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!
Monday, December 10, 2012
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.
Thursday, July 19, 2012
Craziness!!!
So, I have decided on this blog I will also write about my other kids and everything going on in our life. I was planning on doing another blog for that but.....let's face it, I have a hard enough time finding time to write on this one that having two to write on will kill me! I cannot believe the craziness of having 4 kids and two being under two. I only have two more weeks of saying that since Xavian will be two by then.
Other than some craziness life has been good post surgery for Xyler. It has been so nice being able to take him places and to go places as a family. On July first we were able to all go to church as a family since having Xyler. What a wonderful feeling it was to have Xyler there! For many people it was their first time seeing him and he was a hit! Everyone just adored him and thought that he was a little cutie and such a happy baby. He really is a very happy baby and I think he is adorable too, but I'm a little biased. :)
Xyler wasn't drinking much for a few days around the beginning of July. I figured it was because he was teething. He acted like it hurt when he would be drinking. The morning of July 2nd he started throwing up everything! I knew he was becoming severely dehydrated so I took him in to see his ped. He could tell that he was very dehydrated and figured he had some sort of stomach virus that has been going around, so he sent us over to Logan Regional Hospital so that Xyler could get an iv and get some fluid in him. The only hard time of him being there was when they put his IV in. It took them a long time and the poor kid was screaming throughout all of it. I was not very impressed but I do realize they are not used to putting IV's in a baby. Plus, he still had bruises from all of his IV's from his surgery so they didn't want to put one in on those areas.
After spending a day and a half, and getting pumped full of fluid Xyler was looking and doing a lot better and was able to go home. Since then he has done great! He is eating and drinking like he should. I am so amazed by the difference his surgery has made for him. He always wanted to sit up on his own before but didn't have enough strength to do it. He also couldn't stand on his legs for more than a few seconds. He now can sit on his own on the floor and can stand longer than he could. It is so wonderful to watch him start to do all these things that he didn't have the strength to do before.
Now for the bad news of when he came home from the hospital. My other kids caught what he had...ugh. Xander and Nika were only sick for a few days but poor Xavian had it longer. He fevered up to 104 and then broke out with red spots. When most of the spots had disappeared we took Xavian outside to play for a bit. After a while I suddenly noticed that he was covered in spots worse than before! The heat from the sun made more of them appear. He the got diarrhea and wasn't eating or drinking much. I took him to the dr because I was afraid he was becoming dehydrated too. His weight looked good so his ped just told me to bring him in in a few days for a weight check if he wasn't improving. He finally started to drink more and then eat more a couple of days later so I never took him in. Now his feet and hands are starting to peel like crazy and I have no idea why. He is really fair skinned and seems to have sensitive skin. I just don't know what to do with him! It seems like he is always fevering up from something and then normally breaks out in hives from the fever. I just hope he starts doing better and won't get sick as much.
I love my kids so much, even with all of the craziness they bring into my life! :)
Other than some craziness life has been good post surgery for Xyler. It has been so nice being able to take him places and to go places as a family. On July first we were able to all go to church as a family since having Xyler. What a wonderful feeling it was to have Xyler there! For many people it was their first time seeing him and he was a hit! Everyone just adored him and thought that he was a little cutie and such a happy baby. He really is a very happy baby and I think he is adorable too, but I'm a little biased. :)
Xyler wasn't drinking much for a few days around the beginning of July. I figured it was because he was teething. He acted like it hurt when he would be drinking. The morning of July 2nd he started throwing up everything! I knew he was becoming severely dehydrated so I took him in to see his ped. He could tell that he was very dehydrated and figured he had some sort of stomach virus that has been going around, so he sent us over to Logan Regional Hospital so that Xyler could get an iv and get some fluid in him. The only hard time of him being there was when they put his IV in. It took them a long time and the poor kid was screaming throughout all of it. I was not very impressed but I do realize they are not used to putting IV's in a baby. Plus, he still had bruises from all of his IV's from his surgery so they didn't want to put one in on those areas.
After spending a day and a half, and getting pumped full of fluid Xyler was looking and doing a lot better and was able to go home. Since then he has done great! He is eating and drinking like he should. I am so amazed by the difference his surgery has made for him. He always wanted to sit up on his own before but didn't have enough strength to do it. He also couldn't stand on his legs for more than a few seconds. He now can sit on his own on the floor and can stand longer than he could. It is so wonderful to watch him start to do all these things that he didn't have the strength to do before.
Now for the bad news of when he came home from the hospital. My other kids caught what he had...ugh. Xander and Nika were only sick for a few days but poor Xavian had it longer. He fevered up to 104 and then broke out with red spots. When most of the spots had disappeared we took Xavian outside to play for a bit. After a while I suddenly noticed that he was covered in spots worse than before! The heat from the sun made more of them appear. He the got diarrhea and wasn't eating or drinking much. I took him to the dr because I was afraid he was becoming dehydrated too. His weight looked good so his ped just told me to bring him in in a few days for a weight check if he wasn't improving. He finally started to drink more and then eat more a couple of days later so I never took him in. Now his feet and hands are starting to peel like crazy and I have no idea why. He is really fair skinned and seems to have sensitive skin. I just don't know what to do with him! It seems like he is always fevering up from something and then normally breaks out in hives from the fever. I just hope he starts doing better and won't get sick as much.
I love my kids so much, even with all of the craziness they bring into my life! :)
Sunday, July 15, 2012
Life After Surgery #2 Continued
Day Two At Hospital - I would say day two was the hardest day during the whole time Xyler was in the hospital. We went to the CICU Friday morning and I was so excited to see our favorite nurse/friend Carolyn as Xyler's nurse! It was so nice to have a nurse that we knew from the first time he was in the CICU. We became good friends and keep in touch so she knew that he would be there. She told us that he was doing well and she got him to drink a bottle. I was so happy to hear that he was eating! I thought it was going to be a day of him sleeping most of the day but that did not happen.
Poor Xyler was in a lot of pain from a few different things. Obviously from the surgery, his chest tubes, and he was super constipated. He fussed so much and it was heart breaking for me to see him in pain and to not be able to do anything about it. I couldn't hold him until later in the day, and the time the I couldn't was so hard! I couldn't stand the feeling of helplessness when my child was obviously in pain. I think the chest tubes were making it hurt when he would try to go so then he wouldn't go. We decided to give him things to help but they didn't do much for him. He would fuss and I would go up to him to try and calm him down, and he would look at me then start crying more. I think he was mad that I wasn't picking him up.
I was so happy when I could finally hold Xyler after he had his IV in his neck removed and the one in his wrist! We were even being told that he would probably get moved up to the floor that evening. I was so excited! I didn't think he would get moved up that fast and I wasn't going to complain, that was for sure! :)
When Xyler was doing better and it was close to shift change we decided to go out to eat. At shift change we have to leave from 7-8. We decided to eat at Joe's Crab Shack since we love it and hardly ever get to eat there. Scott and I hardly ever get to go out on a date so this was our date. The food was delicious and it was nice to be together but I was not liking being away from Xyler for very long. We hurried back and when we got there Xyler was not there. He had been moved up to a room!
