Goal for the weekend is to get this blog in order.
Little miss in the hospital over the weekend
Friday, April 27, 2012
PS and TGIF
Thank god its Friday. If only my weekends were filled with relaxing and sleeping in accompanied by a hot bath. I think I need a vacation. My heads all over the place today and I am feeling worse as the day progresses. I wish marriage was in my near future, I need health insurance. I can feel myself slipping into depression more and more.
Goal for the weekend is to get this blog in order.
Little miss in the hospital over the weekend
Goal for the weekend is to get this blog in order.
Little miss in the hospital over the weekend
2 week notice
After a rough week of having a sick baby and in and out of the doctor's office and ER, Jesse and I decided its best that I stay home with Ari. I had the privelage of putting my 2 weeks notice in this morning.
We have been discussing this as an option probably since I came back from maternity leave. We were weighing the pros and cons, going over finances on paper and in our heads, calculating everything we need and the extra to play with. I think we have come to the realazation that if its in the best interest for her, nothing else matters. We can go without as long as she has what she needs and is cared for the best she can be.
This will be a whole new experience I am both looking forward to and a little uneasy about. I am hoping I am able to find something to bring in more income at home down the road. But I know it is essential I am home with her. Its only a matter of time before work lets me go, might as well put the word in first. Probably looks better then getting fired.
Since Sunday night Ari hasnt been feeling too great. She slept basically all day, would wake up to eat about 1-2oz, sleep 2-3 hours. Her head turns blotchy when she eats from the bottle. Around her eyes and forhead gets red patches. She was choking on her bottle periodically as well. Her pediatrician said she probably has reflux. Im not sure I buy it. She really doesnt spit up that often, unless shes not burped frequently. She doesnt cry when she eats. Shes 6 months, thats usually about resolved by this time if babies do have it. Tuesday she woke up with her right eye swollen, red, and gooey. Looked like someone punched her in the eye. Her pedi wouldnt see her because he just seen her monday so it couldn't possibly be pink eye. Not sure I understand the logic in that. Also said it could be a cold working its way out. Umm, okay but just yesterday you said she wasnt congested at all, now shes getting rid of the cold she never had...? We took her to the ER wednesday because of her choking when eating. She had hardly eaten that day and of course I was concern. Well we waited 4 hours to be told she may be getting a cold. The discharge summary was how to take care of your irratble infant. And I think the diagnosis was overreactive mom. I was extremely frustrated but too tired to argue. Ari was asleep, it was 6 hours past her bed time, and Jesse and I could hardly keep our eyes open. I have a nuero appointment in 2 weeks. I will be asking if he recommends any pediatricians that have experience with SN children. I realize there wont be any for her DX, but at least have some other understanding other then chalking everything up to a common cold. And yes, maybe I can be overreactive, but isnt that a mother's job?
I decided not to give her the reflux medicine. At least until consulting the neurologist. Physical thereapy seen her yesterday. Same things as it was 2 weeks ago. Still havnt heard from the occupational therapist that was suppose to set up an appt by now. I will say she is doing better with keeping her right hand open, as well as grabbing things with it. She does need her legs stretched as well. She cant get her legs up to her head like most babies to to grab their feet. Shes not really trying to sit up yet. She can for a few seconds when she sits on our laps.On the floor she goes right over. So trying to get her to be able to prop herself up. She is scooting on her belly. Its a step in the right direction to crawling.
I have a few opiononated things I need to get out too, but that will be later on when I have time at home :)
We have been discussing this as an option probably since I came back from maternity leave. We were weighing the pros and cons, going over finances on paper and in our heads, calculating everything we need and the extra to play with. I think we have come to the realazation that if its in the best interest for her, nothing else matters. We can go without as long as she has what she needs and is cared for the best she can be.
This will be a whole new experience I am both looking forward to and a little uneasy about. I am hoping I am able to find something to bring in more income at home down the road. But I know it is essential I am home with her. Its only a matter of time before work lets me go, might as well put the word in first. Probably looks better then getting fired.
