The Jones Family’s NICU Journey

This month we hear from Cassandra Jones, a two-time NICU momma willing to share her journeys weathering the NICU twice. While having previous NICU experience gives a parent the benefit of having some knowledge of the journey going in, it is never any easier to experience the event of being separated from your newborn baby and the loss of the birth and postpartum experience you hoped for.

Hi my name is Cassandra Jones, I am 30 years and married to the love of my life Justin! This is our non-typical NICU story! We are a blended family with 3 children between us. Ages 10, 9, and 7. We have been married for 5 years and from the beginning our kids have asked for a baby! Naturally we wanted to have a baby to complete our family. I’m going to go back 8 years to the story of my other daughter and her NICU journey and then I will fast forward. 

My daughter Sophie, age 7, was my miracle baby! At my 20 week ultrasound they found extra fluid on her brain and a hindbrain herniation. They suspected spina bifida. After being sent to Central Baptist to confirm the SB, abortion was suggested. I believe that God gives life and is the only one to take it away. I knew He had given me this child for a reason and I chose to love her no matter the outcome. I found an amazing brand new surgery that had just been published in the New England journal of medicine as a new standard of care surgery for Spina Bifida babies. I immediately went to Vanderbilt to see if I was a contender. At that time there were only 3 hospitals in the US that performed that life changing surgery! Vanderbilt had an amazing NICU so I chose to have the surgery there. I qualified for the surgery and at 22 weeks I had the surgery on my daughter to repair the hole in her back. This process involved me having a c section and the doctors bringing my uterus out on my stomach, opening it up, and then performing surgery on my daughters back while she was still in the womb. When finished, they sewed up my uterus and put in back into my stomach and I was on bed rest until delivery at 34weeks! At 22 years old and this being my first baby all of this was very scary and overwhelming. To get through mentally I just gave all my worries over to God and trusted His will to be done for this precious baby he had given me. I lost pretty much all my amniotic fluid after the in utero surgery. I was given IV fluids every other day for weeks but nothing would bring the fluid level up. After many weeks and no changes they decided that the baby would be better off in the NICU than inside of me and she was delivered at 34 weeks. Sophie weighed 5lbs exactly and was absolutely perfect aside from a few stitches in her back that hadn’t dissolved. She was in the NICU for 13 days and my experience there was amazing. The staff at Vanderbilt NICU was everything and then some! They explained everything to me every step of the way and encouraged me throughout the whole journey. She was my first and only baby and I was all in for her whatever she needed in the NICU even after I was discharged and she was still there. I was able to call and check on her through the night and feel reassured that she was in great hands until I could return the next morning. Being 6 weeks early Sophie had to intubated at first. Then she went down to nasal cannula with a NG tube. She had to learn to breathe on her own then eat and gain weight on her own. Each day felt like a week but at the same time each day was progress for Sophie and she was dis charged in under 2 weeks! I can still remember the smell of the soap that was in her room when I would wash my hands to hold her! After bringing her home the in utero surgery allowed her need for a shunt to be held off until 5 months old! She didn’t have another major surgery until 4 years old when she had a tethered cord with 2 tumors wrapped around it. It was a 6 hour surgery, again at Vandy. After that she had some nerve damage and had to start cathing on a regular basis. 

Now fast forward to present day. Sophie will be 8 this June and is doing amazing! She has a few special needs but when you look at her you would never even know she has spina bifida! 

When Sophie was 2 years old I remarried and found the love of my life that is the greatest husband and father that a girl could ever ask for! We discussed having children of our own but due to my in utero surgery with Sophie I had a high incision on my uterus that was very thin and fragile. After many prayers with my husband we decided to have a uterine repair done at Vandy to see if that area could be repaired and strengthened enough to hold another pregnancy. Thankfully that surgery was a success and we were given the green light to try for a baby. After 2 years of trying and struggling with irregular periods my doctor put me on Femara. My husband and I had been discussing not trying any further and adopting. We figured after 2 years maybe it wasn’t in the plan for us to have a child together. We decided to try through the end of July and then call it quits. July 4th, 2018 the morning after my 30th birthday we found out we were expecting! The joy we felt was indescribable! 

