"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Tuesday, April 24, 2012

Lessons from Bathtime

I can hardly believe it’s been 2 weeks since my last post…the days pass quickly!
We’ve been watching the swelling around Meghan’s shunt. A week after the last reprogramming, the fluid started to build up again. I checked in with the neurosurgeon and Meghan had a shunt series (XRay) done to make sure everything was still connected. It was, and her surgeon still feels that it is fluid leaking around the entrance point that will hopefully resolve with time as scartissue builds up around the hole.
We went backto the audiologist and had her hearing re-tested, which confirmed the hearing loss in her left ear. They diagnosed her with Auditory Neuropathy SpectrumDisorder (ANSD).  It seems that the external ear structures and her cochlea are functioning properly, but the connection from the nerve to the brain is either not working, or is sending an incorrect message that she is not interpreting as sound. The doctor said that she may actually be receiving “sound” but that the brain is not “hearing” it.It will be clearer as she grows and we can test her in different ways. In the meantime, we are getting set up with an ear nose and throat doctor, and speech therapist. Meghan also visited the ophthalmologist who saw her in the NICU, and again her optic nerves look“beautiful”. A sigh of reliefJ
Last week we saw the orthopedic doctor who had some new information. He was able to see her cervical spine from the brain MRI she had at birth. Meghan has two hemivertebrae (vertebrae that only formed on one side) in her neck as well as in her upperback. This is contributing to her torticollis. For now, we are going to do physical therapy (she starts tomorrow!), and follow up with more XRay’s in 3months to see how the angles of the spine change as she grows. He wasn’t able to tell us if she will need surgery or not, but he did say that in this case multiple abnormalities are better than one.
The last fewweeks have gone so fast! I have already found myself back at work this week.That was something I wasn’t sure I was ready for, but it was nice to get back to “life”. It is also hard to believe that next week, Meghan will be 2 months old. We are getting to know her, and watch as little pieces of her development unfold. Lately she has been tracking objects really well with her eyes- she loves to watch the mobile that is on her changing table. Living with the “unknown”is becoming a little more familiar, a little more normal. We have a routine of sorts, and she is now just such a part of our family that I can almost forget what we’ve been through, and what might be ahead. Then I’m bathing her, talking to her, washing her tiny cheeks and chin, and my soapy fingers course over the length of tubing that goes down her neck, chest, and belly. My mother’s heart hurts so badly for her- it screams that its not fair, that it’s not supposed to be there, and that she shouldn’t have to go through all of this. Then she looks up at me, and I’m reminded that born in a different country, she wouldn’t have survived, and perhaps in a different situation, she wouldn’t have made it here in the first place. This precious gift has been given to us by a sovereign God,who knew all of her days before one of them came to be.  I’m reminded that as much as I hurt for her, He hurts just as much. So instead of crying, I take a deep breath, dry her off, put on her jammies and snuggle her close…just the way He knew I would, because He knew all along that I would be her mother. 

 You havesearched me, LORD,
   and you know me.
You know whenI sit and when I rise;
   you perceive my thoughts from afar.
 You discern my going out and my lying down;
   you arefamiliar with all my ways.
 Before a word is on my tongue
   you, LORD, know it completely.
 You hem me in behind and before,
   and you lay your hand upon me……For youcreated her inmost being;
   you knit her together in my womb.
 I praise you because she is fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
 Her frame was not hidden from you
   when she was made in the secret place,
   when she was woven together in the depths ofthe earth.
 Your eyes saw her unformed body;
   allthe days ordained for US were written in your book
   before one ofthem came to be.
Excerpts fromPsalm 139
Personalization and emphasis mine:)


  1. She is so precious Sarah! Thank you for keeping us updated on how she is doing. I love your words...she was made to be your daughter and you her momma. xoxo

  2. *tears* Such beautiful words :)

  3. Sarah you bring tears to my eyes as I read your words. Meghan is so beautiful, and you are right, you were meant to be her Mommie. Keeping you all in my prayers.