Hello from New Jersey! My name is Tina and I’m a new mom to quadruplets, two boys and two girls. They are four months old. Our sweet girl, Rylee, has four hemangiomas.
I delivered the quadruplets at 30 weeks, 6 days via c section. We expected an early delivery and some NICU time as a result. Rylee, just like the others, was on CPAP immediately after birth. CPAP is an acronym for "continuous positive airway pressure."
Neonatal CPAP is a device used to help newborn infants breathe. When Rylee was two weeks old, her CPAP was removed.
This was the first time we were able to see her face without all of the wires and tubing. This was also the day we noticed her first hemangioma.
At first, the doctor was unsure if the redness was just irritation from the CPAP or if it was truly a hemangioma.
Surely enough, after a few days, it was confirmed that on the side of her eye she had a hemangioma.
Within the next few days, three others popped up. She had a tiny one on her stomach, her thumb and the side of her head.
At first, with the lack of knowledge, we were extremely worried about them. We learned about the growth process and how to contain them. The one that concerned the doctors the most was the one on the side of her eye. They feared that it would grow above or below her eyelid, resulting in vision loss.
The doctor’s in the NICU agreed to be proactive and medicate Rylee for her hemangiomas.
She was prescribed Propanalol. Her dose increases as she gains weight. Now that she’s out of the NICU, we see a dermatologist monthly. We also visit a ophthalmologist to check on her vision.
Rylee’s journey with her hemangiomas continues. We still worry about the growth and side effects that may occur as a result. We plan to continue to monitor their growth and to medicate her. We have an optimistic mindset and believe with time they’ll disappear.
Follow our IG account to keep up with Rylee’s progress @matthews_quad_squad
- Tina
If you like to share your story, do not hesitate to write to hemangiomamomma@gmail.com.
I had hemangioma as a baby too. One on my head and one on my elbow. I had surgery for the one on my head. I hope Rylee gets surgery for hers too. A lot of people don't know what it is. I feel embarrassed people will ask me about the one on my elbow. It has gone away some. One of Rylee's might go away also. Your daughter is so cute!!!! All of your quads are!!!! I wish you and Rylee chose surgery like I did. From the best of luck,
Amanda K