My husband and I have been married for two years, for a year we tried for our baby with no luck and on year one of not trying, God blessed us with a positive pregnancy test. I was 5 weeks along and we were thrilled. I have three children and he has a twenty year old, so this was a big surprise for him to be expecting a new baby!
At 12 weeks we did our routine bloodwork and found out he was a BOY! After many long talks and prayers, we decided he would be Kailor Dean. Kailor means “little warrior.” Little did we know how much this was going to ring true for our sweet baby. At 15 weeks I woke up in the early morning having what I was almost positive was a late miscarriage. Rushing to the emergency room and not knowing if there’s going to be a little heart beating when we saw him was terrifying. But after a major bleed, there he was, being his usual spunky little self. He was always sucking on his thumb, rubbing his face or waving at us. They sent me home and said everything looked good, that sometimes this just happens. Relieved, is the emotion we felt.
After two more weeks and the bleeding continuing with baby boy still healthy and growing as he should I was sent to a Maternal Fetal Medicine specialist a town over. Same diagnosis, this just happens sometimes. We were scheduled to return at 20 weeks to follow up, the bleeding never stopped and honestly, I as well as my doctors were in shock that Kailor was unaffected by this. At 18 weeks, the diagnosis came unexpectedly during a routine ultrasound. A sub chorionic hematoma reared its ugly head. They aren’t even that uncommon actually, but most of them disappear by 20 weeks but unfortunately mine continued to grow instead of disappearing. “It increases your risk of a miscarriage” “You should consider terminating this pregnancy” But I wasn’t giving up on my baby. He deserved a chance, he was surviving against the odds!
At our 20 week appointment with the MFM, he was not pleased with the size of the hematoma and by now my body was wearing down. My hemoglobin was low, and I was just not a picture of health. He immediately sent me for blood transfusions, my hemoglobin was 7.2. A normal range is 10+. He said I would be admitted at 23 weeks to start the steroid shots to prepare Kailor for his early arrival. So here I was scared knowing my son was coming entirely too early and after me fighting for my life, he’d be fighting for his. But we were ready, and I was determined we were going to make it to the 23 week mark! We had made it so far and we weren’t giving up on him. Those next 2-3 weeks were the most frightening of my life. I was in and out of the hospital due to blood loss, 20 weeks passed, 21 weeks passed, 22 weeks passed, we were going to make it! He was going to be the baby who made it against all doctor’s predictions. The night that 22 weeks 4 days rolled around I suddenly got very sick and passed out at the hospital where I had been for 3 days. I got 10 emergency blood transfusions. Yes, I said 10! The magnesium drip was started to try to stop labor, I was in indescribable pain (the worst I had ever been). Pain medications were started but it didn’t do much to alleviate it. I thought I was dying. But I got the first round of good news, my MFM said to transfer me, he was ready for Kailor and I (this was the NICU). I was thrilled, even though I was questioning if we’d make it because I was unstable.
During paperwork and waiting on an ambulance to come get me, they had me upside down in the bed to try to prevent me from having Kailor, he was born at 9:45 am. As rare as it is, he was born fully in his sac, so my sweet boy didn’t even know he had been born. It took seven whole minutes for a pediatrician to make it to him and get him out and it was detrimental to him. His heart was still beating by the grace of god, he was 1 lb 2 oz and 12 inches long, a clone of our youngest son and his daddy but to my surprise the hospital did nothing because he was 3 days too early. Those three days cost my baby his life. We embraced him for 51 minutes until he passed in his mommy’s arms. We are broken and we miss him every single day. I should be in the NICU fighting alongside my son like he fought alongside me when my life was on the line keeping him alive but instead, I’m holding his memory box and visiting his grave.
I fight for awareness to be brought to these micro preemies. They deserve a chance.
As a mother to no living children, some of the absolutely hardest things I have done is to continue breathing after losing Colette. It may seem a tad melodramatic, but it is true because parenting a child that you cannot see is a constant struggle of keeping her memory alive, her presence in our immediate family and in our extended family intact, all while struggling every day with our own personal grief.
