It seems like just yesterday that we left the NICU at Akron Children’s Hospital. I have very many mixed memories of that place. Some of the scariest times of my life happened behind those walls and some of the happiest.
In the midst of a dark time we did our best to make the NICU home. Years ago I bought an art print that says, “Home is wherever I’m with you.” (Yes, it was bought from Urban Outfitters and Edward Sharpe and the Magnetic Zeros were popular…ok now listening to them on repeat).
Since our marriage, Dustin and I have moved six times. It’s funny to add “NICU” to that list. We spent most nights there but spent 17 at Ronald McDonald House and once a week at home to rest up. I plan on writing a lot more about making the NICU home and our experiences there. In the meantime, enjoy this video I took near the end of our stay. You can tell Bella is much more stable and is even in an open cot!
Isabella was born without any birthmarks, but, after a few weeks we noticed a small, flat, red spot on her head. The NICU team assumed it was agitation from her CPAP hat so we switched her breathing assistance to give it a break from rubbing. After looking closely, her primary nurse and I determined it didn’t look like skin breakdown but more of a permanent spot. She threw out the thought, “oh she’s probably got a hemangioma!” I, of course was terrified looking up images (after learning to say/spell it).
My worst assumption ended up coming to fruition, Bella has a large hemangioma that looks every bit as scary as some of the ones I saw with my search. Simply put, it’s harmless, is considered a vascular birthmark, should go away as she grows, and is a collection of blood vessels. We did an MRI to rule out any issues and it’s completely superficial and cosmetic. Long story short, we choose not to treat it a few months ago. We got a second option from a pediatric dermatologist and heard from many neonatologists who treated Bella. We felt that was the right decision and that we would embrace it until things needed addressed. Until…
Repping Akron Children’s Hospital, where we lived for 100+ days!
Why is her birthmark a problem?
Sadly, after being readmitted to the NICU we noticed 3 more teeny red dots/beginning of hemangiomas on her tummy/chest. They are elevating but don’t look scary yet. We were advised to follow up with dermatology to reconsider treatment. When there are 5, it’s recommended to begin treatment because there’s higher risk of internal ones. Internal ones can cause issues with major organs. The large one on her head is also growing rapidly. So, we were waiting for August 9th for her appointment when we noticed the birthmark changing color. I knew these things could ulcerate (skin breakdown), but hadn’t seen signs before. I’m so glad I trusted my intuition. I immediately contacted our dermatologist who confirmed with images it is beginning to ulcerate. 🙁 We began treating it with antibiotic cream and see him on Monday. (He offered the next day but we felt Bella needed to rest after going through so much). He said ulceration could be extremely painful. I’ve seen what they look like when they break down and it’s very painful looking.
Birthmark beginning to ulcerate.Looking worse.
What’s next? Isn’t it an easy fix?
We will begin treatment with a drug called propranolol. This medication inhibits the growth of blood vessels and constricts current ones. This is hard for us as Bella is the size of a newborn (7lbs 12 ounces) and the thought of messing with her blood pressure/cardiovascular system terrifies us. That being said, with monitoring her blood pressure and vitals this treatment is safe and effective. It’s very commonly used. We don’t want the ulceration to get worse and we certainly don’t want to worry about internal hemangiomas!
Looking super cute!
I, personally would also like to prevent the others from getting to the size of her larger one. Since they’re on her chest/stomach they could interfere with her tummy time or gtube. After talking to the doctor, we decided to do a liver ultrasound just to confirm there aren’t any hemangiomas there. So, on Monday we’ll be trekking to Akron Children’s for her appointment and ultrasound.
Adorable enjoying her own nursery!
Please pray
1.) This birthmark doesn’t ulcerate any further and that with treatment we can avoid pain and discomfort.
2.) Bella tolerates the medication.
3.) That we would be able to handle the magnitude of treating such a little one with such a serious prescription. That we would be extra careful with doses and track it well.
4.) Also, pray against any internal hemangiomas. We have no reason to believe she has any, but it is a possibility.
