A Bit Like Frankenstein

August 30, 2012

The spot is gone!
Lily came through surgery beautifully, and we were home by noon yesterday!  God is so good!

I'd be lying if I didn't admit to having a bit too much fear gripping me yesterday between about 7:30-9:00 am.  I started out so calm, I stood beside her during all of the pre-op preparation.  I signed her life away on the release form, and a nurse held out her hands for my baby.  It all happened so fast, and there they were walking down the hall to the OR with her, and I saw her waving and smiling the whole way, giving doctors and nurses "five".  That was the last time I would see the spot.  The last night I would see my daughter exactly as she was born.

The surgery was projected to take around an hour.  About an hour and 15 minutes in, I suddenly felt like I was going to lose the muffin I had just eaten.  I had about a thousand thoughts rushing through my mind, all of the "what ifs", a lump in my throat, I looked at my husband with fear, and said, "What do you think is wrong?"  Luckily, it was only about 5 minutes of pure panic, until the receptionist came over to me, and said they were in the process of closing up, and the surgeon would be out to speak with us shortly.  It was enough of an update to get me through the next 15 minutes or so, without completely losing it. 

Lily's surgeon was a kind man.  He assured us everything went great.  I had to ask him the question, I so desperately wanted to know.  I asked, "What was it?"  He assured me it was indeed exactly what many doctors before told me it was, simply fat, skin, and tissue that had collected as part of her hygroma.  Likely left when it ruptured around 28 weeks.  He told us that we'd be allowed in recovery in about 10 minutes, and just like that it was pretty much over with.

I breathed for what seemed like the first time that morning.

We waited another 10 minutes or so until we were ushered back to see her.  She lay on the bed all hooked up to wires and an IV.  The nurse introduced himself and said that I could hold her.  I sat down and he handed her to me, and what I saw next amazed me:  the back of my daughter's head, not beautiful and perfect like I had imagined so many times in my head it would look like when the spot was gone, but horrible, and scarred, and bloody, and huge!  The incision ran from the middle of her neck, to the middle of the back of her head, it was oozing puss and blood, it was big- probably 5+ inches long.  I felt my breath catch.  This... this is not what I expected to see.  Even though I knew my daughter was having a large spot removed off the back of her head, I had somehow blocked out the reality of how that would look, and replaced it with an unrealistic image of beauty.

There were a few moments in that recovery room yesterday that I regretted all of it - that I wished I could get that spot back.  That I longed for my baby to be perfect, to be whole, to look less like Frankenstein and more like the Gerber baby.

I know the spot had to go, and I hope and pray that the scar that remains will heal and fade with time - that it will eventually be covered by gorgeous locks of hair! 

We are told that because of the size of the incision she will likely need to have a "revision" done to the scar in the next 6 months to a year.  The skin needed to be stretched just a little too far, and the middle of the scar will eventually pull apart a little too much.  The surgeon will need to cut the old scar out, and create a new smaller scar.

I wanted to be able to move on after yesterday - to put this all behind me.  I was unable to do that fully.  Sure, the back of my daughter's head looks a bit like Frankenstein, but today it has grown on me a little. 

Despite it all I still know that "there are far, far better things ahead than any we leave behind." - C.S. Lewis.  Why?  Because I am a child of God, Lily is a child of God, and as he's proven over and over again, he knows what he's doing, even if I don't.

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  1. Sarah, I feel so honored to have met your Lily. She was a joy to hear at the store, just 'talking' to you. No matter her size, her abilities, or her needs, I saw in her eyes pure joy and grace. Fearfully and wonderfully made. One of my favorite excerpts from scripture (Genesis) is the Lord saw what He had created and said, "you are good". I love reading that God created us in His image. It reminds me that no matter what, I am good. I think that of Lily when I read about her.


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