My husband and I pretty quickly agreed that Colette would remain an active presence in our lives and our family. We would talk about her regularly, included her in discussions about our family, how we would continue to give back in her name. We talked about how future children would know about their older sister in heaven. For us, Colette was and still is as much as part of our family as if she was living in the next room.
Of course, this did not come with a whole host of problems that we continue to encounter day after day. There are so many issues that come up and that we have to figure out solutions to still remember Colette and include her in our family.
Family photos. While we are thrilled that we have pictures of Colette in the NICU with all of her tubes and wires, taken on cell phones, and then especially thrilled to have the gorgeous photos of Colette taken by Now I Lay Me Down to Sleep after her death, we do not have a family photo. The closest we have currently is a picture of Colette in her incubator with both of our hands touching her. And as we hopefully reach our long-standing goal of bringing a child home, we also struggle with knowing we will never have a complete family photo, that a very important piece will always be missing.
We were lucky enough to have been able to create what we call our “Coco bear,” made from a blanket personalized with Colette’s nickname, that we often use to symbolize Colette in photos. But, of course, having a bear is not a replacement for a child and it is so difficult to remember to include the bear when we have the possibility of family photos. Do we take it with us every time we go anywhere with our family? Do we keep it at home so it is safe from wear and tear? And while parents do not usually forget their children, when our child’s physical presence is a stuffed bear, it is easy to just casually forget.
What to say to future children. Most parents do not even think about having to have the talk with their kids about death. Then, when it comes up is usually in a natural circle of life kind of way, like as a relative or neighbor dies. But, from the very beginning, our future children will have to encounter what death means, and the innocence we all got to have with believing only those people died after living long lives will be shattered. Our children will know right away that life can be cruel, that sometimes babies and children die.
We will also struggle with the balance of still parenting and remembering our oldest child who is not physically here while also simultaneously parenting living children so that they still feel loved and not that they are living in the shadow of their older sister and completely unable to live up to the memory.
How to get other people to remember that we have a child. For most parents, they know that they are regularly going to be asked about their child and will easily be able to bring up their child to others. But, for us, we often have to initiate those discussions and that can be exhausting. There are sometimes whole days (and longer) where we are the only ones who say Colette’s name. People who have not suffered the loss of a child may not realize just how amazing it is to hear her name. Recently, we were at an event and we heard a mom yell Colette at her daughter and it warmed my heart so much that I had to go over to the mom and share our Colette’s story with her.
Birthdays and holidays. We commemorate Colette’s birthday and angelversary without a second thought. But, it is often to get others to remember the dates or even to know what to say to us or how to commemorate the dates. The same thing happens around holidays. Gathering with family at holidays is a huge trigger to realize that we don’t have to deal with high chairs or strollers or car seats or anything because Colette is not there. It is also the time where we want to make sure Colette is included as part of our family, even if not physically present. One thing we have done is that we have a candle we bring to these events, that we take a few moments alone to think of Colette and light it and then include it in the day as a symbol of her presence and position in our family.
Parenting a child who is not physically present is one of the hardest things someone can deal with and one that feels like the world’s worst rollercoaster. We love Colette, she is still our daughter and part of our family, but it is a struggle, one we never intended to have.
–Michelle Valiukenas Tisdahl and her husband, Mark Tisdahl are the founders of the Colette Louise Tisdahl Foundation which they created to to financially assist families in crisis due to pregnancy complications, premature birth/NICU stay, or loss.
From the moment my twins were born at 28 weeks and admitted to the NICU, my first thought in the morning and my last thought at night was when will they come home. I just wanted it all to be over. After struggling for 3.5 years with infertility, I was tired of waiting to be a mother. I just wanted my babies out of the NICU and home with me. Time is such a blessing and a curse in the NICU. Babies need time to grow and develop, to learn all the things they need to survive. But it’s also so difficult to go to the hospital day after day, and not know when your baby is going to be released. Time is rarely linear in the NICU, as just when you think the end is near, an issue arises that puts you right back where you started. I viewed discharge day as the end of this whole experience, but really it was only the beginning.