Day Three - When we got there in the morning we were told that he had a fever. It got high enough to where they were concerned so they were drawing blood, getting a urine sample, and testing his snot for respiratory things. Because of the respiratory tests it was protocol to move him to a room away from the heart area. I didn't mind the move since the room he was moved to actually had a couch in it. These are so much better to sleep on instead of the pull out chair. Right before he was moved they were giving him some general antibiotics. While they were running it through his IV I got up to look at him in the crib and his forehead was turning bright red! I told Scott to hurry and get the nurse because he was having a reaction to the medicine. We were later told that the antibiotic, Vanco, would cause what they call the "red man syndrome". They would give him benedryl and set the pump at two hours instead of one for running it through his IV. It was so sad to see him looking so out of it from the drugs and from the fever.
The good thing that happened before they moved Xyler was his chest tubes and pacer wires were taken out! This is always a great thing since those chest tubes are mighty uncomfortable. Xyler couldn't tell us that they were but you could tell a difference with them out. The main chest tube is pretty big and they put stitches around it and then when it is taken out they tighten the stitches and tie it off. The other things they just pull out and bandage up. The NP was so nice and she was so impressed with how well Xyler held still.
I took this pic right before they took them out. You can see how out of it Xyler was.
My brother Wade and his daughter came to visit. My sister Heather and her hubby Casey and fam came to visit and brought my kids to visit since they were staying with them. It was so good to see my kids but so crazy at the same time! My parents and my sister Richelle also came to visit so it was a little crazy for a bit. I wish I could put a mute button on my kids sometimes, a pause one wouldn't be so bad either. :) We went out to lunch with all of them except for my parents and Richelle. We knew it was going to be hard for Xavian when it came time for him to leave with Heather. He has a hard time being away from us. The rest of the day was pretty uneventful, thank goodness! Xyler was eating better and his fever had gone away later that afternoon. Xyler just slept all day, which was just what he needed.
Day Four - When we got to Xyler's room he still seemed out of it. The nurse told us that his IV went bad so she had the IV team put another one in earlier that morning. When they started the Vanco they set it to run for one hour instead of two so even with a dose of benedryl before he still got red man's syndrome.
For some reason only the top part of his head went red. This wasn't as red as it was the first time.
The Vanco was so hard on his veins and he had to get a total of 3 IV's this day. I was ready to be done with the Vanco but we still had to wait until the next morning to see how the cultures were. So far all of the other tests they had ran were negative. Xyler just slept most of the day except when it was time to eat. He was eating almost as well as he normally did so we were super happy about that. One thing I really like at PCMC is that they will bring the sacrament to your room. They also hold a 30 minute sacrament meeting but where Xyler was having a hard time with the Vanco we decided not to go. We had the same nurse as the day before and I love that she was able to come into our room to partake of the sacrament too. We really liked her and I enjoyed talking to her throughout the day. She was so good to keep an eye on his IV's since he was having such a hard time with them.
Scott left that night to go stay at his sisters house since he was going to work the next day. We had been staying at the University Guest House up until this night. I just stayed in the room with Xyler, which I don't mind too much. I didn't like that his room didn't have a shower so I would have to use the community one. They also come in really early to draw blood and then take him for an x-ray. I was pretty tired Monday.
Day Five - Xyler was starting to act more like himself this day. He was still sleeping quite a bit but had longer awake periods. I think from all of the IV's he had to get before he was sick of everything! When the nurse would try to give him his medicine he would swat at her hands and push them away. I don't blame him for being sick of everything and being sick of all of the medicine he was having to take. His x-ray had shown he had gotten a bit more fluid around his heart than the day before so they were going to give him his lasix(a diuretic) through his IV. The good news was that the cultures were negative so then they could stop the antibiotics! The bad news was his IV went bad from the last dose of vanco and he would need an IV for his lasix. He was also going to have an echo sometime this day and if it looked good he might be able to go home within the next two days. We had started giving Xyler his oxycodone only when he needed the day before, instead of every 6 hours. I was trying to hold off on it until right before his echo since they weren't going to sedate him for it. I figured the oxycodone would help relax him.
Xyler did pretty well during his echo. I fed him a bottle throughout it but he drank it fast so it didn't help for very long. For some reason while he was in the hospital Xyler decided he didn't like his binky. I kept trying to give it to him during his echo and he would just spit it right back out. With the help of a movie and a great tech we made it through it.
The echo looked good but I was told that when they run lasix through the IV they like to keep them another day so that they can give it to him orally and then see how his x-ray looks. He was taken off of Oxygen and his sats looked great! I loved having him off of it and was just hoping his sats stayed high. Scott came down to visit after work but because of this info he decided to go stay at his sister's again and then go to work the next day. It was nice to see him and be able to have dinner with him.
Day Six - Xyler was eating well and doing pretty good. I was planning on one more day in the hospital, but when the doctors came around for rounds I was told we could go home. Xyler's cardiologist was going to be in Logan on Thursday so we just had to go there for an appointment so that they could do an x-ray to check the fluid around his heart. From the moment the H word was mentioned Xyler was all smiles! He knew what was going on and he was very happy about it. :) I don't think Scott was happy about the short notice since he had to leave work to get us but I was happy about it no matter how short of a notice. My sister met us at the hospital to bring my kids. It was a good feeling knowing we were all going home.
This is Xyler when we were outside the hospital waiting for Scott to pull the van up. He was so happy! Does he look like he had surgery only 5 days before? If you notice, there is no oxygen tube and you can see his whole face! I love it! What a little warrior!
We went out to eat some lunch with my sister and her kids. This was Xyler's first time going to a resturant. I made sure I asked the nurse if it would be ok to take him. What an amazing feeling to be able to all go out to eat as a family! It was something we had not done since Xyler was born.
Poor Xyler was in a lot of pain from a few different things. Obviously from the surgery, his chest tubes, and he was super constipated. He fussed so much and it was heart breaking for me to see him in pain and to not be able to do anything about it. I couldn't hold him until later in the day, and the time the I couldn't was so hard! I couldn't stand the feeling of helplessness when my child was obviously in pain. I think the chest tubes were making it hurt when he would try to go so then he wouldn't go. We decided to give him things to help but they didn't do much for him. He would fuss and I would go up to him to try and calm him down, and he would look at me then start crying more. I think he was mad that I wasn't picking him up.
I was so happy when I could finally hold Xyler after he had his IV in his neck removed and the one in his wrist! We were even being told that he would probably get moved up to the floor that evening. I was so excited! I didn't think he would get moved up that fast and I wasn't going to complain, that was for sure! :)
When Xyler was doing better and it was close to shift change we decided to go out to eat. At shift change we have to leave from 7-8. We decided to eat at Joe's Crab Shack since we love it and hardly ever get to eat there. Scott and I hardly ever get to go out on a date so this was our date. The food was delicious and it was nice to be together but I was not liking being away from Xyler for very long. We hurried back and when we got there Xyler was not there. He had been moved up to a room!
