My name is Ashley, I delivered twin girls December 22nd emergently due to a placenta abruption. Penelope and Charlotte were born at 23.6 weeks gestation weighing only 1.8 lbs. and 1.10 lbs. thankfully both girls were born fighting. When I woke up from my emergency surgery, I was grateful they were alive and fighting in the NICU. Both girls have been through multiple medical procedures. Penelope (baby A) had her left lung collapse before she was even 24 hours old, by day two, she had a bowel perforation and had to have her first minor surgery. A Penrose tube was put into her stomach to drain fluid, but they said she was so small they basically put it in blindly and to hope for the best, but she was too small to do exploratory surgery at a couple days old.
On day 6 of life both girls had head ultrasounds and Penelope had grade 3&4 brain bleeds detected. The neonatologist offered comfort care for Penelope, and I refused. I was going to fight with her as long as she wanted to fight. (Penelope later had 2 separate surgeries for a temporary shunt and then a permanent shunt due to the brain bleeds causing a block of spinal fluid, she will have a shunt forever and also was diagnosed with hydrocephalus). Everything in the NICU moved slowly… yet things were moving quickly.
We worried constantly of infections, or moving PICC lines, getting enough nutrients, checking blood constantly to make sure their bodies had the right amount of oxygen. Both girls required laser eye surgery for ROP (retinopathy of prematurity). They needed to be transported at different times to another hospital for each of their surgeries.
Charlotte & Penelope both were intubated for almost 100 days due to the severity of their chronic lung disease. Charlotte also had a Granuloma in her throat that caused breathing issues, later the Granuloma disappeared but left significant inflammation in its place. When it came time to bottle feed, Charlotte was unable to do that fully due to the inflammation in her throat causing breathing issues. She currently has a g tube, that she is fed through. Just recently she has been cleared to drink more by bottle. Charlotte and Penelope are on oxygen completely at night and periodically during the day as tolerated. Penelope spent 141 days in the NICU and Charlotte spent 162 days in the NICU, both girls have many specialist and therapies to follow up on for the next several years and for some specialists they will need to see for life.
We are grateful they fought at 23 weeks to be here today. They are 8 months old now! We look forward to them continuing to grow and look forward to every milestone they reach as they continue their fight.