Since Sunday night Ari hasnt been feeling too great. She slept basically all day, would wake up to eat about 1-2oz, sleep 2-3 hours. Her head turns blotchy when she eats from the bottle. Around her eyes and forhead gets red patches. She was choking on her bottle periodically as well. Her pediatrician said she probably has reflux. Im not sure I buy it. She really doesnt spit up that often, unless shes not burped frequently. She doesnt cry when she eats. Shes 6 months, thats usually about resolved by this time if babies do have it. Tuesday she woke up with her right eye swollen, red, and gooey. Looked like someone punched her in the eye. Her pedi wouldnt see her because he just seen her monday so it couldn't possibly be pink eye. Not sure I understand the logic in that. Also said it could be a cold working its way out. Umm, okay but just yesterday you said she wasnt congested at all, now shes getting rid of the cold she never had...? We took her to the ER wednesday because of her choking when eating. She had hardly eaten that day and of course I was concern. Well we waited 4 hours to be told she may be getting a cold. The discharge summary was how to take care of your irratble infant. And I think the diagnosis was overreactive mom. I was extremely frustrated but too tired to argue. Ari was asleep, it was 6 hours past her bed time, and Jesse and I could hardly keep our eyes open. I have a nuero appointment in 2 weeks. I will be asking if he recommends any pediatricians that have experience with SN children. I realize there wont be any for her DX, but at least have some other understanding other then chalking everything up to a common cold. And yes, maybe I can be overreactive, but isnt that a mother's job?
I decided not to give her the reflux medicine. At least until consulting the neurologist. Physical thereapy seen her yesterday. Same things as it was 2 weeks ago. Still havnt heard from the occupational therapist that was suppose to set up an appt by now. I will say she is doing better with keeping her right hand open, as well as grabbing things with it. She does need her legs stretched as well. She cant get her legs up to her head like most babies to to grab their feet. Shes not really trying to sit up yet. She can for a few seconds when she sits on our laps.On the floor she goes right over. So trying to get her to be able to prop herself up. She is scooting on her belly. Its a step in the right direction to crawling.
I have a few opiononated things I need to get out too, but that will be later on when I have time at home :)
Thursday, April 19, 2012
Feeling like crap
Work can be especially hard for me, mostly because I have too much time to think. Night shift was dreadful. I spent most of the night crying and researching. Researching what really, im not sure. I am conviced the Schiz moms and myself know more then the physicians and anything I will find on the internet. Dr google isnt going to tell me my babys future.
I havnt had the time to get her papers into disability, her research forms for the Welsh lab in Boston, or the application for a service dog. I need a good solid day of not having to do house work or watch Ari ( yea right ). Life's busy and stressful enough with a baby without adding that she has special needs. Even if she isnt showing it yet, I am a constant mess.
The topic of make-a-wish came up. Unfortunatly she has to be at least 2 and a half. Although I think its mostly for trips, which I would want her to be older anyhow.
I also think I need to look into some counseling or meds. I feel like I am losing my mind. Sometimes I feel like too, as stupid as this sounds, that Jesse somehow blames me. I mean, I feel responsible sometimes, I carried her. I must somehow been at fault right???
Arianna has to go for blood work this saturday. Its one of the worse things and im dreading it. We have to go three more times for her endocrinology blood work. There are 6 different orders and they can only take so much out at a time and you have to wait a certain amount of time to get more drawn.
The talk of having more kids is constantly thrown around. I would idealy like to wait until shes at least 2. I hear by 2 years old you will have a good idea of what her future will be like as far as what hardships she will face. I would feel incredably quilty not giving her all of my attention. I feel bad enough I am not able to be with her everyday. I think shes going to think the baby sitter is mom. Which I guess is completely rediculous.
They are also not sure if its a genetic condition. We go back in July to CHOP ( my favorite place ) to get results. There is so little know about it. Could be environmental, which kills me day to day wracking my brain on what I did the first month or two. What I could had breathed in or was it because I crossed my legs and she didnt get enough oxygen? Was it because I painted my nails and inhaled the remover? Was it because I didnt know I was pregnent until 8 weeks and I was cleaning and smoking and eating crap?
They dont know exactly what week of gestation it occurs in. It could have been an infection, but my CMV came back clear. I wasnt sick the entire time.
Could also be caused by a stroke. Which is what they initially thought thats what she had on the first U/S that showed the shadow.
