Well, we have a diagnosis. Sort of. I am thinking of it as a partial diagnosis. As in part 1 of 2 or maybe 3. I should explain.
You see, it is now believed that Camille has at least two genetic conditions. The syndrome, or condition, that is causing what I consider to be the majority of her issues, is still unknown or undiagnosed.
However, we now know what is causing her endocrine/hormone problems. She has been diagnosed with a rare form of non-classical Congenital Adrenal Hyperplasia (CAH), the 3-beta form. This form of CAH is so rare, that of the people who have CAH, only 1% of them have this form. It is inherited genetically in an autosomal recessive pattern, meaning Jason and I are more than likely each carriers for it.
Or maybe not.
I should explain again.
Here is where it gets tricky. You see, this is a very rare condition. And then, whatever else Camille has that accounts for all of her other issues (small for gestational age, small head, failure to thrive, eating difficulties, developmental delay) is also rare, so rare in fact that it cannot even be determined at this time. What are the chances of her inheriting two very rare conditions from me and Jason? In other words, what are the chances of Jason and I both being carriers of two of the same rare conditions and then meeting up and getting married and having children?
Basically slim to none.
And so, what the geneticist in Houston proposed might have happened was this. We all inherit two copies of each of the 23 chromosomes in our body, one copy from each parent. Each chromosome is made up of thousands of genes. Each of us are carriers for at least 6, probably more like 10 or more, genetic syndromes (mutations on those genes). Most of the time, parents are not carriers for the same syndromes, since there are thousands. Even if they are, then there is still only a 25% chance at each pregnancy that the baby would inherit the syndrome, depending on if the baby inherited a mutated copy of the gene from each parent.
However, the geneticists believe that what may have happened with Camille is that she inherited two copies of one of the chromosomes from the same parent, either me or Jason, instead of inheriting one copy from each parent. Therefore, if she inherited two chromosomes from me or two chromosomes from Jason, basically a duplicated chromosome, then she would have a 100% chance of getting whatever that parent was a carrier for along that chromosome because both chromosomes would definitely have the mutated genes.
Have I lost you yet?
So, the good news about having a diagnosis of 3-beta CAH is that we might be able to use it to determine what the other syndrome is. If they now know that Camille has CAH, and what chromosome that form of CAH is located on, then they can look at what other syndromes are also on that chromosome, and see if any of them match Camille's other "symptoms".
The bad news? This form of CAH, as with most forms of CAH, can be life-threatening if not treated properly. Let me explain a little about what CAH is. You can also google it, but you won't find much about the 3-beta form, and you know that's coming from the Google Queen.
In a nutshell, what happens in all forms of CAH is that the adrenal glands (located above the kidneys) do not produce enough cortisol. "Cortisol is a steroid produced by the adrenal glands that our bodies need to: (1) deal with physical and emotional stress, and (2) maintain adequate energy supply and blood sugar levels" (caresfoundation.org). Deficiency in cortisol also leads to overproduction of other hormones, which we saw with Camille in the form of DHEA overproduction. This overproduction of hormones leads to the overt symptoms of CAH, like the signs of early puberty that we saw with Camille. Babies with CAH can also have ambiguous genitalia from the overproduction of these hormones, which thankfully Camille does not have.
The main issue now is that because Camille's adrenal glands do not produce enough cortisol, she could suffer from adrenal crisis, especially when her body is stressed (i.e. in times of illness). Therefore, we are going to have to start treating her with a steroid. She will take a regular maintenance dose twice a day, and then when she is sick, she will take a stress dose, which is basically an increased dose. If she were ever to get really sick, in particular, vomiting so much that she couldn't keep her medicine down, then we would have to inject her with a dose. Jason and I are supposed to go up to Cooks next week to be taught how to inject Camille should this ever happen.
Could it get any more fun than that?
And so, for the million dollar question, how are we taking all of this? For some reason, I am taking it very hard. First, it's just scary to me to hear the words "life-threatening". And, it's also scary that we are the ones who decide when to do the stress dose, or when to do the injected dose. What if we screw up and do it when it is unnecessary, or worse, what if we screw up and don't do it when we should have and she goes into adrenal crisis? Talk about pressure!
