I have been following this blog of a little boy, Jedidiah, who (so everyone thought) had Trisomy 13. After he was born, testing found that he had Trisomy 18. He was able to go home with his family, but he recently passed away. His mother wrote of her experience with the doctors and nurses after Jedidiah's birth. You can read that story at http://trisomyjourney.blogspot.com/2010/11/medical-mindset-you-are-your-childs.html. I'm shocked at the callousness some of those professionals showed this family.
Jedidiah's story has been on my mind so much lately. It heightens my appreciation for our experience in the hospital with Lily and how our doctors and nurses gave Lily so much love, despite their knowledge of the statistics. Dave believes Lily was able to make it out of the hospital because of the love they helped us shower on her. The tenderness, the care, the compassion that they gave her--oh, how can we ever repay that?
So when Dave and I were talking about things we were thankful for. . .well, I just couldn't help but feel the deepest, renewed sense of gratitude for the hospital staff who took care of us after Lily was born.
Thursday, November 25, 2010
Thursday, November 18, 2010
More than I can handle
Have you ever been so frustrated that you lost your voice? I'm not talking about our talking voice. I'm talking about the voice that is able to tell the story or recount the events. The voice that works when you are able to keep it all together.
I lost mine today. It's the second time this has happened, and both times involved Lily. The first time was the day of my amnio, when the genetic counselor asked me if I knew anything about Trisomy 18. My voice failed me, and all I could do was cry. Luckily, Dave, my knight in shining armor, was there to answer for me. And, luckily, he was willing to be there for me today, this second time that I've lost my voice.
I've been dealing with vomit for two weeks now, and today, I think the bending from all of the weight that comes with a baby who has Trisomy 18 broke me. It's not so much the vomit itself or having to do laundry every day or any one piece of this parcel. It's the complete package, plus the worry that comes along with it, plus the feeling that I'm not being listened to when my heart tells me we need to get to the bottom of this, plus the uncertainty. I'm afraid to go places, worrying that Lily might make a mess all over the place.
It all started after Lily's g-tube got placed, but I can't say the g-tube is the culprit. (Can't rule it out, either.) And it really didn't begin until the first time Lily got sick after the g-tube got placed. I think I've posted about it before, but she either sneezes or coughs and then she vomits. I'm not talking about a little dribbling down her mouth. I'm talking about projectile. I'm talking about 1 to 4 or 5 ounces being lost each time.
But it doesn't happen consistently, which is probably just as frustrating, and it doesn't necessarily happen while I'm feeding her (although it does at times). Sometimes it happens 15 to 30 minutes after I feed her; other times, it occurs 2 to 3 hours later. But it always happens with a sneeze or a cough. The doctor has prescribed an antibiotic, thinking that maybe she has a sinus infection or ear infection or UTI--not sure if vomiting would be caused by any or all of the above--but Lily's ear canals are too small to tell if she has an ear infection. She does sound a little gurgly sometimes, and her undiagnosed sleep apnea has been worse the past few days, so sinuses could be causing that. Her urine has a peculiar smell, which leads me to believe she might have a UTI, but it seems to me as if it's all speculation. That's not enough for me. I want answers.
So the vomiting started with that cold that came some time after the g-tube, and it's been pretty consistent that whenever Lily has a cold, this is what we can expect. Until two weeks ago. That's when the nutritionist suggested that we up her intake 1/2 an ounce at each feeding for a week and then another 1/2 ounce after that so she will be getting 6 ounces instead of 5. Last night, though, thinking that maybe 6 ounces is just too much for her right now, I lowered the dose to about 4 1/2. I awoke at one this morning to hard crying and vomit all over Lily and in her crib. This is the third or fourth night in a row that she's thrown up in her crib. Yesterday morning, she threw up while the PT was here, and today she's thrown up twice. So maybe the amount wasn't too much.
I'm so tired of all of this. Like I said, I want answers, or at least suggestions. Dave tried to call the doctor, but had to leave a message and the call was never returned. (I could not have done it. I cried just telling him all about it.)
The only ball I feel I have in my hands right now is to change her formula, which we did this evening. So far, so good, so maybe there's some kind of intolerance to what she's been drinking. I don't want to sound too pessimistic here, but I'm not holding my breath because the vomitting has been so inconsistent. It doesn't happen every time she gets fed. Is this one of those times?
The good news is that Lily doesn't seem to be in pain. After each episode, she cries or fusses (heck, I would too), but she gets over it and then wants to play.
