Since the passed week has been rough and I felt like crap this morning and I was alone, I decided I was not going to fight Jacob to eat.....
So, thinking I have everything all under control this morning I have Jacob hooked up to his tube feed. I have his baby food in the feeder bottle and his pills on a spoon sitting on the coffee table. Andrew is all set up eating his breakfast with his sippy cup. Jacob informs me with a gag that he does not want to eat baby food. I leave the room and go into this kitchen to make a 2oz bottle of formula to give Jacob his pills. (Yes I was to lazy to crush them and given them through the peg tube as well) Not 2 minutes later I walk back in to the living room to find Ava crawling on the floor telling me "mommy I can't fine them." The "them" she was referring to was Jacob's pills. She had either tried to give them to him, or tipped them over on accident into the carpet of no return. Tiny little pills are not easily found in a thick dark shag area rug. During this matter of the missing pills I look down to notice the end of the tube that should be connected to Jacob pumping formula into the carpet. I then look at Jacob. The next thought is SHIT!!!! All the formula I had already given him and stomach content was pouring from the peg tube into his seat and down the front of the highchair! EWWWW! I quickly clamp it, clean up the mess, and hook him back up. I found 4 of the 6 pieces of his pills. As I think I have everything back under control. I sit down to relax and Andrew decides to throw his cup. Of course the cup can not just bounce on the ground, but the nipple comes out and there goes his formula all over the carpet. (The carpet was def not having a good morning). Finally the kids were fed and they were put down for nap time by 2. I spent the day cleaning and going through the 100 or so bottles I have including the breast milk storage bottles. This consumed a big part of my day. I attempted to make a roast...needless to say attempt is the key word. The thing was so dry and over cooked the dogs did not want it. Wendy's it was for dinner.
Jack is sick, so he has not helped at all today. Ava is so darn cute, but extra moody. My sister stopped by earlier and for some reason when we are together the crudeness comes out. Ava is the lovely 3 year old that likes to repeat everything she know she should not. I don't really like the saying "Do as I say not as I do" so I have a hard time punishing Ava for saying "bad words" when I should not say them either. Anyways back to the point. My sister and I are carrying on a conversation and the "f word" is our favorite adjective Oh my sister was nice enough to watch the kids for a few while I went to the UPS store to get a box to ship some stuff I sold on ebay. I brought back McDonalds. Back to the point once more. Ava goes. "Mommy. Mommy. MOMMY!" I continue to ignore her at this point because I was talking to Tricia. Then she goes "Mommy, I need a fucking napkin!" I stop mid sentence with Tricia and Ava starts to laugh. I'm so shocked I had no words and couldn't make myself yell at her and I was trying not to laugh. Anyways we had the conversation which we have had about "asshole" previously. That mommy and daddy should not say bad words and neither should Ava. They are NO NOs! This obviously flew over her head, because tonight after Jack came home from work Ava decided to say another No No. She was asleep on the couch without a diaper and apparently peed on her blanket she carries around. She tried to climb onto Jack's lap with her pee blanket and Jack tell her. "Ava you pissed on your blanket. Go take your piss blanket to the washing machine." Ava come up to me while I am feeding Jacob and demand I open the laundry room door. "Mommy I got to throw my piss blanket in the washing machine. I tell her say pee pee not piss and she informs me "No mommy I pissed on that blanket."
My nose is all dry and crusty. It looks so nasty. I have a huge scab all over the top and underneath of my nose and my bottom lip still. Life is getting better. Oh I have one more update...
Jacob and Andrew went to the eye doctor on Monday. Andrew's eyes are fine he does not have to see her again until he is 3. I told her how I think Jacob see better when thing are farther from him. She looked at his eyes and said everything appears to be normal structure wise, but she believes he has cortical visual impairment. One more diagnoses to add to his list.....
What I learned:
Presently, Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and refractive error do not. Fixation and following, even to intense stimulation, may be poor and the child does not respond normally to people's faces. Visual regard and reaching (in the child with motor capabilities) toward objects is absent.
Causes of CVI
It is now widely accepted that "cortical blindness" is not an appropriate diagnostic term for children with early, acquired visual impairment due to non-ocular causes (4). The term "cortical" is misleading because the visual impairment is due to abnormality of bilateral. post-chiahydrocephalus shunt failure, se smal visual pathways, including damage to cortical (gray matter), subcortical (white matter) or both. Non-anatomical lesions, for example, seizures, metabolic derangements, also can cause CVI.
Thus, "cerebral visual impairment" is preferred to "cortical blindness." Common causes CVI in infants and young children include hypoxic ischemic encephalopathy (HIE) (in the term born infant), periventricular leukomalacia (PVL) (in the preterm infant), traumatic brain injury due to shaken baby syndrome and accidental head injuries, neonatal hypoglycemia, infections (e.g. viral meningitis), vere epilepsy, and metabolic disorders
What is to be done about this. We simply add another therapy to the list and hope for the best. I am currently waiting for http://www.lighthouse.org/ Orlando/ Central Florida office to get back with me about Vision Therapy. I really think this is it. I am going to bed.....one day it will be before 1am :-)
Wednesday, June 30, 2010
Monday, June 28, 2010
La de da la de da
Missed work all weekend. Jacob came home yesterday afternoon. He is doing great. The peg tube site looks wonderful. I'm adjusting to him having a huge tube hanging from his abdomen. Doesn't seem to hurt hims so much anymore. He went all day today without having any tube feedings. A few hours ago, I gave him his meds via his peg tube and when I went to feed him he gagged and vomited up all the meds. I don't quite know what I did wrong, but maybe I should have fed him 1st. Oh well he is fine. He did only eat 4oz instead of the 8 he is suppose to, but I was not going to force feed him the other 4 when he just vomited all over me.
Andrew is almost mobile. The kid can't sit up totally unassisted, but he get his butt up in the air and crawls 3 or 4 scoots to get what he wants out of his reach. He has mastered picking up food and bring it to his mouth. I am so proud of him. He has also been on sippy cup only for a week or more now. He is getting so big.
