Bryce is almost done with school and he will officially be a 1st grader. It will be nice to have him more this summer since he won't be in school. It is good for him and Grayson to have some more time together.
Monday, June 17, 2013
Big Boy is 2 months
Bryce is almost done with school and he will officially be a 1st grader. It will be nice to have him more this summer since he won't be in school. It is good for him and Grayson to have some more time together.
Tuesday, June 11, 2013
2 month check up
Jackson had his 2 month check up today. He is up 2lbs and 2.5 inches since birth. He has great head control and eye contact. They have reduced his visits from the visiting nurse to 1 time a week and we now only have to got to the pediatrician once a month :) She said that she is very happy with how far he has come. I am so happy that each time we go to the doctors we are getting lots of good news and positive feed back on him and that he seems to be progressing the way he should for his age. Also he smiled at me for the first time today which was very reassuring since I was a little concerned because he hadn't yet but once again he is showing me that he is going to take his time but prove everyone wrong. He is his own person and he is going to show us all that he can do anything he wants to and this genetic condition is not going to hold him back from what he wants to do. Tonight will involve lots of snuggling him since he is very sore from his 3 shots. Hopefully he sleeps as well as he did last night. He went to bed at 8:30pm and didn't get up until 4 and then slept til 7.
Tonight I am making the transition of getting Grayson back to his own bed since he is no longer up every 3 hours for medicine and has pretty much completely recovered from his surgery. I am going to miss having a snuggle buddy all night :(
Tonight I am making the transition of getting Grayson back to his own bed since he is no longer up every 3 hours for medicine and has pretty much completely recovered from his surgery. I am going to miss having a snuggle buddy all night :(
Saturday, June 8, 2013
Weight Check
Jackson Update:
Thursday Jackson had his bi-weekly weight check and he gained a whole onces. He is now up to the big 8lbs 2 oz. I am hoping that id he gains more by wednesday that they won't make us have weight checks twice a week. He has been constantly gaining since he left the hospital and they are now lowering there expectations on how much he is going to gains since he is going to be smaller then and average child.
I tried having a mini photo shoot with Jackson. He is so not a fan. How come all of my kids hate having their pictures taken :(
Grayson Update:
He seems to be almost recovered he is eating like a pig which is not like him. He has never been a big eater since he gagged on everything he would try to eat. I am so happy that the surgery seems to be helping there but he was still up alot last night which I am hoping changes when all the swelling is gone.
Thursday Jackson had his bi-weekly weight check and he gained a whole onces. He is now up to the big 8lbs 2 oz. I am hoping that id he gains more by wednesday that they won't make us have weight checks twice a week. He has been constantly gaining since he left the hospital and they are now lowering there expectations on how much he is going to gains since he is going to be smaller then and average child.
I tried having a mini photo shoot with Jackson. He is so not a fan. How come all of my kids hate having their pictures taken :(
Grayson Update:
He seems to be almost recovered he is eating like a pig which is not like him. He has never been a big eater since he gagged on everything he would try to eat. I am so happy that the surgery seems to be helping there but he was still up alot last night which I am hoping changes when all the swelling is gone.
Thursday, June 6, 2013
Brotherly love
It is so awesome to see the connection between Grayson and Jackson. I was not sure how Grayson would handle having to share his mommy but he is adapting rather well. We had a little bit of a set back a few weeks ago when Grayson had his tonsils and adenoids out. What a traumatic event for my little man but he was so brave and did an awesome job. Before he had them out we talked about it a lot and he said over and over again that it was not going to happen.
The morning of the surgery he was quiet the whole ride to Mercy. When we got there he was still saying that they were not taking them out. After we got to the waiting area he started to come around a little bit while he was watching tv and finally let me put on his "Jammies" but he wanted me to lay in the bed with him and hold him. Thank god my mother came with me so she could take care of Jackson. I felt so bad for Grayson because I knew that he was scared but I was also very nervous about him having to be put under at such a young age.
One of the doctors came in and explained to him that while he was in the other room he would have to try and blow up a green balloon while blowing in the mask. When he heard Green balloon he was so excited. Then they gave him the relaxation medicine. At first he was very funny because he started saying random stuff and laughing and pointing at the ceiling. Then it started getting creepy because his eyes would sort of roll and he would be very still.
