Yesterday was okay. It was VERY stressful and not just because it was "that day." :-/ Andrew and Ava woke up in evil, crazy, whiny kid mode yesterday morning. I got them fed and ready for church and then I went and picked Jack up from the hospital and took him home to get ready for church. A big THANK YOU to Jack's dad Jerry. We totally ditched him with Jacob for almost 7 hours! He volunteered though :-) Anyways, we got to church. Our pastor Adam called us in front of the church and told everyone about Logan. Then he mentioned to the church how he is trying to find people to get corporation to donate to a nonprofit the $30,000 needed for a hyperbaric chamber that could help Jacob and other local children in need. He said by this time next year he would like to see this happen. I will pray about it and we will see. :-) The kids stayed with us because they are still a little sickie. They were horrible! Just horrible!!! Ava screamed for coffee about 1000x times. Andrew just screamed. Jack had to stand outside the doors with Andrew after about 20 minutes. Then Ava came back and sat with me. 10 minutes later this is what she decided to say very loudly (because she had to go to the bathroom) "MOMMY I HAVE SOMETHING IN MY GYNNIE!" When I realized what she was saying I covered her mouth. She said it several times. I hope no one heard her announcing she had something in her gynnie in the middle of church. :-/ LOL We ended up leaving church a few minutes early because the kids continued to have complete breakdowns. From there we stopped by Publix and picked up some fresh flowers for Logan's grave. We went to his grave and cleaned his headstone and put the flowers out for him. From there we went to a Chinese buffet. It was so NASTY! We stopped back by the house to pick up some stuff for the kids and then finally relieve Jack's dad. :-) All 3 kids cried for a few hours after we got there and I think hmmm around 6 the babies went to sleep. Well Andrew did, Jacob just stopped crying. Ava continued to be bad. It was great having all the visitors that came to see Jacob. It made the time pass quickly. Thank to every who came for a visit. Thanks again Adam for breakfast.
We found out yesterday that Jacob DID have RSV. Apparently the nurse who told us the result was negative was wrong. He made it all night last night with no oxygen so he got to come home today. I spent the entire day cleaning. Finally got about 80% of the laundry done and PUT AWAY this his not happened in many months. I cleaned Ava landfill! It took me 4 hours. I moved her long dresser to her closet to make more room for her toys. I threw away 2 bags of junk. She was asleep. I call her into the room when I am done..she had just woke up. I am all excited for her to she her room organized and cloths actually hanging in the closet and this is what I get "MOMMY! Why did you touch my stuff. You need to put my dressers back that one goes here and this one goes there. I don't like that one in the closet. and this (referring to her zue zue pet cage thing that could not sit on the floor before because there was not where to put it) goes on my bed!" So I say, "you don't like it. " She say "NO PUT IT BACK!" with her arms crossed. What a bratty like ungrateful troll! I leave the room and continue putting cloths away. I come back in her room with more cloths and she had pulled all her cloths off the hangers and pulled her shoes off the shelf .It was all laying in a pile on the floor. I took all I had not to beat her. Then she decided to play in her room since she could actually find her toys. What a brat...she never did tell me thank you. Well my entire body hurts now and I have a long day tomorrow. Therapy starts back up for the boys they had none since last Monday and Jacob sees the pulmonologist at 230. We are also suppose to be getting home suctioning...thought they were suppose to come today, but they didn't. He did have 1 vomiting episode shortly after he came home. He is set on a continuous feed at 40cc an hour. The Ph Prob has been rescheduled to next Monday.
Monday, January 31, 2011
Sunday, January 30, 2011
Logan's 1 Year Angelversary is TODAY
You fought so hard against all odds you lungs just could not help you stay.
6 long months of medications, tubes, and monitors kept you here with me.
Though my heart will never be the same I can not fall to pieces because
I see you every day in your brothers' faces.
I try not to ask God why because I know the reason.
You made me strong so I can carry on and care for those who need me.
With head held high I will not fall and cry each day, for you are safe now.
My heart may ache and tears may fall at times, but not because your gone.
They fall because you lived, you changed me, & you left when your work was done.
You are my triplet son, and there will always be a missing face in every picture.
but for those who knew you found something greater.
A greater faith, a greater love, and a greater strength than most will ever know.
Jacob and Andrew carry on living and breathing each day.
While you are in a greater place with no more struggles and pain.
You will always be my angel as you were before you were even gone.
I did not know then that the words I said would be true one day.
I referred to you as "Angel Boy" Even before you flew.
My heart must have know what my mind would not except.
I miss you little one, but it is okay you did not stay.
Life will carry on until we are all together again one day.
One of the last moments we spent with our son while he was alive. |
The 1st picture I had of all 3 of them. I was 9 weeks. |
The 1st time all 3 of my boys were together after they were born...67 days later. |
Thank you to everyone who has been here for our family during the last 2 years. Without your blessings to our family life would have been so much harder. God Bless each and every one of you. To Logan's NICU nurses. I continue to think of you often. You were Logan's safe haven. I knew he was in good hands when his favorites were with him. I love you guys and I will always have a place in my heart for each of you.
