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Mom wants all preemies to get human milk-based fortifiers like her twins did

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Diagnosed with TTTS

We found out we were expecting twins at 5 weeks along. The news came as a shock and we felt many emotions that day. We were excited but also very nervous. We would have 4 kids age 4 and under! But after having a history of miscarriage, the scariest thing was listening to our doctor give us a long list of complications that come with a twin pregnancy. Unable to think about anything else that week, I took to the web and educated myself about every complication we could possibly face. This potentially could have instilled more fear in me, but instead, I let it empower me with knowledge to help me be an active provider in the care of my babies.

One specific complication that I felt strongly about researching was Twin-to-Twin Transfusion Syndrome (TTTS). It happens in about 15% of pregnancies in which twins share a placenta (my twins did). I hoped that we would be lucky enough to avoid it, but at 17 weeks, our boys were diagnosed with TTTS. Baby B was transferring his blood supply to Baby A, and was essentially starved and dehydrated, having no amniotic fluid around him. Baby A's heart was under distress from the excess blood he was receiving. It was devastating, and we had to act immediately to save them before their condition quickly progressed.

A Risky Surgery

Without a risky surgery, our twins had almost no chance of survival, and since there was no one in our state who performs the surgery, we had to fly to Los Angeles. Five days after diagnosis, my heart pounded and tears ran down my face as I was wheeled into the OR and watched on a screen as the doctor performed an amazing procedure. He used a tiny laser to sever the connecting vessels between the twins on the surface of the placenta.

Though I was sleepy from the medication they gave me, the images of their little bodies inside my womb will be forever burned into my memory. The surgery was successful, and 24 hours later, both babies still had heartbeats. To say we were relieved is an understatement! I had to be on bedrest at home with the exception of my weekly doctor appointments. I was at high risk for my water breaking as a result of the surgery, and at 21 weeks, Baby A's water did just that.

We spent a frightening night of contractions in the hospital, thinking that we would soon have to meet and say goodbye to our sweet babies. However, the contractions stopped! I was sent home and told I would return to the hospital at 23 weeks and stay there until delivery.

Luckily, my hospital bedrest was mostly uneventful, and I had a lot of time to continue to prepare myself for life in the neonatal intensive care unit (NICU). I knew that I wanted my twins to have breast milk, so I spent hours reading about pumping and how to establish a good supply. I found out that the hospital would add fortifiers to my breast milk to give the babies extra calories to grow faster. A family friend sent me an article about Prolacta, a company that makes fortifiers from human breast milk that have been shown to be much better for premature infants than fortifiers made from cow’s milk. I met with a NICU doctor to make sure that my twins would get the Prolacta fortifiers. I was disappointed to find out that my hospital doesn't give all premature infants Prolacta fortifiers and that only the smallest and sickest ones qualify for it. Of course I wanted big healthy babies, but I was torn, as I also wanted them to qualify.

Twins Born at 28 Weeks and 4 Days

At 28 weeks and 4 days, my beautiful boys made their great debut. Baby A (Luke) weighed 2 lb 10 oz and Baby B (Levi) weighed 2 lb 12 oz. They made the cutoff for receiving the human milk-based fortifiers, but they were healthy – the absolute best-case scenario I could have hoped for! I was diligent about pumping and was fortunate to be blessed with an oversupply.

I told my lactation consultant that we had to buy a freezer to store all of my milk, and she encouraged me to look into donating. I knew instantly that my goal was to donate to the company that helped my preemies have a great start! I applied to be a milk donor through Tiny Treasures, a milk bank that works with Prolacta. They were easy to work with, and they took measures to ensure each applicant and each ounce of donated milk met high standards. I really appreciated that my babies were the recipients of such safe, high-quality fortifiers. Luke and Levi spent 2 months in the NICU and thrived. Luke came home at 6 lb 5 oz and Levi came home at 5 lb 6 oz.

I continued to pump for them until they were 9 months old. It was hard and exhausting, but when I saw how healthy my babies were and felt the joy of sending in big boxes of frozen milk to Tiny Treasures, I knew it was worth it. It has been one of the accomplishments I am most proud of. I hope my small contribution will help bring us one step closer to making human milk-based fortifiers a standard of care for all hospitals.

Advice From a Preemie Mom

If I were to give any advice to parents of NICU babies, it would be this: don't lose hope, because you are your babies’ number one advocate, and they need you to believe in them and fight for them! Get educated and be active in their care. I look at my 1-year-old miracles every day thinking how they are so worth every week I was on bed rest, every hour I spent researching, every ounce I pumped, every mile I drove to the NICU, and every tear that rolled down my cheek. In our home, "preemie strong" is the strongest you can be, and you'd be surprised how much you and your tiny baby can overcome if you don't give up.