Her medical records from Women and Babies said it could be mild Schizencephaly. Our neuro refers to it as it being very significant. They didnt even tell me Schiz was a possibility at the high risk doctor, even though it was in my chart that it could be. I am pretty upset about this. But I guess it doesnt make a difference now.
CHOP said chances of it happening again is 2 percent. That was at the first visit. Last visit, its going to depend on if it comes back as a genetic mutation. If it isnt, I am going to be even more depressed thinking I did something. If not, I am going to be so worried about having another baby. The genetic counselor said some genes have been identified to cause Schiz, but its the other type....I forget what it is. Also if that one causes the SOD they dont know either. Its all too confusing for me.
With any chance of it happening again im not sure what Jesse and I will decide. For me, its back and forth. I love Arianna no matter what and I would love my second if she had Schiz just the same. In that respect, doesnt matter. But, I know how devastated I am now. And what I went though hearing it and going through it day to day. Will Ari have a lot of disabilities later in life? I dont know, but I wouldnt want my babys to go through it, so knowing thats a possibility, I dont know if I would chose to have another. But, if it happens I get pregnant I wont be upset :)
I havnt had the time to get her papers into disability, her research forms for the Welsh lab in Boston, or the application for a service dog. I need a good solid day of not having to do house work or watch Ari ( yea right ). Life's busy and stressful enough with a baby without adding that she has special needs. Even if she isnt showing it yet, I am a constant mess.
The topic of make-a-wish came up. Unfortunatly she has to be at least 2 and a half. Although I think its mostly for trips, which I would want her to be older anyhow.
I also think I need to look into some counseling or meds. I feel like I am losing my mind. Sometimes I feel like too, as stupid as this sounds, that Jesse somehow blames me. I mean, I feel responsible sometimes, I carried her. I must somehow been at fault right???
Arianna has to go for blood work this saturday. Its one of the worse things and im dreading it. We have to go three more times for her endocrinology blood work. There are 6 different orders and they can only take so much out at a time and you have to wait a certain amount of time to get more drawn.
The talk of having more kids is constantly thrown around. I would idealy like to wait until shes at least 2. I hear by 2 years old you will have a good idea of what her future will be like as far as what hardships she will face. I would feel incredably quilty not giving her all of my attention. I feel bad enough I am not able to be with her everyday. I think shes going to think the baby sitter is mom. Which I guess is completely rediculous.
They are also not sure if its a genetic condition. We go back in July to CHOP ( my favorite place ) to get results. There is so little know about it. Could be environmental, which kills me day to day wracking my brain on what I did the first month or two. What I could had breathed in or was it because I crossed my legs and she didnt get enough oxygen? Was it because I painted my nails and inhaled the remover? Was it because I didnt know I was pregnent until 8 weeks and I was cleaning and smoking and eating crap?
They dont know exactly what week of gestation it occurs in. It could have been an infection, but my CMV came back clear. I wasnt sick the entire time.
Could also be caused by a stroke. Which is what they initially thought thats what she had on the first U/S that showed the shadow.
Her medical records from Women and Babies said it could be mild Schizencephaly. Our neuro refers to it as it being very significant. They didnt even tell me Schiz was a possibility at the high risk doctor, even though it was in my chart that it could be. I am pretty upset about this. But I guess it doesnt make a difference now.
CHOP said chances of it happening again is 2 percent. That was at the first visit. Last visit, its going to depend on if it comes back as a genetic mutation. If it isnt, I am going to be even more depressed thinking I did something. If not, I am going to be so worried about having another baby. The genetic counselor said some genes have been identified to cause Schiz, but its the other type....I forget what it is. Also if that one causes the SOD they dont know either. Its all too confusing for me.
With any chance of it happening again im not sure what Jesse and I will decide. For me, its back and forth. I love Arianna no matter what and I would love my second if she had Schiz just the same. In that respect, doesnt matter. But, I know how devastated I am now. And what I went though hearing it and going through it day to day. Will Ari have a lot of disabilities later in life? I dont know, but I wouldnt want my babys to go through it, so knowing thats a possibility, I dont know if I would chose to have another. But, if it happens I get pregnant I wont be upset :)
Wednesday, April 18, 2012
Still dealing
I decided not to get the hand splits for little miss. There concern was her keeping them fisted at night and having them stay that way. She doesnt do this however ( CHOP drives me insane ) when shes relaxed her hands are always open. Its A LOT better now through-out the day as well. She is grabing and playing with toys. Her right hand I have to help with a little more but I dont think its anything that requires a splint.
