While medicine has made huge progress in the area of premature birth, there is still so much to learn and so much to understand. Sometimes, doctors don’t know what the best option is and an experimental procedure is the best option for survival.
In the case of my twins, the doctors could not predict what would happen. They said there was really no “safe” time until both babies were in the nursery. They just didn’t have the tools to figure out exactly what was happening and how to stop it. It was truly one of the most frightening times of my life.
In today’s Micro Preemie Monday, you’ll meet a family that also had to deal with just as much uncertainty and fear. Their doctor did his best with an experimental procedure, but couldn’t predict what would happen.
It is a story of an amazing fighter, Nellie, as told by her mom, Amber.
1. Tell us about your baby.
On Father’s Day 2016, at 24 weeks, 5 days, my beautiful little girl came blazing into this world. She was 1 lb. 7 oz. and 12.8 inches long. Her name is Nellie.
2. Do you know what caused your premature birth?
After several years of trying, on January 29, I found out I was finally pregnant. It was soon discovered that I had not one but two miracles!
At 17 weeks pregnant, my baby A’s sac ruptured. For the next two weeks, we went through a rocky road of bed rest and prayers that the fluid would replenish itself. After the fluid coming back, draining, and coming back again, at 19 weeks I lost my baby A. I lost my son.
In May, I underwent a procedure that I later found out was experimental. They removed my son, but left his placenta and cord, and his twin sister. I was told not to get my hopes up as this procedure would more than likely cause me to miscarry. Not being yet 20 weeks, as the baby isn’t considered a “baby” yet, I was sent home to ride it out. They gave her a 10% chance of survival.
Afterwards, I went through bi-weekly check ups to try to keep an eye on my girl, and they finally realized I was RH- (this was determined to be the “cause” of losing my son.) As the weeks progressed, it looked like the procedure just might work.
At my 24 week check up, I was told by the doctor that he was so confident in my pregnancy he suspected I would make it full-term.
2. Tell us about your NICU stay.
I watched her skin finish forming, nails grow, eyes open, hair grow, cartilage form in her ears, and many other developmental things that most people wouldn’t even think about. She had ROP (Retinopathy of Prematurity – surgery was pending for the right eye), deaf in right ear, chronic lung disease, absent septum pellucidum, atrophy of the corpus callosum, and the list goes on.
We had many ups and downs. After a staph infection, two blood infections, pneumonia, 4 blood transfusions, and watching her die 4 times, we made it! She was a fighter from the start. As a mom of one so small, the feeling of helplessness is very overwhelming. All I could do was pump every three hours around the clock and give as much kangaroo care to my Beautiful as possible.
Capturing Hopes, a group of volunteer photographers, came by regularly and took wonderful photos of my girl to document our snuggles and her amazing journey (pics in confetti hat are 28 weeks gestation, pink outfit is 4 months and her due date, those pics were taken by capturing hopes). My Beautiful earned many nicknames such as spunky butt, Spitfire, pistol, firecracker, little turkey, and more from the amazing staff.
3. How are you and your baby doing now?
After 111 days in the NICU, on October 8th, she came home 4 days after her due date, weighing 6lb 8oz measuring 19.5″ long. Nellie came home on Oxygen and a heart monitor.
For 5 weeks, she didn’t grow at all. No weight gain and no length. Her doctor was starting to get concerned, but couldn’t find anything in her labs. However, at the check up on the fifth week, her eye and ear had completely healed to perfect vision/hearing.
Aside from the brain abnormalities and being small, she has been cleared of all preemie problems. We still receive Physical Therapy in an attempt to slow her down.
She is now 14 months old, 12lbs 14oz and 25.5″ long. She’s doing great and continues to amaze me, her doctors, and therapist everyday! She is cruising and crawling. She can say, “mama, dada, papaw, bye bye, ya you (love you), up, ghi ghi (what she calls her sissy), and uh oh.”
5. What advice would you give to new preemie parents?
Being part of the micro preemie group on Facebook has been the biggest therapy for me. When I hear of other people starting their journey, the best advice I know to give is to just breathe…. let the nurses and doctors do the worrying, focus on loving and staying as stress free as possible (yes I know it’s hard). When the newness of the scary NICU wears off, I suggest listening to the NICU at night song. It’s very cute. Then there’s this article. Even now, out of the NICU, it still holds so much meaning for me.
Thank you so much to Amber for sharing sweet Nellie with us. Please leave any supportive comments or questions below.