Contact us

The story of Samuel, as told by his mom, Sara

Parent Sara

Samuel was born on January 4, 2018, at 25 weeks and 5 days’ gestation. He was born at 11:31 a.m. weighing 1 lb 4 oz. He has been a miracle from the beginning. As a couple who had struggled with miscarriages in the past, my husband and I thought we were “done” with having babies because we didn’t want to push our luck. I was 8 weeks along before we found out I was pregnant.

At 10 weeks, we did genetic testing solely to find out the gender; little did we know that our world was about to be changed forever. The results revealed that there was a high risk of Samuel having Down syndrome. The days and weeks that followed were very overwhelming for my husband and me. We went in for a 12-week ultrasound and were told by the physician that this was an unhealthy pregnancy and that there was no way our baby would make it. But in the ultrasound monitor all we could see was a baby kicking with a strong heartbeat, and we were never more confused than we were at that moment.

Thankfully, my OB referred us to a high-risk OB who was well-versed in pregnancies involving trisomy 21, the genetic mutation of babies with Down syndrome. Samuel was monitored closely. We made it to 20 weeks, and we even had a fetal echo done that showed no major heart defects, a huge plus for a baby with Down syndrome. We went in to see my OB at 23 weeks, and everything looked so good that the OB told us to come back in 4 weeks.

When I was just past 25 weeks pregnant, I noticed that Samuel was not moving as much. He was usually pretty active in the evenings. The following morning, I picked up a donut and some OJ, hoping that would perk him up. But it didn’t. I became more worried and drove myself to the OB. The next hours went by in a flash.

Samuel failed his BPP (biophysical profile) test, which showed almost no amniotic fluid present and low blood flow to the placenta. It was a miracle he was still alive. I was given fluids and my first steroid shot, but they needed to get him out. Samuel was born the following morning, eyes still fused shut and his skin translucent. It was the scariest thing I have ever seen. He was intubated right away. He ultimately spent 146 days in the NICU. He overcame respiratory failure, retinopathy of prematurity, and brain bleeds, and he received multiple blood transfusions.

samuel in NICU with mom.jpg

NICU Nutrition

I started pumping immediately after birth. In fact, I demanded my first pump be at his bedside. I continued on, and thankfully milk production was not an issue for me. But Samuel needed extra calories and nutrients because of the uphill battle he had in front of him. His medical team started fortifying his milk with Prolact+ H2MF®, the only fortifier made from 100% human milk, to give him more calories, protein, and fat, and eventually, they added Prolact CR®, a cream made from human milk, which gave him additional healthy fat to help him grow. I am so thankful that Samuel was able to receive an exclusive human milk diet because the tummies of babies born so early are so fragile. Thankfully, he never had necrotizing enterocolitis (NEC), a common and serious intestinal disease that preemies can get. He grew well on Prolacta products, so much so that I was actually sad when they had to stop giving them to him! Samuel weighed 8 lb 3 oz when he went home!

Advice to NICU Parents

  • On days you feel the worst, remember you are beautiful.
  • One days you feel exhausted both mentally and physically, remember you are amazing.
  • On days when you are not sure how much more you can take, look back to see how far you’ve come.
  • On days when you feel like you can’t handle another battle, look at your scars and be proud of the battles you’ve already won.
  • On days you feel alone, please know you never are.