It was time so they were getting him ready to wheel down to the operating room while I was putting my suit on so I could go in with him while he was put out. He wanted me to ride with him in the bed so I did :) As we got into the room they put him on the operating bed as I stood there holding his hand and then they had him start blowing up the balloon. As he is blowing he keeps asking if it was getting bigger. The doctor then explained to me that it would look like he was fighting it. That wasn't enough of an explanation to get me ready to watching him start squirming and being held down as I stood there not being able to do anything. Then I was told I had to leave and I could give him a kiss.
The next 45 minutes seemed like hours. Dr Hearst came in and told me that he did well and that he was in the recovery room until he woke up and then he would be brought out to me. Within 15 mins they were wheeling him in and he was an emotional mess. I know that they have to make sure he is ok before they will let me see him but I can only imagine what he was thinking when he came to and I wasn't there and he was in pain looking at a bunch of faces he didn't know. I just held him as he cried and threw up. What an awful feeling to not be able to do anything to make him feel better.
Well it has been 2 weeks since then and he has recovered nicely. He is back to his very energetic self. Back to loving on his brother non -stop. So needless to say I have not had to worry about him adjusting to having his little brother around. After a month of going back and forth to the hospital he is just as happy as I am to have him home.
The morning of the surgery he was quiet the whole ride to Mercy. When we got there he was still saying that they were not taking them out. After we got to the waiting area he started to come around a little bit while he was watching tv and finally let me put on his "Jammies" but he wanted me to lay in the bed with him and hold him. Thank god my mother came with me so she could take care of Jackson. I felt so bad for Grayson because I knew that he was scared but I was also very nervous about him having to be put under at such a young age.
One of the doctors came in and explained to him that while he was in the other room he would have to try and blow up a green balloon while blowing in the mask. When he heard Green balloon he was so excited. Then they gave him the relaxation medicine. At first he was very funny because he started saying random stuff and laughing and pointing at the ceiling. Then it started getting creepy because his eyes would sort of roll and he would be very still.
It was time so they were getting him ready to wheel down to the operating room while I was putting my suit on so I could go in with him while he was put out. He wanted me to ride with him in the bed so I did :) As we got into the room they put him on the operating bed as I stood there holding his hand and then they had him start blowing up the balloon. As he is blowing he keeps asking if it was getting bigger. The doctor then explained to me that it would look like he was fighting it. That wasn't enough of an explanation to get me ready to watching him start squirming and being held down as I stood there not being able to do anything. Then I was told I had to leave and I could give him a kiss.
The next 45 minutes seemed like hours. Dr Hearst came in and told me that he did well and that he was in the recovery room until he woke up and then he would be brought out to me. Within 15 mins they were wheeling him in and he was an emotional mess. I know that they have to make sure he is ok before they will let me see him but I can only imagine what he was thinking when he came to and I wasn't there and he was in pain looking at a bunch of faces he didn't know. I just held him as he cried and threw up. What an awful feeling to not be able to do anything to make him feel better.
Well it has been 2 weeks since then and he has recovered nicely. He is back to his very energetic self. Back to loving on his brother non -stop. So needless to say I have not had to worry about him adjusting to having his little brother around. After a month of going back and forth to the hospital he is just as happy as I am to have him home.
Wednesday, June 5, 2013
After a night of barely any sleep Dr Danby had decided to release me from the hospital early because they still had no room for me at Maine Med. Which I was very grateful that I was able to have a successful V-Bac or I would still have had to remain at the hospital for a few more days.
Still with alot of unanswered questions Corey, Grayson and I headed to see Jackson. The only thing we knew for sure was that he was indeed a boy. The reason for them being unsure of his gender was because he has a buried penis. That news was a huge relief. It was hard not to think of the many months that I was convinced that he was a girl and to think that this was some how my fault but also explains why during the last ultra sound I did not see a penis. Then I was mad at the doctors for not letting me have another ultra sound because if they did maybe we would have seen the things about him that they were questioning and we would have been more prepared.