After 55 days in the NICU, one of my twins was ready to be released. I wasn’t prepared, in fact it felt somewhat sudden. I had been waiting to finally get to this point, where all the milestones had been reached, all the tests had been passed. But it was bittersweet to leave one baby behind. Although it doesn’t make much logical sense, I always felt a little better leaving, knowing my babies were not alone in the NICU. They had each other. Now, however, I couldn’t find solace in this.
The next ten days were the hardest part of the whole NICU experience. I literally felt torn in two pieces. At nearly 2 months in, I had an excellent NICU routine in place. It was something familiar and well-practised. But this was different. I didn’t want to leave one baby to go back to the hospital, but I couldn’t stay away from the baby still fighting in the NICU. Finding a balance was impossible, which led me to feel so guilty. But finally the day came, when everyone was home.
When I had imagined this moment over 2 months ago when my babies were first admitted to the NICU, I thought I would be so ready to take them home. But in actuality, it was a very scary experience. The NICU that treated my twins was a traditional open bay design. We didn’t have a single-family room, and I had never spent the night with my babies. I wasn’t used to caring for or even holding my babies without a variety of machines to monitor their vitals. I was sent home with two medically fragile babies, and very little training or instruction on what to do next. To say I wasn’t prepared was an understatement.
Now that I am several years out from the NICU experience, time has changed me. I no longer think about discharge day from the NICU as the end. I know now that life after the NICU is just the beginning of so many brilliant and hard things. And that the grit and tenacity that we created in the NICU is the foundation for the journey we have all only just begun.
NICU parents are no strangers to grief. In an instant, we are forced to take in the feeling of loss in so many forms it seems impossible to balance. As we watch our little ones’ struggle, we grieve their pain. We grieve missing that magical birthing experience. The moment when the doctor hands you your baby, everything is perfect, and you cry happy tears as love overflows in the room. We grieve the journey home with healthy baby in our arms. We grieve missing milestones like babies first bath. We grieve our life before the NICU. We grieve the daily struggle of 1 step forward and 2 steps back and the possibility of our stay being prolonged. The list of grief can go on forever. What’s even more difficult to grasp is the guilt that may come along with it. This guilt is a dangerous path. It makes you feel wrong to watch your little one fight for their lives while we mourn what could have been or what once was.
I am here to tell you it’s ok to let yourself grieve. In fact, it’s normal, it’s healthy and it’s necessary to let yourself go through this process. Maybe it seems cliché to walk yourself through the 5 stages of grief but with every hit you take while in the NICU going through this process and letting yourself go through this process is what will bring you to acceptance of your circumstance and the things that cannot be changed.
Denial will come as no surprise. You will face challenging decisions, harsh results, unwanted procedures and illness, permanent device implants and so much more. There is so much truth to the rollercoaster analogy and we want to believe the tests are wrong or there are other options.
Anger is always the next natural instinct and often times the medical staff may bear the brunt of this. Luckily this isn’t their first rodeo. They do understand we need someone to blame and they are the easiest targets. Just remember they are there for you and your baby.
Bargaining steps right in when we start researching other options, something else must be out there and maybe there is. It’s always worth asking and gaining as much knowledge as possible but also remember trust your medical staff to give you the information that best suits your babies case.
Depression gets us that much closer to acceptance and it really almost goes hand in hand. You can be depressed because you have come to the realization that this circumstance is what it is. This is where guilt may set in as well. While important and a natural reaction/phase of the process it’s just as important to carry yourself through this and into acceptance. Don’t let yourself get caught in depression for an extended period of time. Sadness plus guilt can be hard to overcome and is a delicate balance to maintain when you are vulnerable. Just remember, if you do find yourself stuck and having difficulty coming out of this phase to ask for help.
Acceptance allows you embrace the full process of what you are experiencing. While it may seem as faint as can be it will help you see there is a light at the end of the tunnel. Maybe it’s not as bright as you hoped, maybe it’s not the same color, maybe it’s not even a light and it’s something completely different! Either way it’s there and it’s a new path. It may be the unexpected path or the unwanted path but accepting it will help you appreciate every small victory gained.