Ava is still readjusting from mommy and daddy being gone all week. She is being super attached and wanting to "help" all the time. I love her.
I am sick as a dog! Ugh I hate that I get my "face herpes" cold sores. YUCK! My face is so sore and painful. Every time I have an outbreak it gets worse than the last. When I was a kid it would be the typical sore at the corner of your mouth, but for some reason in the pasted 3 years or so they cover my moth and left side of my nose. They come up in the same exact spots every time, but seem a little bigger. They start at the right side of my mouth and chin, go all the way across my bottom lip, onto my to left side of my lip, then under my nose and up the left nostril. Oh, and they are not only on the outside, they are on the inside of my nose, the in side part of my lips, and starting to spread to my right nostril now. I am going to make sure I have a stock supply of antiviral meds from now on. I had 4 outbreaks of this nasty within a few months last year around the same time because of the babies being born and all the stress to go with it. I can only assume this outbreak is from the stress of Jacob's surgery and hospital stay. Now I suffer. My face has burning pain all the time. I can't even blow my left side of my nose it is so swollen. My face is covered in green/yellow crusty grossness. I look like I do meth or something. Noting is touching this pain! Oh and to go with the face pain. All my teeth throb on the top. The glands in my neck are swollen. It is painful to touch my neck or turn my head. I feel like my sinuses are clogged. I have that pressure feeling like you have a sinus infection and eyes burn and throb. I think that about sums it up for my complaining for this issue.
Only one more vent to go....As most people that know me knows that my husband is not the king of positiveness. He is more like the supreme rulers of negativity. I can't count how many times today he stated that his life is Hell. I can count 3 different times today he referred to Jacob as "our half dead son." Among other assanign hurtful things he says. Sadly I don't think he realizes how bad it hurt me for him to say these things. He had to cancel his psychologist appt this passed Friday if I did not mention this before due to Jacob being in the hospital, so who knows when he will have a new appointment. I feel him pulling me down. I need a partner who will uplift me when I feel down. Not one to step on me while I pout in self pity and push me down farther. I've tried to uplift him, but the more hurtful things he says is pulling us further and farther apart. I don't think he even realizes what the heck he is saying and the weight is bears on my shoulders. Does he not realize that I lost my son to? That Jacob is my special needs child as well? That my finances have suffered to? That I don't think I feel "unlucky" too? Does he not think that it doesn't hurt me when I see my friends with 3 healthy babies while I feel like my family is broken. The difference is I don't resent God, I don't feel that I am unlucky it actually really pisses me off when people tell me sorry for your luck etc. I don't wish doom for all other multiple pregnancies. I am happy that my friends do not have to endure what we are going through. They have their own seasons in life I'm sure I would not want. Yes, life is hard. My body, my mind, and spirt is worn thin. I feel on the verge of a nervous break down often. I continue to pull myself back together and take the next step forward. Hell more than once my crazy thoughts have been written on this blog. That is all I can do. Put one step in front of the other and continue to move forward. I trust in God. Don't get me wrong as much as I wish I didn't I still question God Why Me? Then I remember I am not the 1st person in this world to loss a child and have another with special needs. There have been parents that have lost all their children for one reason or another. My life is not bad. I don't want people to feel sorry for me. I hate when people write that to. I suppose I should not grip then, but I can't express my feelings to my husband like I should be able to. So instead I post them to the world to see. I give it all to God. Ha Ha more than once I have had people tell me how luck our children are to have Jack and I as their parents. I find this hard to comprehend. Jacob's home health nurse came out today to look at the g-tube site and she made that comment to me after I answered her questions.
She said it is not often that special needs children have 2 biological parents to care for them with the means to get them everything they need to thrive. I thought about it, WOW how can I feel sorry for myself when there are so many other children and parents going through their own storms without their needs being met.
Jacob has private insurance and Medicaid. This has made it possible for him to receive everything he needs. This has been a blessing for us because we have paid very little out of pocket for his needs.
He sees caring therapist that take their time to work with him 2x a week each and an interventionist 1x a week
He has parents that have been blessed with jobs that make it possible for at least 1 parent to be with them at all times except every other weekend. They then have Aunt Fiki to take care of them.
I have wonderful friends that help as much as they can and are always there just to listen to me sometimes.
They get WIC which has saved us well over a $1000 in formula for premature babies.
Anyways I think I am pointing out to myself more than anyone else the blessings in my life and my childrens'. I wish Jack seen them. We have friends and family who love us. I feel bad for Jack that he does not have a "best friend" besides me. Sadly I don't feel like I can tell Jack everything because it is always return in negativity. Unless I am catering to every detail of Jack's "like" list I am doing something wrong. I hear criticism from the way I dress, to what I buy at the store, to clean etc. It will be like Jennifer I appreciate you cleaning the kitchen, but.....(fill in the blank of what I did not do right) I didn't load the dishwasher his way, I through something in the trash that was recyclable, I forgot to turn the pool pump on etc..So then I bitch back at him that I do 90% or more of the kids care. Then he mocks me and says "yeah I don't do nothing" He expects me to do all the stuff he does and what I have to for the kids. The difference is things like clipping the kids nails (which I suck at) and cleaning the wax from their ears would never get done if I did not do it. They would get baths once a week if they were lucky. If it was not free from WIC they probably would not have it. They would be naked because they would not own cloths. Okay I don't know what rambling I have started now. I am going to bed. Jack tries to be a good husband and dad, I think he just needs a little medication to help him with his depression.
Andrew is almost mobile. The kid can't sit up totally unassisted, but he get his butt up in the air and crawls 3 or 4 scoots to get what he wants out of his reach. He has mastered picking up food and bring it to his mouth. I am so proud of him. He has also been on sippy cup only for a week or more now. He is getting so big.
Ava is still readjusting from mommy and daddy being gone all week. She is being super attached and wanting to "help" all the time. I love her.
