Well, Henry and Camille survived the Swine Flu! We are so relieved that they appeared to have mild cases, Henry especially. That boy was up to all his old tricks after one dose of Tamiflu. I see now why it is in such high demand--it's apparently magical! Camille took a little longer, but she got over hers pretty fast too. She was even able to make her Ophthalmology, Gastro and lab appointments in Fort Worth on Thursday! I, however, was not. I'm not sure if I had the flu, or if I was just stressed about both of my little ones having it, but either way, I felt like I had been run over by a truck on Thursday and Friday. Good thing I have such an amazing husband, parents, and father-in-law who all pitched in to help Camille get to where she needed to go on Thursday, and treat Henry to several days of fun.
And so now, we just continue to live in limbo in what I like to call "The Crazy World of Genetics". Never been there? I never expected to be there either. All I knew about genetics before Camille's birth came from a course-by-video class I took at TCC the summer after my freshman year in college to fulfill one of my basic science credit requirements. I basically thought genetics was about punnet squares and pea plants. I had no idea it could mean all this.
It is absolutely insane what is out there. There are all of these syndromes that no one has ever heard of, and they can be absolutely devastating. We are seeing this now first-hand. It's a true nightmare. Our genetics team has basically narrowed it down to around 3 (they added one more today that they think it could be) syndromes, and none of them are good. In fact, each one seems worse than the last. It's like we think, "Oh my gosh! What could be worse than that?" and then we find out exactly what that worse thing could be. I guess we should stop asking that question, huh?
You see, as I've mentioned before, the chromosome test coming back normal was a good thing, but also a not-so-good thing. We were glad that Camille did not have a chromosomal syndrome, but now after hearing about the other genetic syndromes she could have (now that chromosomal syndromes have been ruled out), we are almost wishing it was a chromosomal problem.
One of the things that is really hard about these genetic syndromes that they believe Camille could possibly have is that they are inherited in autosomal recessive pattern. Don't worry--I'm not going to draw a punnett square. What autosomal recessive means, though, is that both Jason and I would have to be carriers of the defective gene to have passed the syndrome onto Camille. With each pregnancy, we would have a 75% chance of having a child without the syndrome, and a 25% of having a child with the syndrome. A "good" thing about the chromosomal syndromes is that they are not autosomal recessive. Most of them occur as just random mutations that would be extremely unlikely to occur again in another pregnancy, or in the family later on down the line.
But with the autosomal recessive syndromes, like the ones we are now looking at, we have to come to terms with several things. One, we could not have any more children unless we wanted to risk passing on this syndrome again, and having another child suffer through all that Camille has. Two, Henry could very well be a carrier for the syndrome too, and therefore would need to be concerned about passing the syndrome onto his future children. Three, and this is the crazy one that might sound weird to anyone who hasn't been through this, there is this strange feeling of "fault" or "blame" that Jason and I feel about this. It's as if we feel this certain guilt that we could have passed on something to our child that is making her so miserable. It wasn't a random mutation--we gave it to her. Of course, it was not that we knew about it, or wanted it to happen, but still. The thoughts you have going through something like this are often so irrational, but they're there.
Going along with this, it's interesting how I never dreamed that any of this could happen to us. Maybe that's why I thought genetics was about punnett squares and pea plants--because I ignored all of the rest. I had heard about certain genetic syndromes, but I thought, "There's no way that my children could have something like that." It's like a certain kind of arrogance (sure probably a naivete too, but I think more of an arrogance) that I thought, and I think others think too if they are honest, that there was no way that I could pass something like this onto my child because I have "good genes". There's nothing like that in my family. (The fact is, most of the time that these things happen, there has been no history of it in the family. It's been in the family's genes the whole time, but just never surfaced).
And then there's the fact of these syndromes being so rare. I would think, "Oh that's so rare, that could never happen to me." We've learned that lesson the hard way this past week. Just because it's rare, doesn't mean it can't happen. One of the 3 syndromes they are now looking at is so unbelievably rare that it only affects 50 people in the world.
