I realized I never did an update after Xyler's heart cath. He had it done on Dec. 20th and everything went well. They found the narrow area and were able to stretch it out with the balloon. The hope is that it will stay stretched out so that he will have a few more years before needing the pulmonary valve replaced. If it begins to narrow again they will go in with a cath again and try to stent the area.
Xyler had to spend the night in the hospital just for observation. He did have to lay down and keep his leg still for 4 hours after. He was a champ! He was awake but in a daze during this time. Scott and I took turns standing by him, holding his leg still. When the 4 hours was up and I let go of his leg he instantly moved around and sat up. He was ready to move. He was tired but wouldn't go to sleep because he wanted to see everything going on. That kid amazes me more and more all of the time.
I have some pics but for some reason I can't upload them right now. I will try later.
Thursday, January 10, 2013
Monday, December 10, 2012
The Call
Last week Xyler's cardiologist called to let me know what they had decided to do for him. They believe that a trip to the cath lab should work. What a relief this was for us, that Xyler will not have to go through another open heart surgery right now. I just couldn't bare the thought of him going through that for the 3rd time in only less than 14 months. What they will do instead is go through an artery with a catheter and balloon the area that is narrow. They will see if it will hold after they stretch it out. If not, then they will put in a stint. This is still a dangerous procedure but a much less evasive one. If Xyler is one of the first one's for that day and all goes well, then he should be able to go home that same day. If he has it done in the afternoon then he will have to stay overnight.
He goes in on the 20th for this procedure. What a busy, stressful Christmas this has already been for us and still will be. I just hope I can get everything done that I need to before the 20th so that I can just worry about taking care of Xyler and my other kids after. We are just having a nice Christmas at home since we don't want to take Xyler anywhere. We are pretty much home bound throughout the flu season anyway with Xyler. His little body seems to catch everything and it has a harder time getting over sickness too. We love when people stop by to visit but ask that anyone who is sick to please not stop by while you are sick, or if anyone in your family is sick. Thanks!
This year money is super tight for Christmas. It seems like everything just wants to go wrong for us and we can't seem to get our heads above water. If anyone has any good helpful ideas or tips on Christmas gifts that don't cost much I am all ears. I really want to get my shopping done by next week but have only done a little bit. I am getting my tonsils out on the 26th so I am really trying to have everything super organized since it is such a busy month for us. I would have held off on getting my tonsils out because of what we are going through with Xyler, but my deductible is met so it will be so much cheaper to get it done now. I guess the bright side of it, is that I will hopefully lose all of the holiday weight and a little bit more. :)
I am asking anyone who reads this to please pray for my son and our family, but I also want to ask you to please pray for my friend and her son. He was born 15 weeks early back in January and was in the hospital until Sept. He has some health issues so he needs constant care. He has also had a few eye surgeries but they were not able to help one of his eyes, so he is blind in that eye. My friend just found out, by her being insistent on them running more tests since she was listening to her mommy instincts, that he has 3 huge tumors on his liver. He is starting chemo and they have put him on the transplant list. Please pray for this sweet boy, his mom, and his family. His name is Easton and he is a little cutie. They have been through so much already and my heart just aches that they are having to got through this too. I love them dearly and pray that Easton will get the care that he needs and that his body will grow strong and healthy.
I am really having a hard time with how so many kids have to go through so much. It is so hard as a mom to have to watch your child suffer and to not be able to do anything about it. I hate the overpowering feeling of such helplessness. I wish we could just kiss these "owies" away. I know that there is a reason for everything, I guess I'm just struggling with the not knowing the reason while it is happening. If only we could look down the road and see that things will be for the better, but I guess we would never learn and grow if we were able to get a peak of the future all of the time.
My kids are super excited for Christmas and we are trying to do fun things for it. I admire and love all of my kids and am so proud of each one of them. Xyler has been through so much and has shown so much strength in his first year of life. My other kids have also been through so much and have shown strength also and so much love and concern for their baby brother. I have felt like such a failure of a mom this year because it has been so hard for me to divide up my time with all of my kids. My oldest two are the ones who end up with the short end of the stick. They are amazing kids and thank goodness they love me even with all of my faults. I love my hubby and kids so much and am so grateful for them!
