Nickolas finally went back to school today after being home for over 2 weeks because of his recent surgery. It's so quiet here without him. Jesse is so lost without his brother here. Lots to do the rest of the week. Jesse has a Cardiology appointmet on Friday. Hope everything with his heart is still looking good. Dont need more worries on top of the kidney problems he's having right now.
The boys had a blast at Idewild on Sunday. Its a local amusement park with a huge swimming pool. We spent over 9 hours there. I think I got worn out before the kids did.
Thanks again to everyone who sent kind words and prayers for us. Its going to be a very rough road ahead, but we are strong and will make it through whatever obsticle is sent our way. Love you all!
Tuesday, June 1, 2010
Tuesday, May 25, 2010
My heart cries!
As I sit here and watch my boys play, my heart is crying inside. How could someone that looks so perfect on the outside, have so many issues going on inside of that tiny little body? What am I to do when he needs the transplant? Do I wait for a strangers kidney, or make the sacrifice of a lifetime? What I mean is, the doctors mentioned to us a while ago about Jesse's big brother Nickolas being a match for a kidney. But can I do it? Do I watch both of my boys go through surgery at the same time? I'd rather the kidney come from someone we know, but do I put Nickolas' life out on a limb like that? But then again, he would be saving his baby brothers life. I just dont know what to do. I guess we will deal with it when the times comes.
Nickolas hasbeen doing well since his surgery. He still hasnt eaten anything in 7 days. His doctor said it was normal as long as he is taking in a lot of fluids, which he is. Both of my boys are fighters through and through.
I love my boys with all of my being. If it wasnt for them coming into my life, who knows where I'd be.
Nickolas hasbeen doing well since his surgery. He still hasnt eaten anything in 7 days. His doctor said it was normal as long as he is taking in a lot of fluids, which he is. Both of my boys are fighters through and through.
I love my boys with all of my being. If it wasnt for them coming into my life, who knows where I'd be.
Monday, May 24, 2010
Update on Jesse
Well, the news was not good today. we were told that Jesse will need to be on dialysis or have a transplant in the next few years. His right kidney will never have any function. The cysts grew a lot bigger on the right side. The left kidney, which was working good at birth, is now losing function and is not growing with him.
I am so lost right now. Dont know what I will do if something happens to my baby boy. To have these wonderful 2 years with him already, through all of the ups and downs, we have made it this far. I just want to crawl into a corner and cry, but I know I cant. Jesse needs me to be strong for him. He is a fighter, I know this is my heart. Ive watched him have his tiny heart cut open twice. He recovered so well and so quick.
Please keep your prayers coming for my little guy.
Mommy loves you so much Jesse. You will pull through this, I feel it in my heart. For every tear I cry, is a tear of joy for each moment of your sweet life I get to spend with you!
I am so lost right now. Dont know what I will do if something happens to my baby boy. To have these wonderful 2 years with him already, through all of the ups and downs, we have made it this far. I just want to crawl into a corner and cry, but I know I cant. Jesse needs me to be strong for him. He is a fighter, I know this is my heart. Ive watched him have his tiny heart cut open twice. He recovered so well and so quick.
Please keep your prayers coming for my little guy.
Mommy loves you so much Jesse. You will pull through this, I feel it in my heart. For every tear I cry, is a tear of joy for each moment of your sweet life I get to spend with you!
Tuesday, May 18, 2010
Dealing with Kidneys Now
We talked to Jesse's Nephrologist (kidney doc) today. The news wasnt too good. He has more cysts growing on his right kidney and some issues with his left kidney now. I dont know if I can handle watching my child go through yet another surgery. How much more does he/we have to deal with. This child has been through enough in his 2 years of life than most adults. I sit and cry every night and wonder what I could have done differently while I was pregnant. Is he sick because of me being diabetic? Was this a fluke of nature? We will NEVER know.
Nickolas made it through is surgery yesterday. He had his tonsils and adnoids removed due to him having a lot of sleeping issues. He was such a trooper. We left home at 6:30am and he was discharged at 6:30pm. It was a VERY long day at Children's Hospital to say the least. He is recovering well here at home. Thanks to everyone for their thoughts and prayers.
Nickolas made it through is surgery yesterday. He had his tonsils and adnoids removed due to him having a lot of sleeping issues. He was such a trooper. We left home at 6:30am and he was discharged at 6:30pm. It was a VERY long day at Children's Hospital to say the least. He is recovering well here at home. Thanks to everyone for their thoughts and prayers.
Saturday, May 15, 2010
The Day My Life Was Changed Forever.