So that's where we sit now, trying to come to terms with things that we never thought could happen to us, to our sweet child. Things like: severe mental retardation, degeneration to a persistent vegetative state, extremely shortened life span. It's just plain hard. Add to that the fact that Camille is still very irritable and uncomfortable, and you have a pretty dismal situation.
But then you add in a sweet little 2 year old boy, who has learned to wrap his arms around your waist and squeeze you in a big bear hug; who has you in stitches constantly with the things that he says; who adores his baby sister in a way that brings tears to your eyes.
And then you add in the best family and friends in the world, who check on you and love on you and listen to all of your babbling about genetics and autosomal recessive patterns.
And finally, you add in our God, who thankfully is above everything, including the rarest, most horrific-sounding syndromes in the world. And even more thankfully, that amazing God created our Camille in His image. There is no more comforting thought to us right now than that.
Monday, October 19, 2009
Tuesday, October 13, 2009
When it rains...
...it pours. Especially at our house! Both Henry and Camille have Swine Flu. Camille was running a fever Sunday night, but it went away on Monday, so I thought she was okay. She slept a lot yesterday (which allowed me to do some cooking/baking I have been wanting to do during her naps--chocolate chip pumpkin bread, taco soup, trash/chex mix--all Fall-time comfort food, of course!), but she still seemed fine. Then, last night, her fever returned, and she cried like she has never cried before for over 2 hours. Jason and I tried everything to console her, but nothing worked. She has cried inconsolably before, but never quite like this. Usually there is at least a little time where we can calm her, but not last night. We finally got her to sleep about 1:00 a.m., and then she woke up crying again a few hours later. Her fever continued to climb throughout the morning, and then at 11:00 a.m., Jason called to tell me that Henry's school had called, and that he had a fever. Jason went to get Henry, and I called the doctor to get them both in to be seen.
I never assumed it was the flu--neither of them really had any other "flu-like" symptoms other than fever, and they had not been around anyone who had Swine Flu that we knew of. Henry was his usual happy, busy, wild-man self. He wasn't acting sick at all, but he was very flushed, and very warm. I thought he might just have a little virus, or that it was his 2-year molars that are coming in. Camille has low-grade fevers off and on a lot, but this time, since it was getting higher, we thought maybe her button was infected. We made them separate appointments at the doctor because we didn't want to have to take them both in at the same time while Camille was having such a hard time. So Jason took Camille in at 1:00 p.m., and called shortly after that to tell me that she had Swine Flu. She is too little for Tamiflu, and so we just have to let it run its course. The good thing is that we can keep her hydrated with her button, and our doctor went ahead and gave us an antibiotic to prevent a secondary infection. I took Henry in later on in the afternoon, and he has it too. He can take Tamiflu, though, which is good because it works really well with Swine Flu, just not necessarily with Seasonal Flu.
So, after paying out the nose for these 2 prescriptions (they are apparently both "special prescriptions" and so even with our insurance, they were expensive!), we are home and doing okay. Henry seems to feel better already, but Camille is not doing very well. Her fever is still climbing, and she is just burning up. She has also been vomiting, which is concerning.
I'll keep you posted on how they do. Right now, I'm munching on my comfort food (what is it about stress that makes you want to eat and not want to eat, all at the same time?), thanking God for my parents and Danny for their help yet again, loving the extra snuggles from my sweet boy (who does feel bad enough to slow down slightly), and hoping my little girl can catch a break sometime soon. There's bound to be one in her future. She deserves one more than anyone else in the world.
