Wednesday, October 5, 2011


When Gabriella was being discharged from the NICU we noticed a smallish, flat red mark on her left side.  As we had never seen it and it was never mentioned to us, a resident came over to make sure it wasn't an injury or irritation from any equipment.  Turns out it was just a birthmark.  A strawberry hemangioma, to be exact.  Babies can be born with them or develop them in the days/weeks/months after birth.  This type of birthmark is a non-malignant growth, made up of a gathering of red blood vessels.  They typically will double or triple in size and are usually done growing somewhere between 9 months and 3 years.  They will then stabilze and slowly shrink back down.  From what I've read and been told a few risk factors for a baby having them are being caucasion girls, a multiple gestation, high levels of maternal estrogen, maternal high blood pressure, and pre-eclampsia.  (Benjamin has a very small one on the top of his head that started about a month ago.)

Two weeks later, we noticed one on the back of her head.  This one has gotten very large, very quickly and is pretty elevated.  Hers has a very smooth surface and is almost perfectly round.  Size-wise it's about 3 cm by 2.5 cm.  The one on her side is not that big or as elevated, but has still gotten quite a bit bigger from it's starting point.  That one is more irregularly shaped and has a slightly bumpy texture, like the one pictued if you clicked the link.  I was super concerned because Gabriella seems to not want to lay her head straigh back on it, and she definitely prefers to look left to begin with.  Well, with everything else we have going on, I'd really like to not have either kid get a flat spot that requires a helmet!  I had read about different treatment options, but our initial pediatrician assured me there was no need, just let nature take it's course.  I guess hemangeomas are not normally treated unless they might interfere with the quality of a baby's life (obstructing ears, nose, eyes, mouth, etc) or are very large on the face.  Well. there are four different pediatricians in the practice that the babies go to; there's one I really, really like, so for well visits we can request her.  She met Gabriella for the first time at thier two month well baby check and immediately suggested we see a pediatric dermatologist at Children's Memorial Hospital.  I jumped at the suggestion, but the soonest they could get us in was the end of October. 

Low and behold, I called out of the blue last Wednesday to check for cancellations, and there was one for the very next day, so we took it.  The derm agreed that Gabriella was a good candidate for treatment.  The route she recommended was a cardiac medicine called Propranolol.  It's not yet approved by the FDA for treating hemangiomas, but is apparently used worldwide with great effectiveness.  Gabriella had an electrocardiogram last week, had to wear a Holter monitor for 24 hours to track her heart activity, and is on a list for a bed at Children's.  Once cardiology clears her Holter results and a bed is available, she'll be admitted for 24 hours.  They'll then do an ECHO (ultrasound of the heart), and administer 3 doses of the medicine, once every 8 hours.  As long as those three doses go smoothly and her heart rate, blood sugar, and potassium levels don't drop, we'd be sent home on the medicine and likely continue it for a year.  Her hair will still grow through the birthmark once it flattens; she won't have a bald spot.

We should hear from cardiology any day now, and then we are just waiting for a bed.  In the packet of information they gave us it stated that we'll be in a semi-private room but will not be placed with a child that is contagious.  It also went on to say that our child will likely be the healthiest baby on the floor.  Yup, right there in black and white, we got a reality check to ensure that we keep things in perspective, which makes me pause and think back on our NICU time.  I could write several posts about things that went on around me during the month that we were there, and one day I might.  Let me just wrap up by saying that Jamie and I are beyond blessed to have been able to bring two beautiful babies home from the hospital.  We witnessed several cases where that was not how they ended.  In just a 24 hour stay at Children's, we won't get to know anyone like we did at the NICU, but I will remember that as serious as this is for us, I will be in a place with mommies that would give anything to "just" be dealing with our situation and be able to bring home a healthy baby.

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