specialneeds

What’s On Her Head? A Hemangioma Story…

Isabella, posing for a cute picture

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.

XOXO, Tiffany

It’s Not A Bad Day…It’s a Day with Bad Things In It.

Today was difficult. Since being home from the NICU we haven’t been so scared that Isabella would need to be sent back to Akron Children’s Hospital.

The First Plan To Treat Reflux

Lately she’s been spitting a lot after almost every feed and cries out in pain. We’ve known she has reflux, but were advised against treating it since she was doing OK and not spitting much…until more recently. After last week meeting with Speech Therapy and Nutrition, they noted she was hoarse and her esophagus could be getting burned so we should begin treating it. We got in the same day with our Pediatrician and began Zantac. We also ordered a pump for her gtube feeds, hoping that would help. Since then things have gotten worse. The Zantac made her struggle to go number two and seemed to increase the spitting. We stopped it and made an appointment for Friday.

Where We’re At Today

We didn’t know it would get to the point where she’s spitting up almost her entire feed and crying/screaming out in pain while being fed through her tube. She shows all the classic signs of reflux. The formula comes up through her nose, she burps it up, and she is coughing a lot. This afternoon I couldn’t bring myself to continue her feed because she was in agony. I’d stop it and restart it. She has to eat! She’s been labeled as Failure to Thrive once before so this is very scary for us. I called right away and got an appointment this afternoon. Sadly, she had only gained about one ounce since July 11th (6 days ago) and she’s supposed to be gaining an ounce per day. We strategized and decided to try Prilosec and Neosure Alimentum, a specific formula that may help. (In the NICU we tried this formula for a few days but saw no progress). Since we’ve been home tonight she’s only had a slight spit, slept through one feed with minimal crying, and cried through the other feed. It’s improvement. I’ll take it.

Why Is She Getting Worse?

We aren’t 100% sure why her reflux has taken such a dramatic turn but we have a few ideas. 1.) When she had her gtube surgery her stomach was moved. The Neonatologist had warned us this could cause reflux since the position of the stomach is different. 2.) Babies can “grow” into reflux. I’m not sure why, but it’s something that you see between 3-5 months we were told.

Why Is This Such A Scary Thing?

Isabella was a micropreemie and needs to grow. She is less than 1% in weight than the rest of those her age. Refusing to eat caused her to be readmitted into the NICU for another month. We later learned she silently aspirates (liquid goes into her lungs) when she eats. This has caused her to be extremely averted to bottles and most things orally. With her spitting up, we are concerned she could be aspirating that liquid. We have no way of knowing if it’s going into her lungs. Without keeping her formula down she could also lose weight, which is super scary for a baby already in the less than 1% for weight. This could lead her to be readmitted to the hospital.

Please pray that she stops spitting and begins tolerating feeds and isn’t in pain.

When It Rains It Pours

On top of the reflux, which was the most critical issue we were facing today, Isabella’s hemangioma (birthmark on her scalp) began to show signs of ulceration (skin breakdown). I had noticed a few dark spots and after some research learned that the large blood vessel filled mark could ulcerate and breakdown. It can also get infected. I sent off some images to our pediatric dermatologist and he called back, confirming it was beginning to ulcerate. We were given the option of taking her to Akron tomorrow but we felt it was best to wait a few days since she’d been through so much and we are beginning a new formula and medicine today.

He said that was OK and ordered a topical antibiotic to apply. We aren’t to use our fingers but a Qtip. Well, I kiss her all over her head and stoke her head and most certainly touch it, so I’ll need to be more careful and use more sanitizer.

We are also going to be treating the birthmark with medicine to make it shrink. 2 months ago we met with him and decided against treating it since it seemed as if it would go down and she only had one. It was only cosmetic and that was confirmed with an MRI. Now, she has 3 more and there’s concern for internal ones. So, for our next appointment we will begin a blood pressure medication to shrink it and the others. She will also have a liver ultrasound to rule out any internal ones.

My heart is super sad, but thankful we have access to medical professionals. Our dads both came over and brought goodies. Doug brought homemade pie, veggies from his garden, and chocolate zucchini bread. My dad ordered us Papa Johns, enough for tonight and tomorrow. They held Bella while I tried to get a grip on everything. Tomorrow we meet with Help Me Grow at home for her assessment for physical therapy and pediatric development. I’m praying it’s a better day and she’s not in pain.

Thank you all for following our journey and loving us well. Please pray tonight goes well.

XOXO Tiff