I am sick as a dog! Ugh I hate that I get my "face herpes" cold sores. YUCK! My face is so sore and painful. Every time I have an outbreak it gets worse than the last. When I was a kid it would be the typical sore at the corner of your mouth, but for some reason in the pasted 3 years or so they cover my moth and left side of my nose. They come up in the same exact spots every time, but seem a little bigger. They start at the right side of my mouth and chin, go all the way across my bottom lip, onto my to left side of my lip, then under my nose and up the left nostril. Oh, and they are not only on the outside, they are on the inside of my nose, the in side part of my lips, and starting to spread to my right nostril now. I am going to make sure I have a stock supply of antiviral meds from now on. I had 4 outbreaks of this nasty within a few months last year around the same time because of the babies being born and all the stress to go with it. I can only assume this outbreak is from the stress of Jacob's surgery and hospital stay. Now I suffer. My face has burning pain all the time. I can't even blow my left side of my nose it is so swollen. My face is covered in green/yellow crusty grossness. I look like I do meth or something. Noting is touching this pain! Oh and to go with the face pain. All my teeth throb on the top. The glands in my neck are swollen. It is painful to touch my neck or turn my head. I feel like my sinuses are clogged. I have that pressure feeling like you have a sinus infection and eyes burn and throb. I think that about sums it up for my complaining for this issue.
Only one more vent to go....As most people that know me knows that my husband is not the king of positiveness. He is more like the supreme rulers of negativity. I can't count how many times today he stated that his life is Hell. I can count 3 different times today he referred to Jacob as "our half dead son." Among other assanign hurtful things he says. Sadly I don't think he realizes how bad it hurt me for him to say these things. He had to cancel his psychologist appt this passed Friday if I did not mention this before due to Jacob being in the hospital, so who knows when he will have a new appointment. I feel him pulling me down. I need a partner who will uplift me when I feel down. Not one to step on me while I pout in self pity and push me down farther. I've tried to uplift him, but the more hurtful things he says is pulling us further and farther apart. I don't think he even realizes what the heck he is saying and the weight is bears on my shoulders. Does he not realize that I lost my son to? That Jacob is my special needs child as well? That my finances have suffered to? That I don't think I feel "unlucky" too? Does he not think that it doesn't hurt me when I see my friends with 3 healthy babies while I feel like my family is broken. The difference is I don't resent God, I don't feel that I am unlucky it actually really pisses me off when people tell me sorry for your luck etc. I don't wish doom for all other multiple pregnancies. I am happy that my friends do not have to endure what we are going through. They have their own seasons in life I'm sure I would not want. Yes, life is hard. My body, my mind, and spirt is worn thin. I feel on the verge of a nervous break down often. I continue to pull myself back together and take the next step forward. Hell more than once my crazy thoughts have been written on this blog. That is all I can do. Put one step in front of the other and continue to move forward. I trust in God. Don't get me wrong as much as I wish I didn't I still question God Why Me? Then I remember I am not the 1st person in this world to loss a child and have another with special needs. There have been parents that have lost all their children for one reason or another. My life is not bad. I don't want people to feel sorry for me. I hate when people write that to. I suppose I should not grip then, but I can't express my feelings to my husband like I should be able to. So instead I post them to the world to see. I give it all to God. Ha Ha more than once I have had people tell me how luck our children are to have Jack and I as their parents. I find this hard to comprehend. Jacob's home health nurse came out today to look at the g-tube site and she made that comment to me after I answered her questions.
She said it is not often that special needs children have 2 biological parents to care for them with the means to get them everything they need to thrive. I thought about it, WOW how can I feel sorry for myself when there are so many other children and parents going through their own storms without their needs being met.
Jacob has private insurance and Medicaid. This has made it possible for him to receive everything he needs. This has been a blessing for us because we have paid very little out of pocket for his needs.
He sees caring therapist that take their time to work with him 2x a week each and an interventionist 1x a week
He has parents that have been blessed with jobs that make it possible for at least 1 parent to be with them at all times except every other weekend. They then have Aunt Fiki to take care of them.
I have wonderful friends that help as much as they can and are always there just to listen to me sometimes.
They get WIC which has saved us well over a $1000 in formula for premature babies.
Anyways I think I am pointing out to myself more than anyone else the blessings in my life and my childrens'. I wish Jack seen them. We have friends and family who love us. I feel bad for Jack that he does not have a "best friend" besides me. Sadly I don't feel like I can tell Jack everything because it is always return in negativity. Unless I am catering to every detail of Jack's "like" list I am doing something wrong. I hear criticism from the way I dress, to what I buy at the store, to clean etc. It will be like Jennifer I appreciate you cleaning the kitchen, but.....(fill in the blank of what I did not do right) I didn't load the dishwasher his way, I through something in the trash that was recyclable, I forgot to turn the pool pump on etc..So then I bitch back at him that I do 90% or more of the kids care. Then he mocks me and says "yeah I don't do nothing" He expects me to do all the stuff he does and what I have to for the kids. The difference is things like clipping the kids nails (which I suck at) and cleaning the wax from their ears would never get done if I did not do it. They would get baths once a week if they were lucky. If it was not free from WIC they probably would not have it. They would be naked because they would not own cloths. Okay I don't know what rambling I have started now. I am going to bed. Jack tries to be a good husband and dad, I think he just needs a little medication to help him with his depression.
Friday, June 25, 2010
Jacob is finally getting better!...don't read the end of the blog it is sick and depressing. I forwarn you!