And here's the other thing that's driving me crazy. This diagnosis doesn't even account for all of the other huge stuff Camille has going on! It's not even what anyone would consider her "main" diagnosis! And so we have this new condition, which can be life-threatening, which requires more medication and more regular appointments and blood draws every few weeks---and it doesn't even explain the half of it! Or even a fourth of it!
I am really trying hard to keep things in perspective here. One, I'm thankful that this is treatable. Two, I'm so relieved that she doesn't have an adrenal or ovarian tumor, the other option of what could have been causing the hormone issues. Three, I am glad that we at least know something about what is going on in Camille's little body.
But that doesn't stop that little niggle of irritation from occurring, where I think over and over in my head, "REALLY? REALLY?" My baby girl has at least two genetic conditions that are causing her all of these problems, when most babies have none? And all of this occurred because of something that was out of our control, a random mutation that happened before I even knew I was pregnant, a "fluke" or "round of bad luck"? Those thoughts just make me want to scream and pull all my hair out, or at least have several really loaded margaritas.
But as I have tried to do from the very beginning, and believe me, I still fail miserably at it every day, I am still trying to see the goodness in this. There is certainly no goodness in any of these "diagnoses", but there is goodness in Camille. I can't believe my little girl is only 2 months away from her 1st birthday. She has become a really easy baby (everyone stop reading this now and knock on some wood nearby). She is happy nearly all of the time now, smiling, laughing, squealing, talking. She is a true joy. And we just love her to pieces.
She could have 20 genetic conditions, and it wouldn't change that.
Tuesday, March 30, 2010
Wednesday, March 17, 2010
Luck of the Irish?
Not sure if it is the luck of the Irish, but we are so happy to report that Camille has slept through the night with only one middle-of-the-night-wake-up for over 2 weeks now! If you have seen us recently, you may have noticed that we are a lot happier and looking a tad less like dead people walking. Let's be honest here--we still have Mr. Action and Miss High-Maintenance keeping us very busy during the day, so we still don't look great. But looking a little less like death-warmed-over is good enough for us. It's amazing what sleep can do!
And so what really caused this new change in luck? I'm going with Camille's new formula. Her new gastro had us switch her formula from Elecare to a regular ol' Similac. Wow, regular formula! That you can buy in a regular store! And not sell body parts in order to pay for it! And it apparently helps your baby sleep through the night! Greatness! Apparently, the gastro thought that the Elecare could have been "dumping" out of Camille's stomach too fast, causing pain and discomfort. He was hoping this change would help with irritability and sleep. So, we switched Camille to Similac, and the night that the transition was complete was the first night that she slept all night. Ten whole hours instead of her regular two. Again, greatness! I told our Gastro as much on Friday when we saw him again to follow-up on this new change. I gushed about how appreciative we were. I really wanted to tell him that he was a genius and then kiss his feet, but I held myself back. Again, it's that great restraint I have coming into play.
So maybe it was the formula, maybe it was the start of Spring, maybe it was that Camille has not been sick for over 2 weeks, or maybe it was that so many of you have been praying for this specific thing for us. We know that is the most likely reason!
Even so, it wouldn't hurt to have a little bit of Irish luck. The Whitts will take all of the good luck that comes our way! And so, in typical Henry and Camille fashion...
Happy
Saint
Patrick's
Day!
And so what really caused this new change in luck? I'm going with Camille's new formula. Her new gastro had us switch her formula from Elecare to a regular ol' Similac. Wow, regular formula! That you can buy in a regular store! And not sell body parts in order to pay for it! And it apparently helps your baby sleep through the night! Greatness! Apparently, the gastro thought that the Elecare could have been "dumping" out of Camille's stomach too fast, causing pain and discomfort. He was hoping this change would help with irritability and sleep. So, we switched Camille to Similac, and the night that the transition was complete was the first night that she slept all night. Ten whole hours instead of her regular two. Again, greatness! I told our Gastro as much on Friday when we saw him again to follow-up on this new change. I gushed about how appreciative we were. I really wanted to tell him that he was a genius and then kiss his feet, but I held myself back. Again, it's that great restraint I have coming into play.