I never assumed it was the flu--neither of them really had any other "flu-like" symptoms other than fever, and they had not been around anyone who had Swine Flu that we knew of. Henry was his usual happy, busy, wild-man self. He wasn't acting sick at all, but he was very flushed, and very warm. I thought he might just have a little virus, or that it was his 2-year molars that are coming in. Camille has low-grade fevers off and on a lot, but this time, since it was getting higher, we thought maybe her button was infected. We made them separate appointments at the doctor because we didn't want to have to take them both in at the same time while Camille was having such a hard time. So Jason took Camille in at 1:00 p.m., and called shortly after that to tell me that she had Swine Flu. She is too little for Tamiflu, and so we just have to let it run its course. The good thing is that we can keep her hydrated with her button, and our doctor went ahead and gave us an antibiotic to prevent a secondary infection. I took Henry in later on in the afternoon, and he has it too. He can take Tamiflu, though, which is good because it works really well with Swine Flu, just not necessarily with Seasonal Flu.
So, after paying out the nose for these 2 prescriptions (they are apparently both "special prescriptions" and so even with our insurance, they were expensive!), we are home and doing okay. Henry seems to feel better already, but Camille is not doing very well. Her fever is still climbing, and she is just burning up. She has also been vomiting, which is concerning.
I'll keep you posted on how they do. Right now, I'm munching on my comfort food (what is it about stress that makes you want to eat and not want to eat, all at the same time?), thanking God for my parents and Danny for their help yet again, loving the extra snuggles from my sweet boy (who does feel bad enough to slow down slightly), and hoping my little girl can catch a break sometime soon. There's bound to be one in her future. She deserves one more than anyone else in the world.
Sunday, October 11, 2009
You asked for them...
...new pictures, that is!
Yes, I realize that the paci is HUGE on her little face, but those are the ones she likes! What Camille likes, Camille gets, or suffer the consequences!
Sweet little girl in the hospital sporting her "nose hose" (NG tube). I know, I know--medical humor is the worst. But you have to have some laughter somewhere, right?
Our little cupcake. Isn't she delicious?
Jason forbid me to put this on the blog, so of course, I did anyway! He thought Camille looked like Jennifer Grey in Dirty Dancing in this picture. Hey, what's wrong with that? That's the look of my generation! This is actually a picture of Camille wearing her Cowboys onesie with some leg warmers. We really weren't aiming for the 80's look...
And I couldn't leave my sweet little boy out! Here he is in his pirate outfit (Jason hates it when I call his clothes "outfits" :). Henry is not a fan of me taking his picture these days--it requires way too much stillness for his taste--so that's why there is only one picture of him.
Yes, I realize that the paci is HUGE on her little face, but those are the ones she likes! What Camille likes, Camille gets, or suffer the consequences!
Sweet little girl in the hospital sporting her "nose hose" (NG tube). I know, I know--medical humor is the worst. But you have to have some laughter somewhere, right?
Our little cupcake. Isn't she delicious?
Jason forbid me to put this on the blog, so of course, I did anyway! He thought Camille looked like Jennifer Grey in Dirty Dancing in this picture. Hey, what's wrong with that? That's the look of my generation! This is actually a picture of Camille wearing her Cowboys onesie with some leg warmers. We really weren't aiming for the 80's look...
And I couldn't leave my sweet little boy out! Here he is in his pirate outfit (Jason hates it when I call his clothes "outfits" :). Henry is not a fan of me taking his picture these days--it requires way too much stillness for his taste--so that's why there is only one picture of him.Camille has had a pretty good weekend, and so we are very thankful for that. She is running a fever of 101.5 tonight, so that is our big concern right now. We'll see how she is tomorrow. We've got some big appointments this week (follow-up GI, assessments for PT, OT and Speech, and ophthalmologist), so we'd appreciate your prayers for those as well. Thank you for your continued love and support!
Thursday, October 8, 2009
Turn Your Eyes Upon Jesus
In my attempt to make Camille's button feedings more enjoyable? comfortable? just darn bearable?, I bought a mobile to hang over her little bassinet in our bedroom where we do her feedings. I didn't have very high hopes for the mobile--it was pretty cheap--and although it hasn't done what I had hoped it would do--you know, make Camille smile and laugh and coo and clap in delight during her feedings--it has had an unexpected effect on me. It plays several songs, and one of them sounds like the beginning of the chorus to Turn Your Eyes Upon Jesus.
O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!
Refrain:
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.
Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conquerors we are!
His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!