There just seems to be so many possibilities:
allergy or sensitivity?
something wrong with her stomach emptying?
congestion?
some ear, nose, throat issue?
could adnoids or tonsils cause something like this--I'm relating only because of the apnea?
reflux?
Gosh, if anyone out there has any suggestions or a related experience, I could really, REALLY use a few pointers. It's frustrating to me, but I can only imagine what it's putting Lily through.
Enough venting for the night. I feel better, but I think I still need Dave to be my voice with the doctors. Right now, I'm afraid I'll just come across as some crazy woman speculating anything and everything that could be wrong. And something tells me that this is one time when I need to keep my cool.
I lost mine today. It's the second time this has happened, and both times involved Lily. The first time was the day of my amnio, when the genetic counselor asked me if I knew anything about Trisomy 18. My voice failed me, and all I could do was cry. Luckily, Dave, my knight in shining armor, was there to answer for me. And, luckily, he was willing to be there for me today, this second time that I've lost my voice.
I've been dealing with vomit for two weeks now, and today, I think the bending from all of the weight that comes with a baby who has Trisomy 18 broke me. It's not so much the vomit itself or having to do laundry every day or any one piece of this parcel. It's the complete package, plus the worry that comes along with it, plus the feeling that I'm not being listened to when my heart tells me we need to get to the bottom of this, plus the uncertainty. I'm afraid to go places, worrying that Lily might make a mess all over the place.
It all started after Lily's g-tube got placed, but I can't say the g-tube is the culprit. (Can't rule it out, either.) And it really didn't begin until the first time Lily got sick after the g-tube got placed. I think I've posted about it before, but she either sneezes or coughs and then she vomits. I'm not talking about a little dribbling down her mouth. I'm talking about projectile. I'm talking about 1 to 4 or 5 ounces being lost each time.
But it doesn't happen consistently, which is probably just as frustrating, and it doesn't necessarily happen while I'm feeding her (although it does at times). Sometimes it happens 15 to 30 minutes after I feed her; other times, it occurs 2 to 3 hours later. But it always happens with a sneeze or a cough. The doctor has prescribed an antibiotic, thinking that maybe she has a sinus infection or ear infection or UTI--not sure if vomiting would be caused by any or all of the above--but Lily's ear canals are too small to tell if she has an ear infection. She does sound a little gurgly sometimes, and her undiagnosed sleep apnea has been worse the past few days, so sinuses could be causing that. Her urine has a peculiar smell, which leads me to believe she might have a UTI, but it seems to me as if it's all speculation. That's not enough for me. I want answers.
So the vomiting started with that cold that came some time after the g-tube, and it's been pretty consistent that whenever Lily has a cold, this is what we can expect. Until two weeks ago. That's when the nutritionist suggested that we up her intake 1/2 an ounce at each feeding for a week and then another 1/2 ounce after that so she will be getting 6 ounces instead of 5. Last night, though, thinking that maybe 6 ounces is just too much for her right now, I lowered the dose to about 4 1/2. I awoke at one this morning to hard crying and vomit all over Lily and in her crib. This is the third or fourth night in a row that she's thrown up in her crib. Yesterday morning, she threw up while the PT was here, and today she's thrown up twice. So maybe the amount wasn't too much.
I'm so tired of all of this. Like I said, I want answers, or at least suggestions. Dave tried to call the doctor, but had to leave a message and the call was never returned. (I could not have done it. I cried just telling him all about it.)
The only ball I feel I have in my hands right now is to change her formula, which we did this evening. So far, so good, so maybe there's some kind of intolerance to what she's been drinking. I don't want to sound too pessimistic here, but I'm not holding my breath because the vomitting has been so inconsistent. It doesn't happen every time she gets fed. Is this one of those times?
The good news is that Lily doesn't seem to be in pain. After each episode, she cries or fusses (heck, I would too), but she gets over it and then wants to play.
There just seems to be so many possibilities:
allergy or sensitivity?
something wrong with her stomach emptying?
congestion?
some ear, nose, throat issue?
could adnoids or tonsils cause something like this--I'm relating only because of the apnea?
reflux?
Gosh, if anyone out there has any suggestions or a related experience, I could really, REALLY use a few pointers. It's frustrating to me, but I can only imagine what it's putting Lily through.
Enough venting for the night. I feel better, but I think I still need Dave to be my voice with the doctors. Right now, I'm afraid I'll just come across as some crazy woman speculating anything and everything that could be wrong. And something tells me that this is one time when I need to keep my cool.
Saturday, November 13, 2010
Just had to share this one
We have the girl name picked out, but we don't have a boy name yet. We keep going back and forth and just haven't necessarily found the "perfect" one.