So maybe it was the formula, maybe it was the start of Spring, maybe it was that Camille has not been sick for over 2 weeks, or maybe it was that so many of you have been praying for this specific thing for us. We know that is the most likely reason!
Even so, it wouldn't hurt to have a little bit of Irish luck. The Whitts will take all of the good luck that comes our way! And so, in typical Henry and Camille fashion...
Happy
Saint
Patrick's
Day!Sunday, March 7, 2010
Yes
In case you haven't already heard...
Yes, we are home from the hospital as of last Thursday a week ago, and yes, Camille is over her pneumonia and feeling better than she has in a long time. And yes, I did have to beg and harass our pediatrician to let us go home when we did, but oh yes, it was worth it.
And yes, Jason did get the flu shortly after we got home from the hospital, and yes, we do sometimes think we are cursed. And yes, Jason is now over the flu, and yes, we are hoping that sickness has fled the Whitt house for a long, long while.
And yes, Jason and I did attend the Baylor vs. Texas men's basketball game on Saturday, and yes, the victory was so very sweet just as it always is against the Longhorns. And yes, I did embarrass Jason thoroughly, and yes, although he did not have to pull me down by my clothing this time, he did have to remind me that there were children sitting nearby. And yes, one of those children did walk by at half-time and stick his 'horns sign in my face, and yes, I did refrain from sticking my tongue out at him in response.
And yes, Henry and Camille did stay with Nani and Papi during the game, and yes, they did have a blast. And yes, because Camille did not attend the game, it does mean that she will have to find another opportunity to wear her new Baylor cheerleader outfit, and yes, when she does in fact wear it, I will post pictures. I promise.
And yes, Camille did see another endocrinologist on Friday, and yes, he was a huge improvement over the last one. And yes, he too was thoroughly baffled by Camille, and yes, he too had no idea what could be causing all of her hormone issues. And yes, he did run more tests, and yes, those tests will take 2-3 weeks to get back. And yes, that is very annoying.
And yes, not surprisingly, all of Camille's latest GI tests did come back normal (read: unhelpful), and yes, that is also very annoying.
And yes, last but not least, I am feeling much better than I was when I wrote my last post, and yes, that probably has a lot to do with the fact that you all continue to lift us up with your amazing support. And yes, although I have said this a thousand times before, thank you.
Yes, we are home from the hospital as of last Thursday a week ago, and yes, Camille is over her pneumonia and feeling better than she has in a long time. And yes, I did have to beg and harass our pediatrician to let us go home when we did, but oh yes, it was worth it.
And yes, Jason did get the flu shortly after we got home from the hospital, and yes, we do sometimes think we are cursed. And yes, Jason is now over the flu, and yes, we are hoping that sickness has fled the Whitt house for a long, long while.
And yes, Jason and I did attend the Baylor vs. Texas men's basketball game on Saturday, and yes, the victory was so very sweet just as it always is against the Longhorns. And yes, I did embarrass Jason thoroughly, and yes, although he did not have to pull me down by my clothing this time, he did have to remind me that there were children sitting nearby. And yes, one of those children did walk by at half-time and stick his 'horns sign in my face, and yes, I did refrain from sticking my tongue out at him in response.
And yes, Henry and Camille did stay with Nani and Papi during the game, and yes, they did have a blast. And yes, because Camille did not attend the game, it does mean that she will have to find another opportunity to wear her new Baylor cheerleader outfit, and yes, when she does in fact wear it, I will post pictures. I promise.
And yes, Camille did see another endocrinologist on Friday, and yes, he was a huge improvement over the last one. And yes, he too was thoroughly baffled by Camille, and yes, he too had no idea what could be causing all of her hormone issues. And yes, he did run more tests, and yes, those tests will take 2-3 weeks to get back. And yes, that is very annoying.
And yes, not surprisingly, all of Camille's latest GI tests did come back normal (read: unhelpful), and yes, that is also very annoying.
And yes, last but not least, I am feeling much better than I was when I wrote my last post, and yes, that probably has a lot to do with the fact that you all continue to lift us up with your amazing support. And yes, although I have said this a thousand times before, thank you.
Wednesday, February 24, 2010
Not Just the Facts
So much to tell you. So much has happened. So many thoughts and feelings swirling around in my head.
I'll start with the facts...
