Experiencing the NICU as a Mama

Having a baby in the NICU can be traumatic. It is a rollercoaster of emotions, and more than ever, a mama will need to lean into their Air Force community during this time. Our hope with sharing these stories of fellow WAF mamas, we can empower and encourage another family going through this now or in the future.

MARGOT’S STORY

It all started at the 20 week anatomy scan. They said, “your baby has a flattened facial profile, but no need to worry, we are going to send you to a specialist”. My head was spinning, “What does this mean?”; “Are they sure I don’t have to worry?”; “It must be worrisome enough to see a specialist right?”. My husband was not able to come to the anatomy scan due to training, so my sweet WAF friend came with me. What a blessing to have someone advocating for me and asking the midwife questions when I had a difficult time processing the situation. I went home and started googling and found a plethora of possible diagnoses (all of which were incredibly overwhelming). We all experience the google black hole every now and then, but when pregnant, it gives you no real answers while raising your blood pressure and increasing anxiety.

We finally got in to see the Maternal Fetal Specialist. He was a kind doctor who asked us if we picked a name for our daughter before he went into the list of possible medical scenarios. We told him that we lovingly picked the name Ruth for our little girl and we were excited to meet her, but we couldn’t help but brace ourselves for what he was going to say. He explained a lot of medical issues that our little girl could experience due to a possible chromosomal disorder. We then saw a genetic counselor and were told that we could do a blood test or have an amniocentesis to see if our daughter might have a chromosomal disorder. The testing is not exact and could possibly harm Ruth, so we decided to forgo additional tests. It was the most vulnerable and out of control we felt through the entire pregnancy, but once we landed on the fact that our little girl was fearfully and wonderfully made just for us, we moved forward with the resolve to love her and care for her the best we possibly could. We continued monthly sonograms to make sure Ruth’s heart, lungs, and kidneys were functioning normally. While my husband and I agonized over each appointment and the uncertainty of what our little girl might go through, it was freeing to accept that the only thing we could control was our love and advocacy for our sweet Ruth.

On the 40th week of pregnancy, I was induced due to my large amount of amniotic fluid (polyhydramnios) and Ruth’s less than stellar heart rhythms. It was out of an abundance of caution. I made sure to tell all nurses and midwives, as well as, write in my birth plan that I was concerned about possible medical issues that might arise during and after birth. This was my first experience with truly advocating for Ruth. Ruth was born at 4:30am after a couple of days of induction. They handed her to me and I could hear something was wrong with her breathing. She wasn’t getting air through her nose. I handed her right back and said something was wrong. The sweet nurses worked with her for 45 minutes before they had to wheel her into the NICU to put her on a ventilator. Later, they told me that they tried their best to keep her in the room with me, but had to make the call to send her to the NICU. I was comforted by the fact that many nurses and doctors were making sure Ruth was well taken care of..

They transferred my husband and me to the “babies and mothers” room. A couple of hours later, they brought up a medical grade pump and gave me a quick tutorial. I am so grateful for that lactation consultant. It was crucial that I start pumping right then so my milk would eventually come in. Breastfeeding was not an option, so I focused on what I could control…pumping. An hour after that, the neonatologist came in and explained that Ruth’s nasal passages were not allowing air to pass and she was not breathing through her mouth (a small amount of babies do not breathe through their mouths until about 6 months to a year old). He told us that they were going to transfer her to Children’s Hospital of Philadelphia (CHOP) in an ambulance. They wheeled me up to see her and watch the transfer, while my husband grabbed his bag so he could ride in the ambulance with her to CHOP. Watching them transfer her was so scary. It felt like it took forever and she continued to “desat” (desaturation of oxygen) which was announced by the constant beeping of the monitor. They set up her breathing tube in a portable medical unit and then my husband and baby were whisked away. I was then wheeled back to the room, but all the nurses were not aware of my situation, so they came in perplexed that my baby was not there. I then had to explain my situation multiple times which was painful (this is the importance of consistency through medical care; I do not fault them, just the communication system). I had to stay in the hospital at least another day, but I had to keep telling myself that I was staying there so that I would be healthy enough to take care of Ruth when I got to her. My husband told me about special webcams that were set up by the bedside so I could look at her and use it to pump (If you are not around your baby and pumping, it is helpful to look at pictures/video of them to produce more milk). My mom flew in to stay with me in my room that night and my WAF friends came to keep me company. Without them, those agonizing 24 hours would have been difficult to bear.