Now you can embrace how far your baby has come as a gift and going through this will only strengthen you for what may still lie ahead. Your will find you get to create your own milestones for your little one and because they have to fight so much harder to reach them, celebrating them is even more exciting. This is just one of the many examples of why you must let yourself grieve. Grief is what gets you to the other side, the greener pasture, the next phase. You will face it so much more than you ever thought you would in a lifetime while in the NICU, but you and your baby will come out so much stronger and more resilient on the other side. You will learn so much about how strong you really are as a person and a parent. Most of all, you will find a strength you never knew you had and all because you let yourself grieve.
Whenever I am discussing my son’s need for Early Intervention Services or any of his diagnoses with a peer, usually the first words out of their mouth is “I’m sorry.” And you know something? I’m likely guilty of this, too. It’s an instinct and sometimes the words just come out before you can even stop them – like word-vomit. I know that the intentions are usually good.
You’re sorry that everything is so difficult. You’re sorry that there is little time to enjoy the sweet moments of childhood. You’re sorry that so much of our time is obligatorily spent at some type of appointment. You’re sorry that this life that we never asked for is the one that we have. But I’m not sorry.
Of course, whenever I pictured my future child’s life, I saw all of the positives: the effortless running and jumping, endless talking, refrigerators covered with artwork, trips to museums and concerts, complete with laughter and joy. Our life may look a little bit (or a lot) different than I had once dreamed, but I am so much more appreciative of the little things. There may not be long runs and high jumps, but boy, do those tiny steps he takes bring tears to my eyes. Our conversations may not be much to an outsider, but my heart understands every word he says. The coloring on our walls may not be beautiful to you, but I appreciate the effort that went into each stroke. Outings and scheduled activities may not appear on our agenda often, but that means that we cherish our time together even more. I have plenty of laughter. I have joy. We live our own happiness in our own way.
As a special needs parent, I don’t expect, want, or need pity. Compassion, maybe, but never for someone to feel sorry for our circumstances. Instead of apologies, try offering a listening ear, a helping hand, or possibly even caffeine. I would love company to an important doctor’s appointment or therapy session. My love language these days is research, so it speaks volumes when someone is informed on a condition, treatment, or diagnosis that our family is working through. The words, “How do you spell that so that I can Google it later?” touch my soul in the deepest way.
You don’t ever have to apologize. We are so grateful every day, believe me.
“Bittersweet” is the main word that comes to mind on the day we took Jack home before Owen. While we were thrilled to get Jack home and away from the NICU, it felt wrong. Wrong having to take him away from his brother who had been with him since the womb. Wrong to be happy for Jack. Wrong to introduce Jack to big brother Noah without the pair of them. Wrong to give Jack attention at home while his brother was still fighting to get out of the NICU. Wrong to celebrate. Heartbreakingly wrong.
Holding them both for the first time
We didn’t know how much longer Owen would be in the NICU. The last thing we were waiting on was him taking his bottles by mouth for 48 hours. With every call to the NICU, I hung up teary eyed and disappointed. I wasn’t able to visit him much because now I had two kids at home that needed me. It was guilt all around.
During this time, well meaning people would say that it was a good thing because I could adjust to one twin being home and prepare for the other to come home. While I can appreciate the rationale behind it, it felt horrible not having my whole family under one roof, and it felt like all joy needed to be paused until Owen came home too. This scenario felt like an eternity when in reality it was one week that Owen stayed in the NICU after Jack was discharged.
The day we brought home Jack while Owen stayed in the NICU.
The whole experience is sort of surreal thinking back on how everything played out… you’re having twins… they are looking good so far… there’s an issue we see with the twins… we need to monitor you frequently… be prepared for the twins to come early… you need to deliver tonight… they need to go to the NICU… they’re only “feeder growers”… they’ll be home soon… they just need to get a bit stronger… they need to grow more… they need to eat… Jack can go home… Owen still isn’t taking his bottles… Noah wants to meet Owen… Owen was too tired for this last feed… Does Jack miss his brother?…
Owen is being discharged.
Jack & Owen
After 2 months in the NICU, Owen came home to join the rest of our family. The real fun (and the real sleep deprivation) began, and I welcomed it.