To be pregnant again after 8 years was a bit intimidating! It was considered a high risk pregnancy due to my uterine repair and the risk of rupture. As hard as I tried to not think about it I went the whole pregnancy feeling like a ticking time bomb. My doctor told me that the baby may have to be delivered early if my placenta planted itself on my scar. Thankfully it planted beside the scar and not on it and I did not rupture while pregnant. The biggest news came when we had the early testing done to see if this baby would have SB like her big sister. Thankfully the test came back negative! It also revealed we were having a girl!! The goal at this point was to go to 37 weeks so that my uterus wouldn’t contract and have a scheduled c section. The whole pregnancy I was told that if I made it to 37 weeks there wasn’t any reason why I would need to worry. And that my baby would most likely go home with me after 3 days in the hospital! 

February 18th, the big day was set! We had made it to 37 weeks! No rupture and a healthy baby! I just couldn’t believe it! I was so relieved that this was in a sense a “normal” pregnancy. We made plans for our kids to be home that Thursday(c section was schedule for Monday) with my mom so they could all be home at the same time to meet their sister. UK was shut down to anyone under 12 due to the high number of flu cases they were seeing. We told our kids that we would be home Thursday with their sister and they were so excited. Banners were made and friends were told in anticipation! 

The morning of my c section I was so excited that I was truly having a “normal” baby and delivery! I was going to get to leave the hospital like a regular person with my baby in tow! At 11:02am, Remi Ann Jones was born weighing 6lbs, 11oz and 18.5 inches long! She came out crying and it was the best sound I’d ever heard! I saw my beautiful girl (who looked just like her Daddy!!) I was in Heaven! Instant love! Then, everything fell apart. Just like that. Justin came back from the little side room where the pediatric team had been checking Remi out and he told me that she was having difficulty breathing and would need to go to the NICU. Before I had time to even process that I felt light headed, my blood pressure bottomed out, and everyone in the OR was scrambling. They made Justin leave the OR and all I could hear was the anesthesiologist saying “Mrs. Jones, stay with me Mrs. Jones!”. I could hear nurses on the phone requesting blood transfusions. I had ruptured. On the OR table, after all that time expecting it to happen while I was pregnant. I ruptured on the table while they were trying to sew me back up from my c section. Everything after that was a blur because for five hours post surgery they had me on the highest dose of pitocin, contracting my uterus to make sure there wasn’t anymore blood clots. 

Exactly 24 hours after delivery I was able to make the trip down via wheelchair to the NICU to meet our precious baby girl! We stopped at the check in desk and met the nicest receptionist who gave us our stickers that allowed us NICU entry. Walking through those double doors for the first time to meet Remi and being greeted by her sweet nurse is something that I will never forget! She was beautiful! I was used to all the wires, machines beeping, nurses talking. It was all familiar from my NICU time with Sophie. I felt like a NICU pro. Remi was on nasal cannula oxygen and I guessed that she wouldn’t stay in the NICU long at all! We stayed by her side and watched her little chest rise up and down. I was so thankful I hadn’t bleed out on the OR table. So thankful to be alive and there with our precious baby we prayed for for years! We met with her team of doctors the next morning and they said as long as she did good and weaned off the oxygen in the next few days she would go home by the end of the week (Friday). I was ok with that, only 1 day later than what we would originally stayed. Friday came and went and she had been losing weight. That’s normal so they said they would keep an eye out. Unfortunately her blood sugar levels were high (dehydrated) and her sodium was high. I was crushed that we wouldn’t be going home to our other kids that weekend who still hadn’t met their baby sister. Sophie is a Mommy’s girl and 5 days was already a long time to not see her Mommy. The weekend came and went and it seemed each morning when the team rounded that there was more bad news. We were told she didn’t know how to eat to fill herself and she was losing way too much weight. She also wasn’t able to maintain any of the levels they had discussed. The nurses had to prick her foot before every feeding to check blood sugar levels. She had her blood drawn every morning. The night nurse had to check her weight every night. We lived around every weight check and morning rounds that the doctor made. This was not supposed to be happening. We made it to 37 weeks! The postpartum emotions were more than I could handle. Every set back with Remi was devastating. Each call home to our kids was heartbreaking. They just wanted us home and we just didn’t have the answer to when that would be. My milk was late coming in due to losing half my bodies blood supply. I was pumping around the clock as well as nursing her. The lactation consultant was meeting with me every other day and giving me tips. I felt the weight of the world on me because Remi needed my milk to gain weight. Our 3 kids at home needed their Mom & Dad. My husband was missing over a week of work at this point to stay by my side.  And I was completely and utterly sleep deprived and exhausted! That Sunday (almost one week after delivery) I had one of our nurses, Julia, who we had had several times, come to me after I had a breakdown after meeting with Remi’s doctors. She was so gentle and encouraging. She helped me come back to reality and that told me everything would be ok. It was just what I needed to hear at that moment. She will never know how much I appreciate that. 