He goes in on the 20th for this procedure. What a busy, stressful Christmas this has already been for us and still will be. I just hope I can get everything done that I need to before the 20th so that I can just worry about taking care of Xyler and my other kids after. We are just having a nice Christmas at home since we don't want to take Xyler anywhere. We are pretty much home bound throughout the flu season anyway with Xyler. His little body seems to catch everything and it has a harder time getting over sickness too. We love when people stop by to visit but ask that anyone who is sick to please not stop by while you are sick, or if anyone in your family is sick. Thanks!
This year money is super tight for Christmas. It seems like everything just wants to go wrong for us and we can't seem to get our heads above water. If anyone has any good helpful ideas or tips on Christmas gifts that don't cost much I am all ears. I really want to get my shopping done by next week but have only done a little bit. I am getting my tonsils out on the 26th so I am really trying to have everything super organized since it is such a busy month for us. I would have held off on getting my tonsils out because of what we are going through with Xyler, but my deductible is met so it will be so much cheaper to get it done now. I guess the bright side of it, is that I will hopefully lose all of the holiday weight and a little bit more. :)
I am asking anyone who reads this to please pray for my son and our family, but I also want to ask you to please pray for my friend and her son. He was born 15 weeks early back in January and was in the hospital until Sept. He has some health issues so he needs constant care. He has also had a few eye surgeries but they were not able to help one of his eyes, so he is blind in that eye. My friend just found out, by her being insistent on them running more tests since she was listening to her mommy instincts, that he has 3 huge tumors on his liver. He is starting chemo and they have put him on the transplant list. Please pray for this sweet boy, his mom, and his family. His name is Easton and he is a little cutie. They have been through so much already and my heart just aches that they are having to got through this too. I love them dearly and pray that Easton will get the care that he needs and that his body will grow strong and healthy.
I am really having a hard time with how so many kids have to go through so much. It is so hard as a mom to have to watch your child suffer and to not be able to do anything about it. I hate the overpowering feeling of such helplessness. I wish we could just kiss these "owies" away. I know that there is a reason for everything, I guess I'm just struggling with the not knowing the reason while it is happening. If only we could look down the road and see that things will be for the better, but I guess we would never learn and grow if we were able to get a peak of the future all of the time.
My kids are super excited for Christmas and we are trying to do fun things for it. I admire and love all of my kids and am so proud of each one of them. Xyler has been through so much and has shown so much strength in his first year of life. My other kids have also been through so much and have shown strength also and so much love and concern for their baby brother. I have felt like such a failure of a mom this year because it has been so hard for me to divide up my time with all of my kids. My oldest two are the ones who end up with the short end of the stick. They are amazing kids and thank goodness they love me even with all of my faults. I love my hubby and kids so much and am so grateful for them!
Wednesday, December 5, 2012
The last few weeks we started to notice Xyler having some symptoms that were concerning. A couple of weeks ago we decided to take him down to Primary Children's(PCMC) ER and have him checked out since they have a cardiologist on call. It was my hubby's weekend off and that is why we decided it would be a good time to take him. Xyler had been acting different and had become whiny and clingy. His face started looking puffy so I was worried that he was retaining fluid. My hubby fed him a bottle on the Saturday that we took him to the ER, and he started sweating while drinking it. These are all not very good signs.
At the ER they took an x-ray and compared it to his last one, which was in September. They said his heart looked the same so they contributed the symptoms he was having to the cold he had at the time. When they weighed him it showed that he had gained over 1 lb in less than two weeks. I know this because he was weighed at his 1 year check up less than two weeks before. They sent us home and told me to follow up with his pediatrician and his cardiologist. I left there feeling uneasy. I tried to tell them how that was a HUGE weight gain for him since he hadn't even gained a full lb from Sept. to the beginning of Nov.
The following Monday I took him into his ped. and he did not like the weight gain and did not want to contribute it to him having a cold. He ordered an x-ray and some blood work. He also talked to Xyler's cardiologist to see if there was anything else he wanted done. The BNP blood work was elevated. I was told this meant that he had congestive heart failure. We put Xyler on Lasix to help with the fluid he was retaining and then we had to wait over Thanksgiving weekend until we could find out what his card. wanted to do next.