The next day, the nurses tried to discharge me as soon as possible, but it was still late afternoon before I was released to travel to CHOP. My husband spent the night in a sleep unit they had there, but it is only built for a temporary stay (1 or 2 nights), so we had to get a hotel room about 10 minutes from the hospital. The first week Ruth was at CHOP was filled with Geneticists, Plastic Surgeons, and ENTs coming by to assess Ruth. Nobody gave us answers, but we thought it would just be a matter of time before Ruth got a quick surgery to open up her nose. We were very wrong. There was no surgery they could do. We stayed in the NICU for 38 days. Week after week, the Plastic Surgeons said ENT should take the case and ENT said Plastic’s should take the case. Overall, we got great care from the nurses and neonatologists, but no one had seen a case like this, so it left the specialists stumped and we had little hope for treatment.

As you know, paternity leave for spouses has been extended (3 weeks), but it may not cover a NICU stay. My husband talked to his Squadron Commander and they worked it out so that he could stay with us the entire NICU stay (let’s just say, my husband’s hair and beard/mustache were way out of regs). When in doubt, ask for help. Granted, the Commander was incredibly compassionate and worked hard to accommodate my husband’s absence. I know this is not everyone’s experience, but it never hurts to ask for as much help as you need. Bonding is difficult in the NICU, but there is something special about a Daddy bonding with his baby in the most unique way. Also, mommas need extra help between pumping, talking to the nurses, grabbing a bite to eat while not wanting to miss a doc coming around (you can’t eat in the rooms and they never tell you when specialists are coming by, so you have to have someone running interference for you). My husband made things much more bearable, and when I ended up with horrible mastitis that put me up in the hospital for a night, he was still able to visit Ruth. It was one of the most trying things we ever experienced, so having each other to lean on was crucial to our mental, physical, and emotional health. If a spouse can’t be there, it is important to call a friend or family member (hopefully COVID restrictions have waned). Everyone needs someone in their corner.

Ruth was extubated (took out the breathing tube) after 11 days. One of the plastic surgeons placed a nasopharyngeal airway (NPA) in her right nostril to open up passage for airflow. It was a grueling 24 hours while we took turns listening to her raspy breaths. Breathing tubes cause inflammation in the throat, so we were worried that Ruth would have to be intubated again due to this swelling, and then we would start all over again. After that 24 hours, things were getting better with steroids and it finally felt like we were making progress. Progress is a weird word in the NICU. Progress looks like one step forward and two steps back. Before Ruth was extubated, she had a sepsis workup due to a slight fever (this is protocol for babies under the age of 28 days). They complete a urine culture (using a catheter), lung secretions culture (due to the breathing tube), blood culture, and lumbar puncture (the most painful of all the tests). Thankfully, they came back negative, but she began to have a very high heart rate (how babies show they are in pain) until a day later, they realized her breathing tube was in too far (by a centimeter). That was the “progress” we made to get to extubation day.

After extubation, Ruth did well with the NPA in her nose. We finally felt like we could do more to take care of her. While she was intubated, we held her only once, but it caused too much anxiety because she would always destat and at least two nurses had to position her with the tubing etc. We couldn’t move her head, so the nurses helped us put her in an outfit, but options were limited with tubes and IVs. When she was extubated, we started asking the nurses more questions and asking if we could help with temperature checks, diaper changes, baths, and deep suctioning (the NPA required suctioning to keep it open for breathing). After 8 days, Ruth ripped out the NPA. We found it had clogged and she pulled it out in order to breathe. After this, the nurses and docs decided that we would leave the NPA out to see if her nasal passage stayed open. After 3 days without her NPA, she began to struggle with her breathing by pulling in her lips and crying due to “air hunger”. They had to reinsert the NPA, but they cut it too long and she spent the whole night in pain (heavy pain meds are usually given to babies when they are not sure what is wrong and the heart rates are hight). The next day they realized they cut it too long, so they fixed it. Progress. After rounds (when the docs come around each day and give an update on your child), we all decided that we would keep the NPA in as long as we could while they would train us to put it in and send us home with all the materials. Ruth had other plans…she kept pulling it out, so my husband and I started researching ways to keep the NPA in. I found an article from Ireland that gave picture examples of how we could use taping and sutures (not sutured to the skin) to secure it. The docs helped us create the contraption and it worked! Progress. Just a few more days! Hold on, they needed to do a sleep study (monitor her breathing while she sleeps). Ok, that was fine, we were sure she would have no issues. She barely slept for the study while so many wires were connected to her head and the readings were less than reliable, but it showed she had some apnea (breaks in breathing). The catch was they couldn’t give her nasal cannulas for oxygen due to the NPA. We were so devastated. Two steps back. We just had to make it through the weekend (nothing happened during the weekends, so you had to wait for the main docs to return Monday for decisions to be made) and meet with pulmonologists that Monday. Monday came around and the pulmonologist approved the discharge home, but advised us to bring her back if we saw issues while she slept. Progress! We were so excited and awaited our Tuesday discharge. Tuesday came around, I placed the NPA (I was literally shaking I was so nervous), but we got to take Ruth home.