Today has been a MUCH better day. Mommy and baby both woke up in a better mood. We did not get to go home today. I think he needed this extra day. I found out that he probably won't get to go home tomorrow either. I'll get to that though. The Ativan did wonders for him yesterday. Just letting him get rest was all he needed. This morning Dr. Winesett told me he could not go home because he had a fever last night and they had to figure out why. She was aware that I was sick and had a fever as well. I'm feeling a lot better. Throat hardly hurts at all and the anxiety feeling is almost gone. So, this morning (around 630am) they attempted to start and IV, but only got blood and they got a urine sample from him. Later around 10am. Jack and I went to get my prescriptions from Target. The nurse tried to feed him the Pediasure and he would not eat it. So the nurse tube fed him and got his IV in. When we got back she told us she did all of this and that she gave him a dose of Ativan because he was very angry. He was sleeping when we got back. I finally got my way. I got the doctor to take him off the stupid pediasure and allow him to have his Enfacare back. They also took him off the night time feeding. He is now allowed to have 4 8oz feedings a day. I fed him 4oz by mouth around 3pm then he fell asleep and I tube fed the rest. He did not want to eat again until almost 9pm once again he at 4oz and went to sleep. So we tube fed the rest. He has required no pain medication, and has had no fever today. They did do a test to check peg-tube placement which was where it should be. They did another cath urine on him. They did a strep culture, a nose viral culture. They put him on isolation until they rule out contagious stuff like RSV. He did have a white blood cell count of 21.4 The normal high number is either 10 or 12 can't quite remember. So the WBC being that high shows something is going on. around 8pm tonight he had a chest x-ray done. Have not got the results back. The pediatrician is the one that said we can't go home until all results are back including the blood cultures they did this morning. They take 2 days. The pediatrician changed his antibiotic today as well. He is back to his normal fussy. He is still sore. When you move him around he cries and stiffens up, but relaxes in a few minutes later. He went to sleep on his own tonight without the aid of drugs. Not sure if I wrote that already. Getting SLEEEEEPY. I miss my Ava and Andrew. My sister should have them by now. Jill kept them all week. If they keep Jacob again tomorrow I will miss work on Saturday. :-( Can't afford missing all these days. Oh I forgot to mention Jacob is finally over 18lbs I know all scales are different but last Wednesday he was exactly 18lbs at Dr. Velez's office. Today on the hospital scale he was 18lbs 6oz YEA!!!!
My sister is closing on her house tomorrow. YEA! She gets to be RICH just for a little while.
I am continue to try and praise God through all things even when it gets hard. Once more I know there is nothing he will give us that Jack and I can't handle. I just wonder when this storm is going to end. The past year of our life has been full of many peaks and valleys. I am ready for a little sunny weather for a while and for the storm to be over. This passed week just brought up a lot of hard memories of Logan. Staring at Jacob reminds me so much of all the pain Logan endured during his short life. Me seeing the pain Jacob has been in and the hours I spent comforting him and being at his side 24hrs a day has made me feel guilty for not being with Logan like that through his pain and suffering. It has also made me realize how much he REALLY suffered. Makes me feel even guiltier. I think about all the lonely hours he spent in that dark room by himself. He did not have the voice to vocalize himself like Jacob does. I know he had a lot of caring nurses who were by his side and comforted him, but what about those days and nights when his primaries were not there and he had crap nurses. There were many days of crap nurses too. I can't change the passed, I find it hard to let go still. I know he is at peace in God's loving arms now with all the other children who lives ended short. God, I love him so much. I miss him dearly. Jacob's face looks so much like him especially when he is in pain. It is sad that I seen more of his painful expression than peaceful ones. I am grateful he now has an eternity of peace now. I still long to hold him. When I visit his grave it takes all I can not to lay face down on the ground just to be closer to his body even though I know his spirt is gone. Which brings up all kinds of sick new thoughts that I wish would never cross my mind. Watching to much discovery health has corrupted my mind. When he died I could not bear to burn his body. I almost wish I would have so his body would have been close to me all the time. Now I have the haunting thoughts in my head about him decomposing in the ground. I sickly wonder what he looks like down there now. Does he even have skin anymore or is he just bones now. Does he still have the cross in his hand Melissa's son gave to him? How long until there is nothing left but bones. I think about his skin rotting off and all kinda of nasty stuff that haunts me every Saturday that marks another week since he has been gone. What are we at now? 21 weeks and 5 days I think. It has almost been 5 months. I wish these thoughts would just go away. God forbid I have to loose another loved one they are getting burned. Ashes to Ashes dust to dust. Then the only thought I have to think about is the smell of burning flesh which I don't have to smell so not to worry. Can't cremate Jack though he would find away to haunt me I'm sure. I don't want to be cremated either. I want the worms to eat me. I just don't want them to eat Logan. I want to remember him as my perfect little man forever. Not rotting flesh and bones in the ground. Now I have gotten myself into a horrible crying snotty mess. Sorry for grossing everyone else. Usually when I write it, it helps me get over it.
On a much happier not, which it always is when I discuss the happiest place on earth....I am excited to find out Disney is doing monthly payments. I look forward to the day when I can take all my kids to see Mickey Mouse and pay by the month :-)
I think I will attempt to sleep now. Maybe God will bless me with a wonderful peaceful dream tonight. I look forward to the day I have the honor to walk in the Kingdom of Heaven just to stand at God's feet. To forever worship him in peace. To hold my son again. To one day have my entire family with me. To have all 3 of my sons together. To see them all walking and free of sickness and disability. Maybe even the baby I lost when I had a miscarriage before my last pregnancy will be there too. Not quite sure how that all works. All I know is that God is perfect. He is loving. When I get there I will feel no anguish no sorrow and I Will be unaware of all the stuff on earth. There will be no hate or anger. What a wonderful place to strive to go. I have to remind myself often of this wonderful place God created for us when I struggle with my faith and get caught up in my own sorrow. I have never lost my faith. I have never felt angry with God. I am definitely questioning our perfect God the more I watch my son struggle. I try to think positive. That God gave this special child to me to give him extra love and to make his life extra special. I tried my best with Logan, but somehow feel that I fell short. I don't know if I even make since but I think I will stop rambling now. I can't wait to go home and hold all my babies in my bed. I miss my fat man Andrew and My Angel Ava. She cries when I talk to her on the phone and it breaks my heart.
My sister is closing on her house tomorrow. YEA! She gets to be RICH just for a little while.
