Monday, June 22, 2009

June 22

You and I were brave girls this morning and went to church for VBS all by ourselves. The furthest we have ever driven alone is to the grocery store, and we can pretty much get there by driving through the neighborhood the entire way. I haven't gone any further than that because when you throw up in the car, there is no way you can handle it by yourself--someone has to be back there to suction it out. You would think sitting up in your seat would make it easier to run out, but the liquid just pools up in your mouth and it is so easy for you to choke. It's inconvenient for everyone to have someone come out to the house to ride places with us, so I think it is time for us to start branching out on our own. You did well today! We got to church this morning without any incidents. Then on the way back you started warning me that you were going to be sick, and just as we turned into our neighborhood it began. Pretty good timing. I know the more we drive around the more comfortable I will be doing it. I remember how I used to stress just riding in the back seat with you, knowing I might have to suction at any moment. I don't think twice about that now. This will be another lesson in patience for me. I will have to leave plenty early, and take routes that have an easy place for me to pull over to park. That means no freeways until the vomiting gets under control. But it will be so nice to have access to stores, church and other nearish places at any time. We are growing up, you and I!

Wednesday, June 17, 2009

June 17

Tonight Mama went to church and ran an errand for Daddy, and by the time I got home you were already protesting bedtime in your crib. I took a shower, and then started looking at some video clips of you laughing and being silly. I had an urge to see the real thing, and you were still fussing, so I got you out of bed to cuddle for a minute. It was a special treat, because usually when you are put to bed, you stay there. I took you into my room to snuggle for a few minutes, and when I did you gave me big smile after big smile. I think it was because you were glad to see me, but Daddy says it was your mischievous "I got my way because I cried enough" smile. Say it isn't so! But really, I don't care. I would do anything for those huge, unsolicited smiles!

This picture was taken a couple nights ago at a spaghetti dinner for Mommy's swim team. You were making a really cute, happy face and we tried to catch it on the camera. But just as Daddy snapped the photo you turned into a grinch baby! Where's the love??

Monday, June 15, 2009

June 15

I want to throw you a big party every year for your birthday. I think it is important to celebrate each year we have with all the people who love you. My vision is to eventually do a big annyal fundraiser in June for the SLO Foundation. But this year I took too long in getting my act together. So your party will be in July, rather than actually near your birthday. And while I am hoping it will be big on people, it won't be too big on effort. We are only doing an ice cream social, but I think we will have lots of fun!

So in the meantime we had a small celebration for your birthday with our family on Saturday. Bobbye Adams is the Cake Ladye and she made the cookies for your baby shower. When you were just a couple months old she sweetly offered to give you your first birthday cake. It was beautiful and delicious and had a lambie on it! I put a taste of the frosting on your mouth and hands, hoping you would get your face a little messy. Nope, you are a girly girl and weren't going for the mess.

You received a bunch of cute new outfits and many great toys with plenty of noise and lights to get your attention. I know that eventually you won't be a good sleeper, so I am hoping you can start learning now how to entertain yourself. You are just going to have to learn that even though you don't need much sleep, everyone else does. These toys are a good start!

Friday, June 12, 2009

June 12

Yesterday we went to a new opthamologist for you. I liked her a lot--while she wasn't particularly warm, she was very intelligent and didn't dumb things down for me. We went to her because I was concerned for the way your right eye turns in and Dr. Urso told us she was the best. Already the pupil had issues in the past dilating, so in an early surgery it was made so that the pupil would stay dilated always. I haven't been certain of your vision in that eye for awhile, and knew my hopes were resting on the left one. Our new doctor confirmed what I already knew deep down about the right--it has lost all of it's vision. Maybe you see light and dark, just shadows, but that would be all. It was disappointing to hear, even though it wasn't surprising. The worst part is that she suspects your vision was fine to begin with, but that it was lost due to a surgery you had at less than 2 months old. When your cataracts were removed, scar tissue formed and it was two weeks later when you went back in to have it removed. Those two weeks are what she believes did it. I understand every surgery can't go perfectly, and that overall we have been extremely fortunate. Still, I hate that it wasn't taken care of sooner.

The good news is that you totally fine with one good eye, and your other eye is perfectly healthy. When I asked long term how it would hold you back, she said the only type of thing people with one eye can't do is play softball. This also means the surgery I was expecting to correct that muscle is futile. Since you can't see with it, that eye will continue to wander no matter how many surgeries you have. She did suggest that we never risk a lens implant with your good eye, and just continue to use contacts or glasses your entire life. And it makes sense. We have to protect the vision in this left eye at all costs, and it isn't worth chancing more surgeries than are absolutely necessary.

We are ordering new contacts for you...she says your current ones let you focus on long distance in your left eye, and close up with your right. Your entire world is within a couple feet, so now that we know your right eye isn't functional, we need to switch that around. And then I bet you are an even happier baby!

Tuesday, June 9, 2009

June 9

One year old today.

It hardly seems like that much time has gone by. I can feel the flood of emotions, remember most every conversation, recall every thought as if it were yesterday. If I think on them longer than a quick minute, the tears come back faster than I care for. Even though so much healing has taken place in the last year, for all of us, those emotions can still feel a little raw.

