So you have a preemie baby in the Neonatal Intensive Care Unit (NICU) and you are just wondering how you will survive the days ahead, or are you scared that your baby might not make it? Or you have been told by the doctors that due to some complications, your baby will have to be born early and you are just wondering how you are going to survive with a preemie baby in the NICU. You are not alone mama! There are a lot of women that have gone through what you are going/about to go through and came out stronger and better.
Each year, about 15 million babies are born too soon — over 500,000 in the United States alone (1 in 8 infants). A preterm birth is any birth less than 37 weeks, but many preemies are born well before this mark. These babies typically have health issues that require immediate care, extending their hospital stay sometimes months after their delivery date, as well as potential long-term health problems that can stay with them their whole lives…but, a lot of them make it out strong and healthy with no health challenges whatsoever.
Ima Carnelus had her son, Jaxson, at just 22 weeks gestation and for the next four months after his delivery, he was at the NICU fighting for his life. The little warrior, against all odds, survived the NICU days and was discharged a day before his expectant due date. It’s been six years now, and Jaxson is an happy healthy child.
BMD had a chat with the mom-of-two, Ima Carnelus and she gracefully shared her experience with us.
BMD: Who are you and what do you do?
Ima Carnelus: My name is Ima (E-Ma) I am a Wife, Mom of 2 and Entrepreneur. I own a Small Business and I also provide support for parents during and after their NICU journey via my personal blog.
BMD: How would you describe your first and second pregnancy?
Ima Carnelus: My first pregnancy with my son was a bit tumultuous. I was very sick with Hyperemesis gravidarum during my first trimester. I felt awful physically, I was in and out for Urgent Care being treated for dehydration, severe vomiting and nausea and weight loss due to not being able to keep food or liquids down. All of this made it hard to enjoy being pregnant. Once I started having better days, I then started having complications. So my first pregnancy overall was hard on me. I felt like I missed out on the beauty of pregnancy because of how sick and complicated things got.
My second pregnancy wasn’t easy either as I also had Hyperemesis gravidarum — and due to my first being a preemie, I was considered high risk and had many more appointments with my OB. Our goal was for me to carry full term so that meant close monitoring for me and the baby, as well as medical intervention (weekly shots and bi-weekly sonograms) In some ways being pregnant the second time around was more challenging mentally because of everything I knew going into it. I knew TOO much, and because of that it was hard to be settled at times. Once I got half way through my second trimester and into the third, I really began to enjoy certain parts of being pregnant. I feel like I was getting redemption for what had previously happened. Because of that overall I would describe my second pregnancy as a Marathon!
BMD: Is there something you experienced in the first pregnancy but didn’t experience in the second?
Ima Carnelus: The major thing would be pre-term labor and birth.
BMD: With your son, did you have any idea your baby would be born early?
Ima Carnelus: Initially no — my pre-term complications didn’t begin until I was 21 weeks pregnant. And honestly even at that point I didn’t think I would deliver early. It wasn’t until I was hospitalized the second time for having contractions that I was told he would be born early. Our goal was to make it to at least 24 weeks, however he ended up being born at 22 weeks 6 days.
BMD: What was your labor and birth experience like?
Ima Carnelus: With my son Jaxson, my labor and birth was scary. At the time of my admission to Labor and Delivery I was already 2.8cm dialated. With the help of medication, the Team was able to stop pre-term labor. I was on hospital bed rest for 4 days and stable. On the day he was born, I went into pre-term labor for the second time and the Medical team intervened to try and get it to stop again but it was too late. I labored for 10 hours unmedicated. Having labored for so long I went ahead and asked for an epidural. I was exhausted and the contractions were intense! Once the epidural was given to me, my sons heart rate went tacky (shot up) and in order to save him and give him a chance, I had to undergo an emergency c-section. Everything happened very quickly — the room filled with people and I was rushed to the OR with my husband running behind the stretcher putting on his scrubs. It was intense but I had pleaded with the Medical Team and primarily my OB (days prior) to save my son by ANY means necessary and the time had come. There was no turning back the decision was made. I knew the risk — they had told us if he was born before 24 weeks there was a 20% chance of survival. They told us he may be deformed, have severe delays, may never walk or talk or even have a “normal” life. But I was focused on the goal which was to give Jaxson a chance. As I gave my verbal consent to begin the c-section, nothing could change my mind. Even when asked, “are you sure you want to do this?” I confidently said SAVE MY SON, I DON’T CARE WHAT HAPPENS TO ME, JUST SAVE MY SON! My faith had never been that strong until that defining moment of bringing forth life. God had spoken to my heart in the days leading up to Jaxson’s premature arrival — He told me to trust Him! So, although the atmosphere was chaotic and future unknown, I was peaceful. Jaxson did not cry once he was born. He actually had to be resuscitated 3 times before being rushed away to the the NICU.
BMD: What were your thoughts when you saw your baby in the NICU or Special Care Nursery for the first time?
Ima Carnelus: My first reaction was just shock and awe…I didn’t see him in person until the following day. My husband showed me pictures and video after I woke up from the recovery room. I was a little out of it due to all of the meds so I needed time to come back to myself. When I first saw his picture I thought he was beautiful. He had a full head of hair and he was fully formed which amazed me. Looking back it feels like I was having an outer body experience. We were thrown into the NICU Life so quickly that there wasn’t much time to really feel. I literally just had to put on my big girl pants and go through it one day at a time. I went from being 22 weeks pregnant to becoming a Mom to a fragile 1lb 2.9oz baby boy. I honestly didn’t even know the magnitude of what we were about to endure.
