My heart and brain are in total overload this evening.....it has taken me roughly 45 minutes or so to get Sophie to sleep. Now I realize that this is not unusual for babies however the effort it takes to get our little one to bed is perhaps a bit much. Getting Sophie to sleep is the time where her sensory issues are front and center. I longingly remember the hours I spent ruining Cole's sleeping habits by rocking him....the smell of his sweet baby skin, the way he would almost purr with contentment, the selfish comfort I felt in holding my baby and knowing that all was right in our worlds. Rocking is a word I am quite sure Sophie will never have in her vocabulary.
As I bounced, swayed, squatted, hopped, swung, completed knee bends, and standing stomach crunches I felt like anyone watching me would think I was performing some type of ritualistic tribal dance...when in fact all of the above is required by my sweet little girl to get her to sleep. At times the movements are so awkward I feel like Julia Stiles in the movie Save The Last Dance before she gets "rhythm" (don't knock it, it's a great movie). At times I feel completely jipped. I feel selfish and angry when I know I should be grateful that there is at least something I can do to get my daughter to sleep. So why do I feel so sad?
In thinking about the content for this blog my mind ventured to the thought of the special helmet Sophie will be fitted for on Tuesday that will help to reshape her skull. I know that I have not allowed my mind to go there yet; I am in total denial. I keep looking at the papers on deformational plagiocephaly but have not allowed myself, until now, to think about what that really means. For those who don't know, because of Sophie's complete and total intolerance of "tummy time," the back of her head is becoming flatter. This flattening of the skull can cause developmental delays and impede the growth of her brain. Of course, this is not something we want, so we realize that the helmet is not optional.
I realize that this next bit will sound completely superficial but in trying to be as open and honest as possible I am going to put it out there anyway. We are stopped all the time by people who are mesmerized by Sophie ~the dark hair, big eyes, and most of all her sparkle are what draw them in; most are drawn in every time they see her ~ it is hard not to be. Will people still see that glorious, marvelous, beautiful sparkle when she is wearing a helmet ~ a huge flashing light that screams SOMETHING IS WRONG WITH ME? Will they look at her like she's a freak? I realize that this should be the least of my concerns~it is treatable~it will be fixed~she will be fine~she won't remember it......but I will.
I guess I just have to come to terms with our new normal. It is what it is. There is nothing I can do about it so I should just make the best of it. When life hands you lemons, make lemonade and all that jazz, right? I can't help but feel angry, frustrated, and now completely overwhelmed by this new normal. I don't want this normal. I want my old, loving, comforting "normal." The normal that fit like a security blanket. I am grateful for Sophie and for the lessons we are learning by being her parents. We love her more than life itself and know that one day her normal will fit like an old glove; will be a part of us we could never imagine living without. We just have to survive this first I guess.
I continue to be grateful for the therapeutic comfort writing this blog brings me. Thank you for allowing me to share this with you.
Friday, April 29, 2011
Wednesday, April 27, 2011
Cytotoxic Precautions
It has been a rough couple of days for sweet little Sophia. The hospital is definitely not like home....lots of people in and out, weird noises, and therapy sessions that are most uncomfortable. She has been more fussy/restless and in an attempt to change the scenery we took a "walk" last night. By "walk" I mean that we were able to roam the darkened hallways of the third floor several times as the hugs monitor attached to Sophie's ankle will go off should we get close the the elevator.
As we walked, I noticed many doors with hanging orange signs that read CYTOTOXIC PRECAUTIONS. Curious as to what that meant and why the nurses entering the room looked like responders to a HAZMAT crisis I googled the term cytotoxic. Cytotoxic drugs are intended primarily for the treatment of cancer. They are known to be highly toxic to cells, principally through their action on cell reproduction. Many have proved to be carcinogens, mutagens or teratogens. I realized at that time that this floor has at least 1/2 of its patients battling some type of cancer.
I began thinking about Sophie and all that we have been through with her. I wondered what the "sign" outside of her door would say? One can look at the orange signs outside of the doors on this floor and immediately know what is wrong with that child, have guidelines to know how to "medically' treat him/her, and precautions in place to protect the child and the medical staff. In all five of our hospitalizations no one has been able to immediately know what is wrong with Sophie, seem to have no guidelines on how to "medically" treat her, and no clear-cut procedures in place to protect her or those treating her. Most of the advice we get is muddied, unclear, conflicted with what other doctors think and believe. So much of our experience has been "watch, wait, see".
