extremely overwhelming. Dave and I are not the kind of people who find it easy to ask for help. This concept is especially hard for me because I am a natural helper and helping is my love language. I always want to be the one who steps up and organizes whatever others need from family crisis to celebrations. So, we found ourselves at a loss of words numerous times because we were just trying to survive while the girls were in the NICU. I know this might seem overdramatic but in reality, each day we were watching our children fight for their lives. There was nothing else we could focus on other than emmy and elle so even something simple like, "how can we help?" was too much after a long day in the NICU.
I decided to create a list of ways you can help families who have a preemie(s) and/or a child in the NICU. I have been reflecting on what our life was like in the beginning with our miracle micropreemies and below are some simple ideas which will make a big impact on families in need of your love and support. I was the first of my immediate group of friends and family to experience prematurity to our extent. I pray there will be no other babies born too soon but the statistics are clear that over fifteen million babies are born premature each year according to the World Health Organization. I hope this list will help you decide what is best for a family you know who might be in need of some extra TLC.
1. I am listing this statement first because I believe this is the most important thing you can do to help parents of preemies- Do not ask when their baby gets to come home. If a parent knew then they would be telling you way before you would be asking. When parents find out their children get to come home from the NICU they would like to shout it from the highest mountain. Instead ask something like, "How is emmy doing today? Has elle met any exciting new milestones?" Each day in the NICU with a preemie is unique. The babies write their own stories so some days they can progress well just to follow the next day with a large setback. This is why the NICU is described as a rollercoaster of events and emotions.
2. Set- up a meal calendar so the family has their meals covered the first few weeks- The meal calendar is especially helpful if the family already has children at home. Dave and I were first time parents so it was extremely generous when people brought us meals but what really helped us was restaurant gift cards. We were basically living at the hospital so we really appreciated when people would surprise us with a gift card to a restaurant close to the hospital or pick us up something from the hospital cafeteria. Another surprise that a couple of our friends did was to make us care baskets. The baskets included everyday items such a lotion, hand sanitizer, dry shampoo, magazines, crossword puzzle books, iTunes gift cards, snacks, and pajamas. The baskets were so special because it showed us people took time to really think of what we might need while our girls were in the hospital.
3. Help the family with household chores while their baby is in the NICU- My dad told me the sweetest story of how one day after the girls were born he was in the yard doing some quick yard work before he left to visit emmy and elle. His neighbor saw him working rather quickly and without saying a word, came over with a rake and started to help my father so he could leave the house quicker to be with us. This simple story literally gives me hope for mankind.
4. Offer rides to the hospital- My husband had to return to work one week after the girls were born. I was not able to drive yet like most new moms shortly after delivery due to my c-section. A friend took an afternoon off of work to bring me lunch, take me to the NICU, and then visited with the girls for hours until Dave was able to join me after work. I will be forever grateful she took the time to take me to the NICU because I was already sad thinking I would need to wait until Dave returned home from work to see emmy and elle.
5. Call often and ask politely for updates about the baby. Never forget to ask about the parents mental health too. The NICU is an extremely hard place to spend your day and it definitely takes a toll on the parents.
6. BUT do not become offended if the parents do not call or text back for hours or days-at-a-time. I really appreciated all the calls and texts but some days I was just too overwhelmed with what I witnessed in the NICU to even string together a coherent text back to a friend. Be patient and kind to preemie parents who currently have a child in the NICU.
7. Visit with the family at home and if allowed, in the NICU- We found out the same month we moved in to our new home we were pregnant with multiples. We were extremely fortunate that our best friends lived only a few minutes away from our new home. Dave and I will never forget how much we appreciated our friends coming over for dinner and to just sit and talk with us after a long day in the NICU. My girlfriend would sit with me in my room while I pumped and I was able to chat about emmy and elle and tell her all about their progress. It gave us a small sense of normalcy during the time of our lives that was most uncertain.