My day started out wonderful on this sunny September day. I was about 7 months pregnant and happy in love with my babys father Ronnie. We were on our way to yet another pre-natal appointment. I had to go to the doctor once a week because I am severe Diabetic. Anyway, we arrived in Wexford, Pa to have a Fetel Echocardiogram done on out unborn baby. The docs wanted to make sure the babys' heart and kidneys were alright because they saw some shadowing on a previous ultrasound. Well, the doctor began the Echo and right away she started telling me that we better prepare ourselves for a sick child. My world crashed. Its not supposed to be like this. Woman are supposed to get pregnant and have a beautiful, healthy baby. So I thought. I cried the whole 1 1/2 hour drive home. Why me? What did I do to make my baby sick? Why? Why? Why?
Fast forward to the night od December 26, 2007. My contractions began around 9pm. And right away, they were only 5 minutes apart. And yet I found time to get a quick shower while Ronnie packed some bags for the hospital. I called my mom and she drove over to stay with our son Nickolas. Off we were to West Penn Hospital in Pittsburgh, Pa. The ride to the hospital was the worst ride in a car I have EVER experienced. What should have taken us about an hour drive, only took Ronnie 20 minutes. We arrived at the hospital and I didnt even have the strength to get out of the van. Thank goodness for the security guard standing outside. He helped me out and into a wheelchair. Can you believe they made me sit in the waiting room for about an half hour before taking me to a room? Asking me questions about this and that. Im in LABOR people! Well, we finally get to a room which looked like the size of a linen closet. I had to go to the bathroom right away. I threw up everywhere because the pain was so intense. Contractions suck!
I layed in my bed for another 5 hours. They tried giving me medicine to slow down the contractions but it didnt work of course. That would be way too easy. My cervix wouldnt dialate so they decided to do a repeat C-Section. I'm on my way to the surgery room and I remember thinking about my tiny unborn baby. Will he be alright? Will he live with all of the problems we were told he was going to have? The anastesiologist comes in and gave me an epidoral. OMG, the worst pain I have EVER been through, besides the contractions. I layed down in my bed and they began to cut me at 2:30am. At 2:44am on December 27, 2007, Jesse Michael was born. I heard his loud cry but did not get to see him at first. the put him into an incubator then wheeled him over so I could get a "quick peek" at my son. I held his tiny hand as they begun wheeling him away from me and down the hall to Neonatal Intensive Care Unit. I couldnt stop crying. All I wanted to do was hold my son. I was taken back to my room where I layed for another 7 hours before the would allow me to see my baby. I wasnt allowed out of bed yet because the epidoral didnt fully ware off yet, so the took my entire bed into the NICU. There he was! a gorgeous baby boy, lying there so still with tubes and wires everywhere. I broke down. It is really tough seeing your child laying there with all of this stuff hooked up to him and you cant even hold him. I spent as much time with him as I could because the next day, he was being taken to Children's Hospital of Pittsburgh.
The next day, Jesse was taken to CHP and I first learned that he had a heart condition called Tetrology of Fallot. This meant that Jesse had multiple things wrong with his heart. He had a big hole in one of the lower chambers of his heart, he had a faulty valve that needed to be repaired, and his Pulminary Artery would need worked on to allow for better air flow to his heart and lungs.
On December 28, Jesse had a Heart Catherization done. The doctors then placed a Stint into his Pulminary Artery. I had to spend the next 2 days in the hospital to recovery from the c-section. Ronnie and my Aunt went to CHP to be with Jesse as he went through the heart cath. They took pictures for me so I could see my beautiful son. After I was discharged, we went straight to CHP so I could be with my son. Again, all the tubes and wires hooked to this tiny baby scared the crap out of me. It was then I was allowed to hold my baby for the first time. He was already 3 days old and looked so different. He looked so peaceful laying there, still it was hard for me to see him like this. I held him in my arms and cryed my eyes out. We werent allowed to hold him very long so I took advantage of every second I got with him.
Ronnie and I lived at the hospital with Jesse for 2 weeks. During these 2 weeks, we learned that Jesse also had Hypoplastic/Dysplastic kidneys. His right kidey had absolutely no function and was covered in cycts. His left kidney did work but did not function 100%. Yet again, my heart was torn from my chest. How am I supposed to take care of a sick child? I have no experience what so ever in doing this. Im glad we did spend so much time in the hospital with Jesse. We learned how to deal with his illnesses. But at the same time I felt so alone. Ronnie had to return home and go to work and take care of our other son. This meant I had to stay in this huge hospital by myself. I was so scared and lonely. Nobody to talk to, nobody to hold me as I cried every day. I just wanted my baby boy to come home. I slept on hard wooden chairs in waiting rooms and ate only once a day. But the only thing that kept me going was the incredible, brave, strong little boy that depended on me.