Day Three - When we got there in the morning we were told that he had a fever. It got high enough to where they were concerned so they were drawing blood, getting a urine sample, and testing his snot for respiratory things. Because of the respiratory tests it was protocol to move him to a room away from the heart area. I didn't mind the move since the room he was moved to actually had a couch in it. These are so much better to sleep on instead of the pull out chair. Right before he was moved they were giving him some general antibiotics. While they were running it through his IV I got up to look at him in the crib and his forehead was turning bright red! I told Scott to hurry and get the nurse because he was having a reaction to the medicine. We were later told that the antibiotic, Vanco, would cause what they call the "red man syndrome". They would give him benedryl and set the pump at two hours instead of one for running it through his IV. It was so sad to see him looking so out of it from the drugs and from the fever.
The good thing that happened before they moved Xyler was his chest tubes and pacer wires were taken out! This is always a great thing since those chest tubes are mighty uncomfortable. Xyler couldn't tell us that they were but you could tell a difference with them out. The main chest tube is pretty big and they put stitches around it and then when it is taken out they tighten the stitches and tie it off. The other things they just pull out and bandage up. The NP was so nice and she was so impressed with how well Xyler held still.
I took this pic right before they took them out. You can see how out of it Xyler was.
My brother Wade and his daughter came to visit. My sister Heather and her hubby Casey and fam came to visit and brought my kids to visit since they were staying with them. It was so good to see my kids but so crazy at the same time! My parents and my sister Richelle also came to visit so it was a little crazy for a bit. I wish I could put a mute button on my kids sometimes, a pause one wouldn't be so bad either. :) We went out to lunch with all of them except for my parents and Richelle. We knew it was going to be hard for Xavian when it came time for him to leave with Heather. He has a hard time being away from us. The rest of the day was pretty uneventful, thank goodness! Xyler was eating better and his fever had gone away later that afternoon. Xyler just slept all day, which was just what he needed.
Day Four - When we got to Xyler's room he still seemed out of it. The nurse told us that his IV went bad so she had the IV team put another one in earlier that morning. When they started the Vanco they set it to run for one hour instead of two so even with a dose of benedryl before he still got red man's syndrome.
For some reason only the top part of his head went red. This wasn't as red as it was the first time.
The Vanco was so hard on his veins and he had to get a total of 3 IV's this day. I was ready to be done with the Vanco but we still had to wait until the next morning to see how the cultures were. So far all of the other tests they had ran were negative. Xyler just slept most of the day except when it was time to eat. He was eating almost as well as he normally did so we were super happy about that. One thing I really like at PCMC is that they will bring the sacrament to your room. They also hold a 30 minute sacrament meeting but where Xyler was having a hard time with the Vanco we decided not to go. We had the same nurse as the day before and I love that she was able to come into our room to partake of the sacrament too. We really liked her and I enjoyed talking to her throughout the day. She was so good to keep an eye on his IV's since he was having such a hard time with them.
Scott left that night to go stay at his sisters house since he was going to work the next day. We had been staying at the University Guest House up until this night. I just stayed in the room with Xyler, which I don't mind too much. I didn't like that his room didn't have a shower so I would have to use the community one. They also come in really early to draw blood and then take him for an x-ray. I was pretty tired Monday.
Day Five - Xyler was starting to act more like himself this day. He was still sleeping quite a bit but had longer awake periods. I think from all of the IV's he had to get before he was sick of everything! When the nurse would try to give him his medicine he would swat at her hands and push them away. I don't blame him for being sick of everything and being sick of all of the medicine he was having to take. His x-ray had shown he had gotten a bit more fluid around his heart than the day before so they were going to give him his lasix(a diuretic) through his IV. The good news was that the cultures were negative so then they could stop the antibiotics! The bad news was his IV went bad from the last dose of vanco and he would need an IV for his lasix. He was also going to have an echo sometime this day and if it looked good he might be able to go home within the next two days. We had started giving Xyler his oxycodone only when he needed the day before, instead of every 6 hours. I was trying to hold off on it until right before his echo since they weren't going to sedate him for it. I figured the oxycodone would help relax him.
Xyler did pretty well during his echo. I fed him a bottle throughout it but he drank it fast so it didn't help for very long. For some reason while he was in the hospital Xyler decided he didn't like his binky. I kept trying to give it to him during his echo and he would just spit it right back out. With the help of a movie and a great tech we made it through it.
The echo looked good but I was told that when they run lasix through the IV they like to keep them another day so that they can give it to him orally and then see how his x-ray looks. He was taken off of Oxygen and his sats looked great! I loved having him off of it and was just hoping his sats stayed high. Scott came down to visit after work but because of this info he decided to go stay at his sister's again and then go to work the next day. It was nice to see him and be able to have dinner with him.
Day Six - Xyler was eating well and doing pretty good. I was planning on one more day in the hospital, but when the doctors came around for rounds I was told we could go home. Xyler's cardiologist was going to be in Logan on Thursday so we just had to go there for an appointment so that they could do an x-ray to check the fluid around his heart. From the moment the H word was mentioned Xyler was all smiles! He knew what was going on and he was very happy about it. :) I don't think Scott was happy about the short notice since he had to leave work to get us but I was happy about it no matter how short of a notice. My sister met us at the hospital to bring my kids. It was a good feeling knowing we were all going home.
This is Xyler when we were outside the hospital waiting for Scott to pull the van up. He was so happy! Does he look like he had surgery only 5 days before? If you notice, there is no oxygen tube and you can see his whole face! I love it! What a little warrior!
We went out to eat some lunch with my sister and her kids. This was Xyler's first time going to a resturant. I made sure I asked the nurse if it would be ok to take him. What an amazing feeling to be able to all go out to eat as a family! It was something we had not done since Xyler was born.
Sunday, June 24, 2012
Life after surgery #2
So....I think it's obvious by now that I am not the greatest at updating this blog. My intentions are there, however having time is not. I was planning on doing updates ever day when Xyler was in the hospital but was too tired to do it. I guess I am just getting old. :) I will just have to recap everything right now.
Day One In Hospital - In my last post I briefly talked about how Xyler was after surgery. I still won't go into too much detail. His surgery was set for 8:30 AM and we had to be there by 7:00 AM. We had to wait for quite a while before they finally called us back to get Xyler ready for his surgery. Dr. Kaza(Xyler's surgeon) met with us briefly. He couldn't believe how big Xyler was and he thought he was so cute and loved his dark eyes and long eyelashes. Then the anesthesiologist came in and talked to us. After we got an employee to come in to help Scott administer a priesthood blessing to Xyler before they took him back for his surgery. Saying goodbye before they take him is always so hard. I was doing good up until that point. They just had me carry him to where he needed to go as far as we could go. I gave him a lot of kisses and a big hug and with tears in my eyes I had to hand him over to the anesthesiologist. Scott and I made our way to the waiting room and began our long wait. It is nice that they update you throughout the surgery and I was always watching the clock waiting for an update. After a long wait we were finally able to see Xyler and by this time it was 3:30 PM. This one was longer than his first but they also had to do more this time.