I wish I could say it’s been a piece of cake since they’ve come home, but it hasn’t. But you know what? I don’t really care because the important thing is we are all together now, and for that, I’m so grateful.
Life as a preemie parent is a journey like no other. It’s filled with so many obvious difficulties, but also various hidden struggles that are unexpected and that people may not consider. It’s an ongoing battle with many stages throughout a parent and child’s life, mentally, emotionally, and physically. Here is what you should know, being in the support system of a family with a preemie:
1.We have trouble accepting help. We missed out on those newborn days. A lot of parental responsibility was revoked from us for a period of time. This journey that we stumbled into was not one that we chose. There are so many things that we feel that we must do ourselves all of the time because we missed doing them in the NICU days including, but not limited to: laundry, diaper changes, feedings, rocking, snuggling, wiping tears, and bathing. You mean well when you offer your ability to do these things, but we sometimes feel that we can’t say yes. We’re taking our time back, just be patient with us. Your kindness doesn’t go unappreciated.
2.We’re lonely. Due to medical restrictions, scheduling requirements, or simply pure exhaustion, preemie parents rarely have time for interaction with other adults. People in general are just busy and adulting is so hard, but parenting a preemie adds another layer of complication. We miss you, we really do, and every single time that you reach out or stop by or even tag us in a relatable meme is so appreciated. It helps us remember what it’s like to be seen when we feel so forgotten.
3.We’re scared. Our parenting journey began with a crash course on how to keep our baby alive: what beeps require attention, which are absolutely critical, and which just result in closer monitoring, how to perform CPR on a baby that pretty much fits in your hand, wire-detangling without detaching, along with other terrifying items in the syllabus. As much as we try, and believe me we do, it’s impossible to fully come back from that. We’re constantly living in fear of germs, illness, diagnoses, and the next thing that will try to take us down. We accept being called paranoid because we know the alternative of letting our guard down.
4.We’re struggling financially. Did you know that they call preemies million-dollar babies? By the time a baby is discharged from the NICU, the total of all medical bills is potentially millions of dollars. This doesn’t include the dozens of doctors and specialist visits on the calendar at any given time, any medications or supplements prescribed, or any medical equipment. Oh, and kids in general are just expensive! Bottom line: we scrounge, pinch pennies, and do whatever we can to stay afloat. This may mean that we must decline invitations to activities which involve spending money, even if it’s just the cost of gas. It’s tough, but we try our very best.
5.We’re tired. Parenting is exhausting, I think we all can agree, but I’ve never felt a tired like NICU-tired. I was so fatigued that I felt it in my bone marrow. It ran deep. Even now, my brain is still in survival-mode – a constant loop of “what-ifs” and “how to survive,” and my adrenaline pumps until I crash. But no matter how tired my body gets, even if I feel like I haven’t bounced back in these past two years, I’ve never been as tired as I was in the months that my baby was in the NICU. As exhausted as we are, however, we’ll never say it out loud. We’re trying to fully embrace the time we have.
The NICU is not exactly a place of rest and relaxation. As a parent of a NICU baby it can feel like you are constantly drowning in a sea of uncertainty, stress, sleep deprivation, medical terminology and emotional turmoil. All of this can pile on quickly, if not all at once, and it is important to take a step back whenever a small moment arises to care for yourself. These moments may be few, between all of the doctors, nurses, respiratory specialists, scans, and bloodwork rotations. Not to mention feeds, diaper changes and your child’s change in medical status, but every now and then the stars align and you will find yourself maybe 5 minutes or even 2 hours of actual time to yourself. How you choose to use this time could be key to surviving the roller coaster that is life in the NICU. Rather than diving into Google to research more about your child’s condition and statistics here are some helpful tips of self care for parents in the NICU.
Step away from the Social Media Platforms: It is easy to get lost in the mindless scrolling of negative news, NICU pages, statistics and more. Frankly it can start to be quite overwhelming. While it is important to learn and relate with other parents that can offer advice, it is just as important to give yourself the downtime you need. Listen to music, read a book or even a trashy magazine, invest in a good adult coloring book to give yourself the mental break that takes your mind away from your surroundings of alarms, medical terminology and numbers.