When I hear that song on the mobile, I sing these words to myself, and I try, try, try to do just that. But I must admit, there are a lot of times when I want to turn more than my eyes upon Jesus. I want to throw all of my questions, all of my anger, all of my hurt at Him and just plain ask Him, "Why?" Isn't that so trite? Doesn't everyone want to ask God, "Why me?" But I have uttered those words over and over again, mainly whispered them desperately, often with tears running down my face. Why? Why? Why? Why is this happening to my baby, to my precious child? Why is this happening to my family? We have had such a difficult year already--why does it keep getting worse? Why, God, why?
These past few days have been particularly hard. In my last post, I had written that Camille seemed to be feeling better. On Monday, I had seriously thought we had turned a corner. Of course, I have thought this several times. Each time we change something, trying desperately to figure out what is wrong and how to make her more comfortable, things seem better for a day or two, and then they always seem to get worse after that. I don't know if it's just wishful thinking on our part that we keep thinking that this might be the time that we figured out what has been making her so miserable and fixed it so that she can feel better. I can't even count the number of times I have called my Mom to tell her that I think I have finally solved the problem, and Camille seems like she is doing much better.
Things this week have been the worst yet. I think it has been even harder this time because Camille had started smiling and was having some really happy moments. I kept telling myself, "See, it is so good that you went ahead and let them put in the feeding tube because look how much better she is doing!" Then, as they always do, things went back downhill and fast. Camille has been crying almost incessantly for the past few days. She has literally cried (and therefore not slept for more than 10-15 minutes at a time) since 7:00 p.m. Wednesday night. I am literally having to hold her down for her button feeds because she bucks like a wild bronco during them. She is also still refusing to take anything by mouth--she arches, chokes, gags, spits out, etc. I tried to give her a bottle today, and she acted like she didn't know what to do with it.
And then there's the news we got today. It should be good news, and I guess it is. Camille's chromosome test came back normal. She does not have a chromosome syndrome like the geneticist and neurologist had thought. This is good news, but also kind of scary, and a little frustrating. It's scary because if it's not chromosomal, it means that some other much worse genetic syndromes move to the top of the list. It's frustrating because it's just one more thing that makes Camille a complete mystery. It is so hard to hear over and over again the words that we have heard from countless doctors: "There is something wrong--she has something--we just don't know what." We were hoping that we would have our answer in the chromosome testing, and we don't. Again, that's good, but it also means more testing, more wondering, more googling (oh wait, I gave that up, right?).
So we continue to wait for answers, for relief.
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.
And we find peace in the knowledge that the ultimate relief, the ultimate rest, even the ultimate answer, lies in Him.
O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!
Refrain:
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.
Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conquerors we are!
His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!
When I hear that song on the mobile, I sing these words to myself, and I try, try, try to do just that. But I must admit, there are a lot of times when I want to turn more than my eyes upon Jesus. I want to throw all of my questions, all of my anger, all of my hurt at Him and just plain ask Him, "Why?" Isn't that so trite? Doesn't everyone want to ask God, "Why me?" But I have uttered those words over and over again, mainly whispered them desperately, often with tears running down my face. Why? Why? Why? Why is this happening to my baby, to my precious child? Why is this happening to my family? We have had such a difficult year already--why does it keep getting worse? Why, God, why?
These past few days have been particularly hard. In my last post, I had written that Camille seemed to be feeling better. On Monday, I had seriously thought we had turned a corner. Of course, I have thought this several times. Each time we change something, trying desperately to figure out what is wrong and how to make her more comfortable, things seem better for a day or two, and then they always seem to get worse after that. I don't know if it's just wishful thinking on our part that we keep thinking that this might be the time that we figured out what has been making her so miserable and fixed it so that she can feel better. I can't even count the number of times I have called my Mom to tell her that I think I have finally solved the problem, and Camille seems like she is doing much better.