This was just some words I pulled from some of my older blogs I edited them a little to make them shorter:
January 30, 2010................Logan went to be with the Lord today after a very long 6 1/2 month battle in the NICU. The doctor thinks it was overwhelming infection that his lungs could not handle...........Early this morning at 4am his eyes were swollen shut, but he was still fighting he continued to fight the ventilator regardless of how many sedatives and pain medications he had. I knew this morning this would be the day he would meet the Lord. I prayed over him and told him he did not have to fight anymore that he did not have to hold on for me or his daddy. That we loved him and knew this was not the place he was meant to be. He gave us 6 1/2 months of love and joy. When I went back to see him again at 8am I knew the choice Logan had made. he was very peaceful and had stopped fighting. He no longer breathed with the vent. He had already went to the light and was just waiting on us to let him go..... We took pictures with the family said lots of prayers and unhooked him from the vent at 1pm. I held him in my arms while his life left his body. I knew the moment he was gone. His limp body suddenly stiffened then relaxed. He went peacefully with no pain. I am going to forever miss that baby boy. There will always be a void in my heart that aches for him. I feel comfort in the Lord and know God sent that baby to earth to show me how pure love could be for another soul. I felt God's love in that child and as he walks the golden streets of Heaven hand in hand with Jesus. I know he is safe and at peace. There is no more vents, trachs, needles, or sensors. He will forver be our angel baby and I will see him everyday in my heart, in my dreams, and every time I look at Jacob I will know Logan is there to. I know my sweet boy touched many peoples lives, I pray that Logan's purpose for being on this earth reaches you and that you to will know the love God hold for you in Heaven so you can one day experience it to. I love you Logan. You will never be forgotten by many.
February 3, 2010....A very kind person who wants to remain anonymous to us called the funeral home today before we arrived and paid off Logan's funeral bill in full. The director said in the 20 years he has been doing his job, that this has never happen to him where a complete stranger comes in to pay off another family's debt. WOW! I am so grateful. God is good and he is my provider. My love for God is so strong it overwhelmes me. I have such great peace with where my son is that I can't do nothing but rejoice in His name and knowing that Logan is the blessed one. He has the honor to be in such a wonderful place in the presence of the Lord. He walks hand in hand with Jesus with all our loved ones who left before us.. He is with mine and Jack's families. He is Loved by all. He led a short life, but a life full of hope, inspiration, and faith. I poured my heart and soul into his life to keep him alive because I wanted him to be healthy and strong. I made sure I did everything I could do for him including pumping pumping and pumping lots of milk for him and the boys and many sleepless nights to make sure I could see his sweet face as much as I could. I thank God for every day I was able to see my sweet baby, I continue to be sad for his loss, but rejoice in his life and what it meant to so many people. I am a stronger person though this, my faith is stronger, and my heart is kinder. I am humbled and know the best and worst can happen to anyone, I will never think things are beyond me. I will never say I can't do something, and I will no longer say that something like the death of a child could not happen to me. I just know that whatever life has enstored me, that God will get me through it.
It filled my heart with joy to have so many people come to show how much they loved my family, That Logan's life mattered, and that my family matters to them.
P.S. Logan looked beautiful and so peaceful today. It felt good looking at him looking so peaceful and not sick.
This was just some words I pulled from some of my older blogs I edited them a little to make them shorter:
January 30, 2010................Logan went to be with the Lord today after a very long 6 1/2 month battle in the NICU. The doctor thinks it was overwhelming infection that his lungs could not handle...........Early this morning at 4am his eyes were swollen shut, but he was still fighting he continued to fight the ventilator regardless of how many sedatives and pain medications he had. I knew this morning this would be the day he would meet the Lord. I prayed over him and told him he did not have to fight anymore that he did not have to hold on for me or his daddy. That we loved him and knew this was not the place he was meant to be. He gave us 6 1/2 months of love and joy. When I went back to see him again at 8am I knew the choice Logan had made. he was very peaceful and had stopped fighting. He no longer breathed with the vent. He had already went to the light and was just waiting on us to let him go..... We took pictures with the family said lots of prayers and unhooked him from the vent at 1pm. I held him in my arms while his life left his body. I knew the moment he was gone. His limp body suddenly stiffened then relaxed. He went peacefully with no pain. I am going to forever miss that baby boy. There will always be a void in my heart that aches for him. I feel comfort in the Lord and know God sent that baby to earth to show me how pure love could be for another soul. I felt God's love in that child and as he walks the golden streets of Heaven hand in hand with Jesus. I know he is safe and at peace. There is no more vents, trachs, needles, or sensors. He will forver be our angel baby and I will see him everyday in my heart, in my dreams, and every time I look at Jacob I will know Logan is there to. I know my sweet boy touched many peoples lives, I pray that Logan's purpose for being on this earth reaches you and that you to will know the love God hold for you in Heaven so you can one day experience it to. I love you Logan. You will never be forgotten by many.
February 3, 2010....A very kind person who wants to remain anonymous to us called the funeral home today before we arrived and paid off Logan's funeral bill in full. The director said in the 20 years he has been doing his job, that this has never happen to him where a complete stranger comes in to pay off another family's debt. WOW! I am so grateful. God is good and he is my provider. My love for God is so strong it overwhelmes me. I have such great peace with where my son is that I can't do nothing but rejoice in His name and knowing that Logan is the blessed one. He has the honor to be in such a wonderful place in the presence of the Lord. He walks hand in hand with Jesus with all our loved ones who left before us.. He is with mine and Jack's families. He is Loved by all. He led a short life, but a life full of hope, inspiration, and faith. I poured my heart and soul into his life to keep him alive because I wanted him to be healthy and strong. I made sure I did everything I could do for him including pumping pumping and pumping lots of milk for him and the boys and many sleepless nights to make sure I could see his sweet face as much as I could. I thank God for every day I was able to see my sweet baby, I continue to be sad for his loss, but rejoice in his life and what it meant to so many people. I am a stronger person though this, my faith is stronger, and my heart is kinder. I am humbled and know the best and worst can happen to anyone, I will never think things are beyond me. I will never say I can't do something, and I will no longer say that something like the death of a child could not happen to me. I just know that whatever life has enstored me, that God will get me through it.