Would the sign on her door say, "Sensory Processing Disorder", "Severe Refluxer", "Autistic", "Delayed", "Normal"???? At this point I am not sure. What I do know is that after 6 days in the hospital our sweet baby is still: a) taking between 40-60 ml (1-2 ounces) at a feed (with a sporadic 90-110 ml every once in a while), b) slowly losing weight c) crying more d) sleeping less. Should our CARE conference tomorrow not yield a "G-tube" decision I wonder what we will walk out of here with? What will 7 days in the hospital have gotten us? I can think of a few things: a) time away from Cole b) another huge medical bill c) high levels of stress d) nothing.
We should know more after 4 p.m. tomorrow. Still praying for wisdom, strength, and the clarity to see the "right" choice for Sophie.
As we walked, I noticed many doors with hanging orange signs that read CYTOTOXIC PRECAUTIONS. Curious as to what that meant and why the nurses entering the room looked like responders to a HAZMAT crisis I googled the term cytotoxic. Cytotoxic drugs are intended primarily for the treatment of cancer. They are known to be highly toxic to cells, principally through their action on cell reproduction. Many have proved to be carcinogens, mutagens or teratogens. I realized at that time that this floor has at least 1/2 of its patients battling some type of cancer.
I began thinking about Sophie and all that we have been through with her. I wondered what the "sign" outside of her door would say? One can look at the orange signs outside of the doors on this floor and immediately know what is wrong with that child, have guidelines to know how to "medically' treat him/her, and precautions in place to protect the child and the medical staff. In all five of our hospitalizations no one has been able to immediately know what is wrong with Sophie, seem to have no guidelines on how to "medically" treat her, and no clear-cut procedures in place to protect her or those treating her. Most of the advice we get is muddied, unclear, conflicted with what other doctors think and believe. So much of our experience has been "watch, wait, see".
Would the sign on her door say, "Sensory Processing Disorder", "Severe Refluxer", "Autistic", "Delayed", "Normal"???? At this point I am not sure. What I do know is that after 6 days in the hospital our sweet baby is still: a) taking between 40-60 ml (1-2 ounces) at a feed (with a sporadic 90-110 ml every once in a while), b) slowly losing weight c) crying more d) sleeping less. Should our CARE conference tomorrow not yield a "G-tube" decision I wonder what we will walk out of here with? What will 7 days in the hospital have gotten us? I can think of a few things: a) time away from Cole b) another huge medical bill c) high levels of stress d) nothing.
We should know more after 4 p.m. tomorrow. Still praying for wisdom, strength, and the clarity to see the "right" choice for Sophie.
Monday, April 25, 2011
Nobody Said It Was Easy...
While nobody said it was easy...no one ever said it would be this hard (The Scientist, Coldplay).........Sophie becomes so agitated now that we have found one of the only things to soothe her is Coldplay's song, The Scientist. She is so quirky....screaming one minute, red in the face, madder than hell...then she hears the opening chorus, takes a deep breath, and calms down. I need to write the band a letter to let them know how often this song has saved us!
This latest posting is being written with a lot of conflicting emotions and thoughts. The vicious cycle that is infiltrating our lives has begun again....now that Sophie has been pumped full of fluids she is feeling better, engaging more, happier, and able to do more things. Dehydration's effects long gone, the team that makes up Sophie's doctors are now very split as to the next step. Of course to several of them she could "turn the corner at any minute". We, as her family, realize however that should we get out of here with nothing new in place, she will continue to eat her 1.5-2 ounces per feed (10-16 ounces in 24 hours) and slowly become dehydrated again. While I know there is nothing I can do about it now, I wonder, if the doctor's had listened to us in February, how much easier things would now be.
We are currently awaiting a CARE conference where all doctors/therapists who have had a hand in Sophie's care will meet to discuss the next step. While we are a little surprised that it won't happen until probably Thursday, we are thankful that we will both be a part of that meeting. The conflict, I believe, is stemming from the huge decision we will have to make. The current recommendation from the geneticist, neurologist, and speech therapist is to put a G tube in. The GI and Hospitalist doctors are still on the fence because Sophie is staying on "her curve" (can I say I hate that phrase) and has gained a little weight while here (mostly because of the IV fluids they pumped into her for almost 48 hours).
I feel like this is the biggest decision we have ever had to make and it petrifies me. I know that we all continue to pray that Sophie will turn the corner...any feed that she has that is "good" makes us think that she is moving beyond this 1-2 ounce garbage....however, good feeds are few and far between. To have medical professionals split is even more nerve wracking.....we certainly want to make the best decision and not rush into anything too hastily....have we waited long enough, given her enough time, done all that we can do to make this better? I would like to think so, but the thought of this G tube going in has me questioning everything.