On January 6, 2008, we got to take Jesse home for the first time. He had to be sent home with a Pulse Ox so we could monitor his heart rate and oxygen intake at home. He also had to be sent home with a feeding tube becase he wasnt eating enough by mouth. The doctors and nurses were wonderful in training me so I could change all of his tubes at home. Jesse was also required to be on 7 different medicines for his heart and kidneys. Do you know how tough that is? To give a newborn baby 7 medicines every day? some were given up to 4 times a day. We had to get on a schedule quickly.
Im going to get off track for a second. you will understand why in a minute.
As I was in the hospital trying to bring Jesse into this world, my grandfather was sruggling to get out. He was diagnosed with cancer a few months prior. He only got to see his great grandson in pictures on a cell phone. When Jesse was released from CHP, my grandpa was in the hospital dying. The day after we came home with Jesse, I took both of my boys to the hospital to see their Great Grandpa. I think he knew we were there in some kind of way. I needed to do this. I held Jesse right against my grandpas face and said, 'meet your new great grandson". I cried so hard to see Grandpa like this. He passed away 2 days later asking for me. My mom told me he was asking for his 'Ton Ton". I was the oldest grand child and my grandpas little girl. Now my boys will never get to know him, only threw stories I tell them and pictures I show them. While we were at the funeral, I felt this feeling of ease come over me. I just knew at that moment that my sick little boy now had his guardian angel up there looking down on him.
Getting back on track now......
Jesse was only home with us for 12 days when we took him to our local emergency room because he started turning blue. Children with Tetrology of Fallot will go through TET spells. This is when there is not enough oxygen getting to the childs hearts and his/her legs, arms, face and/or body will turn blue. We arrived at the ER and about 2 hours later he was air-lifted back to CHP. Dont EVER take a child to Latrobe ER. They poked my son 12 times to try to get an IV into him. There was blood all over him and the bed he was laying on. I almost passed out in the corner, crying and screaming at them. When the life flight crew arrived at Latrobe, a Cardiologist was with them from Childrens hospital. He was the one that got an IV into Jesse on his first try. Thank God! Then away he went to CHP again and we went home to pack a few bags and rushed to CHP ourselves.
Yes, Nickolas, our other son, who was only 20 months old at the time, was taken care of. My mom and Ronnies mom took turns keeping an eye on him for us while we were going through all of this.
We got to CHP about 1 1/2 hrs later and Jesse, was yet again, hooked up to monitors, wires and tubes. After several doctors looking at him and running even more tests, Jesse's first heart surgery was scheduled. On January 25, 2008, Jesse had his heart opened up and a Shunt was placed. Dr. Peter Weardon and team are the greatest Cardio team on earth. My sons life was literally in his hands. We stayed in the hospital for another 13 days. Jesse was finally released to go home on Feb 6. Jesse did wonderful for months. Monthly EKG's and Echos were done along with monthly kidney Ultrasounds. On August 22, 2008, Jesse had his 2nd open heart surgery. During this surgery, he had a complete repair. Dr. Weardon and team again performed the procedure where they closed the Shunt a little, reapired the hole and fixed a valve. We went througha lot of ups and downs during this hospital stay. Living in a hospital is a hard thing to do. You get barely any sleep and rarely eat because your nerves are shot. But on Aug 30, he was discharged to go home.
Jesse has been doing wonderful since his surgeries. His cardiologist told us that he may need another surgery when he gets older. It all depends how his heart grows with him. We pray every day that he is free and clear of anymore surgeries on his tiny heart.
Jesse has been in and out of the hospital so many times I lost count. When he gets sick, he really gets sick. His kidneys dont know how to keep producing fluids like ours do when we get sick. So therefore, he gets dehydrated very easily. Then there was this time he got sick and was taken to Greensburg Hospital. a nurse drew his blood for some labs and the results came back that he had an infection growing in his blood. so here we go again, back to CHP we go. CHP did some more tests and drew more blood. After wating 2 days for the blood samples to do whatever they had to do in the petri dishes, it came back that there was a trace of Strep in his blood culture from Greensburg hospital. Here the nurse that drew his blood at Greensburg was sick with Strep, infected the blood sample. So there was nothing wrong with Jesse after all, this time.
Fast forward to today, May 15, 2010. Jesse was just released from CHP yet again just yesterday. He spent 4 days in the hospital this time. Now we are dealing with his kidney issues. He had an ultrasound done and his right kidney, the one that doesnt work, had a few more cysts get larger. So we are waiting to see his Nephralogist (kidney doctor) next week to see what the chances are of him having surgery to have the kidney, cyst, or both removed.