Nurse Julia was right. Things got better. I was a good Mom despite how I felt. Remi started to do better and after 9 days in the NICU her team of doctors cleared her to go home! We packed up that room so fast! 

UK’s NICU honestly took me by surprise, along with our whole journey! After being apart of Vandy’s NICU the bar was set pretty high. UK NICU was wonderful! The rooms, equipment, resources, all of it! I’m so thankful for our time there and all the nurses and doctors that were a part of our journey. A journey that I never expected to take me by surprise. However it did, just as life does and will continue to do. We are forever grateful for the NICU and everyone that puts their time into being a part of the NICU. All the way down to small things like having a washer and dryer in the family area to wash our clothes. All of it was greatly appreciated and forever an imprint on our hearts! 

A big thank you to Cassandra for sharing her stories and allowing us to show how vastly different each NICU experience can be, even in one family.

Self Care While on a NICU Journey

So you’ve found yourself at the doors to this place called the neonatal intensive care unit. The neonatal ICU. The NICU. Maybe this is your first time stepping (or being wheeled) through these doors, maybe its your second, maybe these doors seem more familiar to you lately than your own front door. Regardless, walking into or out of the NICU rarely comes without a landslide of emotions.

As you dive head first into life in the NICU, learning the sounds, machines, and terminology of this medical environment, learning your new baby and figuring out what bonding looks like in this setting, it is so easy to get caught up in aiming the focus solely on your baby and his or her health and needs. However, the most important thing you can do for your baby at this point is to make sure that you fully take care of yourself. There is nothing but truth in the saying, “you cannot pour from an empty cup.” Below are a few ways we’ve found to focus on caring for yourself while on your NICU journey:

  1. Dont forget your own BASIC NEEDS: sleep, eat, drink. Although the NICU diet isn’t a common diet fad you’ll find circulating the magazines, it consists of “slept a total of 3 hours last night (maybe), had a granola bar for breakfast, was going to eat lunch but got caught up at a care time, dinner was a bag of chips scarfed down in the parent lounge so I could get back, had a few sips of my water bottle today but sat it down and forgot about it” and some bonus points for “couldn’t get past my anxiety-induced stomach ache to deal with any food today.”   You WILL waste away if you are not intentionally providing for your own basic needs. And if you’re new to the NICU and trying to heal from birth or trying to establish/maintain a breastmilk supply, proper nourishment is crucial for your health. Keep a bag full of snacks you enjoy eating at the NICU, keep a water bottle close by and always full, and make sure you don’t skip meals.
  2. Recognize your grief for what it is and let yourself FEEL it. This likely wasn’t the birth you imagined, wanted, planned for, etc. It’s not how you imagined the hours, days, weeks after birth would look or feel. Maybe you’ve spent days in the hospital already, holding on as long as possible before giving birth to your baby to increase their health while your own declines, maybe you went in for a normal check up thinking you had weeks or months before you’d meet your baby only to end up unexpectedly meeting him or her hours later from outside a little glass box. Maybe you’re still waiting to hold your little one for the first time. The NICU is rarely planned for or hoped for when imagining a birth and when you find yourself there, IT IS OK TO GRIEVE THE BIRTH AND POSTPARTUM PERIOD YOU ALWAYS IMAGINED. It doesn’t mean you’re not thankful for your baby’s life, for the chance to get to take him or her home one day, that he or she is improving already. Don’t compare your journey to another’s and think its not ok to hurt or be sad or feel the feels because it could be worse. The thing is, it COULD be worse. But it could also be better. Allowing yourself to grieve and feel your emotions lets you deal with things as they come instead of stuffing it all down until you break.
  3. Do at least one thing for yourself that you enjoy each day without guilt. It doesn’t have to be extravagant. Read a book or magazine. Do yoga or some other exercise if that’s your thing. Journal. Go to a restaurant you love and eat a meal you enjoy. Take a nap. Take a shower even. Whatever you enjoy doing, do it. But, here’s the important (and maybe hardest) part, do it WITHOUT FEELING GUILTY. It is not anyone’s fault you and your baby are on this journey. It is still very much ok for you to feel happy and enjoy things outside of your baby.
  4. Spend time outside of the NICU. Momma, daddy, whoever you are in this journey, get out of there and catch your breath. Your baby is not where you long for them to be but they are in the safest place, surrounded by caretakers who generally care about their wellbeing as well. It is necessary for you to take some time for yourself. The NICU is overwhelming. It is full of alarms, unfamiliar medical equipment, medical professionals coming and going often, its full of the unknown. Studies have shown that it is a traumatic place for parents. It is absolutely important for you to allow yourself a break from the constant trauma. Take a walk outside on a nice day. Have coffee or dinner with your significant other or a friend or even alone. Spend a night in your own bed.
  5. Don’t be afraid to seek and accept help- from family, friends or a professional.  There is so much strength in recognizing you are overwhelmed, exhausted, and at a breaking point in your journey. Having a good support system when you are wading through life in the NICU can really make a difference in the experience. When family or friends offer specific help, accept it. Let them help ease the stress of meeting some of your basic needs like food or sleep. Let a close family member or friend to sit with your baby so you can take a break for a bit. Find a friend you know is a good listener (even better if you have one who has experienced the NICU before) to share your emotions, thoughts, fears, etc. with. Reach out to other parents in the NICU around you, create a community of peers who know exactly what you’re dealing with.   Its also important here to mention the increased risks of developing postpartum depression, anxiety and PTSD that having a baby in the NICU brings. If you begin to feel any of the signs or symptoms of these, speak to your OB or primary care doctor about ways to help care for yourself mentally. Whether it be through therapy or medication, there is nothing that indicates strength more than recognizing the need for help and seeking it out. Your baby needs a healthy (physically and mentally) parent just as much as they need a present one.

Giving birth is never a walk in the park. Giving birth unexpectedly, having a child prematurely, is the beginning of a rollercoaster ride. It’s that first big drop that drops your stomach and steals your breath and leaves you wondering if you’re going to lose your lunch. Sometimes it’s a quick, relatively smooth ride and other times its breaking records for world’s longest, bumpiest, twistiest rollercoaster. No matter what type of ride your on, it’s up to you to buckle your seat belt and hold on tight. So if you’re reading this and you’re in the middle of a wild coaster and not sure which way is up, take a deep breath friend. Ask yourself this, will you take a minute to fill up your cup so that you are full enough to continue pouring over into your sweet little one? That is the one thing you can control in this journey. Fill it up.

 

Written by: Lyndsey Lewis, Early Bird Foundation, Inc.

The King Family’s NICU Journey

Another month, another amazing story in the books! EBF is so thankful to the King family for sharing their story, but also for their desire to seek the support of others in their time of need. It is hard enough to realize the need for support when the trials are supposed to be over but to willingly seek it out is often another barrier to cross. We are so thankful for their bravery so that we can know them and pray for them! Here is the King’s NICU journey in their own words:

Hi my name is Lindsay, and I am married to the love of my life and my best friend Adam King. April 7th, 2017 is a day that I will never forget. It was more than the day that my son Ryland was born. This was a day that would forever change my life. Pregnancy and becoming a mother are things you hear about all the time, but what you don’t hear about are the things that could go wrong. 

November 18th, 2016 was the day I found out I was pregnant. Something that didn’t come easy for my husband and I. We tried for a little over a year and a half before we sought out help. I then found out I had PCOS and getting pregnant would be a little harder for us than it was for others, but with faith in God and having the best doctor by our side we knew eventually we would have the family we always hoped for.