The Monday after Thanksgiving I talked to his card. and we set up a day to take him down to PCMC for an echo and then meet with him. Xyler had the echo yesterday. We found out that there is a problem. The Pulmonary valve that they put in at his last surgery in June, was narrowing where it connected to the pulmonary arteries. They figure it is from scar tissue. This may be something they can fix in the cath lab by ballooning the valve and putting in a stint, or he will have to have open heart surgery to fix it. His card needed to talk to his surgeon and the cath lab today to see what they think will be his best option.
I am hoping to find out today their decision. I am going crazy while waiting. Either option is scary but the cath lab is the easier route. I am just hoping for good news. It is so hard to have to watch my child go through this and feel so helpless. To have to hold him still while they try to put in an IV and have him screaming the whole time. I can't bare the thought of Xyler having to go through another procedure so soon. At his last card appt. back in Sept. things looked good and we were planning on an echo in the spring and then only yearly visits after that until he needed his next surgery. I just want my child to get a break. To get to be a normal child with his heart working fine with no problems. You wouldn't think that would be too much to ask for but in the heart world it seems like it is. It is so hard and sad to see so many heart kids who have one issue after another. These kids go through so much and are so strong. I admire them for their courage and strength but I do wish that they wouldn't have to go through so much.
One thing we can learn from what we have gone through with Xyler is to make sure the doctors are thorough. I am so thankful for his ped. doing more to make sure nothing was missed. If this wasn't caught so many other things could have been damaged because of it. I am thankful it was caught and can be fixed. When we find out how it will be fixed we will go from there. PLEASE...let them tell us soon. I hate the waiting!
At the ER they took an x-ray and compared it to his last one, which was in September. They said his heart looked the same so they contributed the symptoms he was having to the cold he had at the time. When they weighed him it showed that he had gained over 1 lb in less than two weeks. I know this because he was weighed at his 1 year check up less than two weeks before. They sent us home and told me to follow up with his pediatrician and his cardiologist. I left there feeling uneasy. I tried to tell them how that was a HUGE weight gain for him since he hadn't even gained a full lb from Sept. to the beginning of Nov.
The following Monday I took him into his ped. and he did not like the weight gain and did not want to contribute it to him having a cold. He ordered an x-ray and some blood work. He also talked to Xyler's cardiologist to see if there was anything else he wanted done. The BNP blood work was elevated. I was told this meant that he had congestive heart failure. We put Xyler on Lasix to help with the fluid he was retaining and then we had to wait over Thanksgiving weekend until we could find out what his card. wanted to do next.
The Monday after Thanksgiving I talked to his card. and we set up a day to take him down to PCMC for an echo and then meet with him. Xyler had the echo yesterday. We found out that there is a problem. The Pulmonary valve that they put in at his last surgery in June, was narrowing where it connected to the pulmonary arteries. They figure it is from scar tissue. This may be something they can fix in the cath lab by ballooning the valve and putting in a stint, or he will have to have open heart surgery to fix it. His card needed to talk to his surgeon and the cath lab today to see what they think will be his best option.
I am hoping to find out today their decision. I am going crazy while waiting. Either option is scary but the cath lab is the easier route. I am just hoping for good news. It is so hard to have to watch my child go through this and feel so helpless. To have to hold him still while they try to put in an IV and have him screaming the whole time. I can't bare the thought of Xyler having to go through another procedure so soon. At his last card appt. back in Sept. things looked good and we were planning on an echo in the spring and then only yearly visits after that until he needed his next surgery. I just want my child to get a break. To get to be a normal child with his heart working fine with no problems. You wouldn't think that would be too much to ask for but in the heart world it seems like it is. It is so hard and sad to see so many heart kids who have one issue after another. These kids go through so much and are so strong. I admire them for their courage and strength but I do wish that they wouldn't have to go through so much.
One thing we can learn from what we have gone through with Xyler is to make sure the doctors are thorough. I am so thankful for his ped. doing more to make sure nothing was missed. If this wasn't caught so many other things could have been damaged because of it. I am thankful it was caught and can be fixed. When we find out how it will be fixed we will go from there. PLEASE...let them tell us soon. I hate the waiting!
Thursday, October 25, 2012
Birthday Time!
