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.
I was scrolling through Instagram at about 3 a.m. while my husband, Danny slept on the couch next to me. My internal clock was a bit off; the NICU does that to you. It was about two weeks into our stay at the hospital and I was deciding on which filters to use to enhance my influx of baby photos. I glanced over at Danny and smiled.
He was sprawled out on the unpadded hospital couch, which was about half the length of his body. His legs dangled off the end of it and he was covered by a light blanket that did little to keep him warm. His pillow was on the floor. I am guessing that it did not provide a whole lot of support and he deemed it unnecessary sometime during his sleep. My hospital bed was too small for the both of us but sometimes the oversized chair in the corner was his resting place of choice instead.
My gaze was suddenly broken by the sound of my phone alarm, a beat we had gotten to know well. It had been three hours since our last diaper change and our baby, Henry’s last tube feeding. Danny slowly got out of bed and said, “I got this, try to get some rest,” as he maneuvered his body to fall out of its stiff positioning. I watched him as he walked down the softly lit hallway to the NICU and as he scrubbed in for several minutes. He called through the intercom for approval of entrance and disappeared into the room.
I saw Danny again three hours later after my alarm signaled for the next feeding. He was sitting on the rocking chair in our area of the NICU with Henry’s two-pound body laid out across his bare chest. They were doing skin-to-skin contact, also known as kangaroo care, which, we were later told; our nurses believed really allowed Henry to thrive and helped in meeting his milestones. Danny fought to keep his eyes open but kept his loving gaze on our baby boy.
I took over at that point as Danny kissed me goodbye, so that he could go check in to work for the day.
To the often times unsung superheroes of the NICU, thank you.
Thank you for stepping up for your child and doing what is best for them, even when it takes a toll on your own wellbeing at times.
Thank you for facing these trials with positivity and strength.
Thank you for being involved; for washing breast pump parts, for ordering room service, for talking with the amazing staff that takes care of your family and for being present.
Thank you for not only taking care of our baby, but for me as well.
Though the holiday season is behind us, celebrations are year-round. Especially with the nicer weather trying it’s hardest to stay constant and summer right around the corner, get-togethers are becoming more frequent. There are things that are important to remember if a child with sensory processing disorder is a part of your life. While special accommodations are never expected, understanding and compassion are always appreciated. How can you create a loving environment for your favorite sensory kids?
1.Hugs and kisses should be kept to a minimum. It’s nothing against you – some kids with sensory processing disorders just do not express affection in this way. It’s helpful to wait and see how a child greets or says goodbye to you, they may wave, possibly just say “hello” or “goodbye,” or maybe nothing at all. Maybe, given some time, they may give you a hug or a kiss but it shouldn’t be expected. Parent Tip: I usually ask Flynn how he would like to say hello or goodbye to someone, that way he is in control of the situation. If it makes them even more comfortable, you can even get creative and bring things along that your child loves (like stickers or drawings that they have done ahead of time) to give to those at a gathering, if it’s appropriate.
2. Leave discipline up to the parents or primary caregivers. It’s possible that quirks that you find unusual aren’t uncommon at home, so the people who care for the child will likely know how to handle the situation. It’s even possible that some behaviors are indications of something else, so there are specific remedies. For example, my son is constantly putting items in his mouth because he craves oral sensory input. To anyone else, an immediate response may be to yell at him, but loud noises frighten him. It may also be instinct to force your hand into his mouth to retrieve the object, but due to his sensory aversions, this may cause setbacks within the progress he has made. As his parents, we understand the most positive response to situations like this and it’s ideal to leave it up to us. Of course, if there’s ever a question of safety, that should always come first!
3. Some situations may be overwhelming, so be patient. For some children, loud noises, bright lights, certain colors/patterns, potent smells, or even particular textures may be too much to handle. There may be moments where the parent(s) and child must excuse themselves to regain some stability and calm down. This may happen whenever there’s a trigger which could be at any time, even if it’s inconvenient, so patience and understanding from others is so important.