Things this week have been the worst yet. I think it has been even harder this time because Camille had started smiling and was having some really happy moments. I kept telling myself, "See, it is so good that you went ahead and let them put in the feeding tube because look how much better she is doing!" Then, as they always do, things went back downhill and fast. Camille has been crying almost incessantly for the past few days. She has literally cried (and therefore not slept for more than 10-15 minutes at a time) since 7:00 p.m. Wednesday night. I am literally having to hold her down for her button feeds because she bucks like a wild bronco during them. She is also still refusing to take anything by mouth--she arches, chokes, gags, spits out, etc. I tried to give her a bottle today, and she acted like she didn't know what to do with it.
And then there's the news we got today. It should be good news, and I guess it is. Camille's chromosome test came back normal. She does not have a chromosome syndrome like the geneticist and neurologist had thought. This is good news, but also kind of scary, and a little frustrating. It's scary because if it's not chromosomal, it means that some other much worse genetic syndromes move to the top of the list. It's frustrating because it's just one more thing that makes Camille a complete mystery. It is so hard to hear over and over again the words that we have heard from countless doctors: "There is something wrong--she has something--we just don't know what." We were hoping that we would have our answer in the chromosome testing, and we don't. Again, that's good, but it also means more testing, more wondering, more googling (oh wait, I gave that up, right?).
So we continue to wait for answers, for relief.
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.
And we find peace in the knowledge that the ultimate relief, the ultimate rest, even the ultimate answer, lies in Him.
Tuesday, October 6, 2009
Cute as (and with) a button
Well, we're home, but you probably already figured that out. I've been thoroughly chastised from not posting that on my blog, but after reading this post, I'm sure you'll fully understand why.
I left off before asking you to pray for two specific things for Camille. One was that her heart rate would stop dropping, and that she would stop having oxygen de-sats. Shortly after I wrote that last post, Camille's heart rate did in fact stop dropping as much as before, and she did not have anymore de-sats. Her heart rate was still dropping occasionally when we left the hospital, but not near as much as before. It remains a mystery as to why. Our GI was still concerned about it when we left, and our pediatrician was very concerned about it when we went in for an appointment yesterday. But, from a cardiology perspective, her heart structure looks great, and so we may never know why it was doing that. I think I'm okay with that--it is a little nerve-wracking to be home without the monitors, which means you are left to wonder if everything in her little body is working okay at any given moment. But I'm trusting it is, and so far, everything seems fine.
The other thing I asked for you to pray for was for Camille to gain weight. We went ahead and made the very difficult decision to put in a g-button (stomach tube, but I hate that term, so I won't be using it except here to explain what a button is). Although Camille can eat, she was apparently not eating enough, especially enough to play catch-up on her growth. Back in June, if they had asked me to put in a g-button, I would have said absolutely not. No tubes whatsoever. But now, we're okay with it. If it will help Camille grow, then we're for it. It required a minor surgery, which she had the day before we were discharged.
And so, we arrived home last Wednesday evening, Camille now sporting a little button, and our house now sporting some intimidating new medical equipment. Our bedroom decor now includes an IV pole and a feeding pump. I'm not seeing that it adds much style to the room yet, but maybe it'll get there.
The plan was to feed Camille by bottle during the day, just like we were doing before, and then pump her full of formula through her button for 10 hours continuously at night. So basically, we were supposed to only have to use the button at night for a continuous night feeding, and occasionally during the day if Camille did not finish a bottle. However, as she often does, our little princess had other plans. First, since we came home, she has decided that she does not want to take anything by mouth. Zilch, nada, NOTHING. She acts like her bottles are full of acid instead of formula. This means that not only do we get to do the continuous night feedings by button, we also get to do all of her day feedings by button as well, at least until she decides to take a bottle again. Second, Camille hates laying there for her button feeds. She squirms, wiggles, kicks, cries, etc.