Going home felt amazing, but what awaited us was a slew of doc appointments, constant suctioning, and NPA replacements. At 8 months, Ruth pulled out her NPA even with the taping (landed us in the ER because she swallowed the taping on her face). We tried another “wait and see” with the NPA out, and thankfully, from then on her nasal passage stayed open by itself.

Advocating for your child is not easy. I want to offer the caveat that when we first came to the NICU, we had no idea how to advocate for Ruth, but as we moved forward and got to know the process, we could spout out medical terms and ask for what we thought she needed. Just to give you perspective, we saw 3 different plastic surgeons from 3 different hospitals because we felt like Ruth was not receiving the care she needed. We also saw two different ENTs from different hospitals who had no solutions or strategies for us moving forward. Wait and see was the name of the game. We finally landed on a Plastic Surgeon who sat us down and talked us through everything. He didn’t rush us, he acted like we were his only patients that day. He had his own practice, so his time was devoted to children with craniofacial abnormalities only. He was not affiliated with a big hospital which made it easy to get ahold of him and we knew Ruth was his focus. What a blessing it was to find him and stick with him until Ruth may need surgeries in the future. Advocating is a learning process, but it is the best thing you can do for you and your baby.

During my pregnancy, the days in the NICU, and 8 months of intensive care, it was my sweet bible study WAF friends that made the greatest impact on our journey. When we would meet for our bible study once a week, I would just spill my heart to them with the fears I had and the helplessness I felt. They prayed for me, they prayed for Ruth, and they assured me that I was chosen to be Ruth’s mom. My husband and I were chosen to be her parents and to love her through trials whether they are many or few. It was their encouragement that kept us going on days when we thought we didn’t have any strength left. Their care packages, meal vouchers, and visits were everything to us when we felt like the weight of the world was on our shoulders.

Whether you have or had a baby stay in the NICU for 2 hours or there was no discharge in sight, I just want to encourage you that you can do it. You may feel like you can’t, but surround yourself with others who can help you fight this battle. Here are some tips for WAFS and for loved ones that are battling in the NICU…