4. Please don’t take a declined invitation personally. I’ve had to say no to a lot of events because I know the stress that it would put on my son (or me) to attend. Sometimes, I know in my heart that it’s just going to be too much – too many people, too much noise, too far away. I try my best to be as prepared as I can so that we can do as much as possible, but we just simply cannot do it all. Speaking for all special needs parents who are in this situation: we do not mean to hurt feelings or disappoint. We simply know our limits.
5. Even an event held at home can be stressful. Sometimes, even preparing for an event at home can call for a lot of extra preparation. With extra people in their usual space, kids may feel off balance causing erratic behaviors which, for us, can even last a couple of days. It can take its toll at times, so please know that even gatherings held at the family’s home can be taxing and may not happen frequently, or may have to have a limited number of guests.
What it comes down to is this: parents of children with sensory processing disorders are trying their best. We try to approach each situation with love, understanding, compassion, and the best interest of our children in mind. We really would appreciate it if you could do that, too.
mom•guilt /mahm-gilt/ (noun): the unhappy feelings caused by thinking or feeling like you did something wrong, like missing your child blink, not having time to make teacher gifts, or forgetting that they don’t like scrambled eggs this week.
I’ll never forget the first time that I felt the unwavering, knock-the-air-out-of-my-lungs, stinging pain of mom guilt.
Before having Flynn, I had planned on breastfeeding. After he was born, though, he was unable to eat on his own, so I was pumping what I could to swab his mouth or store away for later. It was a very difficult process for me, especially given all my body had been through. Who knows what my experience would have been like if he had been born full-term? Maybe I would have had the same issues, but all I know is that my milk hadn’t fully come in at 6 months pregnant. Along with my doctors, I made the decision to stop pumping all together when Flynn was just a couple weeks old. I felt guilty all on my own, as a mother not being able to provide the “best” for her baby, but I also had several friends at the time comment about how I had simply given up.
“You’re not trying hard enough. Breastfeeding is the most important thing you could do as a mother.”
Especially without the support surrounding me that I really needed, I had a really hard time. Eventually, I was able to be the encouragement that I needed and was able to lift myself out of such a dark place. Mom guilt is no joke and extra support is so important.
Mom guilt is the worst kind of guilt because a mother’s love for her child is the fiercest kind of love. This is the case for all mothers. There is a special, unbreakable bond between a mom and her sweet baby. As a mother, we know our child the best – every quirk, behavior, word, and thought – especially when they are little. When there is something that we feel disappoints our children, negatively impacts their lives, or makes that little lip quiver, it’s like a shot right to the heart.
Why did I feel so guilty about not being able to breastfeed my son? Because I was constantly told that “breast is best” and I wanted my baby to have the best. Anything less was unacceptable, and it frankly broke me to let him down, especially within his first days. That’s a mother’s love.
I don’t know if there is a remedy to prevent mom guilt. I think as long as the love is there, the pangs of guilt will still arise every now and then. They’ll happen when you are at a meeting and your child does something new without you. They’ll happen when you snap after being asked the same thing over and over, or after hearing “mom” four million times before noon. They’ll happen when you have to calm them because you bought the wrong type of crackers – they hate this kind now. And they’ll happen when you’re distracted with work or school or a chore and you have to tell them you can’t play right now.
What’s important to remember is: you’re doing an amazing job. Your child thinks so, too. I promise you that they won’t remember what kind of snack you bought that they hated, that you weren’t able to do a puzzle with them on a random Wednesday, or that you missed their first time using glue. They will remember the times that you were there for them, the kind words you used to heal them and dry their tears, the kisses for their boo-boos, the trips to the playground where you ran and played with them, your support and love, and the forts that you built on Saturday mornings.
Bottom Line: Don’t be too hard on yourself, mama. You’re doing great!
