A few days have passed and this g tube idea just doesn't seem any better.
A few things to report:
1) Campbell went to the Children's Hospital yesterday to get some labs drawn.
BMP, T4, TSH, CBC
Our pediatrician will get the results, and if anything seems funky then the endocrinologist will see her.
2) We have our second opinion scheduled with another pediatric gastroenterologist in Peoria.
It will be the same day as the surgical consult. Please pray for us on June 30!
3) We have been doing our best to stuff Campbell with calories. Milkshakes, ice cream, hamburgers, things with butter, you name it. We stopped giving her juice and replaced it with yogurt smoothies instead. Juice is an appetite suppressant and it has little calories. Also, her gastro doc put her on a higher calorie pediasure. Didn't even know they made such a thing. He gave us quite a few samples so that should last us a couple weeks. Then I will have to figure out where to buy the stuff, since I know they don't carry it in stores. Pharmacy or online I would suppose. I'm sure its not any cheaper.
But we'll do anything to keep a tube out of her!
Campbell has physical therapy and feeding therapy this week. I'm anxious to talk to our speech path about the g tube to see what she thinks and if she has any ideas for us. They will be doing both a PT eval and a speech eval (she's never had one of those before) so we can see where she is developmentally in those areas.
Eric is confident that Campbell will pull it our here when it counts, like she always does.
He says she is a clutch player.
The Anti-Lebron, if you will.
Sunday, June 19, 2011
Wednesday, June 15, 2011
Just When You Think You Are Out Of The Woods
Campbell saw her gastroenterologist yesterday. She had lost about half a pound since last month. She has been sick with a cold and ear infection, so I wasn't surprised that she hadn't gained weight. But I was surprised that she had lost that much.
He then told me that he would schedule an appointment with the pediatric surgery team so they could discuss a g tube placement for her.
Um. What? She's been sick. That's all. She'll gain it back, I said.
He then produced her growth chart and told me that she falls far below the growth curve, and she's been leveling out over the last few months, rather than climbing.
He went on to explain more about the g tube, the pump, feedings in the night, etc.
I stared in disbelief.
She's just been sick. She's better now, I said.
She needs the g tube, he said. We've done everything we can to increase her calories. We've given her enough time.
You really feel this is necessary??
I absolutely do, he said. If we don't do this, then we run the risk of long term brain development problems.
I just couldn't believe what I was hearing.
Long term brain development. Those words got my attention.
He told me the nurse would be in to schedule our surgical consult. He left the room, and I sat holding my baby.
Crying.
She's been doing so great. We've been seeing him for the past year, along with our feeding therapist. And in that time, Campbell has made tremendous strides. A year ago, she was fighting through her bottles and refusing anything on a spoon. She actually enjoys eating now. I mean, I recognize that she doesn't eat as much as her sister, but I feel like the pediasure and duocal should be making up the difference.
And her energy level is high. I always say she is my cat napper. Honestly she sleeps no more than 40 minutes at any given nap. And she's always the first one up in the morning. 5:30 anyone? She's been walking all over the place lately, and she's just a very active toddler.
I made sure he knew all this.
He just kept saying: she needs the g tube.
I left his office with 2 words on my mind:
Second. Opinion.
I immediately called our pediatrician. After all, he had referred us to this GI doc. I wanted to pick his brain to see if there was anyone else he would recommend.
He suggested making a referral for Campbell to get an endocrinology consult in Peoria. See if there is an underlying metabolic problem.
I was told it takes 48 hours to hear back from the endocrinologist's office, so we are waiting to hear. If we can't get in soon, then we will be heading to Chicago Children's Memorial or St. Louis Children's Hospital for more answers.
We have a surgical consult scheduled for June 30. Its the same surgeon who performed Lenay's hernia repair when she was just 3 pounds in the NICU. We are going to keep this appointment and talk with him about her growth. We'd also like to know more about the surgery and the g tube.
We want to get some answers so we can make an informed decision. We just want to do what is right for our little girl.
He then told me that he would schedule an appointment with the pediatric surgery team so they could discuss a g tube placement for her.
Um. What? She's been sick. That's all. She'll gain it back, I said.
He then produced her growth chart and told me that she falls far below the growth curve, and she's been leveling out over the last few months, rather than climbing.
He went on to explain more about the g tube, the pump, feedings in the night, etc.
I stared in disbelief.
She's just been sick. She's better now, I said.
She needs the g tube, he said. We've done everything we can to increase her calories. We've given her enough time.
You really feel this is necessary??
I absolutely do, he said. If we don't do this, then we run the risk of long term brain development problems.
