NICU Stories

“My son Enoch was born at 34 weeks gestation with a 10% survival rate. He was born in end stage renal failure. He has been battling kidney disease his entire life. Enoch has spent 124 days in the NICU. Enoch has bilateral multicystic dysplastic kidney disease and from the severity of the kidney disease his bladder never formed; it is called bladder agenesis. Enoch will be on continous renal dialysis until he's big enough for a kidney transplant around age 2 or 3. After his life-saving transplant Enoch will undergo bladder reconstruction where the surgeon and urologist will make him a bladder. We will be in the hospital with Enoch for at least his entire first year of life.”

Bilateral multicystic dysplastic kidney (MCDK) occurs in about 1 in 10,000 live births. MCDK is a condition where fluid-filled cysts replace healthy kidney tissue and can occur in one or both kidneys. Bilateral MCDK is incompatible with life and can cause stillbirth or death shortly after birth. This is because the kidneys can’t make urine, which adds to the amniotic fluid that’s necessary for the baby’s lungs to grow. Without enough amniotic fluid, a baby can have serious breathing problems at birth. 

Bladder agenesis is a rare congenital condition that occurs when the bladder is completely absent. It is primarily observed in postmortem dissections of stillbirths rather than live births. Bladder agenesis is seldom compatible with life. Only 64 cases have been reported worldwide. Only 25 live births have been reported, as the condition is usually associated with other severe malformations that are incompatible with life."

Enoch's mom

"Houston was born when i was 25 weeks pregnant. He had a shortage in the umbilical chord. He wasn't getting the proper nutrition or oxygen because of this. This caused him to be delivered emergency c-section. He was born 08/14/2015. He weighted 1 pound 3 ounces at birth. Houston lived 4 1/2 months in the Neonatal Intensive Care Unit (NICU). Houston fought infections, illnesses, surgeries, etc. Houston fought hard to be with us, however he gained his angel wings 01/05/2016. 

Being in the NICU was physically, financially, and emotionally hard. We practically lived in the hospital. this is how we formed Houston's Lift Off. We are based in Canton, Ohio. Houston's Lift Off has been established since April of 2020. We have served over 889 NICU families. Houston's Lift Off provides items such as gas gift cards, food gift cards, baby books, baby blankets, hygiene items, catered meals, etc. We try to help with anything that a NICU family may need. Our mission is to show the NICU families they are not alone. Our ending goal is to offer public housing for these families. 

Ashley, NICU mom

"“My journey has been long. My son had an identical twin brother, who passed 5/9/2024, as a result of a laser surgery to disconnect him and his brother, Walter who is currently in Continuing Care Nursery. My babies were diagnosed with Twin-to-Twin syndrome around week 23. The donor Twin, Wesley was over sharing amniotic fluid. Walter had to be delivered early, due to having too much fluid on his stomach. Walter has been doing incredibly well in the NICU/CCN. He is gaining weight every week and now taking a bottle a pacifier”

Tiffanie, NICU mom

"Have you ever experienced a fast-tracked pregnancy journey? Imagine being given a due date, only to find yourself in labor while at work at just 5 months pregnant. This was the unexpected course of events for Rj, who decided to make his grand entrance into the world at 22 weeks. Born breech with preterm labor and ruptured membranes, Rj weighed a mere 1lb 5oz at birth and was immediately placed on a ventilator.

Over the next 90 days, Rj made remarkable progress on the ventilator before transitioning to the CPAP machine. The journey from alarms blaring to witnessing your baby move from an incubator to an open crib is a testament to resilience. While spending holidays in the NICU instead of traditional family gatherings, the support of loved ones becomes even more cherished.

Assigned a compassionate social worker, I explored avenues like The Skylar Project, a remarkable non-profit organization. From sharing my story with the director to receiving ongoing support, their resources, care packages, and financial assistance were invaluable.

After 264 days in the NICU, Rj finally came home with just 1 L of oxygen, a true Christmas gift for our family. Graduating from the NICU lifted a weight off our shoulders, filled us with pride, and reinforced the belief that patience and prayers can conquer any challenge. At 16 months old (adjusted to 1 year), Rj stands as a testament to the power of faith and miracles. Trust in God's plan has shown us that anything is achievable.!"