We arrived to see Jackson in a closed bassinet with a bunch of wires coming from him and a breathing tube. We were given very little information due to them being unsure of what was going on with him and still running a bunch of tests. They had ruled out downs but due to all the swelling they still felt that he had some sort of syndrome. They had called in a genetics specialist to try and get more answers but they said the tests could take up to two weeks. They did an echo gram and found that there was alot of pressure around his heart and lungs which was causing the rapid breathing and high heart rate. They also found that he has a hole between the top chambers of his heart and a smaller hole in between the bottom two chambers. Also his feet where turned in sort of like clubbed feet so they wanted an orthopedic to check him out. They though during an x ray that they found a small mass in his abdomen and they also thought that his long bones where shorter then normal. They wanted to follow up with an ultra sound and more x rays. It was awful hearing all these things that could be wrong with him and not being to hold him and sooth him besides putting your hands in the little opening in his bed.
During the next couple of days he was getting stronger and they took up the breathing tube and he was given just a little bit of oxygen. I was able to finally hold him after a little over 52 hours which were the longest 52 hours of my life. They were still doing lots of blood work and everything was coming back fine. The extra oxygen was relieving the pressures around his heart and lungs. Due to him still having points where he would breath really fast they decided that it would not be a good idea to try and feed him by breast or bottle so they inserted a feeding tube. His swelling was going down slowly but each day he started looking better.
Eventually he was strong enough to have the cover removed from his bassinet and the orthopedic came and said that his feet should be fine with just a little bit of stretching because they are not true club feet. We also found out that there was no mass in his stomach and that his long bones where fine. Within no time he was transferred to a regular crib but was still having rapid breathing so he was still being fed by the tube. The pressure around his heart and lungs were better so they decided to stop the extra oxygen April 22 which meant that if he did well then I would be able to try bottle feeding him the following day. His was not able to take all of his food with the bottle so they continued giving him the rest in the feeding tube. Since that was his only issue they decided he was well enough to go to continuing care.
He was moved to Continuing Care on April 25. The next day I was able to give him his first bath!!! Finally thing we starting to progress. I got a call from the Genetic Specialist and the results were in and she wanted to meet with me. All I could think was there must be something wrong or she wouldn't want to meet with me. I am thankful that my grandparents were there with me that day so I wouldn't have to get the news alone. The genetic specialist started talking about different chromosomes and what was normally and then she began to explain what they had found out about Jackson. The found out that he was missing part of his 15 chromosome and has an extra part of the 4. What does that mean? Honestly they are not completely sure because he is missing a smaller part then what is normally missing with the 15q Deletion and has an extra part of the 4 which is also smaller then normal. I was given pictures to show what his chromosomes look like compare to a normal set that everyone else has. We were informed that either Corey and I could be a carrier so we should get tested because it could show up again when the boys have kids or it could just be something that just happened without any reason. She explained that this would cause Jackson to be smaller and to possibly have a problem with learning different things. It also explains the buried penis, the heart defects and the feet and smaller fingers. I was given information on both Chromosome defects to look over.
After getting home and settling in I got a call that Jackson had an episode and was back in the NICU. He was having his diaper changed and got really mad and stopped breathing and had to be bagged. What a terrible day finding out that my poor little boy may have all these complications as he grows and then hear that he had a rough night and I was not there with him. It made me mad to think that I had done everything right while I was pregnant. No drinking, no smoking and no doing drugs. Eating what I should, taking my vitamins and having my regular check ups and my poor little man was still suffering and the people that do everything wrong and they have a perfectly healthy kids how is that fair. That night couldn't get over fast enough so that I could be back there with my little man.
I showed up the next morning and they said that he was doing so much better but they wanted to keep him there an extra day so that they could monitor him closer. I was so happy to see him. The next day they moved him back to continuing care were we worked to get him to eat all he could by bottle. It was so frustrating because the kept saying he wasn't gaining enough weight so they kept increasing his food amount. I didn't think we would ever get him home. During my time at home I began reading the information that was given to me by the genetic specialist and it just made things worse. Parents had written stuff about there children still having feeding tubes at 7 and not being able to walk at the age of 4 and they had a picture of a brother and sister standing together and the sister that was 4 was about a foot shorter then her brother that was 2. It killed me reading that stuff not because I was upset by what I would possibly have to deal with but of what he will have to go through as a child. Growing up is hard enough but to grow up and being different was something that I was not prepared to hear my child would have to deal with but he is proving to me that he is strong and will continue to amaze me and everyone else as he grows.