The speech therapist said today that should a G tube be placed we will feel like we are performing a medical procedure every time we feed her at first. She said we will then get to the point where Sophie will be happy and less stressed ultimately leaving us less stressed as well. She will want to cuddle again...something that has changed in the last month as she becomes less engaged with us during feeding and most other times as well. I will never be able to describe how painful that alone is for us as her parents.
We continue to pray for guidance, patience, and wisdom.....
This latest posting is being written with a lot of conflicting emotions and thoughts. The vicious cycle that is infiltrating our lives has begun again....now that Sophie has been pumped full of fluids she is feeling better, engaging more, happier, and able to do more things. Dehydration's effects long gone, the team that makes up Sophie's doctors are now very split as to the next step. Of course to several of them she could "turn the corner at any minute". We, as her family, realize however that should we get out of here with nothing new in place, she will continue to eat her 1.5-2 ounces per feed (10-16 ounces in 24 hours) and slowly become dehydrated again. While I know there is nothing I can do about it now, I wonder, if the doctor's had listened to us in February, how much easier things would now be.
We are currently awaiting a CARE conference where all doctors/therapists who have had a hand in Sophie's care will meet to discuss the next step. While we are a little surprised that it won't happen until probably Thursday, we are thankful that we will both be a part of that meeting. The conflict, I believe, is stemming from the huge decision we will have to make. The current recommendation from the geneticist, neurologist, and speech therapist is to put a G tube in. The GI and Hospitalist doctors are still on the fence because Sophie is staying on "her curve" (can I say I hate that phrase) and has gained a little weight while here (mostly because of the IV fluids they pumped into her for almost 48 hours).
I feel like this is the biggest decision we have ever had to make and it petrifies me. I know that we all continue to pray that Sophie will turn the corner...any feed that she has that is "good" makes us think that she is moving beyond this 1-2 ounce garbage....however, good feeds are few and far between. To have medical professionals split is even more nerve wracking.....we certainly want to make the best decision and not rush into anything too hastily....have we waited long enough, given her enough time, done all that we can do to make this better? I would like to think so, but the thought of this G tube going in has me questioning everything.
The speech therapist said today that should a G tube be placed we will feel like we are performing a medical procedure every time we feed her at first. She said we will then get to the point where Sophie will be happy and less stressed ultimately leaving us less stressed as well. She will want to cuddle again...something that has changed in the last month as she becomes less engaged with us during feeding and most other times as well. I will never be able to describe how painful that alone is for us as her parents.
We continue to pray for guidance, patience, and wisdom.....
Friday, April 22, 2011
Door Prizes
This latest blog comes to you from room 3009 in Peyton Manning Children's hospital. Sophie was directly admitted to the hospital again this afternoon after our weekly check-in with the pediatrician. She has lowered her oral intake again (only 7 1/2 ounces in 14 hours) and only two pee pee diapers all day. She had not gained any weight in the last week and has been crying more and smiling less.
As we were leaving the admitting area I noticed a new (still in the wrapper) Baby Einstein DVD and a book. Puzzled, I said to the nurse, "do you get a door prize when you have visited the hospital five times?" She just smiled and laughed....thank goodness she had a sense of humor or maybe it's the other way around.
My first thought after speaking to the intern assigned to Sophie was that we needed to pack our stuff and go home. He told me how "perfect" she was (not that I disagree with that), that she "looked" healthy, and that if she came into his clinic, he wouldn't see her because she was fine. He proceeded to tell me that he was certain they would do nothing different this time around. I am fairly certain this man has no idea who he is up against. If he thinks that kind of talk will fly after four previous hospitalizations he is in for a rude awakening.
Thank goodness, Dr. Aguilar, an amazing person, was on duty tonight. His first comment was that we would not be seeing interns again (he must know who he is up against) and then he proceeded to spend an hour just listening to our concerns ~ interjecting questions here and there. He is arranging for other speciality consults (neuro, GI, geneticist, metabolic) and will at some point we will all sit down for a CARE conference where we will come up with a plan to figure out what is really going on with Sophie.
I continue to be amazed by how strong and brave our little girl is. They poked her four times tonight to find a vein strong enough to hold the IV as her veins kept blowing due to dehydration. She is of course completely exhausted right now but God how she amazes us!
"oh these times are hard and they're making us crazy, don't give up on me baby."