The Facts:
So as most of you know, either through Facebook or my mother ;), Camille was admitted to the hospital on Monday with pneumonia. This latest round of sickness all started last Wednesday evening when Camille started to run a very high fever. By Thursday morning, her fever was up to 104, so of course, I took her into her pediatrician. He did a flu test and a strep test, both of which were negative. Then he took a chest x-ray. The x-ray showed some pneumonia in the bottom of one of Camille's lungs, and so he gave her shot of antibiotics, and sent us home on yet another antibiotic and breathing treatments. Her fever was down by the next day, and we were doing breathing treatments round the clock, so we thought she was getting better. Later that weekend, she started having trouble breathing. She was gasping and gagging, and her breathing was just incredibly labored. We took her into an Urgent Care center, and to the ER, but her oxygen saturations were still in the bottom of the normal range, and so we thought she would be fine in a few days. By Monday, though, we took her into our pediatrician's office because in a matter of hours, her breathing had gotten significantly worse. I heard our pediatrician outside the exam room saying, "Oh Camille, Camille. I should have known you would be back to see me," in his usual fun, joking tone. Then he walked in the door, took one look at Camille, and said that he had to admit her to the hospital. Then he opened back up the door, and shouted at a nurse to bring him a nebulizer NOW. It was a little disconcerting. Okay, it was a lot disconcerting.
So, we're here. At yet another hospital. Hooked up to more monitors. Answering more medical history questions. Running more tests. Telling Camille's story to more medical people. The pneumonia is now in both lungs. Camille has been needing to be on oxygen because her oxygen saturations are too low without it. She is receiving breathing treatments every 3 hours, and "patting" treatments every 6 hours. What in the heck are "patting" treatments, you ask? Well, those are Camille's personal favorites. That is where a Respiratory Therapist beats (I mean, pats) my sweet little girl firmly on the back to break up the mucous in her chest. It's fun (read: torture) for both baby and Mommy.
In the midst of all this craziness, Camille has also had a new battery of GI tests run because we saw a new GI doctor last week. We had just felt like something was being missed GI-wise, and so we wanted to get a second opinion. Our pediatrician referred us to a GI doc in Round Rock, and we really liked him. He was very understanding and thorough, and we really felt like he was committed to trying to find out why Camille has been having so many GI problems. My favorite part about him? He asked to hold Camille. He wanted to hold her and carry her around and show her off to all of the nurses. He sure knew the way to this Mom's heart. No other doctor that we have seen has asked to hold Camille. So anyway, he ordered a ton of tests (upper GI, lower GI and ultrasounds), and we are getting them done while we are in the hospital.
And now for the good stuff...
The Commentary:
1. The medical personnel here at this hospital have been very nice and for the most part, very helpful. But they have seriously acted completely dismayed by Camille. They have acted like they have never seen a G-button before or heard of a child with a genetic syndrome. I think one radiologist used the word "fascinating". Okay, so that's not necessarily a bad word to use---when it's used to describe a rare kind of plant or animal! But not my baby!
2. Respiratory Therapists are a really nosy bunch. Seriously people. Just come in and do your breathing treatments and your "patting". You don't have to know every little thing about my child to do that. I have felt like I was being interrogated on a witness stand during almost every RT visit. Maybe they just feel the need make small talk during the breathing treatments. The quiet hum of the nebulizer works for me, but maybe it's just gotten too old for them. Or maybe all of those steroid fumes are starting to go to their heads. Can I claim that for why I've been so loopy lately?
3. Or maybe my loopiness is from total sleep deprivation. I now see why that's used as a torture technique. It is pure torture. And it's starting to take its toll. I recently rubbed toothpaste all over my hands, thinking it was hand lotion. I have accidentally gotten out and left my car running in two different parking lots on two different occasions in the past week. I forgot to send Henry to school the other day with a coat, and he had to wear one from "lost and found" when his class went out on the playground. Ouch. And just today I dumped a full bottle of formula all over the floor because I tried to pour it into a closed feeding bag, AND I walked out of a radiation room after one of Camille's tests still wearing my heavy shielding apron so that the tech had to chase me down to retrieve it. There's no telling how long I would have worn that thing without realizing it!