Eat Something Healthy: It is no secret that ironically hospitals are not surrounded by healthy food options. Not to mention, when you are stressed and exhausted fast food can be a satisfying go to. Your baby needs you to be healthy too. Eating something lighter may be what you need for a little more brain power. Find a place that has a good salad. If there’s nothing close by, look into a food delivery service in your area. Many will deliver to the NICU door or to hospital floors. If you have a Ronald McDonald house close to your NICU try attending the free lunches or dinners provided by other parents every so often. This allows for a healthier option and it’s a good social opportunity to meet other parents in the NICU. I found this to be especially useful in getting information on doctors in our hospital. It was great to hear feedback from other parents on their experience with various specialists.
Write Everything Down: Get yourself a nice journal and start documenting each days events. Writing can be therapeutic and can help you clear your mind of the days events. This is not only a good way to keep track of changes in your babies statistics but also a great way to track progress and memories. As a NICU parent you don’t have the luxury of capturing the standard milestones parents get to capture in baby books. Create your own with a journal. Every little victory is worth celebrating. I often still return to my NICU journal to remember how big these little victories/milestones were. Each one gets you that much closer to graduation.
Talk to Someone: When you are in the NICU all of your conversations revolve around your child, their medical status, and other medically related topics. You may find this especially true in all conversations with your significant other and close family. It’s hard to consider even discussing anything else because the NICU is an all consuming experience. Make a point to change the conversation. Ask how they are doing. If one of you was able to get away for a bit or go to work that day then talk about their events outside of the NICU. Call a friend and check in. Focusing your energy away from the NICU can make all the difference and get you mentally back to a better place which can better prepare you to handle the next obstacle that may come your way.
Breathe: Find a quiet place in or out of the NICU to just sit and breathe. Many hospitals have garden areas that I often found to be empty and under used. Get a quick 5 minutes of fresh air and sunlight on a bench, close your eyes and take a deep breath or two or three. If you meditate, do some breathing exercises. Whatever your destress method may be, lose yourself for a moment and allow yourself to let go and maybe even relax for just a moment.
Coloring while doing Kangaroo Care in the NICU
These may seem like minor and practical steps and there are many more things we can all do to ensure we care for ourselves in the toughest of times. The most important thing is to listen to your body and know when it’s time to take care of yourself. You are not just your baby’s advocate, you are your advocate and you need to be at your best to care for your baby. These small moments can be the game changer in helping you overcome the unknowns that the NICU can bring over the next few days, weeks or months. Most of all no matter what you may feel remember you are not alone, you are stronger than you think, and you got this. Keep Fighting.
Having a child is filled with peaks and valleys. Having a preemie is filled with those same peaks and valleys, but having a micro-preemie sometimes the valleys outweigh the peaks. My lovely daughter Avery was born at 25 weeks 3 days gestation. She is my first born and of course my first encounter with the NICU. Before having Avery I had never been inside the NICU or even knew of anyone who had a child that had to stay in the NICU. When my water broke at 23 weeks and I was admitted to the hospital for the duration of pregnancy, the fears of having a “normal “pregnancy vanished. I didn’t even know I was in active labor until I was told I needed to push at 25 weeks. I went into survival mode. As humans we never know what we can handle until its staring us in the face. There are times when I look back and think: I made it through that? How?
Avery was born on April 17th, 2016 at 5:22am. She wasn’t breathing when she was born and one of her legs was bent to the side. The doctors were able to resuscitate and intubate her in my room and then they rushed her off to the NICU. She weighed 1 pound and 10 ounces at birth and spent 82 days in the NICU. I was rushed to surgery due to the amount of blood I lost and complications with my placenta. After I got out of surgery and my husband rolled me towards the NICU my only thought was: Am I strong enough for the both us to survive this, physically for her and mentally and emotionally for me? I couldn’t even hold her due to her skin being translucent.
I didn’t want to touch her out of fear of making it worse. I didn’t know if my physical touch would delay her growth. I was scared. As a mother I was scared to touch my first born. I just stared at the incubator watching her chest rise and fall, rise and fall. I kept telling myself that’s a good sign, Erica. Then I heard the machine’s humming and peeping in the background. They reinforced the reality that although her chest was rising and falling, it wasn’t happening on its own. She had help. A lot of it.