~ For the First Time, The Script
As we were leaving the admitting area I noticed a new (still in the wrapper) Baby Einstein DVD and a book. Puzzled, I said to the nurse, "do you get a door prize when you have visited the hospital five times?" She just smiled and laughed....thank goodness she had a sense of humor or maybe it's the other way around.
My first thought after speaking to the intern assigned to Sophie was that we needed to pack our stuff and go home. He told me how "perfect" she was (not that I disagree with that), that she "looked" healthy, and that if she came into his clinic, he wouldn't see her because she was fine. He proceeded to tell me that he was certain they would do nothing different this time around. I am fairly certain this man has no idea who he is up against. If he thinks that kind of talk will fly after four previous hospitalizations he is in for a rude awakening.
Thank goodness, Dr. Aguilar, an amazing person, was on duty tonight. His first comment was that we would not be seeing interns again (he must know who he is up against) and then he proceeded to spend an hour just listening to our concerns ~ interjecting questions here and there. He is arranging for other speciality consults (neuro, GI, geneticist, metabolic) and will at some point we will all sit down for a CARE conference where we will come up with a plan to figure out what is really going on with Sophie.
I continue to be amazed by how strong and brave our little girl is. They poked her four times tonight to find a vein strong enough to hold the IV as her veins kept blowing due to dehydration. She is of course completely exhausted right now but God how she amazes us!
"oh these times are hard and they're making us crazy, don't give up on me baby."
~ For the First Time, The Script
Thursday, April 21, 2011
High Heels and Hairbows begins...
"...and we don't know how we got into this mad situation, only doing things out of frustration, trying to make it work but man these times are hard......and we don't know how we got into this mess, it's a God's test, someone help us cause we're doing our best, trying to make it work but man these times are hard."
~For the First Time, The Script
And so begins my first attempt at blogging....I started High Heels and Hairbows as a better means of updating the masses about Sophie's progress. This way, those who want to tune in, can....and those who don't will no longer have to be bothered with my emails.
In our attempts to find ways to soothe our sweet girl, we have been experimenting with different types of music....especially ones with lyrics that seem to mirror where we are in this journey. The excerpt above from The Script's, For the First Time truly seems to capture exactly where we are right now.
To date, we still have no answers as to what is plaguing our little girl. My mom said something tonight that summed it all up, our daily experiences with Sophie are challenging. She is rarely comfortable in her own body (constantly arching and moving around), can cry for hours on end, and what works to soothe her one time, typically does not work the next.
Speaking of my mother, let me just say that I am blessed beyond belief to have her here everyday taking care of our babies while we are working. There is never a worry about the quality of care they are receiving while she is here and the welcome she receives each morning (Cole banging on the storm door, squealing in delight) reassures us that Cole adores the arrangement as well.
We are back to the pediatrician tomorrow and our first visit to the neurologist is on Monday. Hopefully I will have more information to share after those appointments.
To end on a positive note, Sophie rolled over for the first time this week (from her belly to her back). I'd like to think Sophie knew we needed her to do that to help boost our morale ~ "...we're smiling though we're close to tears even after all these years, we just now got the feeling that we're meeting for the first time." (For the First Time, The Script)
~For the First Time, The Script
And so begins my first attempt at blogging....I started High Heels and Hairbows as a better means of updating the masses about Sophie's progress. This way, those who want to tune in, can....and those who don't will no longer have to be bothered with my emails.
In our attempts to find ways to soothe our sweet girl, we have been experimenting with different types of music....especially ones with lyrics that seem to mirror where we are in this journey. The excerpt above from The Script's, For the First Time truly seems to capture exactly where we are right now.
To date, we still have no answers as to what is plaguing our little girl. My mom said something tonight that summed it all up, our daily experiences with Sophie are challenging. She is rarely comfortable in her own body (constantly arching and moving around), can cry for hours on end, and what works to soothe her one time, typically does not work the next.
Speaking of my mother, let me just say that I am blessed beyond belief to have her here everyday taking care of our babies while we are working. There is never a worry about the quality of care they are receiving while she is here and the welcome she receives each morning (Cole banging on the storm door, squealing in delight) reassures us that Cole adores the arrangement as well.
We are back to the pediatrician tomorrow and our first visit to the neurologist is on Monday. Hopefully I will have more information to share after those appointments.
To end on a positive note, Sophie rolled over for the first time this week (from her belly to her back). I'd like to think Sophie knew we needed her to do that to help boost our morale ~ "...we're smiling though we're close to tears even after all these years, we just now got the feeling that we're meeting for the first time." (For the First Time, The Script)
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