Fast forward three months on medication to help us conceive we were shocked when we found out I was already 13 weeks pregnant. I also found out soon after that I had gestational diabetes. I was having to check my sugar four times a day. I also had to watch my diet very closely. Finally, I was moving into my third trimester. The main thing I prayed very hard for was a healthy full term baby. Once week 28 hit everything changed. It was flu season and everyone at work was sick so I felt like I was coming down with the flu as well. I came home from work feeling terrible so my husband mentioned checking my blood pressure since I was having quite a bit of swelling in my ankles. After checking my blood pressure, I was shocked to see that my blood pressure was very high. I knew I had a regular scheduled ultra sound appointment the next morning so I thought I would just take my medication and go to bed.

The next morning, we went to the doctor and I was still feeling terrible. After having the
ultrasound, we were rushed into a room and we automatically knew something wasn’t right. We met with our doctor where he told us that we needed to head on over to the hospital to run a few tests. This was our first child so we were scared to death what the outcome may be. After meeting with the high risk doctor we found out that I had Preeclampsia, a condition at the time I had never heard of. They monitored him and decided the best option was to be admitted and that they possibly may have to take the baby that night. They wanted to try to get two, 24 hour doses of steroid shots in before
delivery to help strengthen his lungs to give him a better chance at survival. Through the power of prayer, I made it two days for the steroid injections to run their course. I was also on magnesium which helped me survive the 2 days, but on the other hand wreaked havoc on my body.
At 2:00 PM on April 7th , 2017 I was taken in for an emergency c section. At 2:41 PM our 2 pound 14 inch sweet little Ryland Lee King was born. He was sent directly to the NICU. NICU? What is it? Whereis it? How long will he have to stay in there? When can I hold my baby? These were all the questions running through our minds. Everything was so overwhelming and we really couldn’t be excited that Ryland was here because we were so worried about his health.

I barely remember going into the NICU for the first time to visit my baby, but it was something that will stick with me forever. Seeing your child in an isolette hooked up to so many wires, monitors, machines, & fighting for his life is something you can never be prepared for. Ryland started out on the ventilator but was able to move down to a C-Pap after two days, later he eventually graduated to oxygen by nasal cannula. Day 7 in the NICU I was finally able to hold my baby boy for the first time. This was a day I had always dreamed about while not in these exact circumstances, but I was so very thankful
he was alive.42C16E53-EB2E-4013-8AB6-F770B6B9F8F0

The next day we found out that Ryland was septic and in need of a blood transfusion ASAP. Again we had to see our sweet boy continue to fight for his life. Over the next few days Ryland dropped down to 1 pound 10 ounces. I feel like this was our lowest point throughout our stay in the NICU. We went from getting to hold our child for the first time to getting told it may be a while before we could hold him again. Luckily 3 days later his health finally improved enough that Adam finally got to hold him for the first time.

The remainder of our NICU stay consisted of Ryland growing, gaining weight, learning to breathe on his own without oxygen, moving from the isolette to an open crib, learning to bottle feed rather than tube fed, to finally being unhooked from all machines and monitors. The only way that I can describe being in the NICU is a rollercoaster ride. One day you have a good day where you are on the highest of highs then the next you may have a setback which leads to the lowest of lows, but somehow we made it to our discharge day 53 days later.

Ryland was finally able to come home! As we loaded up our little 4 pound 10-ounce baby we
were finally able to breathe a sigh of relief. As we pulled out of the parking lot of Saint Joseph East Women’s Hospital we were overcome with tears of joy that we were finally able to bring our baby home. Telling our story is truly special but actually seeing his journey is truly witnessing a miracle from God who we continue to thank every day for such a blessing.

One of the main things I learned throughout this journey is that the NICU journey doesn’t stop at discharge. Once we were home I struggled with postpartum depression and placed a lot of blame on myself for all of the things my son had been through. I heard about Early Bird Foundation from one of the co-founders when she reached out to me. She told me that she thought I would benefit from participating in one of the support group meetings.

Early Bird Foundation has helped me meet a lot of great people who have been through the
same situation. It has helped me to be able to share my story and find different ways to cope with the after effects of the NICU stay. It definitely helped me to find out that I was not alone in these feelings. After nearly 2 years of being out of the NICU we are looking forward to Ryland’s 2nd Birthday. He is a happy, healthy, loving baby who we love to continue to watch learn and grow every day.