It doesn't help that I have been fighting the feeding pump since it arrived in our home, and I can say without a doubt that the pump can claim full victory. I'm sure that if anyone peeked in our bedroom window during a feed, it would look like a 3-ring circus. There's me, trying to hold onto a tube that is flying around squirting formula everywhere, while at the same time trying to figure out what the rate of the flow should be, and wondering why in the heck the darn thing is angrily beeping at me. Then, inevitably, the tubing gets clogged, and while I am trying to get that fixed, stuff starts coming out of Camille's button and leaking onto everything. The whole time I am trying my hardest not to scream every cuss word in the book while my dog happily licks up all of the formula---the very expensive, we-really-don't-want-to-waste-a-drop-formula---off of the floor, and Camille lays wailing away. I feel sure she's not holding back on the cuss words as I am trying to, so it's probably better that I can't understand what she is saying yet. It's just not a pretty picture, but I'm sure it will get better, right? Right...
However, I can very happily say that every feeding pump mishap has been totally worth it because Camille has gained almost a whole pound in 11 days! I am overjoyed at that! We found out about this weight gain right when I was starting to have second thoughts about the button, not only because of the difficulty in figuring out how to work it all, but also because of all of my emotions surrounding it. We've known from the very beginning that Camille will likely have some level of special needs, and now we know that even more than ever after meeting with all of these various doctors, but there are some days when I can forget that. I can just look at her and think of her as a regular ol' baby. The button, however, is just this thing that is right there, staring me in the face, a constant reminder that Camille is not just a regular ol' baby. That's really hard.
On top of that, the button makes me feel like we were defeated in our fight to get Camille to eat. When she was first born, she had so much trouble learning to eat that the staff in the NICU warned us that she may never learn to eat at all. The moment they mentioned this, Jason and I became utterly determined to get that girl to eat. After a week of trying every feeding position and technique in the book, not to mention every bottle nipple on the market, we finally found what worked for Camille, and she began to eat. The staff that had evaluated her the previous week came back to watch her eat, and they were absolutely amazed. They literally called it a miracle that she improved her eating technique that much in that amount of time. We were so proud. And so, it is a little disheartening that we have had to go this route. The encouraging thing is that everyone fully believes that Camille will not have to have her button forever. It is just there to help her play catch-up for now, and then it can come out in the future.
So, despite my mixed emotions, I'm really okay with the button. An added bonus is that not only is Camille gaining weight with her button, but she is feeling much, much better now that her little tummy is staying very full (well, feeling much better when she is not hooked up to the dreaded feeding pump). She has started smiling all of the time now, and has even started "talking" to us. She also likes to "talk" to that pretty baby in the mirror too. She tells that baby in the mirror all sorts of stuff with this adorable grin on her face. I've begun to wonder about their conversations. I fear they may go something like this:
"You should see my Mommy battle my feeding pump. It's stinkin' hilarious! I've started refusing to take a bottle just so I can have more opportunities to witness the debacle!"
Wouldn't put it past her, folks. Our little girl is one of a kind, and we wouldn't trade her, button or no button.
I left off before asking you to pray for two specific things for Camille. One was that her heart rate would stop dropping, and that she would stop having oxygen de-sats. Shortly after I wrote that last post, Camille's heart rate did in fact stop dropping as much as before, and she did not have anymore de-sats. Her heart rate was still dropping occasionally when we left the hospital, but not near as much as before. It remains a mystery as to why. Our GI was still concerned about it when we left, and our pediatrician was very concerned about it when we went in for an appointment yesterday. But, from a cardiology perspective, her heart structure looks great, and so we may never know why it was doing that. I think I'm okay with that--it is a little nerve-wracking to be home without the monitors, which means you are left to wonder if everything in her little body is working okay at any given moment. But I'm trusting it is, and so far, everything seems fine.
The other thing I asked for you to pray for was for Camille to gain weight. We went ahead and made the very difficult decision to put in a g-button (stomach tube, but I hate that term, so I won't be using it except here to explain what a button is). Although Camille can eat, she was apparently not eating enough, especially enough to play catch-up on her growth. Back in June, if they had asked me to put in a g-button, I would have said absolutely not. No tubes whatsoever. But now, we're okay with it. If it will help Camille grow, then we're for it. It required a minor surgery, which she had the day before we were discharged.