After lots of talk with his doctors they had agreed to let him come home but he had to continue with his feeding tube. They set me up with a monitor and feeding pump and showed me how to use everything. A day before he turned a month old they were letting him come home finally. In came all the specialists to check him out one last time and lots of follow up appointments had be scheduled. It was decided that he will need to be circumcised at a year old to help with his buried penis because they think that it is being forced down by the tight foreskin. He will need to follow up with a hearing specialist because he refereed on his left ear, follow up with the cardiologist, and monitoring as he grows from the genetics specialist.
That day he took his whole feeding twice before we left and has continued to do so since we left which is one less thing to worry about and I finally have all my boys under the same roof after almost a month. After a day of him being home he was eating like a champ and at a month old rolled over so much for having delayed learning. He is amazing me more and more every day.
His first follow up with the cardiologist is showing improvement and she feels that nothing should effect him as he grows but would like to follow up in 3 months. He is gaining weight like a champ he is now 8lbs and 1oz!!!! He will continue to have his weight checked 2 times a week with a visiting nurse and every 2 weeks with his doctor but my little man is showing me what an awesome and amazing little man that he is. I was not going to share the details about him because I didn't want anyone putting a label on him but I decided that I would share to show everyone how amazing and what a fighter he is.
Still with alot of unanswered questions Corey, Grayson and I headed to see Jackson. The only thing we knew for sure was that he was indeed a boy. The reason for them being unsure of his gender was because he has a buried penis. That news was a huge relief. It was hard not to think of the many months that I was convinced that he was a girl and to think that this was some how my fault but also explains why during the last ultra sound I did not see a penis. Then I was mad at the doctors for not letting me have another ultra sound because if they did maybe we would have seen the things about him that they were questioning and we would have been more prepared.
We arrived to see Jackson in a closed bassinet with a bunch of wires coming from him and a breathing tube. We were given very little information due to them being unsure of what was going on with him and still running a bunch of tests. They had ruled out downs but due to all the swelling they still felt that he had some sort of syndrome. They had called in a genetics specialist to try and get more answers but they said the tests could take up to two weeks. They did an echo gram and found that there was alot of pressure around his heart and lungs which was causing the rapid breathing and high heart rate. They also found that he has a hole between the top chambers of his heart and a smaller hole in between the bottom two chambers. Also his feet where turned in sort of like clubbed feet so they wanted an orthopedic to check him out. They though during an x ray that they found a small mass in his abdomen and they also thought that his long bones where shorter then normal. They wanted to follow up with an ultra sound and more x rays. It was awful hearing all these things that could be wrong with him and not being to hold him and sooth him besides putting your hands in the little opening in his bed.
During the next couple of days he was getting stronger and they took up the breathing tube and he was given just a little bit of oxygen. I was able to finally hold him after a little over 52 hours which were the longest 52 hours of my life. They were still doing lots of blood work and everything was coming back fine. The extra oxygen was relieving the pressures around his heart and lungs. Due to him still having points where he would breath really fast they decided that it would not be a good idea to try and feed him by breast or bottle so they inserted a feeding tube. His swelling was going down slowly but each day he started looking better.
He was moved to Continuing Care on April 25. The next day I was able to give him his first bath!!! Finally thing we starting to progress. I got a call from the Genetic Specialist and the results were in and she wanted to meet with me. All I could think was there must be something wrong or she wouldn't want to meet with me. I am thankful that my grandparents were there with me that day so I wouldn't have to get the news alone. The genetic specialist started talking about different chromosomes and what was normally and then she began to explain what they had found out about Jackson. The found out that he was missing part of his 15 chromosome and has an extra part of the 4. What does that mean? Honestly they are not completely sure because he is missing a smaller part then what is normally missing with the 15q Deletion and has an extra part of the 4 which is also smaller then normal. I was given pictures to show what his chromosomes look like compare to a normal set that everyone else has. We were informed that either Corey and I could be a carrier so we should get tested because it could show up again when the boys have kids or it could just be something that just happened without any reason. She explained that this would cause Jackson to be smaller and to possibly have a problem with learning different things. It also explains the buried penis, the heart defects and the feet and smaller fingers. I was given information on both Chromosome defects to look over.