I just couldn't believe what I was hearing.
Long term brain development. Those words got my attention.
He told me the nurse would be in to schedule our surgical consult. He left the room, and I sat holding my baby.
Crying.
She's been doing so great. We've been seeing him for the past year, along with our feeding therapist. And in that time, Campbell has made tremendous strides. A year ago, she was fighting through her bottles and refusing anything on a spoon. She actually enjoys eating now. I mean, I recognize that she doesn't eat as much as her sister, but I feel like the pediasure and duocal should be making up the difference.
And her energy level is high. I always say she is my cat napper. Honestly she sleeps no more than 40 minutes at any given nap. And she's always the first one up in the morning. 5:30 anyone? She's been walking all over the place lately, and she's just a very active toddler.
I made sure he knew all this.
He just kept saying: she needs the g tube.
I left his office with 2 words on my mind:
Second. Opinion.
I immediately called our pediatrician. After all, he had referred us to this GI doc. I wanted to pick his brain to see if there was anyone else he would recommend.
He suggested making a referral for Campbell to get an endocrinology consult in Peoria. See if there is an underlying metabolic problem.
I was told it takes 48 hours to hear back from the endocrinologist's office, so we are waiting to hear. If we can't get in soon, then we will be heading to Chicago Children's Memorial or St. Louis Children's Hospital for more answers.
We have a surgical consult scheduled for June 30. Its the same surgeon who performed Lenay's hernia repair when she was just 3 pounds in the NICU. We are going to keep this appointment and talk with him about her growth. We'd also like to know more about the surgery and the g tube.
We want to get some answers so we can make an informed decision. We just want to do what is right for our little girl.
Thursday, June 9, 2011
I'm Hitting the Road Jack :)
Summer has begun! Noah is out of school and I'm out of a job :)
Yes I quit my job 2 weeks ago. I was only supposed to work there for 6 months while I finished my last semester of college, and somehow I ended up staying 24 times longer (12 years!) What is up with that.
So we are pretty busy. Noah is playing baseball in 2 different leagues. He is taking swim lessons. He has basketball camp.
And I am his chauffeur :)
Swim started this week. Lessons are every day Mon-Thurs. The pool offers Toddler Time at the same time, so I figured that would be a good way for the babies and I to hang out while we are waiting for Noah.
Sure beats sweating to death while staring longingly at the water.
After spending a half hour in the toddler area at the pool with my two babes, I learned that my life is about to get a lot more complicated.
Lenay likes the water. She was a little timid at first because the water was a little cool, but she walked right up to the water table and pretty much parked herself there for the rest of our time there.
Campbell has more discriminating tastes. :) She prefers that I hold her on my hip where she can live vicariously through her sister. I could tell she was interested in the whole water table idea, but actually standing hip high in the water just wasn't something she was willing to sacrifice.
I did finally get Campbell to sit in the 0 depth area and splash a little bit in the cool water. She seemed to not hate it :) Just about that time, Lenay lost her balance and fell face first into the water. She stood up immediately, but she took in some water and was obviously terrified. She was frantically looking for me, and I couldn't get to her fast enough, even though I was only a few feet away. Luckily Campbell was content to sit while I dashed over to scoop up her sister.
Whew!
Just then Noah finished his lesson, and we piled into the family changing room.
And just so you know, 1 adult and 3 wet, wiggly kids take approximately 30 minutes to simply get into dry clothes.
Yes I quit my job 2 weeks ago. I was only supposed to work there for 6 months while I finished my last semester of college, and somehow I ended up staying 24 times longer (12 years!) What is up with that.
So we are pretty busy. Noah is playing baseball in 2 different leagues. He is taking swim lessons. He has basketball camp.
And I am his chauffeur :)
Swim started this week. Lessons are every day Mon-Thurs. The pool offers Toddler Time at the same time, so I figured that would be a good way for the babies and I to hang out while we are waiting for Noah.
Sure beats sweating to death while staring longingly at the water.
After spending a half hour in the toddler area at the pool with my two babes, I learned that my life is about to get a lot more complicated.
Lenay likes the water. She was a little timid at first because the water was a little cool, but she walked right up to the water table and pretty much parked herself there for the rest of our time there.
Campbell has more discriminating tastes. :) She prefers that I hold her on my hip where she can live vicariously through her sister. I could tell she was interested in the whole water table idea, but actually standing hip high in the water just wasn't something she was willing to sacrifice.
