I am happy to report that things are going amazingly well with Sophie Q right now! We still have a couple of little quirky things that are bothersome and at times scary but overall, things are great. It is phenomenal to watch her personality begin to shine through....isn't it funny what hydration can do for the mind & body!
Unlike her brother at this age, she is full of smiles and giggles. I remember working so hard to get the tiniest smile out of Cole, but in sharp contrast, Sophie lights up with a smile the minute you engage her. After all she has been through, this is by far, the most amazing thing. I realized after rereading my last blog that there were two celebrations I forgot to mention.
The first, hasta la vista helmet! The company that came out to measure Sophie's head while we were still in the hospital said that it wasn't flat enough to need a helmet. Now that she is feeling better, we are spending more time on our belly and less time on our back! I have decided that should her head stay a little flat, we will mask it with a "bump-it"....they are still selling those, right?! The second celebration is that for the first time ever, Sophie is really snuggling with us. We had hit a point around March where she wouldn't even allow us to cradle her when she was eating. She wanted to face away from us and be completely disengaged. She now happily allows you to cradle her and on two occasions has even snuggled her little face into the crook of my neck, of course making me cry!
At physical therapy yesterday she kicked booty at prop sitting and reaching for objects in front of her. She even held objects in both hands (she doesn't always use her left hand as well) and brought everything to her mouth! She was simly amazing yesterday and made her mama and daddy so proud.
At her last week's doctor visit, Sophie had gained almost a whole pound (in just a week's time)....here are things that weigh one pound: package of butter, pint of water, a package of frozen vegetables, a loaf of bread, a package of hot dogs! Isn't this awesome?!!! We have been jumping for joy.
As I look back over the last six months and think about all Sophie has been through, where she started and where she is now, I find myself singing a line from The Script's For the First Time ~ "we just now got the feeling that we're meeting for the first time."
Thursday, May 26, 2011
Monday, May 16, 2011
Lunchbox Days
So it has been almost two weeks since my last posting and we are beginning to finally feel as though we are settling into a "normal" routine. Let's start with celebrations! First, we were released from the hospital the Friday before Mother's Day! Celebrating my first mommy's day with two kiddos was so much sweeter from the dining room of Cooper's Hawk restaurant and winery as was the yummy wine shared with my mother and sister-in-law! Next, Sophie seems to be tolerating her feeds pretty well overall. We still have some episodes of major "pukeage" but I think that is more from her icky reflux than anything else. She is now taking in 4 full ounces every 4 hours for a total of 24 ounces in a 24 hour period. This is huge considering Sophie was taking half or less of that amount for months prior to being hospitalized. Third, the Friday we were admitted to the hospital, Sophie had weighed in at 13.5 for two consecutive weeks at our pediatrician's office. When we visited her again on Friday (5/13), she was up to 14.14!!!!!!! What a huge gain in three weeks! We were thrilled beyond belief to see the scale throw up those numbers! And finally, after two weeks of non-stop Coldplay in the hospital, just when I thought Tarek and I could truly take on Chris Martin and his band and maybe even show them up, we found a new song to soothe our sweet little girl....it is called Innocent by Taylor Swift. This is not Sophie's first dive into Taylor's music as she adores the songs, Speak Now, Never Grow Up, and Enchanted as well. We love Coldplay but are happy to have a break from it!Fifteen days in the hospital took more of a toll on us than I think we expected The Friday we were discharged, exhaustion had settled in, and our "get up and go" was completely "gone." Tarek filled the air mattress for me and we decided that one of us would sleep in Sophie's room to make sure the pump pumped and that Sophie tolerated the feeding ok. This was before our brains allowed us to do the math to figure out how to get the pump to run over 4 hours (2 feeds at once) so that we didn't have to get up twice at night. It took us two hours that night to get Sophie completely settled and asleep. I think I was asleep before my head even hit the pillow that night. However, before getting into bed, I hooked Soph up to the pump, double checked to make sure the tip of the tubing fit snugly into the smaller port, and that I had the dose and rate inputted correctly. I hit the run button and climbed into bed. I awoke about an hour and a half later to the sound of Sophie shivering....Scrambling out of bed (ever tried to do that from an air mattress ~ not so easy) I looked into her crib only to find that she had somehow, in all of her nighttime movements, unhooked the latch on the big port, which allowed at least 2 ounces of formula to pump directly into Sophie's crib. Then came the big debate, to wake or not to wake.....thinking back to how painful getting Sophie to sleep was that night, I decided to let her sleep. As I was sopping up the mini lake of formula that pooled in her crib, I was thinking of the following lyrics Sophie's new favorite song, Innocent:
Wasn't it easier in your lunchbox days?
Always a bigger bed to crawl into
Wasn't it beautiful when you believed in everything?
And everybody believed in you?
Wasn't it easier in your firefly-catchin' days?
And everything out of reach, someone bigger brought down to you
Wasn't it beautiful runnin' wild 'til you fell asleep?
Before the monsters caught up to you?
While I continue to be amazed at all we are learning (tape the big port, tuck the tube into the onesie, don't give Cole a baby shovel as he will throw dirt at his sister), there are still nights where I miss those lunchbox days...We continue to be grateful for your prayers, emails, and phone calls. Thank you for keeping us in your thoughts! We love you.
Tuesday, May 3, 2011
The tube is in...
Thank you to everyone who emailed, texted, or called today to check on Sophie! We are happy to report that the PEG tube was placed with little trouble and the MRI showed no signs of fluid on her cervical spine. The PEG tube differs from a G-tube in that it has a longer tube we will use for the first 6-8 weeks to feed Sophie. After that, she will come back in for outpatient surgery where the PEG tube will be exchanged for a G tube. The PEG tube was placed to allow room for Sophie to grow, and grow we hope she does, now that we will be able to get all of the calories in that she needs! I cannot describe how excited we are to begin celebrating her eating instead of stressing about it. We are hoping that feeding will begin to turn into a more positive experience for her.
We still expect to be in the hospital for several more days as the therapists and doctors agree that we will need to take it slow to make sure Sophie is tolerating her feedings and the tube. I am hoping that we are out of here before Mother's Day but should we remain in the hospital we will make the best of it.
We are so excited to have Cole return to us tonight from Munster. We continue to be grateful to our parents for all of their love and support. We could not survive this without them.
As I type this, Sophie is resting comfortably~I pray that the rest of the night will go smoothly and that we will be able to stay ahead of her pain. We continue to be amazed by how brave our little girl is. We are so blessed to be learning lessons on endurance, perseverance, and courage from this sweet, sweet baby.
We still expect to be in the hospital for several more days as the therapists and doctors agree that we will need to take it slow to make sure Sophie is tolerating her feedings and the tube. I am hoping that we are out of here before Mother's Day but should we remain in the hospital we will make the best of it.
We are so excited to have Cole return to us tonight from Munster. We continue to be grateful to our parents for all of their love and support. We could not survive this without them.
As I type this, Sophie is resting comfortably~I pray that the rest of the night will go smoothly and that we will be able to stay ahead of her pain. We continue to be amazed by how brave our little girl is. We are so blessed to be learning lessons on endurance, perseverance, and courage from this sweet, sweet baby.
Friday, April 29, 2011
Normal
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.
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.
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
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