Last night, we asked Gabriel what he thought we should name the baby in the event we have a boy.
His answer? (Now, are you ready for this one?!)
Godzilla.
And he was very serious about it.
I'm still laughing!
Last night, we asked Gabriel what he thought we should name the baby in the event we have a boy.
His answer? (Now, are you ready for this one?!)
Godzilla.
And he was very serious about it.
I'm still laughing!
Thursday, November 11, 2010
Disappointed
The following article was in our local newspaper yesterday. My heart is burning on this one. I am so disappointed in our state. I am so disappointed (yet I feel very sorry for their heartlessness) in the number of people who left comments about this article who believe that Medicaid is a joke because lazy people take advantage of it.
Lily is on Medicaid because, well, basically, she has a disability. Without Medicaid, she would not have physical therapy where we've seen her improve at an unbelievable rate. (Our health insurance does not pay for it. I'm not sure if her OT or Speech or Orientation and Mobility is covered by health insurance or not.) Without Medicaid, we would not be able to give her the formula her doctors recommend, and I'm not sure if regular milk would sustain her and allow her to grow in the way her formula has. She surely doesn't take in enough solids to sustain her. (Oh, our health insurance does not pay for that either.) Without Medicaid, she would not have her stander--which I believe helps her constipation and I know develops her hip sockets to help avoid hip problems in the future--because, once again, our health insurance doesn't pay for it. And without Medicaid, we would have an astronomical amount of medical bills that would be very difficult to pay since I'm not working.
It angers me because--and I'm not gloating here--Dave and I are good people. This is not a system we are trying to beat. It's a system we, and Lily, could not live without. Making the decision to stay home instead of working was a very difficult decision, but it is one we made out of complete selflessness for our little girl. We have sacrificed to a point where I am sometimes tired of sacrificing. Luckily, every time there's a sacrifice to be made, I only have to look at Lily's smile or hear her coos or see the adoration in her eyes for her family, and I know that sacrifice has been worth it. Humbled maybe, but lazy we have not been. As a matter of fact, sometimes there's a sense of shame that attaches to this need.
So point blank. I am scared. I am worried about what the future holds for not only Lily but for every little boy or girl, disabled or not, lazy parents or not. It is not fair to them. There is so much research out there regarding early intervention (which Medicaid happens to cover) and how imperative it is to the developement of a child who is behind. It hurts to see how much Lily has benefitted from just this, and I'm appalled that South Carolina is even considering "[cutting] off coverage for everyone."
I'm so sorry to be venting here. My fear incites it.
COLUMBIA -- The 820,000 residents on Medicaid in South Carolina are breaking the bank and state officials are now facing a big decision: allow the program to run $228 million in the red or cut off coverage for everyone.
The state Department of Health and Human Services announced Tuesday that it is facing a budget crisis. The agency, which oversees government-run health insurance for poor people and children, will have to ask the state Budget and Control Board on Dec. 14 to run a deficit, a move that is expected to ignite a firestorm among politicians over what South Carolina should be expected to pay for in the face of federal health care reform.
Without approval to run a deficit, the agency proposes to stop paying doctors, hospitals and other health care providers who treat Medicaid patients on March 4. The claims would be received and processed but not paid until there is more cash in the bank.
The agency says it is backed into a corner. The state's dramatic economic downturn has forced more than 100,000 people in three years onto the Medicaid rolls, which now carry 43 percent of the state's children. And when the state accepted federal cash from the stimulus package,
South Carolina agreed not to kick anyone off of Medicaid by changing eligibility standards. What's more, state lawmakers further bound the agency by limiting places to trim expenses, such as by barring the agency from dropping the rates it pays the doctors who treat Medicaid patients. South Carolina is the only state that has prohibited its Medicaid agency from lowering the provider reimbursement rates, while at least 40 other states have done just that to manage budget shortfalls.
Jeff Stensland, director of communications for the Health and Human Services Department, said the agency has fewer resources to meet a tremendous growth in demand. The agency saved $22.9 million with cost-cutting measures, including laying off and not replacing staff. That's combined with facing $228 million in budget cuts in the past three years and having $550 million from its savings account transferred to plug budget shortfalls in other government programs.
"The challenge we have is simply paying for health care services for all the people who qualify for Medicaid," he said.