TIPS FOR WAFS WITH BABIES IN THE NICU

Move in – Whether your baby is only going to be in the NICU a couple of days or you are in it for the long haul…MOVE IN to your little pod. I mean, bring swaddles that you like and outfits that you want to put them in (when your Nurse says it’s OK), bring books that you can read to them, bring a comfortable change of clothes for yourself, and get a bulletin board to hang cards written to you or inspiring Bible verses or quotes you like.
Take a Load Off – If you show up to the NICU a day or two after giving birth, make sure your husband or someone else in the vicinity pushes you around in a wheelchair. You are recovering…let others help.
Bring Nursing/Pumping Friendly Clothes (or have others go shop for you) – My mom bought me a whole set of nursing clothes because I was exclusively pumping for Ruth and the hospital atmosphere is very little privacy! The clothes were convenient and made it easier for me to get dressed to go to the hospital and pump every day.
Take a Break – Get out of your baby’s hospital room for a little bit whether you go downstairs to the cafeteria or go outside for a stroll or a starbucks treat. The nurses are very capable of taking care of your baby even though your anxiety might be through the roof. Make sure they have your number and they can call if they need to.
Give Yourself Care and Grace– Most moms forget to care for themselves when they have a baby. We go into mom mode instinctively. This is important for all moms to take care of themselves, but it is so important in the NICU. They usually don’t allow food in the rooms or pods, but they do allow drinks, so make sure you take water with you. Take as many breaks as you need to get food, especially if you are nursing/pumping. Trauma and grief will take away your appetite, but the best thing you can do for your body and your baby is to eat and sleep. A lactation consultant told me that the best things to eat (even in the midst of grief) are soups and soft foods that you can swallow easily. Anything you can get down is helpful. Give yourself grace when you feel like you can’t take care of your baby the way you want to or you feel like the NICU is taking time and experiences with your baby away from you. These are normal feelings and they do not reflect on you as a mama.
Make Friends with other NICU Parents – It is scary, but go out of your way to say hi and introduce yourself to the parents across from you in your pod. We made some of our dearest friends there. No one will truly understand what you are going through except another NICU family. Our kiddos had completely different diagnoses and the length of stay was varied, but that didn’t stop us from creating a lifetime friendship. They offered us encouragement as well as tips and tricks to navigating NICU life.
Don’t Be Afraid to Ask Questions or Speak Up – You can get lost in all the medical terms and treatments, but I promise in time, you will learn how to understand and use these tools to help your child in and out of the NICU. ASK the nurses questions. They answer all of them even if you think it is a simple question. “Are babies supposed to do that or is this specific to my baby?” Yes, this is a question we typically asked. Machines and extra tools for monitoring normal baby functions made us a little more on edge, so sometimes certain behaviors were specific to our child, but others were common for newborns…AKA Periodic Breathing (look it up). When it comes to “speaking up”, just know that you know your child best (the nurses and docs may be great, but you are the one staring at your child all day and sometimes all night). Docs and Nurses should and will listen to your concerns. If they want to do tests, ask them why and how they will complete these tests. If you feel you are being railroaded by a surgeon or doctor, ask for a “family meeting”. This meeting requires the docs/surgeons to sit down with you and a social worker and hash out concerns, etc. You have the rights as the patient’s guardian to request these meetings and ultimately transfer your child to different care if you so choose. Make sure you talk with the social worker about your rights if you have questions.
PTSD – Remember, during your pregnancy, labor & delivery, and the NICU, you have been through trauma. You may experience flashbacks or debilitating anxiety. Know that these reactions are normal and may subside as you adjust out of the NICU, but if you feel as though it is disrupting your daily life, seek help from a professional and find a community that you can share your struggles with. These days, there are many online communities that are easy to access and provide anonymity if you so choose.
Ronald McDonald House – Talk to your social worker about staying close to the hospital at a Ronald McDonald House. This was our saving grace. It was free to stay there for as many nights as we needed (you can donate at the end, but they never expect you to do this), and they had a shuttle that took us and brought us back from the hospital. They had volunteer groups that cooked dinner every night and put it in leftover containers if you couldn’t make it for dinner. So many volunteers give their time and money to creating a home away from home for so many people. Note, there could be a waiting list, so talk to your social worker as soon as you can.

TIPS FOR WAFS WHEN YOU KNOW SOMEONE HAS A BABY IN THE NICU

Text or Send Cards (Don’t Expect an answer back) – We loved getting written cards and loving texts from friends, family, and our church. It helped us get through the long days. However, our emotional and physical state had been worn so thin, even sending a text response to those who were caring for us was draining. Your friend or family member that is waging battle alongside their little one in the NICU craves and appreciates your loving words of encouragement and sympathy, but they simply may not be able to express it by texting or writing you back.
Send Meal Vouchers for the Hospital Cafeteria or Gift Cards for Restaurants Nearby – There are already so many expenses with the baby’s care in the NICU that grabbing a bite to eat at the cafeteria every day can blow up one’s bank account. Remember, your friend or family member may not have a kitchen to cook food or create cheaper meal options. Hospital cafeterias price their food exorbitantly (even though they are the most convenient option for parents getting a 5 minute break to go eat). If you call the hospital, they may be able to direct you to the gift shop or other entity that provides parents with meal vouchers for the cafeteria. In addition, there may be sandwich shops or fast food restaurants close by for a treat outside of the hospital once and awhile. Gift cards are always a great gift (google some nearby places).
Send “Treats” – Make a care kit that includes snacks, hand sanitizer, hand lotion (due to the harshness of the hand sanitizer), small toiletries, and bottled water. Snacks were our saving grace when we didn’t have enough time to go get a bite to eat, but needed something quick. We kept our snacks in the patient food storage area and snuck in a snack when we had a chance. Include a little bit of chocolate or a starbucks gift card to give the parents a little pick me up during the day. We typically got a starbucks drink or some treat each day because it raised our spirits a little bit and gave us some renewed energy.
Send Books or Donate Books to the entire NICU Pod – Most of the time, if the baby is on a ventilator or just came back from surgery, parents cannot hold them. Giving them books to read to their little one passes the time and encourages bonding so that the baby can hear the parents’ and loved ones’ voices. If you are feeling generous, donate books to the whole pod (or section of patients and their families that may be across from or down from the baby you know). Pods are usually open so that nurses can go from bed to bed and watch more than one baby at a time. When we were in the NICU we appreciated a random act of kindness here and there from those donating books, giftcards, or toys to the babies.
Start a Meal Train – If your family or friends get to bring their baby home, remember that even though it may be months after birth, they need all of the help just like if they came back from the hospital 2 days after their baby was born. Start a meal train, drop off diapers, or run some errands for them (most likely, their cupboards and refrigerator will be bare, so they need some restocking).
No Visiting or Touching (unless prompted) – Know that your family or friends may love for you to come by and visit or hold the baby, but remember to respect their request if they are quarantining or are afraid for their child’s health (even outside of COVID). Many babies may be going home with oxygen or ventilators. These babies cannot afford to catch even the common cold, so like with any babies, make sure you allow the family to quarantine if they so choose. If they invite you over to visit and even hold the baby, make sure you wash your hands and don’t visit even if you have the slightest tickle in your throat.