In his first surgery they put in a BT Shunt so that he would get blood flow to his pulmonary arteries. they also had to widen both his left and right pulmonary artery. Both of those looked good so they didn't have to do anything with them during the second surgery. So, this surgery they had to take out the BT Shunt, patch up his hole between the lt and rt chamber(which we have a piece of the material they used and were told that his hole was really big), and put in what they call a conduet, which is from a donor, for his pulmonary valve. Xyler did not have a pulmonary valve before this surgery.
It is always such a relief when the doctor comes and talks to you about the surgery and then when you can see your child. I don't even get scared at seeing him with so many tubes and IV's after surgery because I am just so relieved that he made it!
I was so happy and surprised when they told us they would try to take the breathing tube our that evening. It happened sooner than we thought it would! Yay!
He slept most of the first day after surgery, which who can blame him. It's hard getting the anesthesia out of their little systems and then add pain meds on top of that and you have a nice sleeping concoction. We did see some eyes a few times but only for a few seconds, but he did kick his legs up a lot. That was one reason why they took out the tube sooner than expected.
It is now late and I am once again super tired. I think I should just blame it on my kids and not from being old. :) I will try my hardest to get on here tomorrow, or I guess I should say later today since it's after midnight, and finish telling about this surgery and add more pics.
Day One In Hospital - In my last post I briefly talked about how Xyler was after surgery. I still won't go into too much detail. His surgery was set for 8:30 AM and we had to be there by 7:00 AM. We had to wait for quite a while before they finally called us back to get Xyler ready for his surgery. Dr. Kaza(Xyler's surgeon) met with us briefly. He couldn't believe how big Xyler was and he thought he was so cute and loved his dark eyes and long eyelashes. Then the anesthesiologist came in and talked to us. After we got an employee to come in to help Scott administer a priesthood blessing to Xyler before they took him back for his surgery. Saying goodbye before they take him is always so hard. I was doing good up until that point. They just had me carry him to where he needed to go as far as we could go. I gave him a lot of kisses and a big hug and with tears in my eyes I had to hand him over to the anesthesiologist. Scott and I made our way to the waiting room and began our long wait. It is nice that they update you throughout the surgery and I was always watching the clock waiting for an update. After a long wait we were finally able to see Xyler and by this time it was 3:30 PM. This one was longer than his first but they also had to do more this time.
In his first surgery they put in a BT Shunt so that he would get blood flow to his pulmonary arteries. they also had to widen both his left and right pulmonary artery. Both of those looked good so they didn't have to do anything with them during the second surgery. So, this surgery they had to take out the BT Shunt, patch up his hole between the lt and rt chamber(which we have a piece of the material they used and were told that his hole was really big), and put in what they call a conduet, which is from a donor, for his pulmonary valve. Xyler did not have a pulmonary valve before this surgery.
It is always such a relief when the doctor comes and talks to you about the surgery and then when you can see your child. I don't even get scared at seeing him with so many tubes and IV's after surgery because I am just so relieved that he made it!
I was so happy and surprised when they told us they would try to take the breathing tube our that evening. It happened sooner than we thought it would! Yay!
He slept most of the first day after surgery, which who can blame him. It's hard getting the anesthesia out of their little systems and then add pain meds on top of that and you have a nice sleeping concoction. We did see some eyes a few times but only for a few seconds, but he did kick his legs up a lot. That was one reason why they took out the tube sooner than expected.
It is now late and I am once again super tired. I think I should just blame it on my kids and not from being old. :) I will try my hardest to get on here tomorrow, or I guess I should say later today since it's after midnight, and finish telling about this surgery and add more pics.
Thursday, June 14, 2012
Surgery Day
I just want to give a quick update about Xyler's surgery. Everything went well today with his surgery. It was about 6 hours long so our morning went by really slow. They have already taken out his breathing tube and have been working on weaning him off of oxygen. He was still sleeping when we left but had woken up a few times to fuss a bit. It is so nice having his surgery over with and to be on the recovery side now. We are so grateful that he is doing as well as he is and hope that he continues on this path. It has been a long day and I am ready to get some sleep so this one will be short but I will try to write a longer post tomorrow and add some pics. Goodnight.
Tuesday, June 5, 2012
Surgery Date!!!
Xyler had his MRI on May 24th. After a long wait of 4 weeks for insurance to approve it I got a call to schedule it but the soonest they could get him in was for June 13th. This was all because of the type of anesthesia they were going to use on him was only done on Wednesdays at a certain time. I was devastated since I just want to get this surgery past us. Poor Xyler is getting sick of his oxygen tube and keeps pulling it out. I called his cardiologist to see if there was anything they could do. He changed what kind of anesthesia they would use so then we were able to get him in for his MRI the very next day. This was an answer to my prayers!
Xyler did really well with the MRI. He was so cute when they were putting him to sleep. He fought it at first and then he took a big yawn and made the cutest little noise and then went to sleep. His body instantly went limp and he seemed like he would be out for a bit. The nurse took him from Scott's arms and then laid him down on the table for the MRI. Once he was laid down he instantly woke up and started wiggling like crazy! Scott and I both couldn't believe he was awake. He does not like to be laid down on tables since he normally ends up getting poked by needles when he is. I'm thinking he woke up because he was scared he was going to get a shot. :)
A week after his MRI I got the call for the date that his surgery was set for, June 15th. Well, I just got a call today and they have now changed it to June 14th. We take him in on the 13th for his pre-op. It seems so crazy that it is only a little over a week away. There are so many things I need to do to get prepared for it. It is hard to describe all of the emotions that go through me. My sister is being a saint and watching my 3 other kids. It is so hard to be away from my other kids. We are still trying to figure out where we are going to be staying so I'm stressed over this. We have options for places that are about 30 minutes away but I have a very hard time with being that far away from Xyler. It is hard enough that I have to leave him at night but it seems unbearable to be that far away too!
Right now I think I am just trying to think about how hopefully he will be off of oxygen after this surgery and will fatten up and get more strength. It is hard to think about the moment when I will have to give him a hug and a kiss and let them take him away from me and into the O.R. Right now I am just trying to keep that out of my mind but it's not easy. It is so hard to wait while knowing that they are operating on him and his heart. I am so thankful for these miraculous doctors and nurses that can do these things. He is a very strong little boy and I know he is a fighter and will fight through this. He already showed us this with his first surgery.
Hopefully in a little over a month we will be able to go out somewhere as a family. We have not been able to do this since Xyler was born. It will be so nice to take Xyler places and for him to experience more than just home, doctors offices and hospitals. He will either love it or be a little scared. I can't wait to see which one. :)
Xyler did really well with the MRI. He was so cute when they were putting him to sleep. He fought it at first and then he took a big yawn and made the cutest little noise and then went to sleep. His body instantly went limp and he seemed like he would be out for a bit. The nurse took him from Scott's arms and then laid him down on the table for the MRI. Once he was laid down he instantly woke up and started wiggling like crazy! Scott and I both couldn't believe he was awake. He does not like to be laid down on tables since he normally ends up getting poked by needles when he is. I'm thinking he woke up because he was scared he was going to get a shot. :)
A week after his MRI I got the call for the date that his surgery was set for, June 15th. Well, I just got a call today and they have now changed it to June 14th. We take him in on the 13th for his pre-op. It seems so crazy that it is only a little over a week away. There are so many things I need to do to get prepared for it. It is hard to describe all of the emotions that go through me. My sister is being a saint and watching my 3 other kids. It is so hard to be away from my other kids. We are still trying to figure out where we are going to be staying so I'm stressed over this. We have options for places that are about 30 minutes away but I have a very hard time with being that far away from Xyler. It is hard enough that I have to leave him at night but it seems unbearable to be that far away too!