After getting home and settling in I got a call that Jackson had an episode and was back in the NICU. He was having his diaper changed and got really mad and stopped breathing and had to be bagged. What a terrible day finding out that my poor little boy may have all these complications as he grows and then hear that he had a rough night and I was not there with him. It made me mad to think that I had done everything right while I was pregnant. No drinking, no smoking and no doing drugs. Eating what I should, taking my vitamins and having my regular check ups and my poor little man was still suffering and the people that do everything wrong and they have a perfectly healthy kids how is that fair. That night couldn't get over fast enough so that I could be back there with my little man.
I showed up the next morning and they said that he was doing so much better but they wanted to keep him there an extra day so that they could monitor him closer. I was so happy to see him. The next day they moved him back to continuing care were we worked to get him to eat all he could by bottle. It was so frustrating because the kept saying he wasn't gaining enough weight so they kept increasing his food amount. I didn't think we would ever get him home. During my time at home I began reading the information that was given to me by the genetic specialist and it just made things worse. Parents had written stuff about there children still having feeding tubes at 7 and not being able to walk at the age of 4 and they had a picture of a brother and sister standing together and the sister that was 4 was about a foot shorter then her brother that was 2. It killed me reading that stuff not because I was upset by what I would possibly have to deal with but of what he will have to go through as a child. Growing up is hard enough but to grow up and being different was something that I was not prepared to hear my child would have to deal with but he is proving to me that he is strong and will continue to amaze me and everyone else as he grows.
After lots of talk with his doctors they had agreed to let him come home but he had to continue with his feeding tube. They set me up with a monitor and feeding pump and showed me how to use everything. A day before he turned a month old they were letting him come home finally. In came all the specialists to check him out one last time and lots of follow up appointments had be scheduled. It was decided that he will need to be circumcised at a year old to help with his buried penis because they think that it is being forced down by the tight foreskin. He will need to follow up with a hearing specialist because he refereed on his left ear, follow up with the cardiologist, and monitoring as he grows from the genetics specialist.
That day he took his whole feeding twice before we left and has continued to do so since we left which is one less thing to worry about and I finally have all my boys under the same roof after almost a month. After a day of him being home he was eating like a champ and at a month old rolled over so much for having delayed learning. He is amazing me more and more every day.
His first follow up with the cardiologist is showing improvement and she feels that nothing should effect him as he grows but would like to follow up in 3 months. He is gaining weight like a champ he is now 8lbs and 1oz!!!! He will continue to have his weight checked 2 times a week with a visiting nurse and every 2 weeks with his doctor but my little man is showing me what an awesome and amazing little man that he is. I was not going to share the details about him because I didn't want anyone putting a label on him but I decided that I would share to show everyone how amazing and what a fighter he is.
Tuesday, June 4, 2013
Since everyone keeps asking for updates on Jackson and the rest of the family I've decided that I would create a blog focusing on just that...
First of all for those of you that don't know Jackson made a very dramatic entrance to this world on April 16, 2013 at 11:08 am. Weighing in at 6lbs 6oz and 17 inches long. Since that day life has been crazy busy but I would not change it for the world. I had decided that I was not going to share the details of what we are learning about him but then I thought and I don't want him to ever think that I am embarrassed or disappointed by him in any way. He is an amazing little man and I am so proud to be his mother. I will start by sharing info about his entrance into this world.
My pregnancy and labor was really normal. My water broke at 9:30 pm on April 15, 2013 at home so we loaded the boys into the car and we were off to the hospital. Instantly my contractions were 3-5 minutes apart which made the 45 minute trip to SMMC seem like a life time. Shortly after we arrived at the hospital my mother and sister showed up. My plan was to have my baby naturally but my body had another idea. Pretty much as soon as they had me all hooked up to the monitors and everything my contractions were full strength and one right on top of eachother. I asked for something to take the edge off which pretty much just knocked me out until I would have a contraction and then I would wake up in pain. After about 5 hours I had had enough and asked for the epidural. Which I did not want because all I heard was that you couldn't move your own legs or feel anything and after have a c-section and not being able to feel anything from the waist down that was not something I was looking forward to go through again. I did not experience that sensation at all. I was still able to feel and move my legs it just really dulled the contractions which gave me a little bit of time to rest. My mother and sister left around 7:30am and by 8:30am I was fully dialeted and ready to push. In the mean time my sister had some back and my bestfriend had shown up. With my sister on one leg and my bestfriend watching and Corey taking pictures I pushed for 2.5 hours since my contractions had slowed down to 5 to 7 minutes apart. Thank goodness for nurse Nancy she was amazing!!!! Finally all the pushing was worth it and my little man was brought into the world.