It filled my heart with joy to have so many people come to show how much they loved my family, That Logan's life mattered, and that my family matters to them.
P.S. Logan looked beautiful and so peaceful today. It felt good looking at him looking so peaceful and not sick.
Saturday, January 29, 2011
Jacob is getting better
Jacob is still in the hospital. They have been giving him medication to bring down his congestion and it has worked well. He can now breath through his nose again. He is still wild and won't sleep much, but that is because he thinks he is superman just like Logan did when he was on all the steroids and nebs. He has been on a 1/2 liter of oxygen via nasal cannula when he is asleep because his oxygen levels drops to the mid 80's. They told me he is fine as long as he is above 90. I find this weird because as I recall per NICU rules babies that were over 40 weeks were suppose to be above 94-95%, but I could be wrong.... All I know is he is around 94-95% when he is awake..which is an improvement from when he came in. He was at 90-92%. When he was asleep today he actually required 1 liter of oxygen instead on 1/2. I don't know if this was just because he was resting better or what. It is stressing me out a little. He has NEVER required oxygen that I can remember during any of his sickies since he left the NICU. Why now? My nerves must really be getting tested. As I have mentioned before, this is the weekend Logan died last year and to see his identical twin now admitted to the hospital for "respiratory distress" is killing me. I know logically Jacob is not going to just suddenly die. I took this weekend off work to make it special. I took it off to remember Logan and do something fun as a family. I never thought in a million years I would be sitting in another hospital with his brother. Anyways, He is still wheezing, but overall doing a little better. Thank You for all your prayers concerning my family. Tomorrow will be a day to celebrate Logan because he lived, not to mourn that he is not with us. I wrote a blog that will post at 8am tomorrow. I worked on it on and off for a few days. Please take the time to read it. Thank You for taking the time to remember my brave little boys.
I also wanted to update on my friend Christine. She is in the process of packing her stuff and moving to Florida. She should be here by Monday. She is picking her life up and moving to have treatment in Tampa because they are one of the top cancer centers. Still no results on if it is cancer. All we know is their is a golf ball size tumor growing from her brain stem. She is on steroids and an array of other medications to keep brain swelling down etc. She reports that she is doing better. Oh and I must mention that she said I portrayed her as a bad person. :-) I must correct myself. She said I told about the person she used to be and not the person she is today. She is a wonderful mother and wife. She has supported and goes the extra mile for her family. She is not one who likes to sit back and let others doing things for her. She is strong willed and always finds away to get things done on her own. She is a wonderful strong person who has changed her life around to raise her children.
Oh and I was also going to report how well Jacob was doing on his feeds. We had him at a full feed at 45cc and hour over 24 hours which would be right where they wanted him. He had some coughing and hacking today and I was quite impressed that he had very little over it come up. Jack just called and said he had 2 full blown let me empty my stomach on you vomiting episodes back to back. I was excited that the new "trial" formula was going to be THE ONE, but apparently it is not :-( He was trialing Vital Jr.
I also wanted to update on my friend Christine. She is in the process of packing her stuff and moving to Florida. She should be here by Monday. She is picking her life up and moving to have treatment in Tampa because they are one of the top cancer centers. Still no results on if it is cancer. All we know is their is a golf ball size tumor growing from her brain stem. She is on steroids and an array of other medications to keep brain swelling down etc. She reports that she is doing better. Oh and I must mention that she said I portrayed her as a bad person. :-) I must correct myself. She said I told about the person she used to be and not the person she is today. She is a wonderful mother and wife. She has supported and goes the extra mile for her family. She is not one who likes to sit back and let others doing things for her. She is strong willed and always finds away to get things done on her own. She is a wonderful strong person who has changed her life around to raise her children.
Oh and I was also going to report how well Jacob was doing on his feeds. We had him at a full feed at 45cc and hour over 24 hours which would be right where they wanted him. He had some coughing and hacking today and I was quite impressed that he had very little over it come up. Jack just called and said he had 2 full blown let me empty my stomach on you vomiting episodes back to back. I was excited that the new "trial" formula was going to be THE ONE, but apparently it is not :-( He was trialing Vital Jr.
Friday, January 28, 2011
Sick little Jacob
Jacob will probably be in the hospital for 4 days give or take. He has to tolerate full feeds and have no desats or oxygen needs before going home. No RSV results yet. Dr. Said he is officially diagnosed with asthma :-/ He thinks his respiratory stuff is just exasperated even by a simple cold because of his existing conditions especially the reflux. Looks like our plans for Logan's anniversary of his death will be on hold for now. I'm sure he wants his brother to get better to. :-)
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Urgent: Prayers Needed for Jacob!!!!
So Jacob has been sick for over 3 months now....Andrew got a cold about a week ago...needless to say Jacob caught it.....now he is 2x sicker than his normal sickness. We have been giving him his normal meds, breathing treatments, steam baths etc... Yesterday he was not able to hold food down at all. He was put on a 24 hour feed last night...he coughed and had a hard time breathing all night. He still vomited even at 15 cc an hour. This morning his breathing was pretty bad. He was crying like he was in horrible pain. We gave him breathing treatments and then he vomited again. We called the doctor and got an appointment at 11:45 this morning. She seen him and said his lungs were as tight as she had ever heard them. He had 3 breathing treatments and a steroid shot. We were direct admitted to the pediatric floor at LRMC. We initially thought we would just be there over night, but when they hooked him up to the Pulse Ox his sats were running around 90-92% His admission is for Reactive Airway exaserbation, possible pneumonia and to rule out RSV, Flu, Rhino Virus.