Yesterday was Xyler's birthday! It was a great day to celebrate him turning 1! One year ago I gave birth to a handsome baby boy whom we thought was healthy. It was my easiest labor and delivery. 2 small pushes and he was out, but my dr says technically it was one because he was holding Xyler back because he wasn't ready to catch him yet. :) Xyler had the cord wrapped around his neck twice and was really purple and having a hard time breathing. He seemed fine after he was cleaned up. 7 hours later we watched as life flight took off with our baby boy, not fully understanding what was wrong with his heart and not knowing what his future held or if he even had a future.
Now look at him! He is 1 and doing so well! He will pull himself up now and walk and is super speedy at crawling. He likes to get into the dog dish and toss the food everywhere. This boy is super busy now and gets into whatever he can. I think he is making up for all of those months that he didn't have the strength to do much before his second surgery. Now, you would never know that he was born with a CHD and has had two OHS's. He is my hero. I have learned so much this year from our experience with Xyler and what he has gone through. I learn things from each of my children as they grow since they are all different, but with Xyler it was a lot in one year. I have learned more about love, faith, enduring, and trusting. I have also learned more about the heart than I can remember learning in physiology, or maybe I should say I paid more attention this time when learning about it. So many other things but I won't go into them.
We are truly blessed to have Xyler in our family. He is such a fun, sweet boy. We all love him so much! It was a great day yesterday and I can't wait for more of his birthdays to celebrate.
We are truly blessed to have Xyler in our family. He is such a fun, sweet boy. We all love him so much! It was a great day yesterday and I can't wait for more of his birthdays to celebrate.
We got Xyler a heart cake to celebrate his birthday and his heart.
As you can see he was loving the cake. :)
I love it when he pulls this face! So cute!
Xavian seems to think that Xyler's new toys are his. When I give it to Xyler to play with Xavian get's mad and says "Mine".
Another of him eating his yummy cake.
He was having fun trying to grab the whole cake. It was a great day! :)
Monday, September 24, 2012
Good news!
Xyler had a cardiologist appointment the other week. We took all of our kids to it so that they could get their blood drawn for a research study we are a part of. Xyler has a chromosome deletion so they want to see if anyone else in our family has it too. Xander and Nika did well with it and this made Xavian want to do it too since he has to do everything they do. He did fine until she put the needle in his arm and then he started to cry. I think he was very brave because he wasn't kicking or anything, just crying. She wasn't able to get a vein with him so his will have to wait for another day. The chromosome deletion that Xyler has they really don't know anything about it. So far in their research he is the first to have what he has so they don't know if it is going to cause any issues for him down the road. That scares me so I hope they find out with the research they are doing.
Dr Arrington was impressed with how well Xyler looked. Xyler was crawling everywhere and was super busy. The nurses even commented on how much better he looked than before his surgery. One talked about how blue he was. Dr. Arrington comes up to Logan once a month and uses the cardiology office in the hospital. These nurses don't deal much with little kids since the office is for adults. We are just so grateful that he comes up to Logan so that we don't have to drive down to Salt Lake every time. He told us everything looked good on Xyler's x-ray and that he didn't need to be seen until spring. That visit he will have an echo done at Primary Children's and then after that it will be yearly visits until he is needing his next surgery. This was great news for us! What a blessing it has been with him doing as well as he is. He is such a strong little boy. When you look at him now you would never be able to guess that he has had two open heart surgeries. He is our CHD Hero.
I talked to the dr about getting my other kids checked so he listened to their hearts to see if he could hear anything that didn't sound right. He said they all sounded great. This was good news too. Now we will just have to see what the blood tests show for all of us on if anyone else has the chromosome deletion. He is really interested to see what it shows for Xander since he had Meckles Divirticulum two years ago. He said that it is strange for a family to have a child with Meckle's and a chd. I guess I should explain what Meckle's is. When you are in the womb you have a little flap on your small intestine and it is fed by an artery. After you are born it disappears except for in 2% of people. And of that 2% only 2% have a problem with it. In Xander's case it caused his intestine to twist. He was really sick for a few days before and couldn't keep anything down. He also didn't have the strength to do anything, not even to watch tv. He just slept all day and night. It was scary! He was sent down to Primary Children's where they did exploratory surgery and found out the problem. They took out some of his small intestine and his appendix. I cannot say enough about how wonderful Primary Children's is and their wonderful doctors, nurses and staff. We absolutely love that hospital!