As always, please join us in a prayer for this family as they continue healing from their experience and moving forward with joy as their sweet child grows!

The Hastie Family’s NICU Journey

A new year means the beginning of a whole new group of NICU Family Stories! It is our hope that through the openness with which our families share the story of their unique journeys, we can help spread awareness of what life is like when you have a child in the NICU. It is always even more bittersweet when those stories come from dear friends of ours but it is so wonderful to be able to be a resource of hope and encouragement to them! This months story belongs to the Hastie Family!

My name is Kristin Hastie, I am 30 years old and I am married to my best friend. He has  been my biggest supporter through our journey of infertility, pregnancy and parenthood. I am so blessed God chose him for me.
We tried to have a child for over 3 years. We had 8-9 (can’t keep track) failed intrauterine insemination. One fresh IVF cycle (negative), a frozen embryo transfer (negative), a couple surgeries later we did another frozen embryo transplant and I got pregnant which ended at 7 weeks. As heartbroken as we were, we weren’t giving up. We decided to use our last embryo and I got pregnant again but only for 9 weeks. We felt defeated but kept believing and trusting that it would happen one day. With the help and support from our friends and family we decided to try IVF again from the start of the process because we were out of embryos. And to our surprise a month before we were going to start, WE GOT PREGNANT NATURALLY! It was truly the best moment of our lives.
My pregnancy was a little rough. I had a placental abruption at 25 weeks which landed me in the hospital for a while. Being on the magnesium drip and steroids helped a lot and I kept trucking on. Once I was released I had another bleeding episode at home just a few weeks later. Luckily I only had to stay one night in the hospital. The doctor told me if I bled again we would do an emergency c section! What do ya know….at 34w6d I bled again and my sweet baby boy was born on November 16, 2018 at 4:54am via emergency c section. I was heavily medicated so I didn’t get to see or hear him which to this day still makes me extremely sad.

He had to be admitted to the NICU right after he was born for multiple reasons. He had trouble breathing and he was jaundiced. I didn’t get to see him until that afternoon when they wheeled me down to the NICU in my hospital bed. He had wires all over him, a feeding tube, IVs etc. I immediately balled my eyes out because all I wanted was to hold my baby. If it weren’t for my wonderful friends who had experienced the NICU life already, I wouldn’t have been the strong mama I was. Their knowledge, experience and support really helped me get through this emotional time. 
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I am so thankful for my friends, family and the amazing doctors and nurses who watched over and prayed over my baby boy. He surpassed all expectations and was released from the NICU in only 5 short days weighing 4 lbs. 5 oz. We are so grateful for all the love and support we received in the hospital. It was truly an experience we will never forget. 

Thank you so much to Kristin for sharing her sweet family’s journey with us and our community of NICU families and NICU family supporters. It is a story of loss, hope, fear, courage, strength and, ultimately, love. Join us in praying over them as they continue their journey in life at home after the NICU.

The Covington Family’s NICU Journey

​​​​Kyndall Covington is the smallest baby ever born at UK. Her amazing story has been in the news and all over social media. She is a gorgeous healthy girl about to experience her first Christmas and do it at home with her family. She’s a true miracle and quite the little fighter! EBF wants to tell you another important story inside of her truly amazing story though. We want to share the story of HER FAMILY fighting alongside her, giving their all to make sure she felt their love even as their own hearts broke over and over. Read below as her mother, Tabitha, shares the story of the Covington family’s NICU journey!

My husband and I blended our families. He had two children and I had two children. We decided we needed an ours to add to yours and mine. Bobby, my husband was afraid to have another child because he had two boys and was worried we would have a girl. We prayed for a sweet baby and it was so easy getting pregnant. The first month off birth control we conceived our precious child. The pregnancy was easy as well, no morning sickness, I felt great.

I’m a labor and delivery nurse so I was very impatient to learn the sex. The doctor got me in early to reveal we were having a sweet little girl! Bobby was right. Little did we know; the girl part wouldn’t be half the terror.