BMD: How did things go in the NICU or Special Care Nursery for you and your baby?
Ima Carnelus: The NICU was a roller coaster for sure. The first few weeks were hard emotionally for my Husband and I. For me personally, I dealt with a lot of guilt and trying to process my role as a Mom. When your baby is in the NICU, there are many limitations on what you can do. In a lot of ways you feel inadequate of caring for your baby. My main focus was to gain as much knowledge as possible to be able to Advocate for him, pump, create a bond and heal from my c-section! As far as his health, he was the youngest, tiniest and most fragile baby in the NICU for a while. Because of his gestation (22 weeks) sometimes it felt like we were always battling with the Doctors. Long story short, they believed in Science and we believe(d) in Miracles. Every time they had something negative to say, God would allow Jaxson to soar past their doubts and prove them wrong. It was hard to go each day to visit and then have to leave him in the care of Nurses and Doctors who sometimes really just didn’t believe in our little miracle. Don’t get me wrong, they did their jobs and there were some great Nurses and RTs that were involved in Jaxson’s care. Over time we learned to adjust to this life and looked forward to bringing him home. He was in the NICU for 4 months and was discharged the day before his original due date.
BMD: What were the first days at home like? For you, your baby, your family?
Ima Carnelus: The first few days home was exciting and terrifying! It was definitely a humbling experience to have Jaxson home with us. We were so blessed to have him healthy enough to bring home from the Hospital. It was truly one of the best day’s ever! The first few days weren’t picture perfect as we had to find our rhythm. Because he came home the day before his original due date — he was 40 weeks gestation aka, a Newborn in his adjusted age and 4 months was his actual age. Most preemies act like their adjusted age until they get older and have a chance to “catch up” on their milestones. Jaxson came home on a small amount of oxygen, a monitor that tracked his heart rate and oxygen saturation’s, and 4 medications that had to be administered several times throughout the day. Prior to his discharge we had a 2 day crash course on how to take care of him medically. So we had to find the balance of being his loving parents, while also providing the medical support he needed. And he also had to adjust to his new environment. For the first 4 months of his life he lived in the NICU which was pretty active compared to being home with just me and my husband — so it took time for us to find what worked for him to feel comfortable at home. We are delirious and exhausted but so thankful that he was home and we could finally start the next Chapter as a family.
BMD: Tell us about a particular memory that comes to mind when you remember those early weeks together. (either in the hospital or after you came home)
Ima Carnelus: On the day we were preparing to leave the NICU, I asked one of the Neonatologist how long he thought Jaxson would need to be on oxygen. He coldly said “probably up to 2 years!” I guess he thought that would discourage me but it didn’t. I knew Jaxson was strong and would be fine. The amount he was on was small. All he needed was love, support and nurturing which we knew he was going to continue receiving at home. Fast forward 6 months — Jaxson and I went to the Medical Supply company to turn in all of the oxygen support and monitor we had been using for 6 months at home. That day was such a pivotal moment for us. it meant that he was healthy and finally strong enough to breathe without any type of help. It meant that his lungs were finally strong on their own. All of our hard work to keep him healthy had paid off and he was showing us all that he truly was a Miracle.
BMD: What were the most challenging times of day for you then?…now?
Ima Carnelus: Once Jaxson came home from the NICU, it was a bit challenging managing his oxygen support, medicine, follow up appts. And still trying to nurture our marriage (we were newlyweds).
The challenges we face now are much different- life with 2 little ones who have very different needs (due to their different ages) can be a lot some days. I’m challenged with balancing all that God has blessed me. What gets me through and keeps me going is prayer and having support form my family and Mama tribe!
BMD: Looking back what was satisfying about the supports you received from early intervention providers? What do you wish could have been different?
Ima Carnelus: I was pleased that we were able to get support from EI to help Jaxson reach some of his milestones. He benefited the most from getting a Speech Therapy. I do wish that a child would be able to continue receiving services through EI past the age of 3 instead of forcing them to receive services through the school system once they turn 3.
BMD: Do you have any ongoing concerns about your child because of his premature birth or NICU or Special Care Nursery stay?
Ima Carnelus: We are currently dealing with him being developmentally delayed. Our biggest area of concern and what we are working on is his Speech. As far as his health, he’s been perfectly healthy since coming home which is such a blessing considering his early start. We definitely don’t take it for granted!
BMD: What tip/tricks would you give to a mom with child in the NICU?
Ima Carnelus: So many! But a few things I would tell them: Take things one day at a time. Ask questions, lots of them. Don’t be afraid to speak up if you are unsure of something that is being said or that you may not agree with. This is YOUR BABY! You are their biggest advocate and they are depending on you.
I would also tell a parent to have hope- despite what it may look like you have to have hope that your baby will be fine. Block out negative thoughts and really try to remain positive. I also think repacking out to others for support and asking them to share their experience is awesome. It provides perspective and encouragement. And lastly, take care of yourself. Mom/Dad may be burning the candle at both ends due this time, but it’s important to have some self-care. Don’t spend every second in the NICU, it will drive you crazy! It’s OK to take a break and take care of yourself. You can’t pour from an empty cup so it’s very important to fill yourself with what bring shout peace and joy.
So, here goes all the inspiration you need.