In my life, I’ve read a lot of books. I’ve read lots of books because I’m nosy. Honestly. I want to know everything about anything and, as a mother, I want to teach my son everything, too. Which is why I’ve been so frustrated when it comes to the lack of resources in the literary world about prematurity. Luckily, though, I’ve done some research so that you don’t have to! The following is a collection of books that address prematurity in different ways“
“Fiona the Hippo” by Zondervan
This amazingly illustrated, sweetly and inspirationally written book is based on the true story of Cincinnati Zoo’s Fiona the Hippo – the baby hippopotamus born prematurely who fought against all odds to survive. In the story, Fiona snorts in the face of challenges and perseveres fearlessly, as all preemies do. In a whimsical way, your preemie will be able see a resemblance of their own journey home.
I Was a Preemie Just Like You” by Ali Dunn
I couldn’t imagine a better way to discuss the NICU to a child, as an adventure instead of a scary place. It is the perfect book to read with your child to allow them to ask questions, or to read to a young child to lay the foundation for a future conversation about their journey. The author, Ali Dunn, has a great collection of books, including one about twins!
“Firsts & Favorites” by Kate Pocrass
One of my biggest frustrations about being a preemie parent with a new little one was the impossible time that I had trying to find an appropriate baby book. I didn’t want to be forced to rip out pages that didn’t pertain to us because I never had a baby shower or a bump to show off – it was painful to think about these memories that we didn’t have. Not to mention the milestones that weren’t reached “on time” according to the classic baby books. I was thrilled to find this baby journal that focuses less on milestones and when they are reached and more on the memories, like “The first time you saw a rainbow” or “Your favorite books.” There are even several write-your-own pages for things that you don’t want to forget.
“Preemies: The Essential Guide for Parents of Premature Babies” by by Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron M.D.
This book is not meant to be kept on your night table and read from cover to cover, but is a pretty helpful resource that covers a wide array of topics from the NICU and beyond. The Appendix, alone, is handy and contains a nationwide contact list to provide further assistance in the areas discussed in the book. I read this book recently (Yes, I read it…I told you I’m nosy) and only wish that I had it in our NICU days. For those less nosy than I am, which I’m almost certain that you are, there is a pocket version of this book within the Graham’s Foundation’s MyPreemie app so you can have the most helpful info at your fingertips.
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“Go Preemies! Inspirational Stories of the World’s Most Famous Preemies” by A.P. Male
Did you know that Albert Einstein was a preemie? How about Wilma Rudolph? I didn’t know this either, but I’m so happy that I found this book so that when my son becomes frustrated with the challenges he faces, I can approach him with stories of these amazing people who have overcome some of these same things. That’s pretty darn incredible.
Have I missed some of the favorites on your list? Feel free to email me at kristina.mulligan.blogs@gmail.com! I’m always looking for things to read.
After we spent a month in NICU we were headed home! We were lucky to be going home without any monitors. Even so we were terrified of our hour and a half drive home. We even had to stop at our doctor office and get a base weight. My husband and I were a nervous mess!
The first night was pretty typical I guess. Up most of the night keeping track of cc’s eaten and spilt, wet and dirty diapers, and pumping when I could. Corbin struggled with eating. We kept a log of every time he ate and how much. We knew he had to eat 46 cc to keep his now 5 lb weight. He must have known, because he wouldn’t eat anymore than what was required. Since he wasn’t a strong eater he would wake up and I would make a bottle of breast milk. It would take him almost 45 minutes to eat under 2 ounces. I would then pump for another 30 minutes. This was every 2 hours so sleep wasn’t happening.
I worked for a small business that didn’t offer maternity leave so in order to keep my health insurance I couldn’t miss more than 6 weeks of work. For all of you that have had million dollar babies know how important health insurance is! For me this meant only getting 1 week at home with Corbin before leaving him again. That first week home was constant worrying. Is he eating enough? Is he gaining weight? Are we going to end up back in the hospital? We checked in with our doctor twice that first week and lucky for us he had gained a few grams!
2 weeks went by. My grandfather, whom I am very close with, took a turn for the worst. My son and I were there by his side for his last words. His funeral was the actual due date for Corbin. Guess God wanted him to meet Corbin!
