As it turns out, Carleigh's SB lesion being sunken is just fine. The neurosurgery nurse (Delia) that's in my SB group said that it's just a sign that the shunt is working well and that if we have Carleigh sitting up for long, it will start bulging again. The morning after it had been sunken, it was back to it's bulging self. It's just a small bulge, nothing in comparison to what it was before the shunt.
Carleigh has been a real night owl lately. I think so many visits to the hospital have her confused on nights and days. She's being an angel right now, laying here on my lap sleeping. I should be taking advantage and sleeping myself, but with two kids and busy days, this is my "me" time. :o)
Carleigh has been eating up a storm! I am hoping that on the next weight check on March 2nd she is well over 8 lbs. and maybe even at 9! Her cousin is due next month and we hope Carleigh weighs more at 4½ months old than Meagan weighs at birth! lol
The Life of An Angel: Carleigh Lauryn Grace
2/25/2000
2/23/2000
I thought I had better make a post so you all wouldn't worry and think we're in the hospital AGAIN! :o)
Carleigh is doing just fine. She is now battling her first cold. I had the feeling she would end up with one, because her brother had one while she was in the hospital. She started having a really runny nose on Sunday night. I called the doctor on
Monday. Our doctor is out this week, so the doctor I talked to said not to put Carleigh on any medication. He said with her heart problems an antihistamine would probably not be good for her. So we're just riding this one out. My main concerns were RSV, which he said with her nose running like it is, it doesn't sound like RSV, and also, she is on oxygen and we are afraid her nose will plug up and she won't be able to get her oxygen.
Also, last night, another something major happened. John was changing her diaper and her SB lesion is sunken!! It looks so freaky! We don't know if it should be sunken like that, so I'm in process of finding out through my SB email group. The good thing about her lesion being sunken is that she was moving BOTH legs WILDLY!! I don't know if some stress was relieved or what, but it was so good to see our little girl moving both legs. Her left foot is clubbed pretty badly and we thought
she might never move her left leg well, if any at all. She's got that knee bending down really well though!! :o)
That's about all from "Carleigh Central". I'll try not to wait so long to post next time. But hey, I'm a busy Mom!! :o)
Carleigh is doing just fine. She is now battling her first cold. I had the feeling she would end up with one, because her brother had one while she was in the hospital. She started having a really runny nose on Sunday night. I called the doctor on
Monday. Our doctor is out this week, so the doctor I talked to said not to put Carleigh on any medication. He said with her heart problems an antihistamine would probably not be good for her. So we're just riding this one out. My main concerns were RSV, which he said with her nose running like it is, it doesn't sound like RSV, and also, she is on oxygen and we are afraid her nose will plug up and she won't be able to get her oxygen.
Also, last night, another something major happened. John was changing her diaper and her SB lesion is sunken!! It looks so freaky! We don't know if it should be sunken like that, so I'm in process of finding out through my SB email group. The good thing about her lesion being sunken is that she was moving BOTH legs WILDLY!! I don't know if some stress was relieved or what, but it was so good to see our little girl moving both legs. Her left foot is clubbed pretty badly and we thought
she might never move her left leg well, if any at all. She's got that knee bending down really well though!! :o)
That's about all from "Carleigh Central". I'll try not to wait so long to post next time. But hey, I'm a busy Mom!! :o)
2/15/2000
We have just been through a major ordeal! On Thursday, the 10th, I called the neurosurgeon's office because Carleigh had had a rough night. Her shunt tubing was still swollen around it. They told me to bring her to the hospital asap and not to feed her in case they had to sedate her. I knew that a shunt revision was coming - two weeks after the original surgery. Not a good thing. Carleigh is not the best candidate in the world for anesthesia, and having it two times in two weeks was not going to be fun!
We arrived at St. Louis Children's at about 3:00 p.m. Carleigh had to have a CT scan and x-rays. Dr. Park and Dr. Rivet decided that Carleigh's shunt needed to be moved to a different place because it was not draining effectively. Our fear of another surgery was topped off with the knowledge that Carleigh would now have to have another incision on her head. They decided to admit her to the hospital that night, but to wait until morning for the surgery. Friday morning we awoke to more swelling. Of course, that overwhelming urge to be sick had found me again.
We hoped for the same anesthesiologist as before, but it didn't happen. Surgery lasted about 1 1/2 hours. When Dr. Park came out he said Carleigh did "ok" and would be going to the PICU. (That was not the original plan.) He told us Carleigh needed to stay on the ventilator for awhile. We knew something was "up" since he had said she did "ok" and for the first surgery he said she did "good".
