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.
Sunday, May 31, 2009
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.
Wednesday, April 29, 2009
April 29
I forgot to show you this picture from the morning of your surgery. Remember how I told you that we missed each other all day Thursday? Well Friday morning Daddy got you out of bed while I got dressed and packed to head to the hospital. And when I came in to say good morning, you kept smiling and smiling at me! I am sure part of it was that you were excited to get your eyes fixed. But I think really you were just glad to hear I was around. And the fact that you smiled like that at me at 4:30 in the morning says volumes...you and I are not morning girls. That smile totally made my day! This was just one of the many big grins we caught on camera.
And this is a video of you from tonight. Daddy was doing his ab excerises on the floor next to you and you thought it was so funny. You laughed for several minutes at his breathing. Cute, cute baby laugh. If that isn't motivation for Daddy to do his work outs, I don't know what is!
Sunday, April 26, 2009
April 26
Hey Sweetness!
I am so happy to say that the surgery on Friday actually happened and you have your eyelid lift! I was worried for that morning because you weren't taken away for our 7:30 surgery until about 9:30. Whenever we run behind schedule, your veins shrivel from dehydration, and a very difficult stick becomes nearly impossible. In the past we have had one surgery cancelled because they couldn't start an IV, and a couple others that have taken at least a dozen attempts. I kept warning the nurse about our past problems while we were waiting, but there was nothing that could be done because our doctor had an emergency 6:00a surgery and was still in the OR. Sure enough, when it was over the anesthesialogist apologized for turning you into a pin cushion; Daddy and I came home to count 27 stick marks. I am just so grateful they finally got one, because if they had cancelled this surgery, it might have been months before we got another chance.
Right now you are doing really well. You don't seem to be in too much pain or even very uncomfortable. The worst part for you is going to sleep. You have always been a good sleeper, and go down without a fuss. But the last couple of nights you have cried for 30 mins to an hour, I think out of frustration. You want to go to sleep, but getting there is hard when your eyes won't shut. Thankfully, when you do finally drift off, you seem to sleep well with your eyes open.
This has been a really tough surgery for Mama. We have had either nine or ten surgeries in the last ten months, and this one has been by far the worst for me. Probably not for you--I think the ostomy reversal was the most painful. But I have had a hard time seeing you look the way you do. For the first time I cried when I saw you in the recovery room. Your eyes were so swollen, bruised and bloodied--I wasn't prepared for that. I should have been. Other SLOS parents whose kids have had ptosis surgery warned me that it would look like you had been thrown through a windsheild. I just don't think there was a way as a parent to possibly brace myself for the way you would look. Plus, with your eyes pinned open, your expression (although normal for any other kid) looks surprised and scared to me, since I am used to your cute little sleepy look.
Because of all this, I haven't handled this weekend like I wish I could have. I have somewhat withdrawn from the situation, shied away from being the primary caregiver, and asked Daddy to do most of the dirty work. I went to work for several hours Saturday morning, and when I was home and you cried, suggested Daddy be the one to comfort you. Even when it was up to me, I averted my eyes from you and didn't look you in the face often. I am sorry. It wasn't that I was squemish of the blood or the way you looked. And it definitely wasn't because I didn't want to cuddle you close. It was because it looked so shockingly painful, and I was afraid of hurting you. I have had to do a lot of things for you that caused pain, and have seen you go through more than I would have ever imagined. This one was too much.
I began to question myself a little if this was the right thing to do. I started thinking how well you were doing before the surgery with opening your eyes, and how you loved wearing your contacts. Grammy assures me it was necessary, and while we thought you looked like you were opening your eyes more, those who didn't know you still always thought you were sleeping. And I know how critical this surgery is to being able to hold your head up, which leads to the rest of your development. It was the right choice. But it is a terrible thing to see you go through.
I don't have any pictures for you. Maybe I should have taken a few for other parents whose children will have this surgery, so that have some idea of what to expect. Perhaps it will be easier to see on a child other than their own in order to mentally prepare. And maybe I still will, for their sake. But for me, I have no desire to capture the image on film.
I am not sure how long recovery will last. Already the swelling has gone down quite a bit, the bruising has lightened, and the bleeding has stopped. Your eyes are staying moist, which is the biggest hurdle. And I just keep reminding myself that even though the SLOS group told me it was the most difficult surgery to go through, it had the biggest pay off in the end. Already Daddy and I think you are holding your head straighter, and not as far back.
You and I are so blessed that you have such a strong, sweet Daddy. He took over and did a great job mothering you this weekend. Tomorrow he goes back to work and you and I will be just fine. It helped me to watch how he held you, to see you aren't as fragile as I thought. And the highlight of our weekend was the handful of smiles and laughs you gave us. That shows me more than anything that it looks a lot worse than it feels.
I love you so much, and even though it still isn't very pretty, I love seeing your big, blue eyes. It is going to be so worth it little one, you'll see.
I am so happy to say that the surgery on Friday actually happened and you have your eyelid lift! I was worried for that morning because you weren't taken away for our 7:30 surgery until about 9:30. Whenever we run behind schedule, your veins shrivel from dehydration, and a very difficult stick becomes nearly impossible. In the past we have had one surgery cancelled because they couldn't start an IV, and a couple others that have taken at least a dozen attempts. I kept warning the nurse about our past problems while we were waiting, but there was nothing that could be done because our doctor had an emergency 6:00a surgery and was still in the OR. Sure enough, when it was over the anesthesialogist apologized for turning you into a pin cushion; Daddy and I came home to count 27 stick marks. I am just so grateful they finally got one, because if they had cancelled this surgery, it might have been months before we got another chance.