I met with my OBGYN for my first followup. I remember crying the entire appointment. My doctor told me I needed more sleep. I had a preemie baby who didn’t eat well and I worked full-time. HA!
Next came the colic. Anyone who had ever experienced this knows it should be a 4 letter word. I know my little man was trying to catch up and I’m sure his little body was tired. He would cry for 6 hours straight. My heart would break. I would get off work and push him outside in a stroller until dark. Wake up at 3am and drive around until I had to be at work, then do it all over!My medical bills started to pour in, my baby cried most of his wake hours, my grandfather had just died and I lived on no sleep. I would get in the shower just to cry. We did many tests and sonograms to make sure nothing was wrong with Corbin and it was just colic. I didn’t know how depressed I was at the time. My body had failed me and almost took the life of my child, I couldn’t soothe him or breast feed. I don’t know how we got through it. I learned to take one day at a time. In the pit of my stomach I knew my sweet baby boy would be fine. And he was
My son is now almost 5. YAY! Every day that goes by I think about our journey. It was the hardest thing I have ever done. The amazing child that came from it and the things we have learned along the way. I wouldn’t change a thing!
After delivering Corbin 10 weeks early I was sent up to my room with no baby.It wasn’t the delivery I always imagined. There was no magical bond holding my baby in my arms, instead I bonded right away with my breast pump.I got to hold my baby for maybe 60 seconds while he was hooked up to all the machines.To be honest I don’t even remember this.I don’t know if it was the shock or the meds, but I have no memory of holding my new baby for the first time. Over the next 2 days I would get wheeled down to watch him through the isolet.Sometimes the nurses would let me hold him while he got his feeding through his NG tube. It didn’t feel real. I cried all the time.
The doctors told us that Corbin needed to do 3 things to leave the NICU, eat on his own, gain weight and maintain temperature.
Seem pretty simple for term babies, but as I would find out it is a marathon for preemies.After my 3 days in the hospital I was being dismissed. Our plan was to stay at the Ronald McDonald House next to the hospital, since we were 150 miles from home. unfortunately the house was full. My husband and I got back into our car, no baby and no place to stay. I was beyond devastated. We knew we could sleep in our car for a couple of days, but we knew long-term that wouldn’t be an option. The only choice we had was to rack up even more bills by staying in a local hotel. Nothing like having a million dollar baby and a hotel bill to boot!
We went to the hospital every 3 hours to see Corbin get his feeding and leave for him to sleep and me to pump. There was a time the nurses let me hold him while he was eating. While I was holding him a nurse came running up to us and started rubbing his back. While I was already tired, hurting and developing post partum, now my baby had quit breathing. The nurse was able to get him back into rhythm. He started on caffeine right after that and only had a few more “hiccups” after that.
After a few days, he was able to get rid of his CPAP and move up to the next floor. We shared a room with 2 other babies. Now Corbin may have been early, but he was a massive 4 lbs! In the room with us was a baby born at 24 weeks and fighting for his life every second. It was hard to watch him constantly struggle and knowing how long of a road he had. We were very lucky.
Over the next few weeks we were working on maintaining body temperature and eating. At this point we were still staring through the glass and watching our baby grow. Corbin developed an eating issue. After every feeding he would spit all of it up. We would watch the monitors dip and out it would come like clock work. The doctors reassured me he just needed time, but being a first time mom and watching monitors dip like they did made me sick to my stomach.
Over the next few days we were able to move to a private room and an open isolette! I was bound and determined to breast feed. I tried everything to get him to latch, but got nothing in return. I would try to breast feed, fail, hook him up to the NG, then pump. There was about a
25 minute window then I would start all over again. I knew we were very lucky, but I hurt. My friends were all back home delivering their healthy term babies. Getting to breast feed and complaining about sore nipples and night-time feedings. Wow how I was that could have been me. What I would have given to have their “problems” while I was watching my baby being hooked up to machines and getting some sleep a mile away in a hotel.