4. So a nurse aide walked into Camille's room today and said that she came to bathe Camille. She filled a tub with water and soap, and then said to me, "Okay, here, Mom. Do you want to bathe her?" I looked at her and seriously said, "No, not necessarily." The old me--the me that actually got sleep and wasn't so unbelievably beat down--would have worried and worried that saying that made me look like a horrible mom. But the new me--the totally tired, weary-of-it all, almost-completely-beat-down me--just thought to myself, "Heck no, lady, not if you're capable and willing. I am so freaking tired. You are more than welcome to bathe her while I sit down for the only five minutes that I'll get to all day!" And I did just that. And only felt slightly guilty about it.
5. I was actually mistaken for a doctor today. No, it's not because I was looking so professional and doctor-ish in my Baylor t-shirt, sweat pants, limp hair and dark-circled eyes. It was because of my vast medical knowledge. Yup, that's really it. A radiologist was asking me about some of Camille's history today, and as I was answering his questions, I realized he was looking at me funny. He then asked me, "Are you a doctor?" Uh, no. "Are you in the medical profession then?" Uh, no again. "Oh, it just sounds like you know all of this medical stuff really well." I guess that's what happens when you have spent the last nine months either in the hospital, or the doctor's office, or scouring medical sites on the Internet. I should have answered that I actually do have my M.D. in Genetics from the World Wide Web, but I wasn't quick enough to come up with that clever of a reply. Must be that whole sleep deprivation thing again.
6. I miss my little boy. Henry continues to be a real trooper through all of this. He is currently staying with his Nani and Papi in Fort Worth, which he thinks is way better than being at Mommy and Daddy's house anyway. But I can barely stand it. I miss his little voice chattering away a mile a minute. I miss the way he is so snuggly after his naps. I miss his constant singing and question-asking. And okay, I even miss all of his little shenanigans. The latest adorable thing he is doing? He will start counting, and forget a number, but instead of just skipping it, he will replace it with the word "number". For instance, he'll say, "One, two, three, four, five, number, number, eight, nine, ten." Love it!
7. The people who designed this hospital, and for that matter, Scott and White hospital, did not have a special needs baby. How do I know this, you ask? Well, simply because in both hospitals, you have to walk through the labor and delivery waiting area in order to get to the NICU and pediatric wings. What's the big deal about that, you ask? Well, if you have a special needs baby, or a chronically sick baby, it is so darn hard to have to walk through the area where everyone is anxiously awaiting their perfect little bundles of joy in order to see your baby who is struggling. I almost want to throw up every time I have to do that. Maybe I'm just bitter. Okay, probably I am. But I don't think there is anything more difficult than seeing all of these other people having healthy babies when yours is not.
8. And I guess that brings me to say that I am honestly struggling right now. This latest hospital stay has been more difficult than anything else so far, and I'm not really sure why. I think it might be because I keep having this feeling that this is just a preview of our future, a small glimpse of what our lives are going to be like from now on, and I just don't know if I can do it. This is the first time since Camille was just born that I have seriously thought over and over again, "I can't do this. I can't do this. I can't do this." I just don't know if I can do repeated hospital stays and constant medical issues. And I don't know how much longer we can keep up this crazy pace, and still keep our sanity. I am tired; I am stressed; I am weary; I am sad. This just was not what I imagined my life to be like, and it seems to just keep getting worse. And so, I have been praying. One simple prayer. "God, have mercy." That's it. I started praying it at about 4:00 a.m. our first night in the hospital when Camille was awake and screaming inconsolably. I repeated it over and over in my head. And I guess I will just keep praying that, and hoping that I can begin to feel God's mercy in new ways, even in the midst of all of this.
I'll start with the facts...