Right now you are doing really well. You don't seem to be in too much pain or even very uncomfortable. The worst part for you is going to sleep. You have always been a good sleeper, and go down without a fuss. But the last couple of nights you have cried for 30 mins to an hour, I think out of frustration. You want to go to sleep, but getting there is hard when your eyes won't shut. Thankfully, when you do finally drift off, you seem to sleep well with your eyes open.
This has been a really tough surgery for Mama. We have had either nine or ten surgeries in the last ten months, and this one has been by far the worst for me. Probably not for you--I think the ostomy reversal was the most painful. But I have had a hard time seeing you look the way you do. For the first time I cried when I saw you in the recovery room. Your eyes were so swollen, bruised and bloodied--I wasn't prepared for that. I should have been. Other SLOS parents whose kids have had ptosis surgery warned me that it would look like you had been thrown through a windsheild. I just don't think there was a way as a parent to possibly brace myself for the way you would look. Plus, with your eyes pinned open, your expression (although normal for any other kid) looks surprised and scared to me, since I am used to your cute little sleepy look.
Because of all this, I haven't handled this weekend like I wish I could have. I have somewhat withdrawn from the situation, shied away from being the primary caregiver, and asked Daddy to do most of the dirty work. I went to work for several hours Saturday morning, and when I was home and you cried, suggested Daddy be the one to comfort you. Even when it was up to me, I averted my eyes from you and didn't look you in the face often. I am sorry. It wasn't that I was squemish of the blood or the way you looked. And it definitely wasn't because I didn't want to cuddle you close. It was because it looked so shockingly painful, and I was afraid of hurting you. I have had to do a lot of things for you that caused pain, and have seen you go through more than I would have ever imagined. This one was too much.
I began to question myself a little if this was the right thing to do. I started thinking how well you were doing before the surgery with opening your eyes, and how you loved wearing your contacts. Grammy assures me it was necessary, and while we thought you looked like you were opening your eyes more, those who didn't know you still always thought you were sleeping. And I know how critical this surgery is to being able to hold your head up, which leads to the rest of your development. It was the right choice. But it is a terrible thing to see you go through.
I don't have any pictures for you. Maybe I should have taken a few for other parents whose children will have this surgery, so that have some idea of what to expect. Perhaps it will be easier to see on a child other than their own in order to mentally prepare. And maybe I still will, for their sake. But for me, I have no desire to capture the image on film.
I am not sure how long recovery will last. Already the swelling has gone down quite a bit, the bruising has lightened, and the bleeding has stopped. Your eyes are staying moist, which is the biggest hurdle. And I just keep reminding myself that even though the SLOS group told me it was the most difficult surgery to go through, it had the biggest pay off in the end. Already Daddy and I think you are holding your head straighter, and not as far back.
You and I are so blessed that you have such a strong, sweet Daddy. He took over and did a great job mothering you this weekend. Tomorrow he goes back to work and you and I will be just fine. It helped me to watch how he held you, to see you aren't as fragile as I thought. And the highlight of our weekend was the handful of smiles and laughs you gave us. That shows me more than anything that it looks a lot worse than it feels.
I love you so much, and even though it still isn't very pretty, I love seeing your big, blue eyes. It is going to be so worth it little one, you'll see.
Thursday, April 23, 2009
April 23
Hey sweet baby, I missed you today.
This morning I left home early for a house closing, and Honey came to stay with you before you even woke up. I came home a little after 2:00, and I had an hour and a half at home before I needed to leave for swim team practice. Of course, it was during your nap time. And when I made it home a little after 8:00, Daddy had you all tucked into bed. I have a whole new respect for working moms! It is tough to see you so little. I love and am grateful for both the real estate and coaching jobs, but the next few weeks are going to be hard on us until the school year ends and summer starts up. We just have too much going on during the week.
Daddy left for the gym, and you started fussing. I like to think it was cause you missed me too. Usually we don't come running when you call out from bed, and so usually you don't call. If you are in your crib, you know it means sleep is your only option. But tonight I just had to go pick you up and cuddle my baby for awhile. After a few minutes we both felt better and you were able to go to sleep.
Which is a good thing because you need your rest for tomorrow! Finally we are having your ptosis surgery! The OR is scheduled for 7:30, so we need to be at the hospital by 5:30. That 4:30 alarm won't make any of us happy, but you are going love the difference when you won't have to hold your head back to see. So sleep sweetly, love. It might not come as easily tomorrow night.
This morning I left home early for a house closing, and Honey came to stay with you before you even woke up. I came home a little after 2:00, and I had an hour and a half at home before I needed to leave for swim team practice. Of course, it was during your nap time. And when I made it home a little after 8:00, Daddy had you all tucked into bed. I have a whole new respect for working moms! It is tough to see you so little. I love and am grateful for both the real estate and coaching jobs, but the next few weeks are going to be hard on us until the school year ends and summer starts up. We just have too much going on during the week.
Daddy left for the gym, and you started fussing. I like to think it was cause you missed me too. Usually we don't come running when you call out from bed, and so usually you don't call. If you are in your crib, you know it means sleep is your only option. But tonight I just had to go pick you up and cuddle my baby for awhile. After a few minutes we both felt better and you were able to go to sleep.
Which is a good thing because you need your rest for tomorrow! Finally we are having your ptosis surgery! The OR is scheduled for 7:30, so we need to be at the hospital by 5:30. That 4:30 alarm won't make any of us happy, but you are going love the difference when you won't have to hold your head back to see. So sleep sweetly, love. It might not come as easily tomorrow night.
Subscribe to:
Posts (Atom)
