Thursday, May 28, 2009

A Complete 180

Today, Lily was supposed to have surgery to remove her hemangioma.

We were assured that this was not a "major" surgery, although, to us, any surgery would be serious. Over the last week and a half, we prepared ourselves for the worst and hoped for the best. We had the typical concerns and worries: would she react to anesthesia? would she bleed too much? what if the unthinkable happens? We were not thrilled by the thought of her going under the knife by any means; however, at the urging of the neurosurgeon, we came to understand that this "tumor" was something that needed to excised promptly. He gave us three primary reasons: the tumor is fast growing and could affect her vision, the size of the hemangioma is already distorting her eyebrow, and cosmetically, if would be more "appropriate" to remove the bump than to let it continue to grow.

With these things pointed out to us, we were in agreement. We did not want our beautiful little girl to ever even have the possibility of losing her vision. We also are very tired of going into public and having people comment, "Oh! Did she bump her head?" Every time someone asks me this, I feel frustrated. After all, she's not even four months old--she's not mobile, so how would she bump her head? Unless, of course, I somehow dropped her or something...

So, having accepted surgery, we began to look forward to her no longer having a big bump on her brow. I did not feel like I was prepared to see her in the recovery room after surgery, possibly in pain and attached to wires and tubes, but we felt like our options had been explained and this was the best possible course of action.

Yesterday, we packed up the car and drove nearly four hours to Denver. We arrived at Children's Hospital and took Lily to the lab, where they drew four vials of blood to cross type her in case she needed a transfusion. An hour later, we were back up in the neurosurgery department, anxiously awaiting the arrival of our neurosurgeon. We were told that we would also be meeting with the plastic surgeon today, and he would determine if Lily needed a CT to see if the hemangioma had distorted her bone.

After waiting and waiting, the two doctors and a nurse finally entered the room. The plastic surgeon strode up to Lily and looked at her bump and said, "Yup, this is exactly what I thought it was--a hemangioma. Doing surgery at her age would be very risky--the thing would bleed like crazy." He then explained the natural progression of a hemangioma. He said that, by 9 months it would probably stop getting bigger and slowly start the process of involution, where it would recede back into the skin. By 5, this process is usually complete. Because of this, he said he would not even consider surgery on her until she was at least a first grader. He said that she may need a minor cosmetic surgery to repair loose or stretched skin. Then he patted her on the head and said, "She'll be fine. She's a pretty baby."

I was in shock. We were not expecting this. The neurosurgeon was apologetic, although we were never really detailed about why he wanted to operate immediately only to have someone tell us otherwise. We were also frustrated. This was the fifth doctor we had seen and ALL of them had given us a different diagnosis or a different method of treating it--how do we know who is right? We are reminding ourselves that we took her to the best hospital, and the plastic surgeon stated that he had seen these for the past 40 years. He did recommend that we make an appointment with the vascular malformation clinic, and said that if it got bigger it could be treated with steroids (which we don't particularly like). He said that at this point, however, he would not do anything to treat her.

We are tired. Tired of doctors and tired of travelling. We were mad that we had travelled so far and even more angry that they failed to stop the lab techs from drawing her blood if they knew the surgery was going to be cancelled. We decided we aren't going to waste any more time on this and put Lily through appointment after appointment. I feel a complex range of emotions--disappointed that she still has have a bump on her head, relieved that she didn't have surgery, worried about how children will treat her when she gets older...eventually we will come to terms with this.

Going to the Children's Hospital and seeing many sick children reminded us that we should be grateful that Lily does not have something much more serious. So many things could have happened, so, at least the one thing that did happen is not a major health concern. We seek solace in this fact, along with the knowledge that we have a very beautiful (despite the bump), healthy, and happy baby girl.

1 comment:

Three's Company said...

I wouldn't worry about how other children treat her. Up until the age of 5 or 6 kids notice things, but are generally pretty accepting of everyone.
I'm sorry this has been such a frustrating ordeal for you guys! It's summer now, so make a point of doing some relaxing and having fun. And remember, you aren't obligated to explain the bump to everyone who asks! It's ok to ask people to mind their own business!