Right now I think I am just trying to think about how hopefully he will be off of oxygen after this surgery and will fatten up and get more strength. It is hard to think about the moment when I will have to give him a hug and a kiss and let them take him away from me and into the O.R. Right now I am just trying to keep that out of my mind but it's not easy. It is so hard to wait while knowing that they are operating on him and his heart. I am so thankful for these miraculous doctors and nurses that can do these things. He is a very strong little boy and I know he is a fighter and will fight through this. He already showed us this with his first surgery.
Hopefully in a little over a month we will be able to go out somewhere as a family. We have not been able to do this since Xyler was born. It will be so nice to take Xyler places and for him to experience more than just home, doctors offices and hospitals. He will either love it or be a little scared. I can't wait to see which one. :)
Wednesday, May 9, 2012
Waiting....waiting...waiting...
I feel like all I do right now is wait. We are waiting for insurance to approve Xyler's MRI that needs to be done. It feels like it is taking forever! I also feel like we are in limbo until we get his MRI done and get his surgery scheduled. I don't dare make plans for anything since I have no idea if we will be able to do anything at that time or not. We are still keeping Xyler at home to make sure he doesn't get sick. We have also had to keep turning up his oxygen. If anyone knows a good way to keep his nose from drying out from the O2 I would love to hear it. I keep doing saling spray but his nose still get's stuffy and bloody. He is also liking to pull out his O2 tube. It will be nice when he no longer has to be on O2.
My daughter, Nika, is going to be turning 8 this month. I just can't believe my kids are getting so old! Xander just turned 9 in March and now this! It's crazy! She is supposed to be getting baptized on June 02, but it is looking like we will have to postpone it since we don't know when Xyler will have his surgery. We want our whole family to be able to go so this means it will have to wait until after the surgery. Nika is such a sweetheart and understands. She found out her friend will be getting baptized the next time so that made Nika very happy to wait until then so they can be baptized the same day. I'm so grateful for such a sweet and understanding daughter.
I'm really excited to see how Xavian and Xyler will be as they grow up. They already seem like they are going to be the best of friends. Xavian loves to come up to Xyler and tell him hi. Xyler loves it too and will just laugh at anything Xavian does. They are so cute together. Xavian also likes to make sure Xyler has a toy or his blankie all the time. I'm just hoping they don't fight as much as Xander and Nika do. Xander and Nika always played a lot when they were little since it was just the two of them, but now they seem to fight ALL of the time! I just don't know what to do with them. Having my 4 kids now has made me ask myself how people have more kids and still stay sane!?! :) Hopefully one day soon I will feel like I have a good routine down and that I'm going to survive being a mother. I truly have a lot of respect for my mom and her raising 8 kids.
My daughter, Nika, is going to be turning 8 this month. I just can't believe my kids are getting so old! Xander just turned 9 in March and now this! It's crazy! She is supposed to be getting baptized on June 02, but it is looking like we will have to postpone it since we don't know when Xyler will have his surgery. We want our whole family to be able to go so this means it will have to wait until after the surgery. Nika is such a sweetheart and understands. She found out her friend will be getting baptized the next time so that made Nika very happy to wait until then so they can be baptized the same day. I'm so grateful for such a sweet and understanding daughter.
I'm really excited to see how Xavian and Xyler will be as they grow up. They already seem like they are going to be the best of friends. Xavian loves to come up to Xyler and tell him hi. Xyler loves it too and will just laugh at anything Xavian does. They are so cute together. Xavian also likes to make sure Xyler has a toy or his blankie all the time. I'm just hoping they don't fight as much as Xander and Nika do. Xander and Nika always played a lot when they were little since it was just the two of them, but now they seem to fight ALL of the time! I just don't know what to do with them. Having my 4 kids now has made me ask myself how people have more kids and still stay sane!?! :) Hopefully one day soon I will feel like I have a good routine down and that I'm going to survive being a mother. I truly have a lot of respect for my mom and her raising 8 kids.
Tuesday, April 24, 2012
Update
Wow! It has been awhile since I have been on here. It seems like I never have time to do the things I need to everyday. I think we need more time in the evening and night so I can get more done and still get some sleep. :)
I thought I better get on here and write an update on Xyler. We took him in on the 18th for an echo. It went well. He kept waking up so they had to keep giving him more drugs. He was awake when they were done but still had a dazed look. He did really well with eating after so we didn't have to stay too long in recovery. The nice thing was his cardiologist came and talked to us while he was in recovery.
He told us that he was needing the next surgery now. He also said that he may need to get an MRI since the echo didn't show his left pulmonary artery very well. His surgeon was out of the country so when he came back then he would decide on if the MRI was needed or not.
Well....I got the call today and they do want an MRI. I was hoping to be told a surgery date in a couple of days but now one won't be set until after the MRI. Hopefully they will call soon with a date for it. Then we will go from there.
Waiting is hard for me. I am nervous for Xyler to have his surgery and at the same time I just want it over. I have been talking to another TOF mom and she has told me how well her daughter did after her second surgery. I hope Xyler does as well. Right now he doesn't have the strength to stand on his legs. When I try he just laughs thinking it's fun. He also doesn't sit on his own. He did just start rolling over from his back to his belly. He has been rolling onto his sides for a long time and likes to sleep on his side. One night I checked on him and he was on his belly. He has rolled back a couple of times but all of the other times he gets really mad until you move him back to his back.
I am also looking forward to him not being on oxygen after his next surgery. I am hoping he will come home without it but know it may take a bit. I have had to turn his O2 up to 1/2 a liter. He used to be on 1/4. This is also a sign that he is outgrowing his shunt and needs the surgery.
Today he is six months old. Time has gone by fast. He has added so much joy to our family and we just love him so much!
I thought I better get on here and write an update on Xyler. We took him in on the 18th for an echo. It went well. He kept waking up so they had to keep giving him more drugs. He was awake when they were done but still had a dazed look. He did really well with eating after so we didn't have to stay too long in recovery. The nice thing was his cardiologist came and talked to us while he was in recovery.
He told us that he was needing the next surgery now. He also said that he may need to get an MRI since the echo didn't show his left pulmonary artery very well. His surgeon was out of the country so when he came back then he would decide on if the MRI was needed or not.
Well....I got the call today and they do want an MRI. I was hoping to be told a surgery date in a couple of days but now one won't be set until after the MRI. Hopefully they will call soon with a date for it. Then we will go from there.