I am continue to try and praise God through all things even when it gets hard. Once more I know there is nothing he will give us that Jack and I can't handle. I just wonder when this storm is going to end. The past year of our life has been full of many peaks and valleys. I am ready for a little sunny weather for a while and for the storm to be over. This passed week just brought up a lot of hard memories of Logan. Staring at Jacob reminds me so much of all the pain Logan endured during his short life. Me seeing the pain Jacob has been in and the hours I spent comforting him and being at his side 24hrs a day has made me feel guilty for not being with Logan like that through his pain and suffering. It has also made me realize how much he REALLY suffered. Makes me feel even guiltier. I think about all the lonely hours he spent in that dark room by himself. He did not have the voice to vocalize himself like Jacob does. I know he had a lot of caring nurses who were by his side and comforted him, but what about those days and nights when his primaries were not there and he had crap nurses. There were many days of crap nurses too. I can't change the passed, I find it hard to let go still. I know he is at peace in God's loving arms now with all the other children who lives ended short. God, I love him so much. I miss him dearly. Jacob's face looks so much like him especially when he is in pain. It is sad that I seen more of his painful expression than peaceful ones. I am grateful he now has an eternity of peace now. I still long to hold him. When I visit his grave it takes all I can not to lay face down on the ground just to be closer to his body even though I know his spirt is gone. Which brings up all kinds of sick new thoughts that I wish would never cross my mind. Watching to much discovery health has corrupted my mind. When he died I could not bear to burn his body. I almost wish I would have so his body would have been close to me all the time. Now I have the haunting thoughts in my head about him decomposing in the ground. I sickly wonder what he looks like down there now. Does he even have skin anymore or is he just bones now. Does he still have the cross in his hand Melissa's son gave to him? How long until there is nothing left but bones. I think about his skin rotting off and all kinda of nasty stuff that haunts me every Saturday that marks another week since he has been gone. What are we at now? 21 weeks and 5 days I think. It has almost been 5 months. I wish these thoughts would just go away. God forbid I have to loose another loved one they are getting burned. Ashes to Ashes dust to dust. Then the only thought I have to think about is the smell of burning flesh which I don't have to smell so not to worry. Can't cremate Jack though he would find away to haunt me I'm sure. I don't want to be cremated either. I want the worms to eat me. I just don't want them to eat Logan. I want to remember him as my perfect little man forever. Not rotting flesh and bones in the ground. Now I have gotten myself into a horrible crying snotty mess. Sorry for grossing everyone else. Usually when I write it, it helps me get over it.
On a much happier not, which it always is when I discuss the happiest place on earth....I am excited to find out Disney is doing monthly payments. I look forward to the day when I can take all my kids to see Mickey Mouse and pay by the month :-)
I think I will attempt to sleep now. Maybe God will bless me with a wonderful peaceful dream tonight. I look forward to the day I have the honor to walk in the Kingdom of Heaven just to stand at God's feet. To forever worship him in peace. To hold my son again. To one day have my entire family with me. To have all 3 of my sons together. To see them all walking and free of sickness and disability. Maybe even the baby I lost when I had a miscarriage before my last pregnancy will be there too. Not quite sure how that all works. All I know is that God is perfect. He is loving. When I get there I will feel no anguish no sorrow and I Will be unaware of all the stuff on earth. There will be no hate or anger. What a wonderful place to strive to go. I have to remind myself often of this wonderful place God created for us when I struggle with my faith and get caught up in my own sorrow. I have never lost my faith. I have never felt angry with God. I am definitely questioning our perfect God the more I watch my son struggle. I try to think positive. That God gave this special child to me to give him extra love and to make his life extra special. I tried my best with Logan, but somehow feel that I fell short. I don't know if I even make since but I think I will stop rambling now. I can't wait to go home and hold all my babies in my bed. I miss my fat man Andrew and My Angel Ava. She cries when I talk to her on the phone and it breaks my heart.
Wednesday, June 23, 2010
Wow! It has been a ROUGH couple of days!!!!!
1st thanks Jill and her family for taking care of Ava and Andrew while we are stuck in hospital hell. Jacob was not allowed to eat for over 30 hours when he had the peg placed. Well we were at 30 hours by the time the doctor said he could eat. He has scream and arched in pain since the procedure was done. The day shift nurse today was not very prompt. I was told he could eat at 630 I called her in just after 7 to get the crap they are making me feed him Pediasure. So she leaves the room and says she is going to get it. 2 HOURS LATER after putting on the call light several times. She brings it in. He ate the 100cc he was allowed. He also kicked his IV out and I told the nurse and she disappeared for 10 minutes while his foot was bleeding. I had another nurse come in the room and had her fix it. Any ways none of that is really important the point being is Jacob is miserable and I am having a really hard time handling it. Esp after the IV was kicked out they said they were not replacing it and then he was only allowed to have regular Tylenol. This does nothing for his pain. He screamed for hours and was inconsolable. From no sleep and a very stressful night sleep and morning. I finally had s major anxiety attack. When I get these they put me out a while. I decided to take a shower to calm down. I apparently hyperventilated passed out or whatever while sitting there. All I remember as sitting down because I was very dizzy. Next thing I knew I woke up feeling a little disoriented to where I was for a few minutes. I stood up and every muscle in my body hurt. I continue to feel weak and dizzy when I sat up. Jack was very good to me today. I slept and took 3 dose of Tylenol thought the day, but every time I stood up I felt like I had been hit by a car. On top of that my throat started swell and hurt last night. So I was like one of the many idiots I hate the go to the emergency room for convince. They were great and I was out in 2 hours. They gave me an IV pain med and steroid for my tosilitist. I got a shot in the butt of Penicillin and I took my very first Ativan. Which is contributing to my inability to write right now. I feel a little better now. I stopped feeling like I had drank 2000 energy drinks. Now I am in a nasty sweat from breaking the fever I did not know I had.
While in the ER Jack calls and informs me Jacob started running a fever. So we don't know if it is from something he caught from me or from the peg tube place ment. Tonights nurse is much more proactive. She has already got an order for Ativan which she has gave. He will get Tylenol w/ codeine in 2 hours.
I am in a total drug fog righr now and I think I will try to get some sleep.
While in the ER Jack calls and informs me Jacob started running a fever. So we don't know if it is from something he caught from me or from the peg tube place ment. Tonights nurse is much more proactive. She has already got an order for Ativan which she has gave. He will get Tylenol w/ codeine in 2 hours.