Fast forward to tonight. He has been having some desats down into the 70's mainly when he is sleeping and when he goes into hard coughing fits. No fever...no cause for the desats. I was told his lungs looked okay and that there was no change from his last x-ray months ago. That was per a nurse and not a doctor and nurses are not allowed to tell you things.. He still has not been able to hold any food down. There has been some dry blood clots coming up into his g-tube when he is coughing. He is pretty dehydrated right now too.
They called the MD and there was talk of transferring him out to St. Pete or Tampa. Jack said he is dropping his sats into the 80's right now and they just stopped his feeds for tonight. For some reason he has not been put on oxygen yet. I will keep everyone posted when I know more in the AM.
Fast forward to tonight. He has been having some desats down into the 70's mainly when he is sleeping and when he goes into hard coughing fits. No fever...no cause for the desats. I was told his lungs looked okay and that there was no change from his last x-ray months ago. That was per a nurse and not a doctor and nurses are not allowed to tell you things.. He still has not been able to hold any food down. There has been some dry blood clots coming up into his g-tube when he is coughing. He is pretty dehydrated right now too.
They called the MD and there was talk of transferring him out to St. Pete or Tampa. Jack said he is dropping his sats into the 80's right now and they just stopped his feeds for tonight. For some reason he has not been put on oxygen yet. I will keep everyone posted when I know more in the AM.
Monday, January 24, 2011
Praying for Christine
This is my friend Christine. I've known her most of my life. She is an entire 11 months older than me. :-D We grew up together. I met her before I started kindergarten. We used to beat the crap out of each other...I remember when our older sisters used to trap us in the hallway until we beat each other up..lol we were even know to cut large portions of our hair off our heads...man we were bad! Not to mention knife throwing, gun touching, cigarette smoking, catching things on fire, sneaking liquor..WHERE WERE OUR PARENTS!Yeah, I bet no one knew that about me. :-) Ha Ha we always compare ourselves to each other who skinnier who's boobs were bigger etc.. (this still goes on LOL) she usually wins that one.....So if you can imagine the devil on one shoulder and an angel on the other...she was the devil not me! :-) LOL Through out our lives she may have had a bumpier road than mine at times, I can hands down say that when it comes to her children she would die for them. Anyways we have been close and distant from each other. We have taken different paths in life and then always manage to come back together at some point. I love this woman like a sister even when we don't talk for months at a time.
October of 2006 we found out that we were both pregnant. We had due dates within a week of each other...she was actually due 1st, but I won because I was induced a week early. :-) So during the 9 months of our pregnancy we reunited our childhood friendship and made it stronger after not speaking for a long period of time. We found out that we were both having girls etc..When we finally delivered our girls their birthdays were only days apart. Life went on and our lives got crazy. Her and her family moved out of state after the girls turned 1. Outside of a few short visits when she comes to Florida and some messages on facebook we became distant again.
The reason for this post is that my friend who I love very much even though we are so far apart is sick. The beautiful mother of 3 found out a few days ago she may have cancer. She had experienced headaches and fainting spells over the past few weeks. She went to the ER they scanned her head initially sending her home, but then called her back. She had an MRI done shortly after that and they found that she has a tumor of some sort growing from her brain stem. They can not operate on this part of the brain. The doctors believe she has lymphoma. She goes tomorrow for a full body cat scan to see if there is anything abnormal anywhere else in her body. There is not a definite answer that she has cancer yet, but it is very scary knowing that their is something wrong with the part of your brain that causes all the vital functions in the body to operate.
She is only 28 years old. She has 2 sons and a daughter. Her youngest is only 3. Please pray for her and her family. I know they are working on getting health insurance for her right now. I pray this does not hold her back from getting the testing she needs done to figure out exactly what is going and to see if and/or how it needs to be treated. I love you Chris. I want you to know I am here for you and just the thought of something happening to you brings me to tears.
I stole this from someone's facebook post and it is exactly what our friendship is like: Its been said that everlasting friends can go long periods of time without speaking and never question the friendship. These types of friends pick up like they just spoke yesterday, regardless of how long it has been or how far away they live, and they don't hold grudges. They understand that life is busy.....but you will ALWAYS love them.
She may want to kick my ass for publishing her business all over the Internet, but that's okay. It's how I roll. LMAO It would take a really long leg to kick my ass from South Carolina :-) I miss you and I will being praying for you everyday. xoxoxoxoxoxo
October of 2006 we found out that we were both pregnant. We had due dates within a week of each other...she was actually due 1st, but I won because I was induced a week early. :-) So during the 9 months of our pregnancy we reunited our childhood friendship and made it stronger after not speaking for a long period of time. We found out that we were both having girls etc..When we finally delivered our girls their birthdays were only days apart. Life went on and our lives got crazy. Her and her family moved out of state after the girls turned 1. Outside of a few short visits when she comes to Florida and some messages on facebook we became distant again.
The reason for this post is that my friend who I love very much even though we are so far apart is sick. The beautiful mother of 3 found out a few days ago she may have cancer. She had experienced headaches and fainting spells over the past few weeks. She went to the ER they scanned her head initially sending her home, but then called her back. She had an MRI done shortly after that and they found that she has a tumor of some sort growing from her brain stem. They can not operate on this part of the brain. The doctors believe she has lymphoma. She goes tomorrow for a full body cat scan to see if there is anything abnormal anywhere else in her body. There is not a definite answer that she has cancer yet, but it is very scary knowing that their is something wrong with the part of your brain that causes all the vital functions in the body to operate.
She is only 28 years old. She has 2 sons and a daughter. Her youngest is only 3. Please pray for her and her family. I know they are working on getting health insurance for her right now. I pray this does not hold her back from getting the testing she needs done to figure out exactly what is going and to see if and/or how it needs to be treated. I love you Chris. I want you to know I am here for you and just the thought of something happening to you brings me to tears.
