Gracie's Story

 Gracie's story is actually a glance at my personal journey over the past few months since our little Gracie joined our family. From the first moment I saw her crying I had questions. I looked at my midwife and said "Why are her eyes doing that"? By "doing that" I mean- one eye was wide open while she cried and the other was closed. The eyeball in the open eye was rolling up toward her head, and it just didn't look quite right.
  My midwife wasn't sure why, and not wanting to concern me, she didn't say much about it. We looked her over, as is typical when you have a newborn. She was fine except that her one ear was a little different looking too. Again I questioned it, and the midwife wondered if anyone else in the family had an ear like that, to which I replied- "Not that I know of."
 We washed her, weighed her, and the midwife confirmed she was a healthy baby. I took her to bed with me and started to feed her, she had a bit of trouble latching on but the midwife was confident that she would figure it out and again assured me she's okay. Dutch and I prayed, thanking God for our new baby, and dedicated her back to Him. Then baby and I went to sleep for the night.
  Now lets just say that iPhones are a good thing sometimes and a not so good thing other times. I did not own a smart phone back when I had my other babies so I didn't sit and do research while I nursed back then. But this time around, with a few questions in my mind about my baby and a handy iPhone at my disposal I would feed baby and google my questions. By the second day I had nearly convinced myself that Gracie had some kind of genetic disorder, and I told Dutch what I was thinking. Being levelheaded and remembering that a postpartum mama's mind is dangerously weak he reassured everything was fine, and if it wasn't, we were gonna love her anyway (which was never a question in my mind), but it can be overwhelming when you have questions about the wellbeing of your child. Nevertheless, I mentioned my concerns about Gracie to my midwife in a phone conversation a few days later and she agreed with me that it would be good to have a medical Dr. have a look at Gracie. So I, the person who is NOT quick to go to a medical Dr. for anything- much less one I had never been to before, consented to having the midwife schedule an appt. for us the following week. So when Gracie was one week old we took her to see Dr. Joseph Cama, whose office is in Towanda, approx. 30 minutes from here. Let me interject here that at this point (when she was around a week old) I was starting to think the appt. wasn't necessary. Her ear had taken on a much better shape and didn't look nearly as "low lying" as I had originally thought and her eye issue only showed up when she cried. When I say "eye issue" I'm referring to the fact that she cried with her right eye wide open and the left one tightly closed. By looking at her when she cried, we would have guessed that something was wrong with the left side of her face...
  So even though I wanted to back out of the appt., Dutch and I, at the strong urging of the midwife, agreed to go through with it. Dr. Cama took one look at that crying face and said- "There's nothing wrong with the left side of her face. It's the right side. You see, most peoples faces do wrinkle up when they're crying." He said, "She has what we call 7th Nerve Palsy." And went on to explain that sometimes a facial nerve gets compressed (usually in a traumatic birth, which Gracie did not have) at the time of birth. If you've ever seen an adult w/ Bell's Palsy you know what this looks like. One side of the face doesn't show expression, a person smiles lopsided etc. He informed us that it should go away by the time Gracie is two or three months old. As for the ear, by this time it didn't look abnormal and he wasn't concerned about it. He was a little concerned that she had gone back nearly a pound from her birth weight and wanted me to keep an eye on that over the next couple wks. We did keep an eye on it, and the mid-wife became concerned when she weighed her several times over the next few weeks and her weight hadn't changed much.
  I continued having my motherly concerns from time to time, never feeling completely convinced that there wasn't something "special" or "different" about her. When she was 6 weeks old, I pointed out to Dutch that her eyes do not focus. She never looked at your face and held your gaze. Again I researched it and found a name for "dancing eyes". It was called nystagmus- involuntary movement of the eye. Nystagmus can be a condition in and of itself or it can be an indication of an underlying issue. I decided this new discovery about her eyes called for another trip to the Dr. So I made another appt. It didn't take long for the Dr. to see what I was seeing- and he said that we needed to see an ophthalmologist- an eye specialist. He made an appt. for me with one in the Sayre area, but the appt. wasn't until May 16th. That's a little too long to wait when your hoping for answers. I talked to my sister about it because she has a son that sees an opthamologist in the Lanc. area. She recommended Dr. Klombers at the Lancaster Health Campus. I made an appt. for April 8th, but told the receptionist I was going to pray for a cancellation for March 25th (because I was going to be in Lanc. that day anyway) and I discovered that if you're going to ask in faith then you better be prepared. You had better pack and prepare ahead of time as though you will get a phone call saying we have an opening.  To make a long story short- Dr. Klombers office called me at 9:50 on March 25th  to tell me that they had an opening if I could be there by 1:15. Keep in mind I have a 3 hr drive, and my plan was to leave for Lanc. at 1:00 in the afternoon. Well I arrived at Dr. Klombers office at 1:24. Not too bad:):)
  I want to wrap up this post by telling you that Gracie's story is the start of a new journey for us. I will tell you what the ophthalmologist said and will keep you informed along the journey. The news I received on Tuesday was not what I wanted to hear, and we are still processing it. In looking into the back of Gracies eyes, Dr. Klombers said she has "Coloboma" and some things were underdeveloped in the back of her eyes. He doesn't know how much Gracie can see. He said her chances of reading are slim. He said Coloboma can be linked to another syndrome, something genetic... possibly with other complications.... we will need to see a genetic Dr. in Hershey in the near future.
  So I am writing this blog to inform you all of the journey we are on. The unknown looks scary. We ask that you pray for us. We are embracing this journey knowing  it can mold us, shape us, and ultimately change us- all for God's honor and glory. I do not say that to sound like we don't feel the pain, we do. It broke my heart to hear what the Dr. said, but we do have a peace. God is already working in our hearts through Gracie. She will teach us to love deeper than we have ever loved. It will teach us to pray in faith like we've never prayed and quite possibly feel pain we've never felt before- not because we're numb to pain but because we've never faced something like this before. And ultimately it will bring us closer to the Father!!!