-Jernisha, NICU mom

"Kaylie first started to realize something was wrong 24 weeks Pregnant when her hands, feet, and face started to swell up. However, we did not think much of it because we figured it was a typical pregnancy symptom. The first symptom of swelling occurred on Sunday night just in the fingers and eyes. On Tuesday her legs had progressed to a swelling above the knees and were extremely puffy. Luckily Kaylie decided to take her blood pressure at clinicals on Wednesday and it happened to be high for her (141/85) when her normal was rather low (100/60). She called her nurse at St. Vincent’s, and she told her "You need to go to the O.B.E.D and tell them everything you told me" (O.B.E.D maternity emergency room). Shortly after arriving they diagnosed Kaylie with Severe pre-eclampsia and told her that she would be having an extended hospital stay to try to get Weston to at least 34 weeks, keep in mind we were only 24 weeks and 4 days. When in the O.B.E.D. They checked her BP, and it was now 156/84, continuously checking every 10 minutes. It reached 185/91 when they pushed blood pressure medicine through the IV. They had attempted 3 times before a successful IV stick busting a vein and bruising two other spots. When moved to triage they started magnesium sulfate (to help prevent seizures) and gave her a steroid shot in her glute to help our baby's lungs. She was then swabbed to check for any infection down below to make sure if and when the baby was delivered there were no infections. When all was done, she was moved to her actual room where she was monitored for 24 hours. The Nurses made Kaylie do a 24-hour urine test to check for protein and continued to monitor her oxygen, pulse, blood pressure, and baby’s heart rate. Friday she was taken off continued monitoring and was free to move around. Kaylie had woken up from her sleep with terrible pain in her abdomen, and blood pressure in the 160s over 80s so they gave her a dose of IV BP meds and it kept going up, they ended up giving her four more doses. Even after the four doses it was now 210/100 when nurses and doctors decided to deliver because if it wasn't placental separation, she was going to have an eclectic seizure. They inserted a catheter and a new IV for more magnesium sulfate. At 4:45 am Saturday she was wheeled to the OR they prepared her for delivery and made the first cut at 5:11 am he was out by 5:15 am. He was 640 grams or 1lb 6.6oz and 11 inches long. Weston made the sweetest small cry proving to be a good sign. The nurses and doctors joked about how feisty he was. After he got to the NICU, I (Weston's daddy Jake) got to be the first person to touch him because Dr. Bruce said he needed his dad’s bacteria. It was one of the most exciting times in my life, you can tell by the ear-to-ear smile I had in pictures! At first, Weston was only on nasal oxygen, they told us it was his honeymoon stage. Which we understood but did not know the extent it was going to go to. Two days later he was put on a conventional ventilator and only getting nutrition through IV fluids. Shortly after that, they started to put Weston on 1.5mL feeds of moms breastmilk every 3 hours. They were doing brain scans and lung x-rays daily for Weston's first week, he made it through all his brain scans with flying colors, NO BRAIN BLEEDS!!! However, the lung X-rays were a different story every time we asked or were told about his lungs the answer was the same, "they are terrible". We did not really know how to take this news over and over, but we just kept trying to stay strong for our little man because we knew that was the best way we could help him. He gets blood gases every day and they must prick the heel of his little foot to see what his pH, hematocrit, and carbon dioxide levels are. If Weston is having a bad day they can take multiple. They were gradually upping his feeds and trying to slowly turn down his vent settings until little man got a bad MRSA infection in his blood and lungs. This ended up causing him to go on the oscillator (which is a vent that gives about 600 small breaths per minute to keep their lungs open). They tried him on multiple anti biotics when they finally found the one that worked, they kept him on a month course of it. He is now, after battling MRSA, on a regular vent which nitric helped with when transferred hospitals and his feeds are 22.5ml per three hours. He has had six blood transfusions, several brain scans, tummy and heart ultrasounds, several IVs, many new vent tubes, he has a picc line currently for his anti-biotics, and he’s been sedated all in his first month and two weeks of life. Today He is six weeks old and weighs 2lb 14oz and is eating good and is very active. We take it day by day but recently everyday is better. He is now working his way off this ventilator and towards nasal! We couldn’t be prouder of our baby. If you are currently/were nicu parents, we are more than proud of y’all and your little babies!"

-Jake, NICU dad