I stole this from someone's facebook post and it is exactly what our friendship is like: Its been said that everlasting friends can go long periods of time without speaking and never question the friendship. These types of friends pick up like they just spoke yesterday, regardless of how long it has been or how far away they live, and they don't hold grudges. They understand that life is busy.....but you will ALWAYS love them.
She may want to kick my ass for publishing her business all over the Internet, but that's okay. It's how I roll. LMAO It would take a really long leg to kick my ass from South Carolina :-) I miss you and I will being praying for you everyday. xoxoxoxoxoxo
Tuesday, January 18, 2011
Ph Prob Scheduled
Finally scheduled Jacob's test for his reflux. He goes on January 31st we have to be there at 6am. He stops his reflux medication 72 hours before the test. He has done pretty good the last couple days. He has not had any major vomits. A few I guess you would say spit ups. He is still congested and coughing. He is trying to cut some molers and I think that is contributing to his extra crying lately. Poor baby can't teeth and chew on things like other babies do.
Sunday, January 16, 2011
What the Heck!
I just thought I would document my sister's babysitting report from today. She calls me at work and tells me that Andrew not only stood on his own, but took a few steps by himself today! He only did this for a few seconds. He stood a few seconds without holding anything for me on Friday night too. WTH he crawled for her 1st too! I don't think he is anywhere near independently walking on his own, but hey it's still a 1st. :-)
Now the question of the day...Why the heck does my 3 year old daughter think it is okay to kiss little boys on the lips? So when my sister 1st told me that Ava was in trouble for kissing Caleb (Caleb is my sister's best friend's son. He is 5) I was like okay why is she in trouble for that. Then she proceeds to continue on that she has had to separate them because she caught them locking lips several times today. She said that they informed her that they were married and it was okay for a husband and wife to kiss. They were apparently referring to each other as Honey and Dear all day long, holding hands, sitting and laying next to each other, and of course KISSING!. I tell her when I get there that she can only kiss Caleb on the cheek and that she is not big enough to kiss boys on the lips or be married. She proceeds to tell me that she is big enough, that she is "taller" and that Caleb's cheeks are dirty so she has to kiss his mouth! Then she tells me she is his wife. Oh my....if she is doing this at 3...what is she going to be like when she is a teenager?!?!?! We ended our conversation with me telling her that she can't kiss anyone on the lips because it will make her sick and give her a tummy ache...sometimes lying that she will become deathly ill is the only way to get her to see things my way. I tell her all the time that if she does not keep her car seat chest buckle together that her head will fall off. She is pretty convinced that this is true.....but now she tells me it is okay as long as she "hangs on" LOL
Now the question of the day...Why the heck does my 3 year old daughter think it is okay to kiss little boys on the lips? So when my sister 1st told me that Ava was in trouble for kissing Caleb (Caleb is my sister's best friend's son. He is 5) I was like okay why is she in trouble for that. Then she proceeds to continue on that she has had to separate them because she caught them locking lips several times today. She said that they informed her that they were married and it was okay for a husband and wife to kiss. They were apparently referring to each other as Honey and Dear all day long, holding hands, sitting and laying next to each other, and of course KISSING!. I tell her when I get there that she can only kiss Caleb on the cheek and that she is not big enough to kiss boys on the lips or be married. She proceeds to tell me that she is big enough, that she is "taller" and that Caleb's cheeks are dirty so she has to kiss his mouth! Then she tells me she is his wife. Oh my....if she is doing this at 3...what is she going to be like when she is a teenager?!?!?! We ended our conversation with me telling her that she can't kiss anyone on the lips because it will make her sick and give her a tummy ache...sometimes lying that she will become deathly ill is the only way to get her to see things my way. I tell her all the time that if she does not keep her car seat chest buckle together that her head will fall off. She is pretty convinced that this is true.....but now she tells me it is okay as long as she "hangs on" LOL
Friday, January 14, 2011
I can't think of an eye catching title today
I wish I had something more interesting to post. I love how some of the blogs I read have these clever little stories that are quite creative posted every few days..not me I live in a sea of sick children. You know on facebook how at the end of the year there are the apps that will tell you what your most used words were for the year. Last year it was Logan. This year I did not even try and look, but I certainly know if you tallied up the blog it would be JACOB"S SICK JACOB"S SICK JACOB"S SICK!!!!