At 18 weeks we had a blood test done, the Alpha Fetal Protein test. It tests for down syndrome and open spina bifida. My test results came back extremely high for the latter. This test often gives false positive, so I was assured by the doctor who called me with the results. She had a false positive with her daughter. It just required extra level 2 ultrasounds. They scheduled me for a level 2 ultrasound with the high-risk doctor. We had to wait two weeks for this appointment. The suspense built.

My husband assured me, along with everyone else, that our baby was going to be just fine. The day finally came for the high-risk ultrasound. Bobby went with me, both of us full of nerves. The ultrasound revealed that she didn’t have spina bifida and was measuring small, a week and a half behind. The high-risk doctor questioned my dates, but the dating ultrasound was only off by a couple of days. With these extremely high test results and her measuring small, the doctor was very concerned. My risk for preeclampsia and intrauterine growth restriction were very much increased. They would be monitoring me and sweet girl closely the remainder of the pregnancy.

Throughout my pregnancy I had dreams of delivering my baby. Every dream revealed a baby in the NICU. I never sensed any danger though. I always felt she was going to be just fine. My last dream was around 24 weeks pregnant. I dreamed I went for my ultrasound without my husband and received bad news. She hadn’t grown at all and things weren’t looking good. At 24.1 weeks my swelling in my legs increased greatly and my blood pressure was slightly elevated. I called my doctor the next morning and he felt like I needed to get into the office that day for an ultrasound. He was hoping with blood pressure medicine I could get ten more weeks along.

My blood pressure was even higher in the office. I was at work that day and my husband was at work as well and couldn’tbe there. The ultrasound showed she was measuring less than the fifth percentile. There also wasn’t any blood flow from my placenta to her. They diagnosed Absent End Diastolic Flow and were even seeing some reversed beats of blood flow. The high-risk doctor declared this an emergency and I needed to get to UK immediately to be admitted. Hopefully with medication to get my blood pressure under control, they could restore some blood flow.

I called my husband hysterically crying. He was an hour and thirty minutes away. He beat me to UK, he made the drive in 40 minutes. Things went fast once I got there. Her heart rate was dropping quite frequently. Being a labor and delivery nurse, I was afraid they were going to crash me to the OR. Things settled down, but according to doctors we would be delivering sooner rather than later. I felt like my world was crumbling.

​NICU doctors came in to discuss the plan of care for when our baby delivered. They informed us they wouldn’t want to do chest compressions on her tiny body, but they would if we wanted them too. They began telling us all the things we were up against delivering a baby this premature and this small. I felt like someone was stealing all the air from the room. When they left, my husband and I had to have the most candid conversation of our marriage, of our lives. We decided we wouldn’t have the doctors do chest compressions, we wouldn’t want to put her through that. As much as it hurt, we were fully prepared to let her go. That night we gave it to God. There was nothing more we could do. The control wasn’t in our hands. “For this child we prayed.”

​The next day the ultrasound showed the blood flow was worse. The doctors decided to deliver her emergently via c-section. Kyndall Ellis Covington was born on 4/5/18 at 12:36 pm weighing only a mere 360 grams, 12 ounces. I remember laying in the OR, typically a happy time, you are anxiously awaiting to hear your baby cry for the first time. There was no cry, it was extremely quiet. There was nothing to celebrate. Our baby’s life hung in the balance. I remember thinking she didn’t make it.

​When in recovery is when I met Dr. Patra for the first time. This is the woman I credit for saving Kyndall’s life. Her face was grim, she didn’t fill us with any false hope. She laid it on the line. Her odds of survival weren’t good. We would have to take it day by day, and many times we would need to take it moment by moment. The equipment was too small for her frail little body. The breathing tube was the smallest they make, and never use. The vent that she needed didn’t fit her breathing tube and the tube they were unable to suction. UK figured out how to adapt those things. I owe them my life for saving hers.

​I didn’t want to announce her birth. I wasn’t ready for people to ask questions. We may lose her, and I didn’t want to have to later announce her death. People began finding out anyway and the texts and calls began flooding in. What can we do is the biggest question I got. My response was always, just pray. That tiny little body would need all the prayers she could get. Modern medicine could only do so much.