I’m not sure where the time went but afterwhat I thought wasa few days of the constant cycle, the doctor came in and said we would be dismissed the next day. YAY!! We were beyond scared. Corbin hadn’t been taking to the breast and when given a bottle would only take a few cc’s. We packed our things and said goodbye to the amazing staff we had got to know. It had been a month of ups and downs and tears and laughter. We had a healthy baby boy and headed home to our new “normal” and the mountains we would face.
To introduce myself, I am what I considered a picture of health. I’m a runner, a triathlete and a vegetarian. I lived a very active and healthy lifestyle. My husband and I were married in June of 2013. We both wanted kids right away and by God’s grace, we became pregnant right away! Only a week after I had a positive pregnancy test, I had horrible stomach pain. My doctor sent me to do lab work and have a sonogram. I was terrified. I hadn’t even told my parents I was pregnant and now I was in horrible pain and scared. All my blood work and sonogram came back normal and they gave us a due date of late July. I did everything right. I didn’t drink soda, I ate super healthy and maintained my active lifestyle. Things started to fall apart early on in March. I woke up and used the restroom and noticed the toilet was full of blood. Terrified I woke my husband who drove me to the hospital. My hospital is over 30 miles from where we live. When we arrived they did an ultrasound and found I had a placenta previa. My bleeding stopped and my baby boy was fine. I was put on 3 days bed rest. After that episode another month went by with no real problem. Then again I woke up in the middle of the night with more bleeding and off to the hospital we go! My husband and I were much more relaxed since we had an idea of what was going on.When we arrived at the hospital they did another ultrasound and found again the placenta previa. It had moved up which was good, but it made the doctor’s question why I was bleeding. They sent me home and decided I could go back to work, but would start having stress tests once a week until my due date.
The following week I went in for my first stress test. When I was done, the technician said I was having contractions about 8 minutes apart and was dilated 2cm. My doctor didn’t seem concerned, but I knew something was wrong.The next night I woke up with another bleed. This one was different. It came with clots and the bleeding was very heavy. We arrived at the hospital. I wasn’t even 30 weeks pregnant. The medical staff was unsure of what was going on but decided I needed to be medically transported to a larger hospital an hour and a half away. At this time my contractions were getting closer and the pain was intensifying. I was given steroids and magnesium. The ambulance ride was rough. About an hour into it the paramedic riding with me told me how scared he was because he had never delivered a baby! When we got to the hospital we were greeted with what seemed like hundreds of doctors. I was told all the risks and issues that come with delivering this early. They were prepping for a c-section when by a miracle my labor stopped. They wanted me to stay for 3 days to be monitored. They did many tests and never could tell what had caused me to bleed and go into labor. My husband and I were walking out of my hospital room after our 3 days, when all of a sudden my bleeding returned with a vengeance. By the time I got undressed and down to the surgery floor I was dilated to 4cm with constant contractions. A fast 23 minutes later, I was getting wheeled into surgery.
They were pulling doctors from the hall and into our room. I have never been so scared. The contractions had moved to constant pain. I was worried I would pass out from the pain before they could get my spinal meds in. In what seemed like a mad dash. The next thing I remember was my husband getting to hold my new HEALTHY baby next to my head. He was here and alive.
When first introducing solid foods to a baby, it is expected that there will be hilarious, camera-worthy moments of spitting and silly faces, maybe a mess to clean up. When first trying purees with our son, there were tears and gagging, screaming and hyperventilating. As a new mom, I didn’t know what to expect, but I knew this wasn’t “normal.”
For many reasons, I held off on introducing foods to Flynn until after the window of time typically recommended. I chose to strongly take his adjusted age into consideration to ensure that he was ready, but his muscle control was also very weak, meaning that he was unable to sit up on his own – even assisted. If you are unsure of what adjusted age means, a baby’s adjusted age is their chronological age minus the number of weeks that he/she was premature. For example, I waited to attempt solids until Flynn was almost ten months old, but because he was born twelve weeks early, his adjusted age was about six-and-a-half months. After talking to the pediatrician, I decided to start with pureed avocado and recline the seat in Flynn’s highchair to give him the best position for his current abilities.