Avery was off the ventilator and placed on oxygen before I was discharged from the hospital. This meant she was progressing. At that time I thought ok that’s good, but I just didn’t know how to celebrate the small milestones or that I should “celebrate”. I just wanted her home. I didn’t care about the little successes that would eventually be her stepping stones to becoming a NICU graduate.
I read an article on bbc.com that parents who have had a child in the NICU suffer from PTSD-due to lack of psychological support like counseling or group therapies. As a parent who did struggle with PTSD, that statistic is not alarming to me. I know there are other parents just like me who didn’t seek the necessary help they needed due to the fear of the unknown and ashamed to admit that help was needed. There were real resources available to me once she born. This is my biggest regret. I was solely focused on getting Avery home and not on my own well-being. As parents it’s natural to put your child’s need before your own. Avery is now 3 and I still have moments when I have flashbacks. A NICU scene on a television show or even a commercial makes me pause, often times cry, pray and reflect on how the NICU is still impacting my daily life.
I had to customize my own survival guide on how to cope with life outside the NICU as no two NICU experiences are identical. I realized there are various factors that can impact the overall NICU experience included but not limited to: financial stress, mental state, family/friend support and baby’s health condition.
Pregnant Women: Grieving the loss of a “normal pregnancy”
When I was pregnant with Avery so were 2 of my coworkers and we were all due within weeks of each other. After having Avery 3 ½ months early, I couldn’t bear to see them. I didn’t want the constant reminder that their child was still in their womb with the ability to be born full term, while my child was laying in an incubator fighting for her life. The sight of any pregnant woman infuriated me. I was jealous because I didn’t get to experience the growing bump or even her kicks. All of that was literally ripped from me with no explanation. I knew it wasn’t their fault; but, at that point in the grieving process of a “normal pregnancy” it made Avery’s premature birth a reality that my heart wasn’t stable enough to endure. I needed to blame someone and in mind, at the time, pregnant women seemed like the perfect target because they were experiencing what I wasn’t, so to me it was their fault.
I learned to look at the silver lining: God blessed me with the ability to see how beautiful Avery was 3 ½ months early. I didn’t have to wait 9 months. I was able to witness her personality, smile and facial expressions all of which wouldn’t have been present until her due date of July 27th.
Controlling what I can
My life is no longer controlled by machine beeps, NICU policy and procedures. Once Avery graduated from the NICU, I wanted to gain control over anything and everything I could. While she was in the NICU I ordered a 600 page preemie book of Amazon so I knew which questions to ask and at what time during her duration in the NICU. I took a crash course on preemies and the NICU. It was my way of coping and controlling what I could. The more information I absorbed the more comfortable I became. Controlling was a viable coping mechanism for me. It gave me some power back and a sense of purpose. Once home, small things I could control helped the most in the adjustment to being out of the NICU. I was able to decide when she took a bath. This might seem small, but when bathing wasn’t a frequent task while in the NICU I was more than thrilled to be able to do this on my own terms. Even dressing Avery in adorable baby clothes that didn’t have easy access for wires and tubes; simple yet so significant.
Communication
I encountered some difficult conversations involving answering family, friends and even strangers questions about Avery’s progress. How long did it take her to do (fill in the blank)? Is she walking now? Can she talk? How is she eating? Does she socialize with other kids? Did she come home on any machines? What therapies did she need? Although these questions seem innocent, at times they would cause me to feel ashamed and anxious because it re-iterated the fact that Avery is different. I didn’t want her to be different in a way that forced people to treat her as such. It caused me to second guess her progress and how society will judge her compared to her peers. I had to politely address them and in the beginning I found myself leading with the disclaimer that she was born 3 months early. As if this would explain or justify my response to the question especially if it didn’t adhere to their expectations as to where she should be. This wasn’t fair to Avery’s progress and I realized I owed them no explanation.
