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.

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