I will update very soon on Jesse's condition. In the meantime, please go to www.mendedlittleheartsofswpa.com and check out this wonderful support group. I wish I knew about MLH when Jesse was having his heart surgeries. I really could have used some support and a shoulder to cry on.
Fast forward to the night od December 26, 2007. My contractions began around 9pm. And right away, they were only 5 minutes apart. And yet I found time to get a quick shower while Ronnie packed some bags for the hospital. I called my mom and she drove over to stay with our son Nickolas. Off we were to West Penn Hospital in Pittsburgh, Pa. The ride to the hospital was the worst ride in a car I have EVER experienced. What should have taken us about an hour drive, only took Ronnie 20 minutes. We arrived at the hospital and I didnt even have the strength to get out of the van. Thank goodness for the security guard standing outside. He helped me out and into a wheelchair. Can you believe they made me sit in the waiting room for about an half hour before taking me to a room? Asking me questions about this and that. Im in LABOR people! Well, we finally get to a room which looked like the size of a linen closet. I had to go to the bathroom right away. I threw up everywhere because the pain was so intense. Contractions suck!
I layed in my bed for another 5 hours. They tried giving me medicine to slow down the contractions but it didnt work of course. That would be way too easy. My cervix wouldnt dialate so they decided to do a repeat C-Section. I'm on my way to the surgery room and I remember thinking about my tiny unborn baby. Will he be alright? Will he live with all of the problems we were told he was going to have? The anastesiologist comes in and gave me an epidoral. OMG, the worst pain I have EVER been through, besides the contractions. I layed down in my bed and they began to cut me at 2:30am. At 2:44am on December 27, 2007, Jesse Michael was born. I heard his loud cry but did not get to see him at first. the put him into an incubator then wheeled him over so I could get a "quick peek" at my son. I held his tiny hand as they begun wheeling him away from me and down the hall to Neonatal Intensive Care Unit. I couldnt stop crying. All I wanted to do was hold my son. I was taken back to my room where I layed for another 7 hours before the would allow me to see my baby. I wasnt allowed out of bed yet because the epidoral didnt fully ware off yet, so the took my entire bed into the NICU. There he was! a gorgeous baby boy, lying there so still with tubes and wires everywhere. I broke down. It is really tough seeing your child laying there with all of this stuff hooked up to him and you cant even hold him. I spent as much time with him as I could because the next day, he was being taken to Children's Hospital of Pittsburgh.
The next day, Jesse was taken to CHP and I first learned that he had a heart condition called Tetrology of Fallot. This meant that Jesse had multiple things wrong with his heart. He had a big hole in one of the lower chambers of his heart, he had a faulty valve that needed to be repaired, and his Pulminary Artery would need worked on to allow for better air flow to his heart and lungs.
On December 28, Jesse had a Heart Catherization done. The doctors then placed a Stint into his Pulminary Artery. I had to spend the next 2 days in the hospital to recovery from the c-section. Ronnie and my Aunt went to CHP to be with Jesse as he went through the heart cath. They took pictures for me so I could see my beautiful son. After I was discharged, we went straight to CHP so I could be with my son. Again, all the tubes and wires hooked to this tiny baby scared the crap out of me. It was then I was allowed to hold my baby for the first time. He was already 3 days old and looked so different. He looked so peaceful laying there, still it was hard for me to see him like this. I held him in my arms and cryed my eyes out. We werent allowed to hold him very long so I took advantage of every second I got with him.
Ronnie and I lived at the hospital with Jesse for 2 weeks. During these 2 weeks, we learned that Jesse also had Hypoplastic/Dysplastic kidneys. His right kidey had absolutely no function and was covered in cycts. His left kidney did work but did not function 100%. Yet again, my heart was torn from my chest. How am I supposed to take care of a sick child? I have no experience what so ever in doing this. Im glad we did spend so much time in the hospital with Jesse. We learned how to deal with his illnesses. But at the same time I felt so alone. Ronnie had to return home and go to work and take care of our other son. This meant I had to stay in this huge hospital by myself. I was so scared and lonely. Nobody to talk to, nobody to hold me as I cried every day. I just wanted my baby boy to come home. I slept on hard wooden chairs in waiting rooms and ate only once a day. But the only thing that kept me going was the incredible, brave, strong little boy that depended on me.