Waiting is hard for me. I am nervous for Xyler to have his surgery and at the same time I just want it over. I have been talking to another TOF mom and she has told me how well her daughter did after her second surgery. I hope Xyler does as well. Right now he doesn't have the strength to stand on his legs. When I try he just laughs thinking it's fun. He also doesn't sit on his own. He did just start rolling over from his back to his belly. He has been rolling onto his sides for a long time and likes to sleep on his side. One night I checked on him and he was on his belly. He has rolled back a couple of times but all of the other times he gets really mad until you move him back to his back.
I am also looking forward to him not being on oxygen after his next surgery. I am hoping he will come home without it but know it may take a bit. I have had to turn his O2 up to 1/2 a liter. He used to be on 1/4. This is also a sign that he is outgrowing his shunt and needs the surgery.
Today he is six months old. Time has gone by fast. He has added so much joy to our family and we just love him so much!
Sunday, March 25, 2012
Family
Last night my daughter and I went to the movie "We Bought A Zoo". Nika is the one who chose this movie and she made a good choice. Since we can't get out and do things as a family until it warms up more, Scott and I will take turns on taking some of the kids to a movie or out to dinner. He normally takes Xander and Xavian, and I take Nika. It is always a fun girls night out for Nika and I. I also think it is good for her to get this since she is the only girl and needs some girlie time. :) It was a really good, cute movie. Nika loved it since it had a lot of animals in it and I liked it because of the message it gives. It is based off of a true story and I just love how hard this dad worked to build something for his family. A man loses his wife to illness and then struggles with raising his two children. He quits his job and then buys an old house that has an old zoo that comes with it. He then works hard with the zoo staff to bring it up to code so that they can open it once again. During this time he is at a constant battle with his 14year old son, who is having a really hard time since his mother's passing. His 7 year old daughter loves the zoo and that was the reason why he bought it. What I loved about this movie was how hard he worked at trying to get his family happy again. I loved the way the family worked together on getting the zoo ready and how close they become because of it.
I think for anyone who has kids they can relate to this movie on wanting to become closer to their kids and doing more with them. I think every child is a wonderful miracle and I am so thankful for all 4 of my miracles. My children may drive me bonkers at times but I still love them with all of my heart! I think since having Xyler, movies like this touch my heart even more than before. Before Xyler had his surgery I was plagued with the unknown of whether he was going to come out of the surgery alive or not. I think as a parent you are always afraid of losing a child but I have never had it come stare me face to face as a possibility as I did that day. My oldest had to have emergency surgery a couple of years ago and that was terrifying for me! I wasn't really worried about him not making it through the surgery as I was with Xyler. Xyler's was on his heart and he had to be put on heart and lung bypass for it. All I could do was pray that his heart started beating again and that he would make it through it.
I believe in the Plan of Salvation with all of my heart and I knew that I would see Xyler again one day if he didn't make it, but how sad I would have been to have not been able to have more time with him on this earth. I think this experience has really made me grateful for my family and that we are an Eternal Family. It has also made me appreciate every second that I get to spend with my family. That is why this movie touched my heart like it did. It has made me want to do more things with my family. To work and play side by side on projects and become a more loving, happy family. I can relate to what this father was trying to do when he bought the zoo. It is what I want for my family. Scott doesn't want to plant a garden this year since he works for a produce company, but I think we should so that we can go out and work in it together as a family. :) I am also hoping that we will be able to just get away for a few days after Xyler heals from his next surgery, so that we can just spend some much needed quality time as a family.
With the thought of Xyler having open heart surgery in a month or two it brings back those same feelings. I love Xyler so much and he has been such a wonderful little miracle to our family. I love how he smiles and giggles every time he looks at me. Even though he is only 5 months old he has already taught our family so much! He is so strong and I know he will do well. I know I say this at the end of most of my posts but I am really, truly, so thankful for my family and I love each of them so very much! I hope everyone will try to spend more time just enjoying the company of your family. It will truly make you happy.
I think for anyone who has kids they can relate to this movie on wanting to become closer to their kids and doing more with them. I think every child is a wonderful miracle and I am so thankful for all 4 of my miracles. My children may drive me bonkers at times but I still love them with all of my heart! I think since having Xyler, movies like this touch my heart even more than before. Before Xyler had his surgery I was plagued with the unknown of whether he was going to come out of the surgery alive or not. I think as a parent you are always afraid of losing a child but I have never had it come stare me face to face as a possibility as I did that day. My oldest had to have emergency surgery a couple of years ago and that was terrifying for me! I wasn't really worried about him not making it through the surgery as I was with Xyler. Xyler's was on his heart and he had to be put on heart and lung bypass for it. All I could do was pray that his heart started beating again and that he would make it through it.
I believe in the Plan of Salvation with all of my heart and I knew that I would see Xyler again one day if he didn't make it, but how sad I would have been to have not been able to have more time with him on this earth. I think this experience has really made me grateful for my family and that we are an Eternal Family. It has also made me appreciate every second that I get to spend with my family. That is why this movie touched my heart like it did. It has made me want to do more things with my family. To work and play side by side on projects and become a more loving, happy family. I can relate to what this father was trying to do when he bought the zoo. It is what I want for my family. Scott doesn't want to plant a garden this year since he works for a produce company, but I think we should so that we can go out and work in it together as a family. :) I am also hoping that we will be able to just get away for a few days after Xyler heals from his next surgery, so that we can just spend some much needed quality time as a family.
With the thought of Xyler having open heart surgery in a month or two it brings back those same feelings. I love Xyler so much and he has been such a wonderful little miracle to our family. I love how he smiles and giggles every time he looks at me. Even though he is only 5 months old he has already taught our family so much! He is so strong and I know he will do well. I know I say this at the end of most of my posts but I am really, truly, so thankful for my family and I love each of them so very much! I hope everyone will try to spend more time just enjoying the company of your family. It will truly make you happy.
Thursday, March 22, 2012
Xyler's Birth
It has been a while since I have posted anything. We have had a house full of sickness and we still do! Poor Xavian has been fevering up from trying to cut 4 teeth at once and now he got the sickness that Scott and I have. Xyler has gotten it too. It is always hard on a mom when her child is sick and I am now finding it is even harder when your child has a CHD. I just hope we get this sickness out of our house and get everyone better asap! Xyler had a couple of nights where he did not sleep well from being so stuffy. Thank goodness last night went a lot better. Hopefully he will get better soon along with the rest of us.
Xyler is almost 5 months old and I just can't believe it! I guess I am a strange mom since I want time to go by fast and so far it is. I just want to get Xyler past his next surgery and then I think I will finally tell time to slow down. I can't help but to think of the night Xyler was born when I think about him being 5 months old.
I had to get up early to call into the Women's Center to see what time I needed to come in to be induced. This was at 6:00 AM, Monday morning on October 24th. When I called they told me that they did not have me on the list for that day. I couldn't believe it! my doctor's office had forgotten to call to put me on the list. I now had to wait for them to call my doctor when he got into his office. This was a few hours away and seemed like forever! They were going to induce me due to my platelet count being low. If it is too low I can't have an epidural and I really, really, really can't emphasize enough just how much I wanted an epidural. :)
Well......we finally got the call and were able to go in around 2:00 PM. I was disappointed that it was not earlier. I was so ready to not be pregnant anymore! I was worried that I would not have him early enough for our other kids to come see him. Now looking back I can see that it was meant to be the way that it was. I don't think it was an accident that my doctor's office forgot to call. I was meant to have the nurse that I did for a reason and this meant that I had to be their later than I had hoped for.