And so, we arrived home last Wednesday evening, Camille now sporting a little button, and our house now sporting some intimidating new medical equipment. Our bedroom decor now includes an IV pole and a feeding pump. I'm not seeing that it adds much style to the room yet, but maybe it'll get there.
The plan was to feed Camille by bottle during the day, just like we were doing before, and then pump her full of formula through her button for 10 hours continuously at night. So basically, we were supposed to only have to use the button at night for a continuous night feeding, and occasionally during the day if Camille did not finish a bottle. However, as she often does, our little princess had other plans. First, since we came home, she has decided that she does not want to take anything by mouth. Zilch, nada, NOTHING. She acts like her bottles are full of acid instead of formula. This means that not only do we get to do the continuous night feedings by button, we also get to do all of her day feedings by button as well, at least until she decides to take a bottle again. Second, Camille hates laying there for her button feeds. She squirms, wiggles, kicks, cries, etc.
It doesn't help that I have been fighting the feeding pump since it arrived in our home, and I can say without a doubt that the pump can claim full victory. I'm sure that if anyone peeked in our bedroom window during a feed, it would look like a 3-ring circus. There's me, trying to hold onto a tube that is flying around squirting formula everywhere, while at the same time trying to figure out what the rate of the flow should be, and wondering why in the heck the darn thing is angrily beeping at me. Then, inevitably, the tubing gets clogged, and while I am trying to get that fixed, stuff starts coming out of Camille's button and leaking onto everything. The whole time I am trying my hardest not to scream every cuss word in the book while my dog happily licks up all of the formula---the very expensive, we-really-don't-want-to-waste-a-drop-formula---off of the floor, and Camille lays wailing away. I feel sure she's not holding back on the cuss words as I am trying to, so it's probably better that I can't understand what she is saying yet. It's just not a pretty picture, but I'm sure it will get better, right? Right...
However, I can very happily say that every feeding pump mishap has been totally worth it because Camille has gained almost a whole pound in 11 days! I am overjoyed at that! We found out about this weight gain right when I was starting to have second thoughts about the button, not only because of the difficulty in figuring out how to work it all, but also because of all of my emotions surrounding it. We've known from the very beginning that Camille will likely have some level of special needs, and now we know that even more than ever after meeting with all of these various doctors, but there are some days when I can forget that. I can just look at her and think of her as a regular ol' baby. The button, however, is just this thing that is right there, staring me in the face, a constant reminder that Camille is not just a regular ol' baby. That's really hard.
On top of that, the button makes me feel like we were defeated in our fight to get Camille to eat. When she was first born, she had so much trouble learning to eat that the staff in the NICU warned us that she may never learn to eat at all. The moment they mentioned this, Jason and I became utterly determined to get that girl to eat. After a week of trying every feeding position and technique in the book, not to mention every bottle nipple on the market, we finally found what worked for Camille, and she began to eat. The staff that had evaluated her the previous week came back to watch her eat, and they were absolutely amazed. They literally called it a miracle that she improved her eating technique that much in that amount of time. We were so proud. And so, it is a little disheartening that we have had to go this route. The encouraging thing is that everyone fully believes that Camille will not have to have her button forever. It is just there to help her play catch-up for now, and then it can come out in the future.
So, despite my mixed emotions, I'm really okay with the button. An added bonus is that not only is Camille gaining weight with her button, but she is feeling much, much better now that her little tummy is staying very full (well, feeling much better when she is not hooked up to the dreaded feeding pump). She has started smiling all of the time now, and has even started "talking" to us. She also likes to "talk" to that pretty baby in the mirror too. She tells that baby in the mirror all sorts of stuff with this adorable grin on her face. I've begun to wonder about their conversations. I fear they may go something like this:
"You should see my Mommy battle my feeding pump. It's stinkin' hilarious! I've started refusing to take a bottle just so I can have more opportunities to witness the debacle!"
Wouldn't put it past her, folks. Our little girl is one of a kind, and we wouldn't trade her, button or no button.
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