I am in a total drug fog righr now and I think I will try to get some sleep.
Tuesday, June 22, 2010
So the peg tube is in and Jacob is miserable :-(
Saturday, June 19, 2010
I'm having a hard time today......
So we are coming close to the 1 year mark as of yesterday. My babies are 11 months old. I've planned on having my blog published into a hard cover book for my keepsake and one for each of the boys. So I download the program for me to start editing what I want it to look like cover wise, pictures, etc. As I glanced over the 140 or so pages it will consist of thus far, I just read the title of each blog. I started to read the one that was titled "I'm scared" then the one announcing Logan's death. This hit me hard once again. Though I know his life was full of blessings before and after his death. My flesh is having a very hard time right now. 11 months and almost 5 months late, the praise and joy I have felt is not where is should be, but the fear and anger is boiling to the top. Not so much about Logan, but what Jacob is now having to endure. I don't know if I can go through this again. I cried like a baby last night. From going though the pictures and reading the blog to thinking about the new "hardware" Jacob will have. I am glad Jack was asleep. I went though all Logan's pictures again. I actually hugged this hug picture of Logan on the wall and cried up against the wall for awhile. Then cried myself to sleep. Man did I feel it this morning.
Jacob has me scared. I'm sure it is paranoid thoughts of a hypocondriac nurse. The fact that he has been on this new antibiotic for 3 days. His urine output is still very low. It is still dark. I have force fed him as mycg fluid as he would tolerate drinking. I think he drank less than 14oz yesterday. Today I talked to my sister while she was feeding him and she told me he at a little over 5oz, but he gagged for her the entire time. He has not been gagging for weeks! I know this feeding tube will be a good thing for him. This is the 1st time I have had a child go to surgery since the last 1 that Logan had...and he was dead less than a month later. I know that a feed tube did not kill Logan, but these are the thought that Jack has in his head and I stopped taking me medication!!!! I'm crazy I know. I started taking Lexapro a month or so give or take. I stopped taking it a week ago. Man I can tell the difference. I am anxious and emotional all over again. Sick to my stomach. Just miserable. The Lexapro made me so tired I could not stay awake to take care of my children. Oh well I have to get back to work now. I just needed to get these feelings off my chest so I could stop crying at work. :-)
Jacob has me scared. I'm sure it is paranoid thoughts of a hypocondriac nurse. The fact that he has been on this new antibiotic for 3 days. His urine output is still very low. It is still dark. I have force fed him as mycg fluid as he would tolerate drinking. I think he drank less than 14oz yesterday. Today I talked to my sister while she was feeding him and she told me he at a little over 5oz, but he gagged for her the entire time. He has not been gagging for weeks! I know this feeding tube will be a good thing for him. This is the 1st time I have had a child go to surgery since the last 1 that Logan had...and he was dead less than a month later. I know that a feed tube did not kill Logan, but these are the thought that Jack has in his head and I stopped taking me medication!!!! I'm crazy I know. I started taking Lexapro a month or so give or take. I stopped taking it a week ago. Man I can tell the difference. I am anxious and emotional all over again. Sick to my stomach. Just miserable. The Lexapro made me so tired I could not stay awake to take care of my children. Oh well I have to get back to work now. I just needed to get these feelings off my chest so I could stop crying at work. :-)
Friday, June 18, 2010
Picture update
Ava Covered his birth mark with a bandaid and told me she fixed his boo boo
Princess Ava was all dress to go to the nude ball! LOL 
Andrew sitting up like a big boy
Big Boys!
1st time drinking out of a sippy cup and holding his own bottle! Good Andrew!
Nudist Ava once more
Daddy went to pracice at the gun range and Ava played dress up before he left
Sweet Jacob how I wish he did not have to struggle :-(
Wednesday, June 16, 2010
Surgery update and more sick kids
Jacob goes on Tuesday, June 22nd for his G-tube placement in Tampa. We have to stay for 3 days. Thanks to my wonderful friend Jill and her family, they will have Ava and Andrew while we are with Jacob.
So all 3 kids started getting sick over the weekend. So much for the glorious few weeks when they were all healthy and thriving. All 3 got green sicky noses and coughs. Andrew and Ava are handling it well and are doing great. They are eating and playing just a few extra tissues and that's all.
Of course nothing comes easy with Jacob. Any time he is sick at all he struggles feeding. Over the pasted 4-5 days his he has eaten half his normal. His urine output is 2x a day. He continues to be the poop-a-natter he poops more than he pees. I took him to see the doctor this morning being concerned about his urine. Yesterday I noticed it looked more concentrated and had an odor. They did a cath urine on him and it looked nasty. A really dark orange and cloudy. So, he has a urinary tract infection and we are starting another antibiotic. We just finished the last ones maybe a week ago from the pneumonia. This kid is going to be immune to all antibiotics if this keeps up. I am praying the g-tube is going to help keep him healthier since he will then be able to get the amount of intake he needs.
Besides the few bumps in the road all is well. Jack and I continue to praise God for all he does and we are thankful for every blessing big or small. I have been toying with the idea or changing jobs and I am looking to Him for guidance. I love my job, but I can't help but wonder if there is something else I may love more. Maybe just simply changing shifts or departments. Childcare is the big issue. I want to be able to go to church on Sundays. I want to be able to attend birthday parties and other events that always seem to happen on weekends. My only option though is to work weekend nights or find a PRN job where I pick the days I want to work opposite of Jack. All in due time thought I suppose.
I got Jacob this super cool high chair that I can take in restaurants with me so he can sit up at the table and be a big boy just like Andrew. We used it for the 1st time today I was pretty happy with it. It is made by Evenflo I believe it is called the On the Go travel high chair. It is green with a 5 point harness. It has a high back so Jacob's head does not fall back like it does in everything else. Both boys also got new shoes. Jacob got 2 pairs of shoes. 1 that fit over his leg splints. The physical therapist is suppose to bring a walker/stander thing for him to try with his leg splints and new shoes :-) I actually got him another high top boot shoes that he stands surprisingly well in without the leg splints. I think they will help with his foot drop and he tolerates them better than the splints. They are a little to big. When he bends him legs they are rubbing at the back of his knees causing his skin to rub off and bruising. Because of this I stopped putting them on him at night.