My labor was the best one I had ever had! I was only in labor for about 5 hours. During this time I had 3 different nurses. The last one I got, Nanci, is the one who was worried about how Xyler was breathing and asked someone to check his oxygen and everything. What a blessing she was. Anyway....I am getting ahead of myself. So, I was able to get an epidural and about an hour after I had gotten it Nanci came and checked me. I was dilated to a 6. Only about 15 minutes later I called Nanci back in since I was feeling a lot of pressure. I was ready to deliver. Nanci told me my doctor had just called and she had told him how I was only a six. She then had to go call him to get him there asap. I'm so glad my doctor lives close to the hospital. Xyler was ready and wanting to see the world and I was having a hard time trying to hold him back. My doctor came and hurried to get ready and then 2 small pushes later at 8:45 PM Xyler was here sporting a lot of dark hair and looking super cute. My doctor says that it was technically only one push since he had to hold Xyler back on the first one since he wasn't fully ready to catch him. :)
Xyler had the cord wrapped around his neck twice and he was really purple. They gave him some oxygen while he was getting cleaned up since he wasn't crying very good and sounded like he was struggling a bit to breath. He pinked up and started to breath and sound fine. When I held him he seemed fine. He just layed in my arms and looked up at me with his sweet dark eyes. The nurse that cleaned him up commented on how he seemed like a mellow baby and he really is. He ate a bit and then Scott held him. It was when Scott was holding him that I noticed how noisy he sounded. My other 3 kids had never sounded so noisy while breathing. Nanci came in and she noticed it too. She called a nurse up from NICU to check him out. That nurse looked at him and said that his coloring looked good and his nostrils weren't flaring so she thought he was ok. Xyler was still noisy and Nanci still didn't like it. She made sure to tell the nurse upstairs in the nursery to check him out. That is another nurse we were blessed to have.
A while after I was moved upstairs to my room the nursery nurse came in to bathe Xyler and then take him away to check him out. She left with my little Xyler and us thinking everything was fine. A little bit later she braught him back and I will never forget what she said. She came up to me and told us that she didn't have good newa. She then told us about Xyler's oxygen being low and that she heard a murmur in his heart. There are really no words to describe all the thoughts and feelings that you have when you hear that. She handed me Xyler so I could hold him one more time and give him a hug and kiss before he was taken to the NICU. I hugged him tight and kissed him while crying the whole time. I just couldn't believe my baby who had seemed healthy before had something wrong with his heart. After she left I just turned to Scott and cried. I think he was in shock too and didn't quite know what to think.
A little bit later our pediatrician came in to tell us about Xyler. This was another blessing that our ped. was the doctor on call. It helped us out a lot to have someone there that we knew and trusted. He told us that they were going to have an ECHO done on Xyler so that they can see what is wrong and know which hospital he needed to go to. He talked to us for a bit and after he left I just cried. I just couldn't believe this was happening. You hit a moment where you just wonder if you are dreaming, or I guess you just hope that you are. It was late but I decided to call my mom to let her know that something was wrong and that Scott was not going to be home anytime soon since she was staying at our house watching our other kids. I was worried about my other kids at home and just wanted my mom to keep an ear out for Xavian. We just didn't know what was going to happen.
When I was finally able to go down to the NICU, I made sure I walked since I knew that I was not going to let them keep me there after Xyler was taken to a different hospital. The ECHO showed that he had a hole and that he needed to go to PCMC. Everything that our doctor had told us was so hard to understand. It wasn't until we were shown pictures at PCMC that we finally started to understand what was wrong. After Xyler was life flighted Scott and I hurried home after gathering up my stuff so that we could pack some things for Scott and let my mom know what was going on.
I walked in the door and went straight to my mother's arms and just cried. I still could not believe what was happening. We told her what we knew and then hurried to get things packed. I asked my mom if her and my dad could bring our kids down later so that they could meet their new little brother. This was very important to me since I had no idea what was going to happen to Xyler. It was such a scary time for me. My parents were so good to bring them down and to take care of them. My mom was so wonderful at taking care of our kids during that time and after. My sister Heather also took them for the weekend and brought them to the hospital the day of Xyler's surgery. I'm so thankful for all of their help.
These are the things I think of when I think of the day Xyler was born. It was an experience Scott and I will never forget. It was a very scary time but we are so grateful to have him in our family and doing as well as he is. He has been such a blessing to our family. It is so heart warming to see how much our other kids love their baby brother and care about what he is going through. Xyler always smiles when one of them comes up to him to talk to him. I have learned that with trials comes great blessings and we have been blessed with many of both. I love my family so much and am so grateful for each and every one of them!
Xyler is almost 5 months old and I just can't believe it! I guess I am a strange mom since I want time to go by fast and so far it is. I just want to get Xyler past his next surgery and then I think I will finally tell time to slow down. I can't help but to think of the night Xyler was born when I think about him being 5 months old.
I had to get up early to call into the Women's Center to see what time I needed to come in to be induced. This was at 6:00 AM, Monday morning on October 24th. When I called they told me that they did not have me on the list for that day. I couldn't believe it! my doctor's office had forgotten to call to put me on the list. I now had to wait for them to call my doctor when he got into his office. This was a few hours away and seemed like forever! They were going to induce me due to my platelet count being low. If it is too low I can't have an epidural and I really, really, really can't emphasize enough just how much I wanted an epidural. :)
Well......we finally got the call and were able to go in around 2:00 PM. I was disappointed that it was not earlier. I was so ready to not be pregnant anymore! I was worried that I would not have him early enough for our other kids to come see him. Now looking back I can see that it was meant to be the way that it was. I don't think it was an accident that my doctor's office forgot to call. I was meant to have the nurse that I did for a reason and this meant that I had to be their later than I had hoped for.
My labor was the best one I had ever had! I was only in labor for about 5 hours. During this time I had 3 different nurses. The last one I got, Nanci, is the one who was worried about how Xyler was breathing and asked someone to check his oxygen and everything. What a blessing she was. Anyway....I am getting ahead of myself. So, I was able to get an epidural and about an hour after I had gotten it Nanci came and checked me. I was dilated to a 6. Only about 15 minutes later I called Nanci back in since I was feeling a lot of pressure. I was ready to deliver. Nanci told me my doctor had just called and she had told him how I was only a six. She then had to go call him to get him there asap. I'm so glad my doctor lives close to the hospital. Xyler was ready and wanting to see the world and I was having a hard time trying to hold him back. My doctor came and hurried to get ready and then 2 small pushes later at 8:45 PM Xyler was here sporting a lot of dark hair and looking super cute. My doctor says that it was technically only one push since he had to hold Xyler back on the first one since he wasn't fully ready to catch him. :)
Xyler had the cord wrapped around his neck twice and he was really purple. They gave him some oxygen while he was getting cleaned up since he wasn't crying very good and sounded like he was struggling a bit to breath. He pinked up and started to breath and sound fine. When I held him he seemed fine. He just layed in my arms and looked up at me with his sweet dark eyes. The nurse that cleaned him up commented on how he seemed like a mellow baby and he really is. He ate a bit and then Scott held him. It was when Scott was holding him that I noticed how noisy he sounded. My other 3 kids had never sounded so noisy while breathing. Nanci came in and she noticed it too. She called a nurse up from NICU to check him out. That nurse looked at him and said that his coloring looked good and his nostrils weren't flaring so she thought he was ok. Xyler was still noisy and Nanci still didn't like it. She made sure to tell the nurse upstairs in the nursery to check him out. That is another nurse we were blessed to have.