The Facts:
So as most of you know, either through Facebook or my mother ;), Camille was admitted to the hospital on Monday with pneumonia. This latest round of sickness all started last Wednesday evening when Camille started to run a very high fever. By Thursday morning, her fever was up to 104, so of course, I took her into her pediatrician. He did a flu test and a strep test, both of which were negative. Then he took a chest x-ray. The x-ray showed some pneumonia in the bottom of one of Camille's lungs, and so he gave her shot of antibiotics, and sent us home on yet another antibiotic and breathing treatments. Her fever was down by the next day, and we were doing breathing treatments round the clock, so we thought she was getting better. Later that weekend, she started having trouble breathing. She was gasping and gagging, and her breathing was just incredibly labored. We took her into an Urgent Care center, and to the ER, but her oxygen saturations were still in the bottom of the normal range, and so we thought she would be fine in a few days. By Monday, though, we took her into our pediatrician's office because in a matter of hours, her breathing had gotten significantly worse. I heard our pediatrician outside the exam room saying, "Oh Camille, Camille. I should have known you would be back to see me," in his usual fun, joking tone. Then he walked in the door, took one look at Camille, and said that he had to admit her to the hospital. Then he opened back up the door, and shouted at a nurse to bring him a nebulizer NOW. It was a little disconcerting. Okay, it was a lot disconcerting.
So, we're here. At yet another hospital. Hooked up to more monitors. Answering more medical history questions. Running more tests. Telling Camille's story to more medical people. The pneumonia is now in both lungs. Camille has been needing to be on oxygen because her oxygen saturations are too low without it. She is receiving breathing treatments every 3 hours, and "patting" treatments every 6 hours. What in the heck are "patting" treatments, you ask? Well, those are Camille's personal favorites. That is where a Respiratory Therapist beats (I mean, pats) my sweet little girl firmly on the back to break up the mucous in her chest. It's fun (read: torture) for both baby and Mommy.
In the midst of all this craziness, Camille has also had a new battery of GI tests run because we saw a new GI doctor last week. We had just felt like something was being missed GI-wise, and so we wanted to get a second opinion. Our pediatrician referred us to a GI doc in Round Rock, and we really liked him. He was very understanding and thorough, and we really felt like he was committed to trying to find out why Camille has been having so many GI problems. My favorite part about him? He asked to hold Camille. He wanted to hold her and carry her around and show her off to all of the nurses. He sure knew the way to this Mom's heart. No other doctor that we have seen has asked to hold Camille. So anyway, he ordered a ton of tests (upper GI, lower GI and ultrasounds), and we are getting them done while we are in the hospital.
And now for the good stuff...
The Commentary:
1. The medical personnel here at this hospital have been very nice and for the most part, very helpful. But they have seriously acted completely dismayed by Camille. They have acted like they have never seen a G-button before or heard of a child with a genetic syndrome. I think one radiologist used the word "fascinating". Okay, so that's not necessarily a bad word to use---when it's used to describe a rare kind of plant or animal! But not my baby!
2. Respiratory Therapists are a really nosy bunch. Seriously people. Just come in and do your breathing treatments and your "patting". You don't have to know every little thing about my child to do that. I have felt like I was being interrogated on a witness stand during almost every RT visit. Maybe they just feel the need make small talk during the breathing treatments. The quiet hum of the nebulizer works for me, but maybe it's just gotten too old for them. Or maybe all of those steroid fumes are starting to go to their heads. Can I claim that for why I've been so loopy lately?
3. Or maybe my loopiness is from total sleep deprivation. I now see why that's used as a torture technique. It is pure torture. And it's starting to take its toll. I recently rubbed toothpaste all over my hands, thinking it was hand lotion. I have accidentally gotten out and left my car running in two different parking lots on two different occasions in the past week. I forgot to send Henry to school the other day with a coat, and he had to wear one from "lost and found" when his class went out on the playground. Ouch. And just today I dumped a full bottle of formula all over the floor because I tried to pour it into a closed feeding bag, AND I walked out of a radiation room after one of Camille's tests still wearing my heavy shielding apron so that the tech had to chase me down to retrieve it. There's no telling how long I would have worn that thing without realizing it!
4. So a nurse aide walked into Camille's room today and said that she came to bathe Camille. She filled a tub with water and soap, and then said to me, "Okay, here, Mom. Do you want to bathe her?" I looked at her and seriously said, "No, not necessarily." The old me--the me that actually got sleep and wasn't so unbelievably beat down--would have worried and worried that saying that made me look like a horrible mom. But the new me--the totally tired, weary-of-it all, almost-completely-beat-down me--just thought to myself, "Heck no, lady, not if you're capable and willing. I am so freaking tired. You are more than welcome to bathe her while I sit down for the only five minutes that I'll get to all day!" And I did just that. And only felt slightly guilty about it.