The open communication shared with my spouse has been a blessing because he shared the experience too. He shared his fears and then some. When we enrolled Avery in preschool to begin in the fall of 2019 I had anxieties and reservations. How will she interact with the kids in her classroom? Her teacher? Being away from home? Will she be judged? Treated differently? I honestly was against it. I wasn’t ready. Avery’s period in the NICU has left me uneasy about simple milestones that should be joyous. The damage produced by the NICU experience has caused conversations about Avery’s well-being to become long wined and forced me to use an extensive pro and con list when making life decisions for Avery. My husband explained to me that she’s a toddler and needs do this in order to prepare her for her continued growth. She needs to be exposed to a classroom. Simply put he asked me “isn’t this what you were advocating for while she was in the NICU? Wasn’t this the goal? I paused for a brief moment and I was at a loss for words because my husband’s perspective was insightful and forward thinking. This is what I’ve been waiting for since April 17th2016. This open dialog offers a safe place to be vulnerable about where I am in the process.
Meeting your child where they are
Having Avery evaluated for PT/ST/OT services made me realize that each chapter in her life will take me back to her being in the NICU and that feeling of uncertainty. The NICU experience is chronic, everlasting and doesn’t go away but will continue to manifests itself in another form. This is my reality. I would only have so much control. Re-iterating the fact her journey will not be a like full term child. She will do things at a different pace and ultimately when she wants to because with her sassy personality, it only seems fair. I’m learning how to not insert my stress and anxiety for new challenges onto her. Each day I’m coping with both of us being out of the NICU. Bottom line, she made it out. She’s here and thriving in ways I never imagined. Those small successes are massive now. We celebrate them all: from crawling, to first steps, first words and even the beloved toddler melt downs. Being in the NICU has taught me to live in the moment and know that it all has a greater purpose.
Avery today!
Avery was exactly where God intended her to be. She was here. She survived when doctors didn’t think she would. It’s refreshing to live in the present, take it one day at a time and look at how far Avery has come. When unexpected challenges present themselves I stop, take a breath, and look at the bigger picture. Avery came into the world in a dramatic yet scary fashion and the impact she will have on it will be breathtaking.
As a preemie mom, I’ve had the opportunity to be relatively vocal about our family’s experiences in the NICU and beyond, but my husband, DJ, hasn’t necessarily gotten to do the same. I decided to sit down with him and ask some important questions to give him his own voice, and to hopefully allow preemie dads everywhere to do the same.
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What were your first thoughts when you first saw your baby?
It was hard to know what to expect but, when I first saw Flynn, I cried of happiness. Being a parent was something my wife and I were working very hard at.
What advice would you give to another dad with a baby currently in the NICU?
My advice would be to stay strong for your little boy/girl. Be positive when you’re around them, even though it’s difficult.
What was the most memorable part of your NICU journey?
The most memorable part of Flynn’s journey was when he got to come out of his incubator. That gave me some assurance that he would be coming home!
What, if anything, was the most meaningful thing that someone did for you while your baby was away from home?
I would have to say my in-laws going to see Flynn when we were not at the hospital was meaningful. Just knowing that he had more family support by his side meant a lot to me.
What is the hardest part about being a preemie dad? It’s probably seeing your child frustrated while trying to overcome their particular setbacks or delays. While you know that they will likely catch up in their own time, it’s difficult to see them upset.
What has been the biggest challenge since being discharged from the NICU?
The biggest challenge has been kind of letting down my guard. Kids are going to be kids and get dirty and get bumps and bruises; it’s not the end of the world. You can’t help but still picture what your baby looked like and how much they have transformed.
What has being a preemie parent taught you?
It has taught me that reaching milestones are not a competition. Every child is different and every moment is special, no matter when it comes.
What milestone has your child reached that made you the most proud?
I would say him sitting up as it was one of his first major milestones. It showed me that with his determination, he will achieve anything he sets his mind to.
Is there anything that still reminds of you of the NICU?
Driving by the hospital is very often a reminder, as we have to take that route quite regularly. The hospital is currently doing a major renovation so it especially sticks out.
What is something that every preemie parent should know?
Every preemie parent should know that the NICU stay does not define your child. While it will always be a part of them, they are so much more than that.
Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.
Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.