Dr Arrington was impressed with how well Xyler looked. Xyler was crawling everywhere and was super busy. The nurses even commented on how much better he looked than before his surgery. One talked about how blue he was. Dr. Arrington comes up to Logan once a month and uses the cardiology office in the hospital. These nurses don't deal much with little kids since the office is for adults. We are just so grateful that he comes up to Logan so that we don't have to drive down to Salt Lake every time. He told us everything looked good on Xyler's x-ray and that he didn't need to be seen until spring. That visit he will have an echo done at Primary Children's and then after that it will be yearly visits until he is needing his next surgery. This was great news for us! What a blessing it has been with him doing as well as he is. He is such a strong little boy. When you look at him now you would never be able to guess that he has had two open heart surgeries. He is our CHD Hero.
I talked to the dr about getting my other kids checked so he listened to their hearts to see if he could hear anything that didn't sound right. He said they all sounded great. This was good news too. Now we will just have to see what the blood tests show for all of us on if anyone else has the chromosome deletion. He is really interested to see what it shows for Xander since he had Meckles Divirticulum two years ago. He said that it is strange for a family to have a child with Meckle's and a chd. I guess I should explain what Meckle's is. When you are in the womb you have a little flap on your small intestine and it is fed by an artery. After you are born it disappears except for in 2% of people. And of that 2% only 2% have a problem with it. In Xander's case it caused his intestine to twist. He was really sick for a few days before and couldn't keep anything down. He also didn't have the strength to do anything, not even to watch tv. He just slept all day and night. It was scary! He was sent down to Primary Children's where they did exploratory surgery and found out the problem. They took out some of his small intestine and his appendix. I cannot say enough about how wonderful Primary Children's is and their wonderful doctors, nurses and staff. We absolutely love that hospital!
CHD Walk for Awareness
On Sept 8th we went down to Provo, UT, to participate in the CHD Walk for Awareness. We decided to stay in a hotel the night before close to Provo so that we didn't have to travel so early to get there. We also just wanted to have a little mini vacation. My sister and her family live not too far from Provo so we went out to dinner with them and then went back to the hotel to go swimming. My kids were so excited to go swimming, especially with their cousins. It was a fun time. I just wish we had more time to enjoy it. My sister didn't want to swim so I tried having her hold Xyler while I played in the water but Xyler did not want that. He was only happy if I was holding him. So, we sat in the luke warm hot tub. He was so cute to watch as he started to like the water more. He loved to just put his hands in and splash.
We had to be to Provo by 8:00 the next morning and we did not get much sleep. It sounded like a fun idea to sleep in a hotel until you try to get a 2 year old who is used to a crib to fall asleep in a bed. Needless to say it was a long night of not much sleep.
The walk was such a fun experience. I have always wanted to go do things for causes but never really knew which ones to go to. There are so many good causes out there! Now, we have a cause and a reason for it. It was neat to see all of the other people and the chd warriors who were there. My sister and her family came to the walk and it really meant a lot to us to have them there supporting the chd cause. I was so busy trying to keep Xyler happy that I didn't think about taking a group pic of all of us there for Xyler. I did get a few shots of everyone but my sister and her hubby. I don't know how I missed getting one of them.
We had to be to Provo by 8:00 the next morning and we did not get much sleep. It sounded like a fun idea to sleep in a hotel until you try to get a 2 year old who is used to a crib to fall asleep in a bed. Needless to say it was a long night of not much sleep.
The walk was such a fun experience. I have always wanted to go do things for causes but never really knew which ones to go to. There are so many good causes out there! Now, we have a cause and a reason for it. It was neat to see all of the other people and the chd warriors who were there. My sister and her family came to the walk and it really meant a lot to us to have them there supporting the chd cause. I was so busy trying to keep Xyler happy that I didn't think about taking a group pic of all of us there for Xyler. I did get a few shots of everyone but my sister and her hubby. I don't know how I missed getting one of them.
This was Xyler's first time in a swing while we were there and he loved it!
Xander and Scott hanging out.
Poor Xavian was so tired by the end of it. It didn't help that he didn't sleep much the night before. :)
Nika with her cousins Kendri and Kaiya and Dalton in the second pic. They had a lot of fun!