I did finally get Campbell to sit in the 0 depth area and splash a little bit in the cool water. She seemed to not hate it :) Just about that time, Lenay lost her balance and fell face first into the water. She stood up immediately, but she took in some water and was obviously terrified. She was frantically looking for me, and I couldn't get to her fast enough, even though I was only a few feet away. Luckily Campbell was content to sit while I dashed over to scoop up her sister.
Whew!
Just then Noah finished his lesson, and we piled into the family changing room.
And just so you know, 1 adult and 3 wet, wiggly kids take approximately 30 minutes to simply get into dry clothes.
Thursday, June 2, 2011
Friends from (before) the Beginning
Lenay and Campbell have known their friend Ella since they were born. Literally.
Ella made her grand entrance into this world prematurely as well. She shared a room in the NICU with Lenay and Campbell. I wish we had a picture of the three of them in the NICU together.
Ella's mom and dad and I have also known each other since we were born (it seems anyway!) The three of us actually started in the same kindergarten class at Marquette Elementary, and continued to be in the same accelerated classes all the way through grade school and middle school (with the exception of 5th grade, when they did something funky with our classes that year.)
Time marches on, and God made sure that I was reunited with Jeff and Kelley in the NICU in 2009 with our little miracle babies.
Kelley and I have gone through a lot together with these babies, and I'm so grateful for our renewed friendship! We've had to lean on each other in times when no one else could relate.
Ella is an amazing little person who has been through a lot in her little life! You can read more about Ella's story at Fairy Tale Endings.
We've taken pictures of the girls over time, and most recently just this week. Its amazing to see them grow and to look back and see how far they've come.
Sunday, May 22, 2011
The Team
Campbell has had a busy few weeks. Its a good thing she has me to run her around to all her appointments!
We saw her physical therapist. He was very impressed with her walking, of course. :) He says she is roughly at about 12-15 months for her gross motor skills. (She is 21 months old, 18 months adjusted.) We will only continue to adjust or correct her age until her 2nd birthday, which will be coming up here before too long. He also recommended that she get orthotics for her tiny pronated feet. Her low tone contributes to the fact that her ankle bones are rolling down, so these orthotic inserts will help to keep her feet in a neutral position. Daddy went out and bought her a new pair of shoes for the occasion (We've actually never bought shoes for the girls before! We've been so lucky to have so many given to us that we've never needed to.) They are Nikes and they are very cute. The orthotics fit right in, and no complaints from her so far!
Then we saw her gastroenterologist. He was not happy to find that she had only gained 4 oz in 2 months. She did however grow 2 inches (give or take) so that counts for something. The reason I say give or take is because I find their height measurements to be very subjective, depending on who is doing the measuring. Not just at this particular office, I'm talking at all of the different doctors we go to. Getting the girls measured so much and so often, I've actually witnessed them shrink at times. Even when the same person is measuring them time after time, its not always consistent.
I walked into the GI office with some extra cans of Duocal, the caloric supplement Campbell no longer takes, thinking that I would donate it to the office so another patient could use this extremely expensive stuff. Well, that visit didn't end the way I envisioned it. Not only did he send the cans back with me, but he also sent us home with some more free samples. Which I appreciated, but just the idea that she has to go back on this stuff is discouraging. We add it to her food, either by mixing it in or sprinkling it on top, to help her take in additional calories. I feel like she is doing so much better with her eating, so it is disappointing when we aren't seeing results.
Her next appointment was with her speech pathologist for feeding therapy. She was very happy to see Campbell eating so well, and in turn she was also disappointed to hear that she was back on the Duocal. She said we could talk to the doc about a possible dietician referral. She thought a dietician might be able to help us pack in more calories (in a healthy way I mean - we can't just slather everything in butter you know. We don't want to give the child high cholesterol!) and then maybe we could get off the supplement. Our speech path is also trying to come up with creative ways to get Campbell to drink more from the cup. She does drink some, but she is still getting 2-3 bottles a day as well. Next month, she will do a speech evaluation on Campbell to see where she is developmentally with that.
I just got a call from Campbell's developmental therapist, and we scheduled her bi-annual evaluation for June. She hasn't seen Campbell in 6 months, so I'm anxious to see what she thinks.
Our IFSP meeting is scheduled for July. This is when we meet with Campbell's entire Early Intervention care team, which consists of her physical therapist, occupational therapist, developmental therapist, speech pathologist, and our case worker. And us of course. We are considered part of the team too :)
We saw her physical therapist. He was very impressed with her walking, of course. :) He says she is roughly at about 12-15 months for her gross motor skills. (She is 21 months old, 18 months adjusted.) We will only continue to adjust or correct her age until her 2nd birthday, which will be coming up here before too long. He also recommended that she get orthotics for her tiny pronated feet. Her low tone contributes to the fact that her ankle bones are rolling down, so these orthotic inserts will help to keep her feet in a neutral position. Daddy went out and bought her a new pair of shoes for the occasion (We've actually never bought shoes for the girls before! We've been so lucky to have so many given to us that we've never needed to.) They are Nikes and they are very cute. The orthotics fit right in, and no complaints from her so far!