5. I was actually mistaken for a doctor today. No, it's not because I was looking so professional and doctor-ish in my Baylor t-shirt, sweat pants, limp hair and dark-circled eyes. It was because of my vast medical knowledge. Yup, that's really it. A radiologist was asking me about some of Camille's history today, and as I was answering his questions, I realized he was looking at me funny. He then asked me, "Are you a doctor?" Uh, no. "Are you in the medical profession then?" Uh, no again. "Oh, it just sounds like you know all of this medical stuff really well." I guess that's what happens when you have spent the last nine months either in the hospital, or the doctor's office, or scouring medical sites on the Internet. I should have answered that I actually do have my M.D. in Genetics from the World Wide Web, but I wasn't quick enough to come up with that clever of a reply. Must be that whole sleep deprivation thing again.
6. I miss my little boy. Henry continues to be a real trooper through all of this. He is currently staying with his Nani and Papi in Fort Worth, which he thinks is way better than being at Mommy and Daddy's house anyway. But I can barely stand it. I miss his little voice chattering away a mile a minute. I miss the way he is so snuggly after his naps. I miss his constant singing and question-asking. And okay, I even miss all of his little shenanigans. The latest adorable thing he is doing? He will start counting, and forget a number, but instead of just skipping it, he will replace it with the word "number". For instance, he'll say, "One, two, three, four, five, number, number, eight, nine, ten." Love it!
7. The people who designed this hospital, and for that matter, Scott and White hospital, did not have a special needs baby. How do I know this, you ask? Well, simply because in both hospitals, you have to walk through the labor and delivery waiting area in order to get to the NICU and pediatric wings. What's the big deal about that, you ask? Well, if you have a special needs baby, or a chronically sick baby, it is so darn hard to have to walk through the area where everyone is anxiously awaiting their perfect little bundles of joy in order to see your baby who is struggling. I almost want to throw up every time I have to do that. Maybe I'm just bitter. Okay, probably I am. But I don't think there is anything more difficult than seeing all of these other people having healthy babies when yours is not.
8. And I guess that brings me to say that I am honestly struggling right now. This latest hospital stay has been more difficult than anything else so far, and I'm not really sure why. I think it might be because I keep having this feeling that this is just a preview of our future, a small glimpse of what our lives are going to be like from now on, and I just don't know if I can do it. This is the first time since Camille was just born that I have seriously thought over and over again, "I can't do this. I can't do this. I can't do this." I just don't know if I can do repeated hospital stays and constant medical issues. And I don't know how much longer we can keep up this crazy pace, and still keep our sanity. I am tired; I am stressed; I am weary; I am sad. This just was not what I imagined my life to be like, and it seems to just keep getting worse. And so, I have been praying. One simple prayer. "God, have mercy." That's it. I started praying it at about 4:00 a.m. our first night in the hospital when Camille was awake and screaming inconsolably. I repeated it over and over in my head. And I guess I will just keep praying that, and hoping that I can begin to feel God's mercy in new ways, even in the midst of all of this.
Sunday, February 14, 2010
Valentine
Camille has something she would like to ask you...
" Will
You
Be
My Valentine?"Oh wait! Never mind! She forgot! She already has a Valentine...
And he's as sweet as this cupcake he's eating.
Yep, super sweet Valentines for sure! Tuesday, February 9, 2010
Whoo-hoo!
We, two very adorable children, one with a scratch on the nose, the other with a big silly bow, have two very exciting things to tell you.
Did we mention they are two very exciting things? Ready??? 
No, don't worry. One of them is not that our Mama is pregnant again.
Okay, here goes! The first is that Camille did not have to be admitted to the hospital. Her infection is clearing up!
The second is that Camille ate 5 ounces of formula BY MOUTH FROM A BOTTLE TODAY! Can you tell how proud she is?!
See, told ya! Very exciting! Can we get a Whoo-hoo?! (Or Sic 'Em Bears. That kinda works for this photo too!).Friday, February 5, 2010
Sick...again...
We are a house full of sickies once again. Or is is sickos? Sickos sounds too much like psychos, so I'll stick with sickies. Psycho hits just a little too close to home as a descriptor for me right now.