*To the WAFS and friends that have lost babies in the NICU. You are loved, prayed for, and welcomed by the NICU community. We will grieve alongside you as you share the sweet but very difficult moments you had with your child there. We want to honor you and your child’s journey. Find community, reach out. To all NICU Mamas out there, your babies are cherished and so are you!

STEPHANIE’S STORY

*trigger warning* I had a fairly normal pregnancy starting out, morning nausea that made me throw up water – oh the joy, and every other fun item you don’t seem to hear about in your first pregnancy. Everything leading up to our anatomy scan was normal. Our OB office didn’t do anatomy scans so I was sent over to MFM. I learned that I had developed a chorioangioma placental tumor – a benign tumor in the placental lining. Once I had my follow up appointment with MFM, they told me that in most cases, the tumor grows slowly, if at all, and causes no issues with baby or delivery, but to be safe I’d be coming back for monthly growth scans. From November-January, the tumor grew from 3cm to around 7cm. At my January 13th appointment they told me I was going to be getting bumped up to weekly visits until my due date in mid April. However, I had been planning to go home to see my family in Colorado and my husbands family in Oklahoma for baby showers, and was advised that while it was growing – it was stable enough for me to travel and start once I got back at the beginning of February.

I flew out to Colorado and then to Oklahoma, but had noticed over the course of a week that I was feeling my daughter less and less. I called the midwife to get advice, and was told that she probably had moved and that was why I couldn’t feel her. The next morning I got ready and went to my baby shower. Following the baby shower, I was using the restroom and thought I lost my mucus plug, which I knew was not supposed to happen at 29 weeks. I went out to my husband and asked if he thought we should go to the emergency room. Neither of us knew the answer but decided to go. I checked into the middle of no where, Altus Oklahoma emergency room at 1:30pm feeling stupid because I could walk myself up to the labor and delivery floor.

I was hooked up for monitoring, and that’s when the pieces started to fall apart. The baby’s heart rate was dropping in and out, and I was contracting – she was in distress. The tumor had grown from 7cm to over 10cm in two short weeks and it had begun to take everything from my baby. Not 5 minutes later the doctor came back and said that we would be delivering now in an emergency c section and my daughter would be helicoptered to the University of Oklahoma NICU. It was like a scene from Greys Anatomy. People started swarming from what felt like no where, putting on surgical scrubs as I was wheeled down the hall to the OR and my sweet husband was left behind to stand behind a window to the operating room. My last memories are of the anesthesiologist saying that I would have to be knocked out or I would likely have a heart attack because my blood pressure had shot through the roof and the antiseptic being tossed onto my 29 week pregnant belly. My daughter Quinn Elise was born at 3:36pm weighing 3lbs, 11oz. She required four rounds of compressions to keep her heart beating after the tumor had required it to pump blood for her and it, was ventilated, and had lines placed for iv access through her umbilical opening. I was able to see her for 20 seconds after I woke up as the flight nurses rolled her past my hospital room door in a giant box on their way out of the hospital.