So, Jacob is still sick....he has been sick since before Thanksgiving with no sign of getting better. I finally gave in and started him on steroids 3 days ago. Then on top of it all he caught my nasty cold I had last week and now he is not only sick, but miserably sick. Let's do a recap of his last GI appointment from Wednesday. I totally went in with the anticipation that they were going to admit him like they have the last 3-4 times. I've lost track at this point. I had the bags packed in the car because over the phone when I made the appointment I was told he would probably be admitted. Jacob was congested, coughing, wheezing, arching, and just plain being miserable when the nurse practitioner came in to see him. We go over the same crap we always go over medications, how much he vomits, and the "continuous feed" option. I explain that even on continuous feeds he still arches and cries in pain. He still gags and manages to vomit etc. Then they offer the j-tube which would leave him on continuous feeds with no other option. I don't want him attached to a tube all the time. Not only does it suck for him, but it sucks for me and husband. Every time you pick him up your having to worry about the tube, is the battery charged enough if you leave the house, all the odd looks in public, Andrew pulling on it, etc. Even though he can not eat by mouth right now I still want him to have the most "normal" life that he can...whatever that may be. Anyways getting to the point. She brings up the option that I am leaning toward which is a big surgery for him. I think I want him to have a nissen done. This is where they wrap the stomach around the esophagus making a band so not only can he not vomit, but it make it where he can not expel gas. This is the down side to it...causes people who have it done have a lot of bloating etc. I also read that it does not have a high success rate with children with neurological impairment. The nurse practitioner said even though he can not vomit, that kids will continue to dry heave and gag. Well, he is already miserable and does that anyway, I would rather him dry heave then have him covered in vomit all the time. It is better than me coming in his room in the morning to find him severely congested with dry vomit all over him face and up his nose and his chest rattling and wheezing from him choking on his vomit while I am not there to save him. So even though they frown upon having this procedure done, she finally gives in and tells me she will refer us to the surgeon. Then she asks me the same question I have been asking them for MONTHS! When is the last time he had a ph prob study done. So, I respond with NEVER! I continue on that I have asked this every time he has been admitted to the hospital etc. Oh BTW, the ph prob well tell them how bad and how often he refluxes. She tell me that they must have this procedure done prior to the referral to the surgeon. 2 day later now I continue to wait for their office staff to call me back to get it scheduled. It is an admission into the hospital for 24 hours. She also mentioned after the test is done that they might try to get the prilosec filled again. Last time we tried to have it filled insurance would not pay for it. Insurance was willing to pay for part of it, but they wanted $180 out of pocket for a 15 day supply. His teeth are turning yellow even though I brush them 3 times a day from his vomiting. I need to get him to a dentist, but if medicaid paying for dental work is anything like them paying for vision stuff then I am screwed. Jacob has private insurance though my job and medicaid as a secondary. My private insurance does not cover vision or dental on him. I lost his glasses a few weeks ago that I paid out of pocket for. I was told medicaid paid for frames, so I decided I would pay out of pocket for another pair and get a 2nd pair through medicaid so I always have a back up. I was told by the eye glass place that because he has private insurance medicaid will not pay....oh well looks like I will be waiting for an income tax return and taking him. Wow, that was much longer than I thought!
Andrew has now had several visits with the physical therapist. She told me when she assessed him that he is only doing 5% of what he should be doing for his adjusted age which is 14 months. She also agrees that he is only at a 9-10 month old level gross motor skill wise. Everyone assures me that he will catch up in time, but its hard to even have play dates with friends who have kids Andrew's age and younger watching them doing things that he can't do. He is getting pretty good cruising on furniture though. He makes it the entire length of the sectional now. He now says no, bye bye, ba ba, thank you, uh-oh, da da, ma ma, all gone, and night night. Oh and tickle tickle tickle.
I'm part of a TTTS support group on facebook. There are some great ladies on there. There is one lady who has recently lost both her babies to TTTS that is making a calender in support of the march of dimes. She is putting all the babies from the support group that were affected by TTTS on the calender for the month that they were born and in the cases where 1, 2 or 3 babies have passed she also puts the day they died. I think this s a great way to show awareness for TTTS. It shows good outcomes and the bad. It shows how the lasor surgery really does save lives. I think every OBGYN office should have one to remind them to look for this deadly disease before it is to late. Not saying my boys outcome would have been any better. I could have lost all 3,but I was never offered a chance to see a doctor that could have done the surgery that could have possibly gave my boys a chance of staying inside longer. My doctor kept telling me I did not have TTTS even though I seen the signs myself and asked him over and over again. Moms expecting identicals in any multiples pregnancy should be aware of the signs. I guess I trusted my doctor to much...I sure wish I would have gotten a second option. By the time my TTTS was diagnosed it was already stage 3 and it was to late to even consider laser surgery. Back to the calender. I am excited for her to get it finished. I really want to buy 1. She went though my pictures on facebook and edited some with words for the calender. Thanks Shannon. In 16 days it will be 1 year since Logan left us.
So, Jacob is still sick....he has been sick since before Thanksgiving with no sign of getting better. I finally gave in and started him on steroids 3 days ago. Then on top of it all he caught my nasty cold I had last week and now he is not only sick, but miserably sick. Let's do a recap of his last GI appointment from Wednesday. I totally went in with the anticipation that they were going to admit him like they have the last 3-4 times. I've lost track at this point. I had the bags packed in the car because over the phone when I made the appointment I was told he would probably be admitted. Jacob was congested, coughing, wheezing, arching, and just plain being miserable when the nurse practitioner came in to see him. We go over the same crap we always go over medications, how much he vomits, and the "continuous feed" option. I explain that even on continuous feeds he still arches and cries in pain. He still gags and manages to vomit etc. Then they offer the j-tube which would leave him on continuous feeds with no other option. I don't want him attached to a tube all the time. Not only does it suck for him, but it sucks for me and husband. Every time you pick him up your having to worry about the tube, is the battery charged enough if you leave the house, all the odd looks in public, Andrew pulling on it, etc. Even though he can not eat by mouth right now I still want him to have the most "normal" life that he can...whatever that may be. Anyways getting to the point. She brings up the option that I am leaning toward which is a big surgery for him. I think I want him to have a nissen done. This is where they wrap the stomach around the esophagus making a band so not only can he not vomit, but it make it where he can not expel gas. This is the down side to it...causes people who have it done have a lot of bloating etc. I also read that it does not have a high success rate with children with neurological impairment. The nurse practitioner said even though he can not vomit, that kids will continue to dry heave and gag. Well, he is already miserable and does that anyway, I would rather him dry heave then have him covered in vomit all the time. It is better than me coming in his room in the morning to find him severely congested with dry vomit all over him face and up his nose and his chest rattling and wheezing from him choking on his vomit while I am not there to save him. So even though they frown upon having this procedure done, she finally gives in and tells me she will refer us to the surgeon. Then she asks me the same question I have been asking them for MONTHS! When is the last time he had a ph prob study done. So, I respond with NEVER! I continue on that I have asked this every time he has been admitted to the hospital etc. Oh BTW, the ph prob well tell them how bad and how often he refluxes. She tell me that they must have this procedure done prior to the referral to the surgeon. 2 day later now I continue to wait for their office staff to call me back to get it scheduled. It is an admission into the hospital for 24 hours. She also mentioned after the test is done that they might try to get the prilosec filled again. Last time we tried to have it filled insurance would not pay for it. Insurance was willing to pay for part of it, but they wanted $180 out of pocket for a 15 day supply. His teeth are turning yellow even though I brush them 3 times a day from his vomiting. I need to get him to a dentist, but if medicaid paying for dental work is anything like them paying for vision stuff then I am screwed. Jacob has private insurance though my job and medicaid as a secondary. My private insurance does not cover vision or dental on him. I lost his glasses a few weeks ago that I paid out of pocket for. I was told medicaid paid for frames, so I decided I would pay out of pocket for another pair and get a 2nd pair through medicaid so I always have a back up. I was told by the eye glass place that because he has private insurance medicaid will not pay....oh well looks like I will be waiting for an income tax return and taking him. Wow, that was much longer than I thought!
