In a Groove?

I certainly hope so...K got up late today so all of her meals landed right when Emily needed to eat. This has been very hard for me to adjust to since I still have to feed K the messy stuff. But today, we managed - in a minimally stressful manner - to get all three of us fed at three different meal times...I think I might have grown a third arm since Em requires my attention and both my hands to eat. :) This is the downside to M's schedule, I don't have help at any meal or in the evenings...ah, but I cannot complain...when he IS home, he is SO helpful and he has taken on some of the cleaning to help me out. I married an amazing man, that's for sure! We also managed a walk, the park and a workout while Dad was up. It was a good day!

A Lack of Normal

I wrote this in my journal a couple of days ago and was sharing it with my sister-in-law and she encouraged me to share it with you all. It is kind of long…

We have been learning in Bible Study that to live the great life, we must leave the ordinary/normal behind. Today I just want my life to be normal. You know, a baby that just eats and sleeps and gains weight effortlessly. A baby you take to the dr once a month…and the dr is not half an hour away, those kind of things. Don't get me wrong. Not for one second do I miss driving into the hospital every day and using four hours of my life just to be with my baby for a couple, always wondering about her health. Nor do I miss spending almost $500/month on gas. BUT in all reality, having her here is a lot harder in every aspect except the part that she is mine and she is here for me to hold whenever I want. Do you ever say, "I wish someone had told me..."? I know people DO tell us, we just don't listen, but I wish someone had told me to buy stock in Walgreens...I think we are single-handedly keeping them in business. 

But you know what? Even as I write this all, I know it is not true. I can barely write it out, but I think I need to get it out of my system. If I had a normal baby, I would not have Emily. Sitting in my house every moment of every day is a testimony of God’s miraculous healing power, his grace, his mercy and his faithfulness. I can take one look at her and depending on what I see, I can instantaneously recall some part of God’s character that was revealed to me in these times…or just a gush of gratitude that she is here and God gave her to me to care for. I am so glad she is here and how I live my life, whether in self-pity or energetic enthusiasm, is all a matter of perspective.

26 times a day, we give her something…meds or additives, whatever it is. I can choose to see that as an inconvenience (and incredibly hard to keep up with) or I can remember that she does NOT have a feeding tube of any sort – she is eating all on her own…something they said she would most likely not do. And I can be proud. Proud of all my little girl has accomplished. She has to work so much harder than all of us to do the things we take for granted and yet she trudges on.

I can look at her oddly shaped head and see how funny she looks, or I can look at her head and remember the first time I saw them flip her head over. It looked like a cracked egg inside a baggie. Just remembering it brings tears to my eyes. Why? There was so much fear accompanied with that image. She was so frail, so unformed. I was so scared because I thought there was no way she could make it. Six months later, here she is, funny shaped head and all lying in my crib instead of on a hospital bed. I love her head. I kiss it a thousand times a day, tell her I love her and tell her I can’t believe she made it and is here to live with us.

I can see her bug eyes and I can be intimidated by how awkward they are, or I can look at her eyes and remember the weeks of intubation. Remember that my little girl had to learn to breathe…at the cost of her eyes. I can remember that they told me that the only way she was going home was with an oxygen tank…and she started breathing room air over a month before that. I can look at her eyes and see that they don’t track and I can remember that she should be blind, but God has given her sight. I can’t wait for the day (hopefully next week) when my daughter looks up and sees me for the first time. She is going to look SO silly in those goggles! Do I really care? Not one bit. My daughter was going blind and now she will see. Praise God!

I can look at her arm and back and see the scars and I can feel sad for her that she has been through so much, or I can remember that my daughter has fought tooth and nail for every breath. She has endured countless pokes and prods and surgeries…I can’t name them all, it would take too long. Surely I can continue to pump. Surely I can be patient while she learns to eat. Surely I can keep track of all the information given to me from all the drs and I can manage to fit in everything they recommend into every day. Surely I can manage for a few more months to live with very little sleep. She has fought so hard for so long, surely I can fight for her.

I don’t want a normal baby. I want Emily. I don’t want a normal life. I want whatever Emily has to offer. She is mine and I wouldn’t trade her or any of her issues for anything. She is beautiful! She and everything we have been through because of her is a miraculous reminder of all things God and therefore all things good. If I need a reminder of God’s faithfulness, love, grace, mercy, compassion, strength…anything…I just look at my little girl.

Emily's Status

So four major dr visits in the last week have given us a clearer view of Emily now. There is good news and bad news on all fronts. She is eight pounds five ounces and 20.75 inches long.

The opthomologist looked at her eyes and since she is too young to be able to tell us if she is actually seeing anything, they give her glasses based on the health of the eye only. Her eyes have the capability of seeing at -10.5 and -9.5. For those who don't know what that means, it's pretty bad. I tried on her glasses and couldn't even make out objects in the room, I just saw some light and dark spots. I thought M's eyesight was bad and his are -2.5 and -3.0. Anyway, we need to get glasses for her NOW so that her brain doesn't start ignoring the messages sent to it from the eyes. If she doesn't start tracking in another month or so, then we will get worried and take more action. Otherwise, we wait two more months. Soooo...bug eyes will become goggle eyes! :) Man I love that little girl!

The GI specialist says her weight gain is good but not as high as we want it. She is supposed to gain between 20-30 grams a day and she is gaining 18 grams. So we are doubling her safflower oil and letting her sleep as long as she wants at night. The second part shocked me a little but he thinks she will eat more if she is rested and hungry than in the lazy state we wake her up in. Yipee! More sleep for me...it has been six months since I slept more than 3 hours at a time (minus a couple spells here and there from a willing husband or mother).


The rest is pretty boring so if you want more details, give us a call or email. Thank you for your continued prayers.