​It was many hours before I was able to go meet her. My husband had been up there several times to see her. He took me up in a wheelchair, and in that moment and every moment leading up to that and every moment to follow, he became my rock. The nurse tells you to touch your baby for the first time and it’s the most terrifying thing you have ever done. You feel like your soft touch may break her. Every touch thereafter my baby would show me she knew me. Her heart rate would settle down, her oxygen saturation would increase. In her way she was saying, “I know you, you are my mom.”

​When you are told your child may not survive you are scared to fall in love too deeply. Everyday that passed and every obstacle Kyndall overcame, the nurses and doctors teach you it’s ok to love her, and in fact, she needed mine and my husband’s love more than we knew. Studies show that premature babies with involved parents have better outcomes. When we were told this, mine and my husband’s life changed. We vowed to do everything possible for Kyndall to live her best life.

​Being in the NICU, you experience every emotion known to man. Some you are ashamed of feeling and you isolate yourself even more. I was angry. Why would God put my child through this? I was fearful. I couldn’t stomach the thought of losing her. I felt guilty. The woman’s body is designed to carry a child, and my body failed me and Kyndall. The emotions I felt were endless. When people would tell me, “Well at least she is alive.” I wanted to scream. I didn’t need people that had never walked in my shoes, to tell me what to be thankful for. I was envious to see other pregnant woman sporting their big healthy nine-month pregnant bellies around. When I began to read other’s stories, I learned every emotion I was feeling was completely normal.

​Through this experience, we learned some things just simply don’t matter anymore, while other things matter more than anyone could every imagine. As parents we take for granted some of the simplest things. Your baby’s cry, holding your baby, dressing your baby, staying up with your baby all night. As a NICU parent you don’t experience these things for a long time. I didn’t hear Kyndall’s cry for the first 9 weeks of her life, I didn’t get to hold my baby until she was six weeks old.

​There are times you feel like you aren’t in control. Your child is laying there, and at times you don’t even feel like their parent. I’m here to tell you, you are your child’s biggest advocate. You are their voice. When I felt like this, the doctors and nurses always did an incredible job reassuring me, I was her mother and mothers know best.

​NICU life is the worst roller coaster ride you have ever been on. When you are on a high, you are flying high, and the lows are lowest of lows. Having four children at home, and one fighting for her life in a different city, there is nothing that can prepare you for that. Everyone just rolls with the punches. There are times you feel so torn. We were celebrating my child’s fifth birthday, meanwhile Kyndall was having a really bad day. My heart was being ripped down the middle. I couldn’t be there at her bedside, and it was a terrible feeling.

​I think the NICU gives you a little bit of PTSD. The entire 169 days of her NICU stay, I would jump when my phone rang. I would slightly hyperventilate if the caller ID said UK NICU. The middle of the night phone calls my heart would stop beating for a few seconds. Our girl, she was a feisty one. Thank God for that because that’s what got her through. Many times, the phone call was to inform us she had yet again pulled out her tube, and they had replaced it with no hiccups.

​When your child is living in the NICU, some days you are literally just trying to put one foot in front of the other. Breathe in, breathe out. The doctors would always say take it one day at a time. Sometimes to get myself through, I would just take it one minute at a time. Those long drives to Lexington, many days were spent reflecting and lots of tears. That long walk to parking garage, my heart broke over again and again. Everyday I left a piece of my heart in that NICU.

​While doing all of that, something amazing happens. Life goes on. Your baby grows every day. She gets stronger. They reach huge milestones. The nightmare that you think will never end, finally does. The doctor comes in one day and plans for discharge in a few days.

​WE ALL SURVIVED. The real MVP though is my sweet Kyndall Ellis. She endured so much. I believe she is destined to do something great in this world, but she already left her mark. The tiniest of souls can make the biggest of impacts. Kyndall Ellis Covington my wish for you, shoot for the stars baby girl. Our sweet miracle, “For this child we prayed.”

Kyndall will be nine months old in a few days. She is still on oxygen, but we are in the process of weening her down. She loves to be talked to and smiles frequently. Her eye doctor cleared us to come back in a year. Her eyes are doing great. She will require a hernia repair surgery in a few months. Other than that we have a healthy happy little girl! 

Join us in prayer for Kyndall and the Covington family as they continue to grow and heal from their NICU journey! We are so thankful for the amazing families willing to share the truths of their journey so that other families can read and gain strength from those who have gone before them!