In our December edition of our Preemie Family newsletter we learned about the amazing miracle Antonia, a 29-weeker who was 3 lb. 1 oz. at birth and spent 66 days in the NICU.
Read more in an update by her mother, Vanessa . . .
by Vanessa, Antonia’s Mother:
Before having a preemie, I never thought something like that would happen to me. No one in my family had ever had a preemie, I was healthy, had no risk factors for premature birth, and was having the easiest pregnancy. In my mind, I was going to have an uneventful, natural delivery with Jeff by my side and take home a healthy, 8 lb baby somewhere around my due date. I was due on July 12th, so I had visions of attending summer events in which I’d proudly walk around with my baby belly and hoped that I’d go past my due date, so when people asked me when I was due, I could say “I was due 2 days ago”. I loved every moment of being pregnant and was not ready for it to be over.
In my free time, I read What to Expect When You’re Expecting and just before Antonia’s birth had read that at her gestational age, she should be her most active, as she hadn’t run out of room yet. I became a bit worried because she was her most active 3 or 4 weeks prior. I called my doctor from work and asked her to see me. I figured it was nothing, but wanted my doctor to tell me it was nothing. When I got to the office, they put me on a non-stress test machine and couldn’t find Antonia’s heartbeat. I could see the panic on the midwife’s face. They found Antonia’s heartbeat on ultrasound, but it was 80; dangerously low for a fetus. The midwife called in one of the physicians who then called in the head physician at the practice and at that point, I knew it was bad. They took me by ambulance to the local hospital for monitoring, but in the meantime, called the nearest major medical center for consultation because I was only 29 weeks. The medical center said to deliver immediately via emergency c-section, as that was the only way to stabilize Antonia. Jeff wasn’t with me, as I told him he didn’t need to come to the appointment because I was sure it was nothing. The nurses called Jeff to tell him to come to the hospital, but Antonia needed to be delivered before he arrived. Our precious Antonia was born weighing a mere 3 lbs 1 oz and measuring 15 inches. All of this occurred less than an hour after I arrived to my doctor’s appointment. For the first hour of her life, Antonia’s heart rate stayed between 60 and 100 and once stabilized, she was transported to the nearest major medical center, an hour away. I was later told that if I didn’t listen to my intuition, Antonia would’ve died in utero and despite a multitude of tests, the reason for Antonia’s drop in heart rate will forever remain a mystery.
Because I had no risk factors for premature birth, doctors had no reason to give me steroid injections to help Antonia’s lungs, so her lungs were severely underdeveloped. She developed a pneumothorax, was given a chest tube, and switched to an oscillating vent. Things were starting to look up, but on Antonia’s second brain ultrasound, they found a grade III intraventricular hemorrhage. We were informed of this on Mother’s Day weekend. Doctors monitored her head circumference and eventually moved up her head CT because her head circumference was increasing too quickly. It was then confirmed that Antonia developed hydrocephalus and needed a VP shunt. Just 3 weeks after birth and weighing only 3.5 lbs, she underwent the major neurosurgical procedure and was on the road to recovery. She was even moved to the intermediate nursery. The move to intermediate was short lived, as 2 days after being moved, she needed emergency neurosurgery to have her shunt removed and externalized because she developed bacterial meningitis following the first surgery. At the time, doctors told us that nationwide, this happens in 8% of cases following the surgery Antonia had, but at the medical center she was at, it was just 1%. Antonia was placed on powerful antibiotics and remained sedated for much longer than the she had after her first surgery. It was at that time that we had a meeting with physicians from all the specialties Antonia was seeing and were told that IF she lived, she would be likely be profoundly mentally retarded and never walk, never talk, never feed herself…all these horrible things that no parent should ever hear. After that meeting, Jeff and I began preparing ourselves for our beloved baby’s death. There aren’t words to describe how heartbroken we were. In the week after that meeting, Antonia began to present as she did after her first surgery, so we asked her doctors if they really felt Antonia looked like the baby described in the previous week’s meeting. They agreed that she had made incredible progress and although there was a high likelihood of some delays or disability, they didn’t think she’d be as bad off as previously felt. Jeff and I couldn’t have been happier! Once the meningitis cleared, Antonia’s shunt was re-internalized and she went home; 66 days after her unexpected birth and 10 days before her due date. Jeff and I made the 2 hour round trip each day, spending hours talking to, feeding, and kangarooing with Antonia who was known by the nurses for being very inquisitive for a premature baby.
Two months after her discharge, Antonia was re-hospitalized for 5 days because her shunt failed and she needed a revision. Her neurosurgeon previously said that for whatever reason, when babies that small are shunted, there’s a 50% chance they’ll need a revision within 3 months, so we were kind of expecting it. After the revision, it was as if they handed us a new baby; healthy, alert, and very happy. It’s been over a year since her last surgery and aside from one little scare, which ended up simply being symptoms of the very common Coxsackie virus, she has been doing great.
Since her discharge from the NICU, Antonia has been receiving PT and OT each twice a week, as she has some increase in tone, especially on her right side. She’s been diagnosed with a right hemipeligia, but at this point, a diagnosis of cerebral palsy has not been given and we were told that if it is, it would be very mild. Antonia has been delayed in meeting her motor milestones, but has fortunately met all of them, just on her own timeline. What’s more important is that we were told she has no signs of cognitive delay; amazing considering all her poor brain has been through. As for her speech, it’s right on track, but she still gets speech therapy once per week due the all the brain trauma she’s had.
To people who don’t know Antonia’s story or aren’t around her often, they think she has no residual effects of her prematurity. While Jeff and I know that’s not true because we’re aware of the 5 therapy sessions per week, appointments with specialists, and constantly being watchful for signs that her shunt might not be working properly, we are thrilled with how our little girl is doing and the more her spunky little personality develops, the clearer it becomes to us why she’s doing as well as she is.
Watching as the person we love most in the world fought for her life has changed us in a profound and positive way. We never take for granted anything she does. When she said her first word or crawled for the first time, we cheered her on as if she had won the Nobel Peace Prize. When we watch her feed herself, say “hi” to every child or dog she sees, or make her “cheese” face, we know we are witnessing a miracle. Jeff and I are no longer concerned about unimportant things such as what room we might renovate next or where we might go on vacation and focus on what truly matters, like being together, creating happy memories for Antonia, and helping our little girl grow up to be a kind, compassionate, and confident young woman. Do we wish none of this happened to our sweet baby? Of course! We definitely would’ve preferred a more conventional birth for Antonia, but in the end, we can certainly see the silver lining. We are blessed!
Pic #1: First day home from the NICU, taken by Kelsey
Pic #2: Family Picture, taken by Sarah K.
Pic #3: February 2012, taken by Antonia’s Mommy
Pic #4: 1st Birthday, taken by Sarah K.
Pic #5: Fall, 2012, taken by Antonia’s Mommy
Pic #6: A True Miracle!, taken by Katie
Sign up for our FREE subscriber-only Preemie Family print newsletter here.
Sign up for our FREE subscriber-only Preemie Professional print newsletter here.