On January 6, 2008, we got to take Jesse home for the first time. He had to be sent home with a Pulse Ox so we could monitor his heart rate and oxygen intake at home. He also had to be sent home with a feeding tube becase he wasnt eating enough by mouth. The doctors and nurses were wonderful in training me so I could change all of his tubes at home. Jesse was also required to be on 7 different medicines for his heart and kidneys. Do you know how tough that is? To give a newborn baby 7 medicines every day? some were given up to 4 times a day. We had to get on a schedule quickly.
Im going to get off track for a second. you will understand why in a minute.
As I was in the hospital trying to bring Jesse into this world, my grandfather was sruggling to get out. He was diagnosed with cancer a few months prior. He only got to see his great grandson in pictures on a cell phone. When Jesse was released from CHP, my grandpa was in the hospital dying. The day after we came home with Jesse, I took both of my boys to the hospital to see their Great Grandpa. I think he knew we were there in some kind of way. I needed to do this. I held Jesse right against my grandpas face and said, 'meet your new great grandson". I cried so hard to see Grandpa like this. He passed away 2 days later asking for me. My mom told me he was asking for his 'Ton Ton". I was the oldest grand child and my grandpas little girl. Now my boys will never get to know him, only threw stories I tell them and pictures I show them. While we were at the funeral, I felt this feeling of ease come over me. I just knew at that moment that my sick little boy now had his guardian angel up there looking down on him.
Getting back on track now......
Jesse was only home with us for 12 days when we took him to our local emergency room because he started turning blue. Children with Tetrology of Fallot will go through TET spells. This is when there is not enough oxygen getting to the childs hearts and his/her legs, arms, face and/or body will turn blue. We arrived at the ER and about 2 hours later he was air-lifted back to CHP. Dont EVER take a child to Latrobe ER. They poked my son 12 times to try to get an IV into him. There was blood all over him and the bed he was laying on. I almost passed out in the corner, crying and screaming at them. When the life flight crew arrived at Latrobe, a Cardiologist was with them from Childrens hospital. He was the one that got an IV into Jesse on his first try. Thank God! Then away he went to CHP again and we went home to pack a few bags and rushed to CHP ourselves.
Yes, Nickolas, our other son, who was only 20 months old at the time, was taken care of. My mom and Ronnies mom took turns keeping an eye on him for us while we were going through all of this.
We got to CHP about 1 1/2 hrs later and Jesse, was yet again, hooked up to monitors, wires and tubes. After several doctors looking at him and running even more tests, Jesse's first heart surgery was scheduled. On January 25, 2008, Jesse had his heart opened up and a Shunt was placed. Dr. Peter Weardon and team are the greatest Cardio team on earth. My sons life was literally in his hands. We stayed in the hospital for another 13 days. Jesse was finally released to go home on Feb 6. Jesse did wonderful for months. Monthly EKG's and Echos were done along with monthly kidney Ultrasounds. On August 22, 2008, Jesse had his 2nd open heart surgery. During this surgery, he had a complete repair. Dr. Weardon and team again performed the procedure where they closed the Shunt a little, reapired the hole and fixed a valve. We went througha lot of ups and downs during this hospital stay. Living in a hospital is a hard thing to do. You get barely any sleep and rarely eat because your nerves are shot. But on Aug 30, he was discharged to go home.
Jesse has been doing wonderful since his surgeries. His cardiologist told us that he may need another surgery when he gets older. It all depends how his heart grows with him. We pray every day that he is free and clear of anymore surgeries on his tiny heart.
Jesse has been in and out of the hospital so many times I lost count. When he gets sick, he really gets sick. His kidneys dont know how to keep producing fluids like ours do when we get sick. So therefore, he gets dehydrated very easily. Then there was this time he got sick and was taken to Greensburg Hospital. a nurse drew his blood for some labs and the results came back that he had an infection growing in his blood. so here we go again, back to CHP we go. CHP did some more tests and drew more blood. After wating 2 days for the blood samples to do whatever they had to do in the petri dishes, it came back that there was a trace of Strep in his blood culture from Greensburg hospital. Here the nurse that drew his blood at Greensburg was sick with Strep, infected the blood sample. So there was nothing wrong with Jesse after all, this time.
Fast forward to today, May 15, 2010. Jesse was just released from CHP yet again just yesterday. He spent 4 days in the hospital this time. Now we are dealing with his kidney issues. He had an ultrasound done and his right kidney, the one that doesnt work, had a few more cysts get larger. So we are waiting to see his Nephralogist (kidney doctor) next week to see what the chances are of him having surgery to have the kidney, cyst, or both removed.
I will update very soon on Jesse's condition. In the meantime, please go to www.mendedlittleheartsofswpa.com and check out this wonderful support group. I wish I knew about MLH when Jesse was having his heart surgeries. I really could have used some support and a shoulder to cry on.
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