When the anesthesiologist came out, she told us what had happened. The combination of swelling and anesthesia made it impossible for Carleigh to breathe on her own.
Her airway was blocked. We accepted that shock fairly well and were happy to walk with her as they wheeled her to PICU.
Nothing ever could have prepared us to see Carleigh on a ventilator. Our sweet baby's face was covered with tape and tubes. It was almost too much to handle. We waited outside the PICU for them to get her "settled". We waited and waited. I called into the PICU two or three different times to see what was taking so long and never really got an answer. Once we were allowed in the PICU, we were told what had happened.
During transport from the recovery room, Carleigh's vent was somehow moved, loosened, or pulled out. When that happened, she not only lost the ability to breathe, but lost oxygen too. They had to sedate her, temporarily paralyze her, and reintubate her. During this time, Carleigh's heart decided to stop working! It was a mad rush to get the appropriate medication to get her going again.
My whole world collapsed then and there. We had never had any problems with her heart and I was afraid all the stress on her was starting to take its toll. I was thankful that there were doctors there who knew what they were doing, and also thankful that we were at St. Louis Children's where they wouldn't deny her the ventilator when she needed it.
The plan was to remove the vent on Saturday after they had weaned her down from 20 breaths per minute. They turned the machine off to see what she would do. She did well for awhile, but then got mad and held her breath. Unacceptable. The vent was turned back on and we waited until Carleigh was ready. On Sunday at around noon, with MANY people present (including Mommy and Daddy!), the ventilator was removed with success!!
Carleigh spent Sunday night in the PICU for observation and on Monday at around 4 p.m. was moved to 12 W. We came home today, with our little fighter and her new shunt. Everything is going well and Carleigh hasn't had any more episodes with her heart.
Things felt different this time. We rushed off to the hospital without me knowing in advance. It felt different knowing that all of Carleigh's faithful Internet friends wouldn't be sending special surgery prayers in with her. I am thankful that all of your usual prayers were enough to help her through. We appreciate all of you so much!!
We arrived at St. Louis Children's at about 3:00 p.m. Carleigh had to have a CT scan and x-rays. Dr. Park and Dr. Rivet decided that Carleigh's shunt needed to be moved to a different place because it was not draining effectively. Our fear of another surgery was topped off with the knowledge that Carleigh would now have to have another incision on her head. They decided to admit her to the hospital that night, but to wait until morning for the surgery. Friday morning we awoke to more swelling. Of course, that overwhelming urge to be sick had found me again.
We hoped for the same anesthesiologist as before, but it didn't happen. Surgery lasted about 1 1/2 hours. When Dr. Park came out he said Carleigh did "ok" and would be going to the PICU. (That was not the original plan.) He told us Carleigh needed to stay on the ventilator for awhile. We knew something was "up" since he had said she did "ok" and for the first surgery he said she did "good".
When the anesthesiologist came out, she told us what had happened. The combination of swelling and anesthesia made it impossible for Carleigh to breathe on her own.
Her airway was blocked. We accepted that shock fairly well and were happy to walk with her as they wheeled her to PICU.
Nothing ever could have prepared us to see Carleigh on a ventilator. Our sweet baby's face was covered with tape and tubes. It was almost too much to handle. We waited outside the PICU for them to get her "settled". We waited and waited. I called into the PICU two or three different times to see what was taking so long and never really got an answer. Once we were allowed in the PICU, we were told what had happened.
During transport from the recovery room, Carleigh's vent was somehow moved, loosened, or pulled out. When that happened, she not only lost the ability to breathe, but lost oxygen too. They had to sedate her, temporarily paralyze her, and reintubate her. During this time, Carleigh's heart decided to stop working! It was a mad rush to get the appropriate medication to get her going again.
My whole world collapsed then and there. We had never had any problems with her heart and I was afraid all the stress on her was starting to take its toll. I was thankful that there were doctors there who knew what they were doing, and also thankful that we were at St. Louis Children's where they wouldn't deny her the ventilator when she needed it.
The plan was to remove the vent on Saturday after they had weaned her down from 20 breaths per minute. They turned the machine off to see what she would do. She did well for awhile, but then got mad and held her breath. Unacceptable. The vent was turned back on and we waited until Carleigh was ready. On Sunday at around noon, with MANY people present (including Mommy and Daddy!), the ventilator was removed with success!!