Then we saw her gastroenterologist. He was not happy to find that she had only gained 4 oz in 2 months. She did however grow 2 inches (give or take) so that counts for something. The reason I say give or take is because I find their height measurements to be very subjective, depending on who is doing the measuring. Not just at this particular office, I'm talking at all of the different doctors we go to. Getting the girls measured so much and so often, I've actually witnessed them shrink at times. Even when the same person is measuring them time after time, its not always consistent.
I walked into the GI office with some extra cans of Duocal, the caloric supplement Campbell no longer takes, thinking that I would donate it to the office so another patient could use this extremely expensive stuff. Well, that visit didn't end the way I envisioned it. Not only did he send the cans back with me, but he also sent us home with some more free samples. Which I appreciated, but just the idea that she has to go back on this stuff is discouraging. We add it to her food, either by mixing it in or sprinkling it on top, to help her take in additional calories. I feel like she is doing so much better with her eating, so it is disappointing when we aren't seeing results.
Her next appointment was with her speech pathologist for feeding therapy. She was very happy to see Campbell eating so well, and in turn she was also disappointed to hear that she was back on the Duocal. She said we could talk to the doc about a possible dietician referral. She thought a dietician might be able to help us pack in more calories (in a healthy way I mean - we can't just slather everything in butter you know. We don't want to give the child high cholesterol!) and then maybe we could get off the supplement. Our speech path is also trying to come up with creative ways to get Campbell to drink more from the cup. She does drink some, but she is still getting 2-3 bottles a day as well. Next month, she will do a speech evaluation on Campbell to see where she is developmentally with that.
I just got a call from Campbell's developmental therapist, and we scheduled her bi-annual evaluation for June. She hasn't seen Campbell in 6 months, so I'm anxious to see what she thinks.
Our IFSP meeting is scheduled for July. This is when we meet with Campbell's entire Early Intervention care team, which consists of her physical therapist, occupational therapist, developmental therapist, speech pathologist, and our case worker. And us of course. We are considered part of the team too :)
Tuesday, May 17, 2011
Monday, May 9, 2011
Waiting
So this morning I got the much anticipated call from our cardiologist.
As soon as I saw the caller ID, my own heart jumped.
Lenay's heart surgeon attended a national conference and presented Lenay's case to the top specialists from the US and Europe for advice on how to proceed with her little heart.
I was about to find out if:
A) Lenay is having major surgery.
B) Lenay is having minor (yet still heart) surgery.
C) We are waiting and seeing.
I held the ringing phone in my hand and took a deep breath.
Here we go.
Hello?
I closed my eyes as I braced myself for the news.
The consensus is that we just need to be patient.
Some of these doctors have actually seen this problem before, and they said as long as there isn't any progression, there is no need to intervene.
Her heart will grow. And the pressure gradient will go down.
In the meantime, she will be watched closely with echocardiograms and EKGs.
I felt so much lighter as I hung up the phone!
Its not like we can get a better opinion. I mean, we've had doctor after doctor, expert after expert, reviewing her case. From all over the world.
And they are all saying the same thing.
Just wait. Be patient. And see.
We gladly will :)
As soon as I saw the caller ID, my own heart jumped.
Lenay's heart surgeon attended a national conference and presented Lenay's case to the top specialists from the US and Europe for advice on how to proceed with her little heart.
I was about to find out if:
A) Lenay is having major surgery.
B) Lenay is having minor (yet still heart) surgery.
C) We are waiting and seeing.
I held the ringing phone in my hand and took a deep breath.
Here we go.
Hello?
I closed my eyes as I braced myself for the news.
The consensus is that we just need to be patient.
Some of these doctors have actually seen this problem before, and they said as long as there isn't any progression, there is no need to intervene.
Her heart will grow. And the pressure gradient will go down.
In the meantime, she will be watched closely with echocardiograms and EKGs.
I felt so much lighter as I hung up the phone!
Its not like we can get a better opinion. I mean, we've had doctor after doctor, expert after expert, reviewing her case. From all over the world.
And they are all saying the same thing.
Just wait. Be patient. And see.
We gladly will :)
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