Little did I know but that brought on a whole bunch of unanswered questions and worries. Dr Danby put him on my chest and Corey cut the cord and then with still no sound coming from my little man he was brought over to the baby station and the room instantly filled with people. After a few minutes we could hear a little bit of noise coming from Jackson but we still had no answers. They brought him over so that we could kiss him and then he was gone. After a little we heard that he was having some issues with his breathing and then we were overloaded with a million possibilities of what could be wrong with him. We heard everything from he may have downs to them not know what his gender was. What was suppose to be one of the best days of my life had turned into the worst. Still with no answers they decided that it would be best to have Jackson transfered to Maine Med. During the process of getting him ready to be transported he had stopped breathing so they ended up having to insert a breathing tube. So after a quick visit with him but still unable to hold himn he was brought to Maine Med while I had to remain ay SMMC due to them having no room for me at Maine Medical Center. So with no answers and no child I was left to get some rest.
to be continued...
First of all for those of you that don't know Jackson made a very dramatic entrance to this world on April 16, 2013 at 11:08 am. Weighing in at 6lbs 6oz and 17 inches long. Since that day life has been crazy busy but I would not change it for the world. I had decided that I was not going to share the details of what we are learning about him but then I thought and I don't want him to ever think that I am embarrassed or disappointed by him in any way. He is an amazing little man and I am so proud to be his mother. I will start by sharing info about his entrance into this world.
My pregnancy and labor was really normal. My water broke at 9:30 pm on April 15, 2013 at home so we loaded the boys into the car and we were off to the hospital. Instantly my contractions were 3-5 minutes apart which made the 45 minute trip to SMMC seem like a life time. Shortly after we arrived at the hospital my mother and sister showed up. My plan was to have my baby naturally but my body had another idea. Pretty much as soon as they had me all hooked up to the monitors and everything my contractions were full strength and one right on top of eachother. I asked for something to take the edge off which pretty much just knocked me out until I would have a contraction and then I would wake up in pain. After about 5 hours I had had enough and asked for the epidural. Which I did not want because all I heard was that you couldn't move your own legs or feel anything and after have a c-section and not being able to feel anything from the waist down that was not something I was looking forward to go through again. I did not experience that sensation at all. I was still able to feel and move my legs it just really dulled the contractions which gave me a little bit of time to rest. My mother and sister left around 7:30am and by 8:30am I was fully dialeted and ready to push. In the mean time my sister had some back and my bestfriend had shown up. With my sister on one leg and my bestfriend watching and Corey taking pictures I pushed for 2.5 hours since my contractions had slowed down to 5 to 7 minutes apart. Thank goodness for nurse Nancy she was amazing!!!! Finally all the pushing was worth it and my little man was brought into the world.
Little did I know but that brought on a whole bunch of unanswered questions and worries. Dr Danby put him on my chest and Corey cut the cord and then with still no sound coming from my little man he was brought over to the baby station and the room instantly filled with people. After a few minutes we could hear a little bit of noise coming from Jackson but we still had no answers. They brought him over so that we could kiss him and then he was gone. After a little we heard that he was having some issues with his breathing and then we were overloaded with a million possibilities of what could be wrong with him. We heard everything from he may have downs to them not know what his gender was. What was suppose to be one of the best days of my life had turned into the worst. Still with no answers they decided that it would be best to have Jackson transfered to Maine Med. During the process of getting him ready to be transported he had stopped breathing so they ended up having to insert a breathing tube. So after a quick visit with him but still unable to hold himn he was brought to Maine Med while I had to remain ay SMMC due to them having no room for me at Maine Medical Center. So with no answers and no child I was left to get some rest.
to be continued...
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