Andrew has now had several visits with the physical therapist. She told me when she assessed him that he is only doing 5% of what he should be doing for his adjusted age which is 14 months. She also agrees that he is only at a 9-10 month old level gross motor skill wise. Everyone assures me that he will catch up in time, but its hard to even have play dates with friends who have kids Andrew's age and younger watching them doing things that he can't do. He is getting pretty good cruising on furniture though. He makes it the entire length of the sectional now. He now says no, bye bye, ba ba, thank you, uh-oh, da da, ma ma, all gone, and night night. Oh and tickle tickle tickle.
I'm part of a TTTS support group on facebook. There are some great ladies on there. There is one lady who has recently lost both her babies to TTTS that is making a calender in support of the march of dimes. She is putting all the babies from the support group that were affected by TTTS on the calender for the month that they were born and in the cases where 1, 2 or 3 babies have passed she also puts the day they died. I think this s a great way to show awareness for TTTS. It shows good outcomes and the bad. It shows how the lasor surgery really does save lives. I think every OBGYN office should have one to remind them to look for this deadly disease before it is to late. Not saying my boys outcome would have been any better. I could have lost all 3,but I was never offered a chance to see a doctor that could have done the surgery that could have possibly gave my boys a chance of staying inside longer. My doctor kept telling me I did not have TTTS even though I seen the signs myself and asked him over and over again. Moms expecting identicals in any multiples pregnancy should be aware of the signs. I guess I trusted my doctor to much...I sure wish I would have gotten a second option. By the time my TTTS was diagnosed it was already stage 3 and it was to late to even consider laser surgery. Back to the calender. I am excited for her to get it finished. I really want to buy 1. She went though my pictures on facebook and edited some with words for the calender. Thanks Shannon. In 16 days it will be 1 year since Logan left us.
Friday, January 7, 2011
Bye Bye IUD
Went to the hospital at 6am. Was in the operating room at 8...and left the hospital at 11:45. WOW I was impressed. Everything went so smooth. I asked the doctor in recovery where the IUD was embedded and he told me once he dilated the cervix he pulled on it and it just came out in 1 piece. So apparently it was just stuck at the top of the cervix and not embedded. WTF! He also did a D and C because of the abnormal bleeding I had been having all year. Pain was not so bad, by the evening it was gone. Instead my entire body ached and my throat hurt from being intubated. Dang I can only imagine how Logan felt being intubated all those times.....my neck, back and chest still hurt. I believe I caught a nasty little virus as well. At first I thought the dry cough was just from the sore throat etc...now it has turned into full on cold symptoms. I have went months without catching anyone's cooties. Everyone at work has been sick over that past few weeks...I always make a big deal out of it, because I don't like working with sick people. NOW IT IS MY TURN TO DRAG MY BUTT IN THERE ON SUNDAY AND SPREAD MY GERMS muahhhhhahhhahaha
We missed Jacob's pulmonology appointment today, but I did accomplish ordering him new glasses. His has been lost for over 2 weeks now.
Did I mention that Andrew can now drink from a straw. It is so cute!
Jacob has made it an entire day without vomiting. Woo Hoo. Oh and we discovered he is allergic to oatmeal! Who knew? He went to get his synergis shot on Wednesday, but broke out in hives at the doctors office..so maybe Monday we will go back and get it.
He is suppose to see the GI doctor on Tuesday...they told me they planned on admitting him after they seen him. I am not going to let them. My parents are in town until Wednesday/Thursday. I don't know I guess it all depends on what they say. I switched to mixing rice in with his food now and that seems to have helped. He is not coughing this week that is why the vomiting has been less...definitely now cure....I'm sure as soon as he catches this nasty virus I have he will be puking all over the place again.
I go for follow up in 2 weeks from the IUD removal...now I have to decide on what birth control to try next.....
We missed Jacob's pulmonology appointment today, but I did accomplish ordering him new glasses. His has been lost for over 2 weeks now.
Did I mention that Andrew can now drink from a straw. It is so cute!
Jacob has made it an entire day without vomiting. Woo Hoo. Oh and we discovered he is allergic to oatmeal! Who knew? He went to get his synergis shot on Wednesday, but broke out in hives at the doctors office..so maybe Monday we will go back and get it.
