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!
Friday, June 12, 2009
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 attempt...it makes me laugh. 
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 attempt...it 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.
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.
Sunday, May 31, 2009
May 31
Your eye is continuing to heal, but we are going to continue another week of antibiotics to be on the safe side. Today we tried the contacts again--and once again one popped out. This time we found it in your crib, hopefully in time to save it. You are so much more alert when your contacts are in--I love seeing my baby so curious!
This week we received sad news. One of our SLOS friends died mid-April. His name is Mathias and would have been 2 years old in June. His mom says he was doing great, outgrowing the vomiting, always laughing and happy, with his personality coming out more and more. I remember back in January when she wrote to tell us he was not recovering well from his cleft palate/ear tube surgery. She had asked the surgeon to give him FFP, a blood product that is recommended for kids with weaker immune systems, but he refused to even discuss it with the specialists. I was so frustrated for her at the time. Of course, we don't know if that would have made a difference, but it is a shame his mommy has to wonder. He just couldn't get over the infections, and one morning he wasn't looking like himself. As she was packing his food and meds to take him to the ER, he died peacefully in their home. Turns out he had pneumonia which led to congestive heart failure--number one cause of death for SLO kids.
My heart hurts for his family. Even though he had been having a tough time since the surgery, I am sure they didn't see this coming. He only had a temp of 99 the night before! A couple weeks ago you had a much higher temp and after calling the on-call doc, we decided to keep you home rather than risk whatever was hanging out in the ER waiting room. You are always such a healthy baby, I think I must take it for granted. You are such a trooper all the time, I think of you as being so strong. But you are still a tiny baby, and so now when you run a high fever and aren't yourself, I won't risk it and will just take you to Texas Children's. It's inconvenient, but better than waiting it out and regretting it later. Poor Mathias' mommy is blaming herself for doing what any of the rest of us would have done. I can't even imagine her pain, and I pray for her family continually.
This week we received sad news. One of our SLOS friends died mid-April. His name is Mathias and would have been 2 years old in June. His mom says he was doing great, outgrowing the vomiting, always laughing and happy, with his personality coming out more and more. I remember back in January when she wrote to tell us he was not recovering well from his cleft palate/ear tube surgery. She had asked the surgeon to give him FFP, a blood product that is recommended for kids with weaker immune systems, but he refused to even discuss it with the specialists. I was so frustrated for her at the time. Of course, we don't know if that would have made a difference, but it is a shame his mommy has to wonder. He just couldn't get over the infections, and one morning he wasn't looking like himself. As she was packing his food and meds to take him to the ER, he died peacefully in their home. Turns out he had pneumonia which led to congestive heart failure--number one cause of death for SLO kids.
My heart hurts for his family. Even though he had been having a tough time since the surgery, I am sure they didn't see this coming. He only had a temp of 99 the night before! A couple weeks ago you had a much higher temp and after calling the on-call doc, we decided to keep you home rather than risk whatever was hanging out in the ER waiting room. You are always such a healthy baby, I think I must take it for granted. You are such a trooper all the time, I think of you as being so strong. But you are still a tiny baby, and so now when you run a high fever and aren't yourself, I won't risk it and will just take you to Texas Children's. It's inconvenient, but better than waiting it out and regretting it later. Poor Mathias' mommy is blaming herself for doing what any of the rest of us would have done. I can't even imagine her pain, and I pray for her family continually.
Sunday, May 24, 2009
May 24
Your eye is starting to look a little better, Boo Bear. Still red and swollen, but not nearly as much. I am hopeful that by Wednesday it will be well enough to avoid surgery.
Not much else going on these days. We practice eating a couple times a day, and it is going okay. I think you really do want to eat. Your tongue is learning to go to whichever side the food is on, you "chew" the food and slowly move it to the back of your mouth, and you are getting several good swallows in. You usually tolerate a few bites of very thin rice cereal mixed with some fruit before you get gaggy and try to throw up. Sometimes playing your "Jesus Loves Me Reindeer" will distract you enough to get through those moments. But inevitably you throw up and get angry. We are careful to encourage you to eat a few more bites before we stop, because I don't want you to figure out that throwing up is the way to end your feeding session.
Another thing we are working on is holding your head down. We all know what a pro you are in holding it back, but when it comes to tucking your chin, you don't have any practice. And that means you don't have any muscle strength. If we could get you to hold your head steady while looking down, we would make big progress in learning to support your head on your own. Of course, because of your eye infection we can't put in your contacts. But we will get there little one.
Tonight you threw up on Mama for only the second time in your life--that is very impressive considering you throw up several times a day! What a considerate baby you are!
Not much else going on these days. We practice eating a couple times a day, and it is going okay. I think you really do want to eat. Your tongue is learning to go to whichever side the food is on, you "chew" the food and slowly move it to the back of your mouth, and you are getting several good swallows in. You usually tolerate a few bites of very thin rice cereal mixed with some fruit before you get gaggy and try to throw up. Sometimes playing your "Jesus Loves Me Reindeer" will distract you enough to get through those moments. But inevitably you throw up and get angry. We are careful to encourage you to eat a few more bites before we stop, because I don't want you to figure out that throwing up is the way to end your feeding session.