Well, as I mentioned, it did not go well: there was choking, gagging, and turning blue. Unfortunately, but also luckily, it was not my first time having to spring into action and he ended up just fine. Scarred from the first incident, but optimistic that it was just a difficult transition, I tried again but the result was more of the same. I remember crying to my family, “It’s just not normal and I don’t know what do.”
The timing actually worked in our favor, because later that week, Flynn had an appointment to see his neonatologist. In our case, he has an appointment to follow up with her every three months, and I was able to speak with his doctor pretty immediately after the choking incidents. This is when I first heard of Early Intervention. Her suggestion was to get Flynn evaluated by the county to see if he qualified for services through this program, specifically physical therapy. Her thought was that strengthening his core muscles would aid in the areas of feeding.
Per the Centers for Disease Control and Prevention, Early Intervention is the term used to describe the services and supports that are available to babies and young children (under the age of three) with developmental delays and disabilities and their families. This may include speech therapy, physical therapy, and other types of services based on specific needs. These publicly funded programs are available in every state and territory and provide services for free or at reduced cost for any child who is eligible. Flynn’s journey with early intervention began with physical therapy, but we have since expanded to speech, occupational, feeding, and sensory processing therapies. Even though our days are always packed with activity, I am extremely grateful and feel very fortunate that our family has been given this help. Each service has helped Flynn significantly and I truly believe that starting with these sessions so young will positively impact his future.
As a parent, I wish that I had known more about Early Intervention sooner, especially being in the NICU. We heard a lot about activities that our son may not be able to do or things that he would not be capable of, but never how these things could be possible with specialists or how to get that help. I encourage everyone to be informed and ask questions, especially if they have concerns about their young children. We owe a lot of Flynn’s success to his amazing team of teachers, who have become such a huge part of our family. Every child deserves their best start, and this became possible for our family through the Early Intervention Program.
Difficult roads lead to beautiful destinations; I can say that now, a year and a half later. Our NICU journey is entirely different from anyone’s I have ever met. My husband and I live in a small town on the western side of North Dakota. Our town has a critical access hospital, that is great, I mean I work in the ER there as a nurse, but one thing it does not have is a NICU. It was a beautiful summer day in August, my husband and I were winding down all the busy summer plans and just enjoying the fact that our daughter would be with us in about six weeks. We planned to finish all of our nursery and household projects before she came, being that we just moved into a new house in May. Summer is a busy season for my husband’s job, and we had four weddings that summer. Like most pregnant ladies in the summer, I was trying to stay cool and enjoy mocktails.
It was Friday night, and I was woken up with vomiting and a headache. I was very familiar with vomiting; it was like my second job from week 5 to week 17 of pregnancy. I just wrote it off and tried to rest. In the morning, it just hadn’t stopped, and I started just to feel worse. I had not had a headache like this before. I went to the hospital to be seen by my OB and get a bag of IV fluids.
When they took my vital signs, my blood pressure was 185/100. They asked me if I had ever had a high reading and I hadn’t. I just had an appointment two weeks before where my blood pressure was 110/65. Like any good nurse, she changed cuffs, machines, arms and my blood pressure was high again. The doctor came in and said that they going to try some high blood pressure meds in the IV and see where it is. My blood pressure didn’t go down, it went up. She then explained to me that my blood pressure was rising and I was too sick to stay at our hospital. This was a line I was very familiar with, I’ve told many patients that before. I couldn’t go to the next bigger hospital with a NICU because I was too sick therefore I was being sent to a hospital 4 hours away. Oh, and I had to be flown there. Another line I was very familiar with telling patients.
There were so many things running through my head when this was happening. I was 33 weeks and 2 days pregnant, I couldn’t have my baby yet, we didn’t even have sheets on the crib. I asked myself if this was my fault. I am a working mom who runs around the busy ER all day, it has to be my fault. I am already messing up as a mom, and I am not even one yet. Then I thought, my husband, he’s got to be thinking somehow it’s his fault. Then I thought, wait, I am the medical person in the family, how am I going to explain this, so everyone understands. It’s my job to explain the diagnoses and treatment plans. They don’t understand what severe pre-eclampsia means and what it could mean.