That first week of your life, the doctors were finding multiple health problems every day. Daddy had a chart on the dry erase board of my hospital room, and on it we had all your body parts listed with the problems next to it. We learned more medical terms than I ever cared to know, and it was all so overwhelming, so unexpected, so devastating. The only thing that had a check mark was your spine. Grammy said, “At least she has a strong backbone!” Little consolation. We didn’t know if the doctors would find something more serious, and we didn’t know what to expect for your life expectancy.

I reread some my letters to you from that first week or so. I don’t read any of the despair that I felt at the time. Specifically, I think about the night I first left the hospital without you. In my post on June 11 I just said it was the hardest thing I had to do. But I remember sitting in the rocker with you, watching the clock tick to the eleven o’clock shift change, dreading that time since I knew Daddy would make me go home. And he was right to make us go. But when the time came I felt like it had snuck up on me, and I buried my head into your neck, crying, not knowing how anyone could expect me to just walk out of there. When I finally made it out the doors of the NICU, I collapsed into Daddy and sobbed (really wailed) the entire way home and all night long. You aren’t supposed to leave the labor and delivery ward without a baby.

On June 12 I made a small comment that your hearing test came back normal. Grammy and Papaw were at the hospital that morning while Daddy and I got some things packed up to take to Mema’s where we would be staying. Grammy texted me the news that your ears were ok. Since you had been so unsresponsive to the many loud NICU sounds around you, I had been convinced before then that you would be deaf, in addition to essentially blind. When the good news came I literally collapsed on the bed in tears of relief. It is memories like those that still hurt when I think back…

I am not sure why I wasn’t so candid back then. I guess because originally I expected you to read this when you got older. Now I know that short of a true miracle, you won’t be a reader. You won’t read this until we get to heaven, and maybe then I can read it to you myself. At that point you will know my heart, know my intentions. I am not concerned that your adolescent self will get your feelings hurt over an emotion that I felt or something that I said.

The last year has been the most difficult of our lives with more heartache than we bargained for, but at the same time it has been by far the most joyful. Although you are still small (not quite 13 pounds) you have grown so much. You are looking longer, and are definitely much stronger and more active. In the picture at the top of the blog, Lambie looks so big next to you! You were very lethargic without much strength and would be completely limp when we held you. These days I am pretty sure that you would get up and walk away if you could. On the floor you kick and scootch and stretch yourself in circles across the rug. After something like ten surgeries, most everything has been corrected. As far as I know, we only have a few eye surgeries and a cleft palate repair to go, and neither are in the immediate future as of now. Overall you are such a healthy baby, and I am so grateful that your immune system seems so strong. Some milestones that come so easily to other babies call for a big celebration for us. I feel like they are so much sweeter since we work so much harder.

And you are happy! For about a week and a half now you have worn your contacts everyday. I am still not loving how your left eye looks, but at a year old, you have still barely had the chance to see. At this point I feel like your contacts are non-negotiable, and I was beginning to worry if we had already missed the window for your eyes to develop properly. But over the last week you have blossomed by wearing your contacts, and have been such a smiley, giggly girl! A few times after I put your contacts in, you would look at me and give me a big smile and laugh. Since I was pretty sure you were smiling out of recognition, Daddy and I put you to the test on Saturday. I was at a swim meet all morning, so when you woke up for your nap Daddy got you out of bed and started changing you. Without saying a word, I walked up to you and put my face on your level to where you could focus on it. Sure enough, I got a big grin! Today Daddy tried the same thing when he got home for work, and you smiled at him also! I know you can recognize our faces and are glad to see us. When you smile, your entire face smiles and that is my favorite thing in the world!

One year Audrey. One difficult, tear-filled, wonderful, life-changing year. And I wouldn’t change any of it. My prayer is that we have many more to come. But since we haven’t been promised tomorrow, we are going to just continue to enjoy each day that we do have because they are such a blessing. YOU are such a blessing.

Happy birthday Love!

Since I didn’t get to hold you last year at 5:33p, I was determined to hold you and get a picture with you at that time today. Here is our birth minute photo—we caught a small smile!

And here is your pic with Daddy—we tried several times to get a good one but you were both done. This was our final makes me laugh.

Wednesday, June 3, 2009

June 3

I can't believe a year ago yesterday was your due date. We were hoping that you would come on time, so that your birthday would be June 2, Grammy's would be June 3, and Mema's would be June 4. But after going to the doctor that morning, it was clear you didn't plan on making your entrance any time soon, so Daddy and I continued to put off packing our hospital bag. Daddy was bummed, because he thought that if we went into labor on our own he would get to run red lights and speed. Silly Daddy--too many movies for him!

I was just recently sent this picture of you and Daddy sleeping on the couch at Honey's house. It is from a few months ago, and I think you both are so sweet. I don't know how y'all sleep together so well! You and I can't sleep together to save our souls. You toss and turn and smack me in the face while my arm falls asleep and my neck gets cramped and all I want to do is turn away from you. Fortunately, the only chance you have of sleeping in our bed is if we are traveling, and when that happens I just stick you next to Daddy. And every time the two of you are asleep before I am even close.