On the note of "average" baby stuff, she has a new sitter which we love love love. So instead of trying to get her into she special needs daycare, I think Meg will be more then perfect unless she ever develops more complications she wouldnt be able to handle. Also, need to get on this sleep training thing and stick with it. Just kills me to hear her fuss or cry. But its killing Jess and I to be up late trying to rock her to sleep. I think it just disrupts her as well.
I would love to be able to stay home with her. Ugh, just dont see it ever beeing possible.
We did get her into seeing PT and OT every other week. Other then that nothing crazy coming up for a while. This month has been quiet as far as doctor appointments go.
Oh, I dont think I commented on the EEG, it is still clear of seizures :) Thats my biggest fear. I know I am going to just die to witness that. We are so blessed that she is doing so good.
I had asked the neurologist about things taking a turn for the worse. He basically said its not a degenerative thing where she will get worse necassarily, but that she may not be able to learn to do things like talk, walk, ect. I know it will hurt the most if I never hear her call me "mom". I am a part of a group of other Schiz moms and I dread asking if its a good sign shes doing so well , meaning do you think she will learn. I know no one has the answers to her future, and I guess I dont really want to know. Or I should say I dont want to hear, what I dont want to hear. So, for now just trying to enjoy every minute and keep faith in my heart that she will be just fine. This is the hardest thing for me from day to day. Not knowing if my baby will be okay. I know I been depressed. And I know I been moody, bitchy, snappy, ect. I know its taking a toll on Jesse and I. He puts up with me though and we push to work through it. I dont think anyone but a mother of this ( or mothers in general ) would fully understand what I am going through and how your heart is constantly hurting even though nothing is "wrong" at the moment.
We are all going out to dinner for my grandfather birthday tonight. Will be a nice night "out". She does very well wherever we go. She is teething though which is making her exceptionaly fussy. God, they get big too fast. She will be 6 months in 2 short weeks.
Little miss sitting up ready to eat
On the note of "average" baby stuff, she has a new sitter which we love love love. So instead of trying to get her into she special needs daycare, I think Meg will be more then perfect unless she ever develops more complications she wouldnt be able to handle. Also, need to get on this sleep training thing and stick with it. Just kills me to hear her fuss or cry. But its killing Jess and I to be up late trying to rock her to sleep. I think it just disrupts her as well.
I would love to be able to stay home with her. Ugh, just dont see it ever beeing possible.
We did get her into seeing PT and OT every other week. Other then that nothing crazy coming up for a while. This month has been quiet as far as doctor appointments go.
Oh, I dont think I commented on the EEG, it is still clear of seizures :) Thats my biggest fear. I know I am going to just die to witness that. We are so blessed that she is doing so good.
I had asked the neurologist about things taking a turn for the worse. He basically said its not a degenerative thing where she will get worse necassarily, but that she may not be able to learn to do things like talk, walk, ect. I know it will hurt the most if I never hear her call me "mom". I am a part of a group of other Schiz moms and I dread asking if its a good sign shes doing so well , meaning do you think she will learn. I know no one has the answers to her future, and I guess I dont really want to know. Or I should say I dont want to hear, what I dont want to hear. So, for now just trying to enjoy every minute and keep faith in my heart that she will be just fine. This is the hardest thing for me from day to day. Not knowing if my baby will be okay. I know I been depressed. And I know I been moody, bitchy, snappy, ect. I know its taking a toll on Jesse and I. He puts up with me though and we push to work through it. I dont think anyone but a mother of this ( or mothers in general ) would fully understand what I am going through and how your heart is constantly hurting even though nothing is "wrong" at the moment.
We are all going out to dinner for my grandfather birthday tonight. Will be a nice night "out". She does very well wherever we go. She is teething though which is making her exceptionaly fussy. God, they get big too fast. She will be 6 months in 2 short weeks.
Little miss sitting up ready to eat
Ari and mommy
Baby girl out soaking up the sun
Daddy's Girl
Arianna in her Easter dress
Her new best friend Loki
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