Andrew is doing so much better sitting up this week. He actually sit almost unsupported with a boppy pillow behind him for 5 minutes or more while he plays with toys. Then he usually gives up and falls over and rolls to his stomach. :-) He also started drinking for a sippy cup yesterday. He seems to like it. It is the NUK cup. He actually holds it up by himself too and he won't do that with a bottle. He makes someone hold it or it has to be propped. I was impressed. I even made a little video of him being a big boys holding and drinking out of his big boy sippy cup.
I cleaned Mr. Stinky Van that has not been cleaned since NOVEMBER! Guess what I found that has been missing for 6 months! Something I thought I lost in the NICU a few weeks before Logan died. MY WEDDING RING! Of Course I found it 2 weeks after I bought a new one. I like the new one and I think I will keep it still too! :-D
Umm...I can't think of anything else So I guess that is all for now. I am to lazy to get the camera and upload pictures, so I will do that later.
So all 3 kids started getting sick over the weekend. So much for the glorious few weeks when they were all healthy and thriving. All 3 got green sicky noses and coughs. Andrew and Ava are handling it well and are doing great. They are eating and playing just a few extra tissues and that's all.
Of course nothing comes easy with Jacob. Any time he is sick at all he struggles feeding. Over the pasted 4-5 days his he has eaten half his normal. His urine output is 2x a day. He continues to be the poop-a-natter he poops more than he pees. I took him to see the doctor this morning being concerned about his urine. Yesterday I noticed it looked more concentrated and had an odor. They did a cath urine on him and it looked nasty. A really dark orange and cloudy. So, he has a urinary tract infection and we are starting another antibiotic. We just finished the last ones maybe a week ago from the pneumonia. This kid is going to be immune to all antibiotics if this keeps up. I am praying the g-tube is going to help keep him healthier since he will then be able to get the amount of intake he needs.
Besides the few bumps in the road all is well. Jack and I continue to praise God for all he does and we are thankful for every blessing big or small. I have been toying with the idea or changing jobs and I am looking to Him for guidance. I love my job, but I can't help but wonder if there is something else I may love more. Maybe just simply changing shifts or departments. Childcare is the big issue. I want to be able to go to church on Sundays. I want to be able to attend birthday parties and other events that always seem to happen on weekends. My only option though is to work weekend nights or find a PRN job where I pick the days I want to work opposite of Jack. All in due time thought I suppose.
I got Jacob this super cool high chair that I can take in restaurants with me so he can sit up at the table and be a big boy just like Andrew. We used it for the 1st time today I was pretty happy with it. It is made by Evenflo I believe it is called the On the Go travel high chair. It is green with a 5 point harness. It has a high back so Jacob's head does not fall back like it does in everything else. Both boys also got new shoes. Jacob got 2 pairs of shoes. 1 that fit over his leg splints. The physical therapist is suppose to bring a walker/stander thing for him to try with his leg splints and new shoes :-) I actually got him another high top boot shoes that he stands surprisingly well in without the leg splints. I think they will help with his foot drop and he tolerates them better than the splints. They are a little to big. When he bends him legs they are rubbing at the back of his knees causing his skin to rub off and bruising. Because of this I stopped putting them on him at night.
Andrew is doing so much better sitting up this week. He actually sit almost unsupported with a boppy pillow behind him for 5 minutes or more while he plays with toys. Then he usually gives up and falls over and rolls to his stomach. :-) He also started drinking for a sippy cup yesterday. He seems to like it. It is the NUK cup. He actually holds it up by himself too and he won't do that with a bottle. He makes someone hold it or it has to be propped. I was impressed. I even made a little video of him being a big boys holding and drinking out of his big boy sippy cup.
I cleaned Mr. Stinky Van that has not been cleaned since NOVEMBER! Guess what I found that has been missing for 6 months! Something I thought I lost in the NICU a few weeks before Logan died. MY WEDDING RING! Of Course I found it 2 weeks after I bought a new one. I like the new one and I think I will keep it still too! :-D
Umm...I can't think of anything else So I guess that is all for now. I am to lazy to get the camera and upload pictures, so I will do that later.
Thursday, June 10, 2010
God please comfort "The Bright Spot" I also posted pictures
Ava waiting to go to her birthday party
Mommy and Ava about to open presents!
Andrew in the baby jumping area at Family Fun Center
Jack is King of the balls LOL
Jacob sleeping
Getting ready for lunch time
I think the bib ate more than he did!
Andrew is a cookie monster!
Sleeping Angel with all her headboard "artwork"
I just got sad news from one of my blogs I follow called The Bright Spot. They were 23 weeks 5 days when they found out that they lost their identical twin boys. They have been in Miami with Dr. Quintero who is one of the leading TTTS doctors trying to save their boys lives. Please pray for comfort for them during this hard time. She is actually in labor right now to deliver her angels. http://scottbee.blogspot.com/
On a better note. Jacob is doing so much better with his feedings. We had speech therapy today and he did wonderful. I am so impressed that he is eating so well. Now, if we could just get him sitting up or holding toys, rolling over ANYTHING!
Both boys seen the early interventionist today. We discussed how Andrew is starting to fall behind. She does not think he needs physical therapy but would like to see him once a week instead of once a month. He is almost 8 months adjusted and still does not hold his bottle, he does not sit up on his own. He started to then stopped, and he is making no attempt at crawling.
I have a house full of kids right now!!!! I still don't have the date for Jacob's g-tube placement yet. I am posting some picture of the kids.
Wednesday, June 9, 2010
Good results from 1st speech therapy session
Jacob went to speech therapy for the 1st time on Monday. She should me some new things to try and get him to suck slower. He did great in therapy and great Monday night. He actually finished an 8oz bottle in 15 minutes without gagging!