Carleigh spent Sunday night in the PICU for observation and on Monday at around 4 p.m. was moved to 12 W. We came home today, with our little fighter and her new shunt. Everything is going well and Carleigh hasn't had any more episodes with her heart.
Things felt different this time. We rushed off to the hospital without me knowing in advance. It felt different knowing that all of Carleigh's faithful Internet friends wouldn't be sending special surgery prayers in with her. I am thankful that all of your usual prayers were enough to help her through. We appreciate all of you so much!!
2/09/2000
We went to the neurosurgeon today to have Carleigh's shunt checked. I had been concerned because there was some puffiness around her shunt tube. The neurosurgeon
looked at it and said some puffiness was normal a couple weeks after surgery. His concern is that Carleigh's soft spot is not as sunken as he thinks it should be. We are supposed to sit Carleigh up as much as possible for the next two weeks to see if we can get rid of the puffiness. We go back to the neurosurgeon then. If her soft spot is not sunken more, she will probably have to have a shunt revision. That means another surgery - not something her Daddy and I are looking forward to! Also, if the puffiness doesn't get better, or gets worse than what it already is, we are supposed to go to St. Louis sooner.
The only good thing about this trip is that Carleigh weighed 8 lbs. 6 ozs. I celebrate that with mixed emotion. I feel that part of her weight gain is from fluid collecting because the shunt isn't working. Of course, right now I am paraniod, scared of another surgery - so I am hoping that the weight gain is all weight and not fluid.
At least I don't have to worry about her getting a feeding tube now. The pediatrician was going to consider it if Carleigh hasn't made a weight gain by this Friday. It seems like right now we have one accomplishment, and then we step a little backward with something else.
One thing never changes though, and that's our love for Carleigh. No matter if she is being our perfect little girl, "Princess Grouch", or "Grumbalina", we love her more and more each and every day!
looked at it and said some puffiness was normal a couple weeks after surgery. His concern is that Carleigh's soft spot is not as sunken as he thinks it should be. We are supposed to sit Carleigh up as much as possible for the next two weeks to see if we can get rid of the puffiness. We go back to the neurosurgeon then. If her soft spot is not sunken more, she will probably have to have a shunt revision. That means another surgery - not something her Daddy and I are looking forward to! Also, if the puffiness doesn't get better, or gets worse than what it already is, we are supposed to go to St. Louis sooner.
The only good thing about this trip is that Carleigh weighed 8 lbs. 6 ozs. I celebrate that with mixed emotion. I feel that part of her weight gain is from fluid collecting because the shunt isn't working. Of course, right now I am paraniod, scared of another surgery - so I am hoping that the weight gain is all weight and not fluid.
At least I don't have to worry about her getting a feeding tube now. The pediatrician was going to consider it if Carleigh hasn't made a weight gain by this Friday. It seems like right now we have one accomplishment, and then we step a little backward with something else.
One thing never changes though, and that's our love for Carleigh. No matter if she is being our perfect little girl, "Princess Grouch", or "Grumbalina", we love her more and more each and every day!
2/02/2000
Exciting news from "Carleigh Central".... Yesterday, our PAT teacher was here working with her big brother. I was sitting on the couch with Carleigh laying beside me, not really paying any attention to her. (I THOUGHT she was sleeping!) Amy looked over at her and said, "Wow! She's really moving a lot! She will be rolling over before long." I looked over at Carleigh and she was moving her arms wildly, as usual. But then I noticed her blanket was moving! I pulled it off her legs, only to see her bending and straightening her knees!!
I was so excited! Usually when Carleigh moves her legs, it is basically from her waist with both legs extended outward, close together. Yesterday, though, with the bending knees, she did more of a kicking motion. All of this from a baby who is SUPPOSED to be paralyzed from the waist down. (That's what they told us in the
NICU.)
So, now we are trying to push the issue to get Physical Therapy available to us now, instead of having to wait until Carleigh is six months old. I believe that Carleigh
will learn to walk - you just wait and see!! :o)
I was so excited! Usually when Carleigh moves her legs, it is basically from her waist with both legs extended outward, close together. Yesterday, though, with the bending knees, she did more of a kicking motion. All of this from a baby who is SUPPOSED to be paralyzed from the waist down. (That's what they told us in the
NICU.)
So, now we are trying to push the issue to get Physical Therapy available to us now, instead of having to wait until Carleigh is six months old. I believe that Carleigh
will learn to walk - you just wait and see!! :o)