The looks on everyone’s face around me, they were scared. I was usually the one to comfort them in these situations. I thought about my parents that were in CA; my sister had JUST got her clean bill of health after having postpartum cardiomyopathy and how worried they must be. I didn’t realize how sick I was until everyone who knew what was going because they learned it in school (my co-workers that came to visit), looked at me like they were saying goodbye.
The doctors and nurses were able to get my blood pressure down in the bigger hospital. The day they were considering discharge, the headache came back. It felt like someone was banging my brain on my skull. I told the nurse about my headache, and my blood pressure was elevated again. My OB, the neonatologist, neonatology nurse practitioner, and nurses came in to explain to my husband and me that we were going to have the baby before something worse happened to me. They explained how she could have to be intubated, IVs, and how the NICU would work.
Early the next morning, our sweet 4 lb baby Avery arrived. I don’t remember the delivery. At one point, I know my blood pressure dropped as well as Avery’s heart rate. I remember the one nurse said, you’re going to c-section, or you’re going to need to push in the next few minutes. I knew I was only at a seven a few hours ago, so the whole pushing thing probably wasn’t going to happen. Avery’s little head was crowning, and there she was. She knew she needed to come out to save her momma’s life. The next hours were rough for me. I was on bed rest due to the magnesium drip and everyone got to see my baby but me.
My husband, her grandparents, aunts, and uncles, got to go introduce themselves to her. The only person she really hadn’t met was her mom. With lots of convincing and negotiating, the doctor and nurse finally allowed me to be wheeled in to meet her officially. I could only touch her tiny little body with my hand but it was the greatest moment ever. It was a short visit, but I got to meet my daughter.
Avery did great, no intubation, just oxygen, bili lights, and feeding tube. She was also closely watched because she had magnesium in her system. The doctors and nurses kept telling us how Mag babies are supposed to be extra sleepy, but our daughter is feisty. Days in the NICU weren’t always easy. It was four days until we were able to hold her and only one parent per day. Like many NICU babies, Avery had her ups and downs, not gaining weight, not passing her car seat test, and having spells of hypoxia and bradycardia. It is not always an easy journey when you take three steps forward one day and two steps back the next.
You do not know how much you love your pillow until you do not have it for 35 days. Avery was in the NICU for 30 days and we were there a few days before we had her. Lucky for us we were able to stay with my husband’s best friend, once I was discharged from the hospital. My husband and I did not go home at all. His work made it work, and I was on maternity leave. We bought a lot of new clothes, tried a lot of restaurants, and found a few new TV shows. Our days were scheduled around the times they rotated Avery, and rounds which then graduated to feedings. We tried to breastfeed when we could, but eventually, a bottle and formula was introduced for weight gain. Which yes, meant I exclusively pumped, but that’s another whole story.
The hardest part of being a NICU mom is leaving your baby at the hospital every night. Thank the lord for the great NICU nurses, or I don’t think I would have ever left. A lot of new moms do not get sleep because they are up with their baby. NICU moms don’t sleep because they are up waiting for the phone to ring that something happened and they need to come to the hospital or having to pump to get their milk supply. Being 4 hours away from home wasn’t ever easy. However, it did always feel like we were visiting, so I always told myself, this is temporary. Having a NICU baby gives you the strength that you did not know you had. Lean on those around you, sit with your baby, read them a book, be around them as much as you can, there’s no one stopping you. On the tough days, I would go on Pinterest and read myself inspirational quotes and look at other NICU babies and their stories or look up #NICU on Instagram. That is how I found Graham’s Foundation and had their support. It helped me to see real people and babies that were able to get through this tough time. Find strength in other’s experiences. And just know that one day your 4 lb preemie is going to be an 18-month-old toddler yelling at you for their bottle and trying to jump off the couch.
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