Xyler and me. This truly was a special day for us because of our little heart hero.
Thursday, September 6, 2012
One day I'm hoping I will finally get on top of things and be super organized so that I actually have time to do the things I want to do, like updating this blog. That day may be when my kids are all in school, but that day will come. :)
We have been pretty busy since my last post. Xyler is doing really well and is now crawling all over the place! He is also our little vacuum because he seems to find any little piece of dirt on the floor and puts it in his mouth. He is pretty fast at crawling and likes to book it out to the kitchen to our dogs food dish and tries to eat her food. Then I have Xavian who gets a little jealous if I give Xyler more attention than him, so he decides to get my attention by getting into things he shouldn't. So between Xyler and Xavian I stay pretty busy while Xander and Nika are at school. I'm still having a hard time with the fact that I'm old enough to have a 4th & 3rd grader. :) They are enjoying school and like their new teachers so it has been good for them to go back.
Since Xyler's last surgery he has had issues with throwing up. For a while It was everyday. He would eat something and gag, then throw up. He would cough, gag, then throw up. It was not much fun for him or me. I felt so bad for him and never knew what would cause it or when it would happen. Now he doesn't throw up from gagging and is doing a lot better. I have noticed if we feed him any food with dairy in it he throws up later. I already have two kids that are lactose intolerant but I have never had one that throws up from dairy. I have been really leery on feeding him anything but baby food!
We also think that he has an allergy to nuts. The other week we were eating a dessert where there were some chopped up pecans in the crust. My hubby was holding Xyler, feeding him some of it and was making sure to not give him any of the crust since babies aren't supposed to have any nuts until after they are one. Xyler reached out and grabbed the plate and got some of the dessert on his hand. He then rubbed his eye with that hand. A bit later the side of his face that he had rubbed was red and puffy. The only thing we could figure was that he got some of the nuts on his hand and rubbed it onto his face. I washed off his face and gave him some Zyrtec and it went away. I have never had this happen to a child and I am a little worried about him being allergic and being able to handle it. This poor kid just can't seem to get a break! I'm hoping he will outgrow the nut allergy and the issues he has with milk. If not we will handle it the best that we can! He is such a strong boy and I know he will handle anything that is thrown at him.
We have been pretty busy since my last post. Xyler is doing really well and is now crawling all over the place! He is also our little vacuum because he seems to find any little piece of dirt on the floor and puts it in his mouth. He is pretty fast at crawling and likes to book it out to the kitchen to our dogs food dish and tries to eat her food. Then I have Xavian who gets a little jealous if I give Xyler more attention than him, so he decides to get my attention by getting into things he shouldn't. So between Xyler and Xavian I stay pretty busy while Xander and Nika are at school. I'm still having a hard time with the fact that I'm old enough to have a 4th & 3rd grader. :) They are enjoying school and like their new teachers so it has been good for them to go back.
Since Xyler's last surgery he has had issues with throwing up. For a while It was everyday. He would eat something and gag, then throw up. He would cough, gag, then throw up. It was not much fun for him or me. I felt so bad for him and never knew what would cause it or when it would happen. Now he doesn't throw up from gagging and is doing a lot better. I have noticed if we feed him any food with dairy in it he throws up later. I already have two kids that are lactose intolerant but I have never had one that throws up from dairy. I have been really leery on feeding him anything but baby food!
We also think that he has an allergy to nuts. The other week we were eating a dessert where there were some chopped up pecans in the crust. My hubby was holding Xyler, feeding him some of it and was making sure to not give him any of the crust since babies aren't supposed to have any nuts until after they are one. Xyler reached out and grabbed the plate and got some of the dessert on his hand. He then rubbed his eye with that hand. A bit later the side of his face that he had rubbed was red and puffy. The only thing we could figure was that he got some of the nuts on his hand and rubbed it onto his face. I washed off his face and gave him some Zyrtec and it went away. I have never had this happen to a child and I am a little worried about him being allergic and being able to handle it. This poor kid just can't seem to get a break! I'm hoping he will outgrow the nut allergy and the issues he has with milk. If not we will handle it the best that we can! He is such a strong boy and I know he will handle anything that is thrown at him.
This is Xyler with his red blotchy face.
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