Ava had a great birthday party on Monday night. We had a total of 22 kids counting all babies lol. Thanks to everyone that came. She made out like a bandit on presents. She got a lot of great gifts. I only let her take 2 gifts to bed with her LOL I had fun opening up all her packages and playing with them while she was sleep. When she woke up this morning I had her presents set up all over the house. She played all day long!
I had to tear her away from her gifts this morning to go to her 3 year old check up with Dr. Velez. She protested the entire time. We had a good visit she is doing everything she should except she can't write an "x" on a piece of paper. They made her get undressed and put on a hospital gown . She told me "Mommy I don't want DR. Velez to give me a hair cut." hahaha
Ava has complained of her "tummy hurting" for month and months. I have been told by WIC that she drinks to much milk, but never really thought much of it. I know you can get sick if you drink a large quantity at one time, I have done that and puked before. She seriously has 6-8 8oz sippy cups full of fat free milk a day. She has been drinking that much milk since she started drink cow milk. I was told she is drinking double the amount she should be and that it can cause inflammation of the stomach and that is probably what is going on. So, only 3 cups of milk a day for Ava now.
We have speech therapy again for Jacob tomorrow. Today he did not eat as well as he did Monday.
Will post pictures of Ava's party soon.
Ava had a great birthday party on Monday night. We had a total of 22 kids counting all babies lol. Thanks to everyone that came. She made out like a bandit on presents. She got a lot of great gifts. I only let her take 2 gifts to bed with her LOL I had fun opening up all her packages and playing with them while she was sleep. When she woke up this morning I had her presents set up all over the house. She played all day long!
I had to tear her away from her gifts this morning to go to her 3 year old check up with Dr. Velez. She protested the entire time. We had a good visit she is doing everything she should except she can't write an "x" on a piece of paper. They made her get undressed and put on a hospital gown . She told me "Mommy I don't want DR. Velez to give me a hair cut." hahaha
Ava has complained of her "tummy hurting" for month and months. I have been told by WIC that she drinks to much milk, but never really thought much of it. I know you can get sick if you drink a large quantity at one time, I have done that and puked before. She seriously has 6-8 8oz sippy cups full of fat free milk a day. She has been drinking that much milk since she started drink cow milk. I was told she is drinking double the amount she should be and that it can cause inflammation of the stomach and that is probably what is going on. So, only 3 cups of milk a day for Ava now.
We have speech therapy again for Jacob tomorrow. Today he did not eat as well as he did Monday.
Will post pictures of Ava's party soon.
Friday, June 4, 2010
Feeding tube OH feeding tube how I dread you, but look forward to you!
We went to see the GI doctor in Tampa at St. Josephs Children's Hospital for Jacob yesterday. He is still under weight and almost 11 months old. So 1st they want to increase his calories to 24 calories an ounce from 22. We started that yesterday. I call on Monday to schedule a date for his surgery to have G-tube placement. He will still be able to eat with a bottle, but for the times he is very agitated and gagging when he eats I will still be able to feed him without the worry of him loosing weight and aspirating. We will continue to have speech/feeding therapy 2x a week and once he is eating well all the time we will have the feeding tube removed.
Jacob is also getting his feet orthodics fitted today. He will wear them at night to help keep his feet where they should be. He also see Dr. Velez today for follow up on his diagnoses of pneumonia on Saturday.
Ava is doing good on the potty. As long as she does not have a pull up or diaper on and she is not asleep she has been telling me she has to go and runs to the bathroom. She decided she needs to go on the potty because she wants to go to school, so I told her she can not go to school until she pee pees and poops on the potty all the time.
Andrew is starting to sit up a little better on his own. He loves his jump a roo. He is trying to hold his bottle, but can't quit do it yet. I have also still been working with him on picking things up off trays and bringing food to his mouth. He loves the teething cookie things and is still having trouble with the little star things.
Ava's birthday party is on Monday. I'm excited. I've never done a party anywhere but my house. I hope it does not cost a fortune and everything goes smoothly.
Jacob is also getting his feet orthodics fitted today. He will wear them at night to help keep his feet where they should be. He also see Dr. Velez today for follow up on his diagnoses of pneumonia on Saturday.
Ava is doing good on the potty. As long as she does not have a pull up or diaper on and she is not asleep she has been telling me she has to go and runs to the bathroom. She decided she needs to go on the potty because she wants to go to school, so I told her she can not go to school until she pee pees and poops on the potty all the time.
Andrew is starting to sit up a little better on his own. He loves his jump a roo. He is trying to hold his bottle, but can't quit do it yet. I have also still been working with him on picking things up off trays and bringing food to his mouth. He loves the teething cookie things and is still having trouble with the little star things.
Ava's birthday party is on Monday. I'm excited. I've never done a party anywhere but my house. I hope it does not cost a fortune and everything goes smoothly.
Wednesday, June 2, 2010
Pictures and my new addiction
Daddy and Ava at Animal Kingdom
Jacob not wanting to hold his head up
Andrew eating his cookie
This is what I caught Ava doing in the garage when she was suppose be getting ready for bed.Jacob was not being my friend by the end of the day. He did good all day today even ate a good part of his bottles and baby food. I tried to give him his bedtime feeding and he was so stiff. He arched back and straitened his legs the entire time. He cried like he was hungry, but then when I put the bottle in his mouth he got pissed. I finally did get him to eat about 4 ounces which he chocked and gaged part of that. I'm sure his lungs appreciated it. :-(
I caught Andrew doing something new today. He was in his crib rolling around then he got up on all 4s and was rocking back and forth. Then he seen me rolled over to his back and giggled. :-) I have been trying to get him to sit up without assistance, but he is so busy reaching for anything he can put in his mouth he falls over after a minute or 2. I hope by their 1st birthday Andrew is close to crawling and at least sitting up. I would be happy if Jacob would just learn how to roll over or even simply reach for a toy. I am going to start working with Andrew with picking stuff up. I bought him the little puff fruit things so he can start learning how to feed himself. He still refused to hold his bottle, but he will eat an entire teething biscuit cookie thing if I give it to him.
Thursday is Jacob's GI appointment in Tampa I suppose we will know if he will be getting a g-tube or not then.
Subscribe to:
Posts (Atom)