We also loved when people would ask to come and meet the girls in the NICU. Our NICU had a strict visitation rule that only two people could be with the children-at-a-time. Our friends and family were extremely understanding and they would sit in the waiting room for hours while they took turns visiting the girls in the NICU. I remember fondly when our best friends, who lived in Virginia at the time, came to visit the girls with their own 6-week-old-baby. Another time two of my girlfriends took me to lunch and then took turns meeting the girls for the first time. It made me so excited to hear them say things like, "I got to watch Jessica change elle's tiny diaper!" They were genuinely excited and it made me so happy. Or when another best friend came to visit the girls when she was 40 weeks pregnant and going to be induced within 48 hours. These small acts made a huge difference to us because it created happy memories while in the NICU. My sister was the real MVP when it came to NICU visits. She stayed with us for two weeks and spent everyday with me in the NICU for countless hours. She was present when emmy had her surgery and I know she still wishes she was there when elle had her surgery as well. I reminisce about all of these memories to stress the importance of supporting the families you know who have a preemie currently in the NICU.
8. Be genuinely excited for the parents because they just had a new baby. Be excited when they share with you about their preemie's milestones in the NICU. If the preemie parents see your constant worry then this will only add to their own immense worry and anxiety. Be the parent's shining light of positivity.
9. Do not share information or photos without the parents consent. We live in an oversharing world with multiple forms of social media. The number one complaint I read from parents in my preemie support groups is they are upset that their in-laws, great aunt, friend from high school, etc, shared personal information or a picture of their child in the NICU on social media. Dave and I were extremely protective of emmy and elle while they were in the NICU. We did not feel comfortable sharing their birth weights at first or some details of their everyday lives in the NICU because there is so much that people do not understand and we were honestly too tired and overwhelmed to explain. Before you tell anyone details or post a picture stop and think to yourself, "did I ask the parents and do I have their consent to share?" Remember, everyone is concerned about the child's progress but the parents are the most concerned. Do not add any extra stress or worry to their already extremely full plates.
10. Offer to help with the older kids if there are any in the household. Help with homework, taking to after school curricular activities, or set up a play date with your own children. This is a great way to alleviate stress on the parents, make their other children's lives stay relatively normal, and will give the parents more time to be in the NICU with their child that needs them the most.
11. Pray. Pray for the baby, parents, family, and the entire NICU staff.
12. I want to end the list with another really important thought about when a premature baby is able to leave the NICU. Parents cannot immediately move past their time in the NICU. Some babies come home with oxygen, feeding tubes, monitors, and other medical needs/equipment which requires constant care and attention. Continue to reach out and support the family because although the parents are beyond relieved to have their baby home, they still need your help.
emmy and elle are mircropreemies but they were fortunate to be able to come home monitor and oxygen free. My precious girls do have chronic lung disease like most preemies born around their gestational age. This means they have underdeveloped lungs and are much more susceptible to sickness and infections. Please understand that preemie parents might be even more protective of their children because they saw first hand how hard their child fought to survive. A simple cold can manifest and land our preemies back in the hospital. Preemies do not benefit from exposure. They cannot build their already fragile immune system by being around other sick kids when they are young. This is especially true during cold, flu, and RSV season. A lot of preemies have to be in isolation during the winter months. We kept emmy and elle isolated during their first two winter seasons. This year we are doing a modified isolation season because it will be their first year without the beneficial but unfortunately insanely expensive RSV shot, Synagis. emmy and elle will not begin preschool until the fall of 2018 when they are over the age of three mainly because we wanted one more year for them to get stronger before they are regularly exposed to a lot of germs and sickness. I know my children look like the perfect picture of health but we've had several scares since they came home from the NICU that landed us back in the hospital due to them becoming really sick, really fast.
PTSD is extremely common in NICU parents, especially the mothers. The NICU changes a person so please be kinder than necessary to parents you know that have gone through the trauma of having their child(ren) in the NICU. Continuously check in with the parents to see how they are coping once their child is home.
Every family is different. Each one has different needs. Please remember and utilize this post of information when wanting to help a family during their hardest path of life while their child is in the hospital. Please contact me if you are a preemie parent that wants to share something that helped you during your time in the NICU and I would be happy to add it to this list.
Having a baby in the NICU is such a stressful time. I don’t know how our family would have made it through without the help and support of our loved ones. Thank you to everyone who has continuously prayed and supported our family since the birth of emmy and elle! We are thinking about all families who have their own littlest fighters on World Prematurity Day!