My husband kissed me goodbye and began the two and a half hour drive to Oklahoma City that night behind our daughter. With having no where to stay, he slept in a chair outside of her room while the doctors and nurses worked all night to save our baby. She stayed for 59 days in the NICU, and fought every day. She battled a bacterial blood infection, collapsed lungs, and everything else that comes with having been born 11 weeks early. My husband was able to stay with me for the first two weeks on Red Cross leave, but then had to return home. We opted to save his paternity leave for when we brought Quinn home so that we could settle into that life as a family. So for two months, he would come for a week, then be home for two.

Finally, on March 30, she was discharged with oxygen. Since then, she’s been cleared of any residual medical concerns, will have no impairments due to being born early, and will go on to live a healthy normal life.

STEPH’S ADVICE FOR THE NICU (DITTO TO MARGOT’S!)

Remember that it is okay to cry and not feel okay. It is okay to be scared. You don’t have to be the strongest person in the room – be there to love your baby.
Take time for yourself to recharge, you’re only human. I struggled to leave the hospital, especially because we were thousands of miles from home without feeling guilty. There is nothing guilty about removing yourself temporarily from that kind of environment.
Utilize the Red Cross emergency leave and maintain open communication with your chain of command. We were very lucky to have supportive leadership, and it made all the difference.
Make friends with the nurses. If your going to be spending every day there, you might as well have someone to talk to that can talk back. I found a fellow WAF who was and still is my lifeline.
Get to know your care team. While most practitioners will only be on your service temporarily, the NPs, respiratory therapists, nurses, etc will all have you multiple times. It’s easier to have difficult conversations about care plans if you’re more familiar with their styles.
Ask questions – if you don’t understand a term, or need clarification, don’t be afraid to ask them to explain it in more detail!
Remember on the hardest days – YOU are the baby’s parent. Even when you feel helpless because you can’t soothe them or feel useless because the nurses do everything in the beginning, always remember that this is your baby and they need YOU. Let them hear your voice by talking to them, singing, reading books, etc.
Bring fun things into the room to make it a little more personal! We had a sign with Quinn’s name as well as just some fun uplifting stuff we placed around the room.
Use your support. It’s easy to say “I’m fine” because maybe you do feel fine, but people will want to take care of you any way they can … let them. But, don’t be afraid to also ask for alone time – the nicu is exhausting and sometimes a glass of wine and binge watching Netflix is a good way to unwind.

ASHLEY’S STORY

Hey there! I’m Ashley, my husband and I have been married almost 10 years. We’ve been on this military adventure for just over 11 years. I love a good glass of wine, running, and cooking. We have two littles, Carson (4) and Jane (1.5), and two fur babies. Before kiddos I was a teacher, but currently I stay home wrangling our crazy crew. We just moved to Oklahoma from Texas and made the transition from active duty to guard.

My husband and I have always planned on growing our family through adoption. In spring of 2019, while stationed in Texas we felt the time was right and we began the adoption process. We became a “waiting family” in the fall. On November 4th, only a few weeks into waiting, we received an email about a tiny baby girl. She was born hours before at 30 weeks and 6 days in Florida weighing in at only 1 lb 13 oz. We told our agency that we would be interested in this little girl’s mother seeing our adoption “profile”, which is basically a scrapbook all about our family. For those who may not know, when mothers are seeking to place their child for adoption they are presented with profile books of all the families that could adopt their baby. They typically choose their adoptive family just based on these books, which is crazy and must be incredibly difficult, but that’s a story for another day! On November 8th we received a call that we had been chosen by this brave mama to be the parents to this precious little girl. We were ecstatic, terrified, overjoyed, and clueless all at the same time. That night my husband, 2 year old, and I began our trek from Texas to Florida with an absurd lack of information and yet a peace knowing that God would walk through us on this journey. We arrived at the hospital where our daughter Janie (at this time she was still “Baby Girl” on official medical records) was in the NICU, met our social worker, and had an interesting conversation with the staff attempting to explain that we would like to see our daughter who we had never met and no we aren’t technically her legal guardians, yet. Those first few days were some of the scariest of our lives. When we met Janie her whole body fit in hands. Her diapers were the size of a post it note, she was on oxygen, and had wires all over her body. There were a million questions that we couldn’t get answers for, not because the doctors weren’t knowledgeable or well equipped, but because really only time can tell with preemies. They have to run ALL the tests. Bloodwork, eye exams, scans, over and over and over. The waiting and the unknowns can be so hard and it’s easy to let your fear take over. We really had to lean into our faith and trust that Jane’s little life was in God’s hands. We knew that no matter what the days (and years) ahead held, that we were supposed to be there in that NICU loving on this sweet girl.