Decisions about what South Carolina will do to manage the budget crisis come with high stakes that include issuing IOUs to doctors or outright rejecting participation in the Medicaid program, resulting in a loss of coverage for the 820,000 people and $4.1 billion annually from the federal government that keeps the health care industry -- doctors, nursing homes and hospitals -- in business. Some programs on the chopping block also would affect services the state's elderly and disabled receive.
The five-member Budget and Control Board is expected to take up the matter at its December meeting. From there, lawmakers and Gov.-elect Nikki Haley will have to make decisions about what South Carolina will do to address the budget crisis going forward.
Department of Health and Human Services
Deficit Reduction Plan - PDF
Haley said she will fight the new health care reform law all the way to the U.S. Supreme Court. Meanwhile, newly elected members of Congress, including 1st District U.S. Rep.-elect Tim Scott, a Charleston Republican, have vowed to make its repeal a top priority.
Ben Fox, communications director for Gov. Mark Sanford, said the governor's office still is in discussions on the developing issue that came to a head Tuesday. Sanford oversees the Health and Human Services Department as part of his Cabinet and is chairman of the Budget and Control Board. The board has control of much of the state's purse strings and manages financial crises when the state Legislature is not in session. Lawmakers will convene again in January.
State Rep. Dan Cooper, a Piedmont Republican who chairs the House Ways and Means Committee, said that given the consequences he is not sure the Budget and Control Board members will be left with a choice. He serves on the board with Sanford, the state treasurer, comptroller general and Senate Finance Chairman Hugh Leatherman, a Florence Republican.
Cooper said the impact on withdrawing from the Medicaid program cannot be overstated. Workers across the state, from the doctors and nurses and dentists to the medical suppliers and offices professionals, risk losing their livelihood, worsening the state's already bad economic situation and high unemployment rate, Cooper said.
"We're certainly trying to explore all the options out there," Cooper said, adding "I don't know what that all means yet."
Covering the politics of the Lowcountry, South Carolina and the nation.
Likewise, Deputy State Treasurer Scott Malyerck said late Tuesday that outgoing Treasurer Converse Chellis is mulling over the situation. Chellis is reviewing information from the Health and Human Services Department and crunching the numbers.
Comptroller General Richard Eckstrom, who just won re-election to another term, said the state constitution makes it clear that the state cannot spend more than it takes in. He sees the only option as working with the agency to find ways to push the spending back into the black.
"This is going to require us to make tough choices because spending beyond our means can't be an option," Eckstrom said, noting that the federal stimulus money that he opposed was never "free."
Lily is on Medicaid because, well, basically, she has a disability. Without Medicaid, she would not have physical therapy where we've seen her improve at an unbelievable rate. (Our health insurance does not pay for it. I'm not sure if her OT or Speech or Orientation and Mobility is covered by health insurance or not.) Without Medicaid, we would not be able to give her the formula her doctors recommend, and I'm not sure if regular milk would sustain her and allow her to grow in the way her formula has. She surely doesn't take in enough solids to sustain her. (Oh, our health insurance does not pay for that either.) Without Medicaid, she would not have her stander--which I believe helps her constipation and I know develops her hip sockets to help avoid hip problems in the future--because, once again, our health insurance doesn't pay for it. And without Medicaid, we would have an astronomical amount of medical bills that would be very difficult to pay since I'm not working.
It angers me because--and I'm not gloating here--Dave and I are good people. This is not a system we are trying to beat. It's a system we, and Lily, could not live without. Making the decision to stay home instead of working was a very difficult decision, but it is one we made out of complete selflessness for our little girl. We have sacrificed to a point where I am sometimes tired of sacrificing. Luckily, every time there's a sacrifice to be made, I only have to look at Lily's smile or hear her coos or see the adoration in her eyes for her family, and I know that sacrifice has been worth it. Humbled maybe, but lazy we have not been. As a matter of fact, sometimes there's a sense of shame that attaches to this need.
So point blank. I am scared. I am worried about what the future holds for not only Lily but for every little boy or girl, disabled or not, lazy parents or not. It is not fair to them. There is so much research out there regarding early intervention (which Medicaid happens to cover) and how imperative it is to the developement of a child who is behind. It hurts to see how much Lily has benefitted from just this, and I'm appalled that South Carolina is even considering "[cutting] off coverage for everyone."
I'm so sorry to be venting here. My fear incites it.
COLUMBIA -- The 820,000 residents on Medicaid in South Carolina are breaking the bank and state officials are now facing a big decision: allow the program to run $228 million in the red or cut off coverage for everyone.