He is suppose to see the GI doctor on Tuesday...they told me they planned on admitting him after they seen him. I am not going to let them. My parents are in town until Wednesday/Thursday. I don't know I guess it all depends on what they say. I switched to mixing rice in with his food now and that seems to have helped. He is not coughing this week that is why the vomiting has been less...definitely now cure....I'm sure as soon as he catches this nasty virus I have he will be puking all over the place again.
I go for follow up in 2 weeks from the IUD removal...now I have to decide on what birth control to try next.....
Wednesday, January 5, 2011
Wow it has been a great couple of days :-)
After a horrible weekend at work. I spent Monday just relaxing. Our tire went flat on the van on Friday. Jack went to put the spare on and it was flat too. So, we did go out on Monday and got the tire fixed and got some Sonny's To Go. Then we went home and watched movies. We watched the last Shrek movie and Flipped. What a great day it was . We really needed a day of nothing. Today we had to get down to business. I finally tackled my nasty kitchen. An over filled dishwasher and 3 sink fulls of hand washed dishes later....the cabinets finally have dishes again. Then I tackled the pantry. We seriously had 8 boxes of open cereal in there. All in all we I had 3 garbage bags full of crap to take out of the kitchen...I can honestly say I think that was the worse I had ever allowed my kitchen to get. New Years resolution #1: To keep up with the house work this year. Maybe next week we will finally get the rest of the Christmas stuff down. I told Ava we had to take the Christmas Tree down and she freaked out and started crying...so I decided to leave it up another week for her.
I have a few more "goals" for this year: 2. to organize and declutter the house 3. to paint FINALLY 4. to stick to a healthier diet and 5. Just maybe if all the stars are aligned and it is God's will we want to attempt to have another child later this year. I know most people reading this thinks we are out of our mind, but oh well it our life not yours and I vow this year I am going to keep my business my business. :-)
I think Jacob is finally on the mend after over a month of being ill. He is still a little stuffy and coughs. His last major vomiting was Sunday night. We have made it 48 hours nearly vomit free. I was feeding him earlier and I put a tiny amount of baby food on his tongue and he chocked an gagged on it till he had a small amount of spit up, but not the usually emptying of the entire stomach content. The experiment I am trying right now is mixing baby food and oatmeal together with whole milk or pediasure 3 times a day and pushing it with a 60cc syringe through his g-tube...I hope I don't clog it. So far so good. I give him between 2-4 oz of a thicker texture food. then I mix a little more oatmeal in with the rest of his pedisure and run it through his tube on a pump over 2 hours. It seems to be controlling his reflux a lot better. I did do this on Saturday night and he puked all over the place, but I think I over fed him. Since he has been getting more "real food" he seems happier. He is not arching and crying all day. When he is sitting up he is not refluxing and swallowing his food back down. I've tried this before and got away from it..this time I am trying to make it more routine. He is adjusting to his new medication better as well. I don't think the doses are just right yet, but I do think he is better than he was before the new neurologist. I don't notice the absent stares and twitching as much.
Tomorrow is Surgery Eve. My wonderful sister whom is always there for me will have my kids tomorrow night. While I get up bright and early Thursday morning. I have to be at the hospital at 6am. I'm not sure of the exact time of the procedure. All I know is I hope they are able to get the stupid IUD out with cutting me. Hopefully all will go well so I can take Ava to he friend Josh's Birthday party at her favorite place on Earth Backyard Adventures. Then Saturday I have the day off to go to my friend's triplets 1st Birthday Party. Oh Jacob sees Dr. Gondor Friday morning and Andrew has his 1st physical therapy session in the morning at 8:30 seeing that it is 2:13 am right now I should go to bed.
I have a few more "goals" for this year: 2. to organize and declutter the house 3. to paint FINALLY 4. to stick to a healthier diet and 5. Just maybe if all the stars are aligned and it is God's will we want to attempt to have another child later this year. I know most people reading this thinks we are out of our mind, but oh well it our life not yours and I vow this year I am going to keep my business my business. :-)
I think Jacob is finally on the mend after over a month of being ill. He is still a little stuffy and coughs. His last major vomiting was Sunday night. We have made it 48 hours nearly vomit free. I was feeding him earlier and I put a tiny amount of baby food on his tongue and he chocked an gagged on it till he had a small amount of spit up, but not the usually emptying of the entire stomach content. The experiment I am trying right now is mixing baby food and oatmeal together with whole milk or pediasure 3 times a day and pushing it with a 60cc syringe through his g-tube...I hope I don't clog it. So far so good. I give him between 2-4 oz of a thicker texture food. then I mix a little more oatmeal in with the rest of his pedisure and run it through his tube on a pump over 2 hours. It seems to be controlling his reflux a lot better. I did do this on Saturday night and he puked all over the place, but I think I over fed him. Since he has been getting more "real food" he seems happier. He is not arching and crying all day. When he is sitting up he is not refluxing and swallowing his food back down. I've tried this before and got away from it..this time I am trying to make it more routine. He is adjusting to his new medication better as well. I don't think the doses are just right yet, but I do think he is better than he was before the new neurologist. I don't notice the absent stares and twitching as much.
Tomorrow is Surgery Eve. My wonderful sister whom is always there for me will have my kids tomorrow night. While I get up bright and early Thursday morning. I have to be at the hospital at 6am. I'm not sure of the exact time of the procedure. All I know is I hope they are able to get the stupid IUD out with cutting me. Hopefully all will go well so I can take Ava to he friend Josh's Birthday party at her favorite place on Earth Backyard Adventures. Then Saturday I have the day off to go to my friend's triplets 1st Birthday Party. Oh Jacob sees Dr. Gondor Friday morning and Andrew has his 1st physical therapy session in the morning at 8:30 seeing that it is 2:13 am right now I should go to bed.
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