At times we felt like intruders as nurses, nurse practitioners, doctors, and therapists hovered around our daughter- who we had just met and only found out about days before. We weren’t allowed to hold her or touch her hardly at all the first couple weeks of her life because they had to keep her temperature regulated so that her body didn’t have to burn calories regulating itself.

My husband and I had to return home, get our toddler situated and prepare for bringing Janie home (eventually). I got back to our daughter as quickly as possible, but those days away from her were heart wrenching. I called the nurses every day to ask them about her and they always lovingly told me that she was fine and that I needed to focus on preparing to return full time to NICU life the following week. I landed back in Florida, alone this time, knowing that my husband and son were in the best of hands with my mother-in-law staying with them while I was away. For the rest of Janie’s 57 day NICU stay I spent all of my waking hours in her room, holding her and helping tend to her as often as I was allowed, reading articles and books about preemies when I couldn’t hold her, and developing the sweetest relationships with her incredible nurses. In those weeks, “our” nurses became like family. To this day I send them pictures and updates, and we have plans to visit each other in the near future. They loved on my daughter in a way I couldn’t. When I was scared to hold her tiny 2 lb body they comforted me and showed me how. When I struggled to bottle feed her at a mere 3 lbs they cuddled her and showed me how. When she had scary moments, and all the alarm bells were going off, they jumped into action. When I was exhausted and sleep deprived, they kicked me out and told me to get a nice hot meal and some rest. I never had to be worried about Janie when I wasn’t there because I knew she was in the best of hands.

Eventually, after many highs and lows, Janie hit 4 lbs, she was regulating her own temperature, taking full feeds, no longer having bradys (drop in heart rate), she passed all of her tests and the day came for her to be discharged. We were beyond excited to finally introduce her to big brother and bring her home but we were also terrified! The night she came home, which happened to be New Year’s Eve, I sat and stared at her sleeping for hours because I was worried she would stop breathing. Even though we’d brought home a newborn before, bringing home a preemie is a whole different experience! We were blessed that Janie came home without equipment or special medications, but we struggled with some fear and anxiety throughout her early months at home.

Jane had many follow up appointments with various specialists in the months after she was discharged but she was cleared by each and every one. We had occupational therapy and physical therapy every month until just recently. Now Jane is walking and chatting (in her own language) and she is even on the growth charts for her actual age, which is a big deal for a baby who was in the negative percentiles at birth! We are so blessed to be her parents and we thank God every day for her little life and His provision on this crazy journey.

TIPS FROM AN ADOPTIVE NICU MAMA:

*Margot and Stephanie had amazing tips! I’ll try not to repeat those. You wonderful mamas covered most of it, and I admire you both for surviving the NICU all while recovering from delivery. I truly cannot imagine.

It will be uncomfortable. It feels so strange walking into a hospital room and meeting your baby for the first time, but especially when they are in the NICU. Remember that the connection and bond with your baby will come, you probably won’t feel it right away. I think that goes for all adoptive parents, your bond with your baby will come just give it time. Be patient.
Ask ALL the questions, do your research, and don’t be afraid to speak your mind! You are the only advocate for your child, so step up and speak up for them. Adoptive parents you will be reminded that you are only legal guardians but this baby needs you, and God willing he/she will come home with you.
Post adoption anxiety and depression are real. Ask for and accept help, lean into your “village”. Adoption comes with its own set of trauma for you and your child, adding in the NICU intensifies the emotions and exhaustion.
Your baby’s care team is there for you! Request your favorite nurses again if you can, tell someone if you have a nurse that you would rather not see again (it doesn’t happen often but it can happen). Our NICU had comment cards that we could submit to give a special shout out to someone on the care team that you really appreciate. I tried to fill out at least one a week telling one of Jane’s nurses or specialists how amazing they are. It means a lot to them!
Stay on top of your agency. Make sure they are reaching out to birth mom/dad if you legally cannot. Get them to submit all ICPC (interstate adoption) paperwork they can so that you can go home as soon as your baby is discharged.
Education. Active duty adoptive parents have parental leave and other rights just like those who have a child biologically, make sure you are educated on those.
PRAY! If you are a praying person, pray out loud with your spouse, your baby, your friends and family, ask friends to pray over you and your child. I believe in the power of prayer and I cannot tell you how encouraged I was by our loved ones praying for us and our daughter.