The state Department of Health and Human Services announced Tuesday that it is facing a budget crisis. The agency, which oversees government-run health insurance for poor people and children, will have to ask the state Budget and Control Board on Dec. 14 to run a deficit, a move that is expected to ignite a firestorm among politicians over what South Carolina should be expected to pay for in the face of federal health care reform.
Without approval to run a deficit, the agency proposes to stop paying doctors, hospitals and other health care providers who treat Medicaid patients on March 4. The claims would be received and processed but not paid until there is more cash in the bank.
The agency says it is backed into a corner. The state's dramatic economic downturn has forced more than 100,000 people in three years onto the Medicaid rolls, which now carry 43 percent of the state's children. And when the state accepted federal cash from the stimulus package,
South Carolina agreed not to kick anyone off of Medicaid by changing eligibility standards. What's more, state lawmakers further bound the agency by limiting places to trim expenses, such as by barring the agency from dropping the rates it pays the doctors who treat Medicaid patients. South Carolina is the only state that has prohibited its Medicaid agency from lowering the provider reimbursement rates, while at least 40 other states have done just that to manage budget shortfalls.
Jeff Stensland, director of communications for the Health and Human Services Department, said the agency has fewer resources to meet a tremendous growth in demand. The agency saved $22.9 million with cost-cutting measures, including laying off and not replacing staff. That's combined with facing $228 million in budget cuts in the past three years and having $550 million from its savings account transferred to plug budget shortfalls in other government programs.
"The challenge we have is simply paying for health care services for all the people who qualify for Medicaid," he said.
Decisions about what South Carolina will do to manage the budget crisis come with high stakes that include issuing IOUs to doctors or outright rejecting participation in the Medicaid program, resulting in a loss of coverage for the 820,000 people and $4.1 billion annually from the federal government that keeps the health care industry -- doctors, nursing homes and hospitals -- in business. Some programs on the chopping block also would affect services the state's elderly and disabled receive.
The five-member Budget and Control Board is expected to take up the matter at its December meeting. From there, lawmakers and Gov.-elect Nikki Haley will have to make decisions about what South Carolina will do to address the budget crisis going forward.
Department of Health and Human Services
Deficit Reduction Plan - PDF
Haley said she will fight the new health care reform law all the way to the U.S. Supreme Court. Meanwhile, newly elected members of Congress, including 1st District U.S. Rep.-elect Tim Scott, a Charleston Republican, have vowed to make its repeal a top priority.
Ben Fox, communications director for Gov. Mark Sanford, said the governor's office still is in discussions on the developing issue that came to a head Tuesday. Sanford oversees the Health and Human Services Department as part of his Cabinet and is chairman of the Budget and Control Board. The board has control of much of the state's purse strings and manages financial crises when the state Legislature is not in session. Lawmakers will convene again in January.
State Rep. Dan Cooper, a Piedmont Republican who chairs the House Ways and Means Committee, said that given the consequences he is not sure the Budget and Control Board members will be left with a choice. He serves on the board with Sanford, the state treasurer, comptroller general and Senate Finance Chairman Hugh Leatherman, a Florence Republican.
Cooper said the impact on withdrawing from the Medicaid program cannot be overstated. Workers across the state, from the doctors and nurses and dentists to the medical suppliers and offices professionals, risk losing their livelihood, worsening the state's already bad economic situation and high unemployment rate, Cooper said.
"We're certainly trying to explore all the options out there," Cooper said, adding "I don't know what that all means yet."
Covering the politics of the Lowcountry, South Carolina and the nation.
Likewise, Deputy State Treasurer Scott Malyerck said late Tuesday that outgoing Treasurer Converse Chellis is mulling over the situation. Chellis is reviewing information from the Health and Human Services Department and crunching the numbers.
Comptroller General Richard Eckstrom, who just won re-election to another term, said the state constitution makes it clear that the state cannot spend more than it takes in. He sees the only option as working with the agency to find ways to push the spending back into the black.
"This is going to require us to make tough choices because spending beyond our means can't be an option," Eckstrom said, noting that the federal stimulus money that he opposed was never "free."
Wednesday, November 10, 2010
A Few Recent Pictures
Gabriel LOVES his little sister. She LOVES him, too!
Gabriel will go up to Lily and lay beside her. Immediately, she'll roll over and put her arm up on him, like you see her doing in this picture. She'll lift her legs up and put herself into a little ball. It really looks as if they're wrestling on the floor. 
Lily loves to blow "raspberries." Sometimes she'll do it for five or so minutes at a time. She leaves quite the mess!
Sweet as candy for Halloween.
Lily with her hero.
Another happy face before bathtime!
I just love her cheeks!
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