Anyway... Jason, Henry and Camille are all sick, each with their own issues. Henry had pink eye followed by a cough/congestion which has lasted for over a week now. Jason may or may not have the flu. And Camille. Sweet little Ms. I-catch-everything Camille. We are not sure what she has.
Her latest round of the sickies started right after we got home from the Houston genetics visit. She had fever and some congestion, and our pediatrician thought she might have seasonal flu. She took Tamiflu for 5 days, and that seemed to clear that up. Then, she started screaming and flailing (more than usual) when we were feeding her. We were concerned that her g-button might be infected, and it turns out it was.
Our pediatrician originally thought that she had a staph infection in her button, and so he gave her an antibiotic for that while we waited on the culture to come back. However, she started running fever again last night, and it was pretty high, so I took her back into the doctor today. The culture had come back by now and it was not staph, but some sort of other bacterial infection. The pediatrician who saw Camille today (ours is out of town and probably very thankful that he gets to miss the latest round of Camille drama) said that it was a really uncommon form of bacteria that is not seen much (gee, sound familiar for Camille?). He also said that this type of bacteria usually does not respond to oral antibiotics. So, he gave Camille a shot of antibiotics today, will give her another one tomorrow (yes, we have to go back into the doctor on a Saturday), and then if it doesn't respond to those, he will have to admit her to have IV antibiotics. Fun, fun.
Not only does she have that going on, but he also thought that she might have RSV. He is going to check her breathing again tomorrow to see if it is better after we have been giving her breathing treatments today.
We also found out today that Camille's DHEA levels are still really elevated, and have even gone up slightly from before. No one knows exactly what that means still, even after these new rounds of tests, which is exceedingly frustrating to me. Apparently, a lot of Camille's sleep/irritability issues could be caused by her elevated DHEA levels, which means that we would really like to figure out a means of treating this to get her feeling better. We have been up with Camille all night almost every night for the past few weeks as she has had a harder and harder time sleeping.
So, I'll try to update you tomorrow on the latest. You all continue to be such an amazing support to us, and we truly do covet your prayers.
Anyway... Jason, Henry and Camille are all sick, each with their own issues. Henry had pink eye followed by a cough/congestion which has lasted for over a week now. Jason may or may not have the flu. And Camille. Sweet little Ms. I-catch-everything Camille. We are not sure what she has.
Her latest round of the sickies started right after we got home from the Houston genetics visit. She had fever and some congestion, and our pediatrician thought she might have seasonal flu. She took Tamiflu for 5 days, and that seemed to clear that up. Then, she started screaming and flailing (more than usual) when we were feeding her. We were concerned that her g-button might be infected, and it turns out it was.
Our pediatrician originally thought that she had a staph infection in her button, and so he gave her an antibiotic for that while we waited on the culture to come back. However, she started running fever again last night, and it was pretty high, so I took her back into the doctor today. The culture had come back by now and it was not staph, but some sort of other bacterial infection. The pediatrician who saw Camille today (ours is out of town and probably very thankful that he gets to miss the latest round of Camille drama) said that it was a really uncommon form of bacteria that is not seen much (gee, sound familiar for Camille?). He also said that this type of bacteria usually does not respond to oral antibiotics. So, he gave Camille a shot of antibiotics today, will give her another one tomorrow (yes, we have to go back into the doctor on a Saturday), and then if it doesn't respond to those, he will have to admit her to have IV antibiotics. Fun, fun.
Not only does she have that going on, but he also thought that she might have RSV. He is going to check her breathing again tomorrow to see if it is better after we have been giving her breathing treatments today.
We also found out today that Camille's DHEA levels are still really elevated, and have even gone up slightly from before. No one knows exactly what that means still, even after these new rounds of tests, which is exceedingly frustrating to me. Apparently, a lot of Camille's sleep/irritability issues could be caused by her elevated DHEA levels, which means that we would really like to figure out a means of treating this to get her feeling better. We have been up with Camille all night almost every night for the past few weeks as she has had a harder and harder time sleeping.
So, I'll try to update you tomorrow on the latest. You all continue to be such an amazing support to us, and we truly do covet your prayers.
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