Sunday, August 8, 2010

The Waiting Game

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Our beautiful little Brooklyn was born 12 days ago, and needless to say, it has been an emotional week and a half. We are so very thrilled to finally meet her and love on her, but we are also very anxious to get her home so our family can be under one roof.

Overall, Brooklyn is doing great! Her vitals have been strong from the start, and she was able to get her MM surgery within the first 24 hours. Her surgery site is healing beautifully and her hydrocephalus has remained relatively stable since her surgery. She is nursing wonderfully and is only being "cathed" as a precautionary measure. So far, she is dirtying plenty of diapers on her own and her renal tests have all shown only positive signs.

Of course, we realize all of this can change, which is why our neurosurgeon wants her to stay in the hospital for another week. So we wait. It is hard -- this waiting game -- but I know this is all just part of having a child with Spina bifida. You wait and see.

Right now, we are waiting to see if Brooklyn needs a shunt. She was born with larger than normal ventricles and her head circumference has slowly increased, but all of her head ultrasounds have shown no major changes since the surgery. Her soft spots are "full, but soft" and our neurosurgeon isn't quite convinced she needs one...yet.

When we first chose Brooklyn's neurosurgeon, we knew that she was a little progressive and hesitant to instantly shunt. We were on board with that strategy, but I admit that we are getting a little restless as we watch her head get larger and we start to worry about the long-term effects of keeping this excess fluid in her brain. While we may be costing her "IQ points" by waiting, we can also reduce the chances of shunt revisions and even mortality down the road. Even as I write this, I cringe at the thought of making this decision for my child.

But as I read last week's blog entries, I can see this too is part of having a child with Spina bifida. Some of you have chosen to have MACE and other procedures, doing what you thought was best for your child and hoping you made the right decision. It is hard, but it is our job...whether we like it or not.

And so is the journey. A journey of hope and faith and, yes, lots and lots of waiting.

But as I look down at my precious little angel, stroke her soft skin, and soak in that heavenly scent, I know she is worth every minute of heartache, every hard decision, every minute in the hospital. She is teaching me just how precious life is and how every second I have with her -- and the rest of my family -- is to be treasured, not rushed.

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3 comments:

HennHouse said...

She is beautiful. Congratulations.

Scasmflops said...

Congratulations!!!! She is adorable indeed. praying for you guys.

Meilani said...

Congratulations! She is beautiful. I remember watching our little girl's head grow little by little after her back surgery. I felt so anxious. She ended up getting a shunt and we were so grateful. Looking back I am glad that I took pictures and video. I feel like I can see the difference before and after the shunt surgery. I hope your stay at the hospital won't last much longer! Our prayers are with you and Brooklyn.