Another thing we are working on is holding your head down. We all know what a pro you are in holding it back, but when it comes to tucking your chin, you don't have any practice. And that means you don't have any muscle strength. If we could get you to hold your head steady while looking down, we would make big progress in learning to support your head on your own. Of course, because of your eye infection we can't put in your contacts. But we will get there little one.
Tonight you threw up on Mama for only the second time in your life--that is very impressive considering you throw up several times a day! What a considerate baby you are!
Wednesday, May 20, 2009
May 20
You got to spend the night at Grammy and Papaw's last Friday! You have stayed overnight one other time when Daddy and I went to a conference, but this is the first time you have been gone while we were at home. It was so strange for Daddy and I to come home from work and you not be here. All evening I kept wandering into the living room and your bedroom to check on you, only to realize you weren't here. We definitely missed your sweet baby presence.
Monday we had a day full of doctors appointments. Your blood pressure was perfect! Since you haven't grown very much still (under 13 lbs) we don't feel comfortable cutting the dosage. But the theory is that you will slowly outgrow the hypertension, and wean yourself off the meds.
That morning you woke up with a swollen, red left eye. That's your "good" eye. The right eye turns inward and doesn't dilate on it's own--we see the doctor about it on June 11. But your left eye does a great job focusing and I know you see well out of it. So when it looked bad on Monday, I was a little concerned. However, you didn't have a fever and the pediatrician didn't seem to be super worried. I thought it was another sty, so I have been treating it as such. This morning it didn't look any better, so I called to get an appointment with Dr. Urso. He doesn't think your stitches from the ptosis surgery should be infected or rejected, because we should be past that window. All your wounds have been healed well for a couple weeks now! But anything is possible. Remember how Dr. Bloss said he has only had one other child in 30+ years have both anal stenosis and Hirschprung's? Yeah, Dr. Urso has only had one other child get an infection after the operation.
So here is the deal. Antibiotics for 10-14 days. We see Urso next week. If it doesn't get better quickly, we will have no choice to go back into the OR, remove the sling, wait for you to heal up, and then try again. We REALLY don't want that. So I will do my part with drops and meds and warm compresses and lots and lots of prayers. You do your part by telling all your white blood cells to go to your left eyelid and do their thing. Is that a plan?
Monday we had a day full of doctors appointments. Your blood pressure was perfect! Since you haven't grown very much still (under 13 lbs) we don't feel comfortable cutting the dosage. But the theory is that you will slowly outgrow the hypertension, and wean yourself off the meds.
That morning you woke up with a swollen, red left eye. That's your "good" eye. The right eye turns inward and doesn't dilate on it's own--we see the doctor about it on June 11. But your left eye does a great job focusing and I know you see well out of it. So when it looked bad on Monday, I was a little concerned. However, you didn't have a fever and the pediatrician didn't seem to be super worried. I thought it was another sty, so I have been treating it as such. This morning it didn't look any better, so I called to get an appointment with Dr. Urso. He doesn't think your stitches from the ptosis surgery should be infected or rejected, because we should be past that window. All your wounds have been healed well for a couple weeks now! But anything is possible. Remember how Dr. Bloss said he has only had one other child in 30+ years have both anal stenosis and Hirschprung's? Yeah, Dr. Urso has only had one other child get an infection after the operation.
So here is the deal. Antibiotics for 10-14 days. We see Urso next week. If it doesn't get better quickly, we will have no choice to go back into the OR, remove the sling, wait for you to heal up, and then try again. We REALLY don't want that. So I will do my part with drops and meds and warm compresses and lots and lots of prayers. You do your part by telling all your white blood cells to go to your left eyelid and do their thing. Is that a plan?
Wednesday, May 13, 2009
Visiting the Nursing Home
This past weekend you, Daddy and I went up to Copperas Cove, TX in order to stay over night in a nursing home there. We needed to complete a 24 hour stay to be eligible for the special Medicaid program we are on, and it is the only one in Texas to accept babies.
We had a good time that night, just the three of us hanging out. It was nice to have nothing else to do but sit in a room and be together. Early in the evening you and I were cuddling on the bed, and you rolled in my direction. When you put your hand on my face, you started laughing. Daddy asked if you thought my face "looked" funny and you laughed even harder. That made Daddy and I laugh, which made you laugh, and for several seconds we were all laughing together at the same thing. It was our first family joke! It was the best Mother's Day gift you could have given me.
I love how you are beginning to laugh at more and more things. I don't think it will ever lose its effect on Daddy and me. Everytime you start to chuckle, we stop what we are doing and focus on getting you to do it again.
We had a good time that night, just the three of us hanging out. It was nice to have nothing else to do but sit in a room and be together. Early in the evening you and I were cuddling on the bed, and you rolled in my direction. When you put your hand on my face, you started laughing. Daddy asked if you thought my face "looked" funny and you laughed even harder. That made Daddy and I laugh, which made you laugh, and for several seconds we were all laughing together at the same thing. It was our first family joke! It was the best Mother's Day gift you could have given me.
I love how you are beginning to laugh at more and more things. I don't think it will ever lose its effect on Daddy and me. Everytime you start to chuckle, we stop what we are doing and focus on getting you to do it again.
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