A while after I was moved upstairs to my room the nursery nurse came in to bathe Xyler and then take him away to check him out. She left with my little Xyler and us thinking everything was fine. A little bit later she braught him back and I will never forget what she said. She came up to me and told us that she didn't have good newa. She then told us about Xyler's oxygen being low and that she heard a murmur in his heart. There are really no words to describe all the thoughts and feelings that you have when you hear that. She handed me Xyler so I could hold him one more time and give him a hug and kiss before he was taken to the NICU. I hugged him tight and kissed him while crying the whole time. I just couldn't believe my baby who had seemed healthy before had something wrong with his heart. After she left I just turned to Scott and cried. I think he was in shock too and didn't quite know what to think.
A little bit later our pediatrician came in to tell us about Xyler. This was another blessing that our ped. was the doctor on call. It helped us out a lot to have someone there that we knew and trusted. He told us that they were going to have an ECHO done on Xyler so that they can see what is wrong and know which hospital he needed to go to. He talked to us for a bit and after he left I just cried. I just couldn't believe this was happening. You hit a moment where you just wonder if you are dreaming, or I guess you just hope that you are. It was late but I decided to call my mom to let her know that something was wrong and that Scott was not going to be home anytime soon since she was staying at our house watching our other kids. I was worried about my other kids at home and just wanted my mom to keep an ear out for Xavian. We just didn't know what was going to happen.
When I was finally able to go down to the NICU, I made sure I walked since I knew that I was not going to let them keep me there after Xyler was taken to a different hospital. The ECHO showed that he had a hole and that he needed to go to PCMC. Everything that our doctor had told us was so hard to understand. It wasn't until we were shown pictures at PCMC that we finally started to understand what was wrong. After Xyler was life flighted Scott and I hurried home after gathering up my stuff so that we could pack some things for Scott and let my mom know what was going on.
I walked in the door and went straight to my mother's arms and just cried. I still could not believe what was happening. We told her what we knew and then hurried to get things packed. I asked my mom if her and my dad could bring our kids down later so that they could meet their new little brother. This was very important to me since I had no idea what was going to happen to Xyler. It was such a scary time for me. My parents were so good to bring them down and to take care of them. My mom was so wonderful at taking care of our kids during that time and after. My sister Heather also took them for the weekend and brought them to the hospital the day of Xyler's surgery. I'm so thankful for all of their help.
These are the things I think of when I think of the day Xyler was born. It was an experience Scott and I will never forget. It was a very scary time but we are so grateful to have him in our family and doing as well as he is. He has been such a blessing to our family. It is so heart warming to see how much our other kids love their baby brother and care about what he is going through. Xyler always smiles when one of them comes up to him to talk to him. I have learned that with trials comes great blessings and we have been blessed with many of both. I love my family so much and am so grateful for each and every one of them!
Tuesday, March 6, 2012
Cold, Cold Go Away!!!
Poor Xyler has been dealing with a cold for over a month now. I was hoping that it was starting to go away the other day but it has seemed worse today! I took Xyler in to his pediatrician for his synagis(RSV) shot and I asked them about his cold. Since he isn't getting any better they sent me home with a nebulizer so that I can give breathing treatments. They told me he would probably cry since I have to hold a mask over his mouth and nose so he can breath it in. They said it is good if he does cry since he will take in deeper breaths from crying. Well....I gave him his first treatment tonight and he didn't cry until the last minute of it. Go figure, right! Trust Xyler to not cry when it is good for him to cry. :) He is such a good baby so I'm really not surprised.
My poor Xavian who is 19 months old has had a fever the last couple of days. It wasn't too bad today and after I gave him medicine he seemed to do better. I still felt bad for having to drag him to the doctor. I feel so worn out after a visit to the pediatrician. I'm sure people watching just have to laugh at me since I am trying to juggle everything. It is a lot of work to try and carry a baby carrier and baby , diaper bag, oxygen tank and try to hang on to a 19 month old. When I bend down a bit to grab Xavian's hand either the diaper bag or oxygen tank slips off of my shoulder and knocks poor Xavian down most of the time. I think he runs from me now just so that he won't get knocked down. :)
Poor Xyler has had so many shots that he now knows what is going to happen once I lay him down on the table. He cries every time now, even when I'm just laying him down to undress him for his weight check. I feel so bad for him! He only has one more synagis shot and then he is done. He has only gained 1oz since since his 4 month check up two weeks ago. I would like to see more but at least it's gaining and not losing. I have tried to feed him rice cereal a couple of times and so far it has not gone very well. When I put some in his mouth he will just push his tongue forward and keeps doing it so then the food get;s pushed out. I hope he gets the hang of it soon because he could use the calories from it.
My poor Xavian who is 19 months old has had a fever the last couple of days. It wasn't too bad today and after I gave him medicine he seemed to do better. I still felt bad for having to drag him to the doctor. I feel so worn out after a visit to the pediatrician. I'm sure people watching just have to laugh at me since I am trying to juggle everything. It is a lot of work to try and carry a baby carrier and baby , diaper bag, oxygen tank and try to hang on to a 19 month old. When I bend down a bit to grab Xavian's hand either the diaper bag or oxygen tank slips off of my shoulder and knocks poor Xavian down most of the time. I think he runs from me now just so that he won't get knocked down. :)
Poor Xyler has had so many shots that he now knows what is going to happen once I lay him down on the table. He cries every time now, even when I'm just laying him down to undress him for his weight check. I feel so bad for him! He only has one more synagis shot and then he is done. He has only gained 1oz since since his 4 month check up two weeks ago. I would like to see more but at least it's gaining and not losing. I have tried to feed him rice cereal a couple of times and so far it has not gone very well. When I put some in his mouth he will just push his tongue forward and keeps doing it so then the food get;s pushed out. I hope he gets the hang of it soon because he could use the calories from it.
I put Xyler in the highchair tonight and had to take a picture. He looks little in their compared to his brother and yet he also looks so grown up. I just love this picture!
Sunday, February 26, 2012
Life Flight
In my first post, I gave a short account of what we went through when Xyler was born and about the CHD he has. I could have written a novel in that post if I wrote about everything. I didn't want to give people too much to read in that first post, but I have decided to write about what we went through in segments. It's amazing how, even though it has been 4 months, those thoughts and feelings are still so close to the surface, and will come out from time to time from something that will spark my memory of what happened.
Our pediatrician's office is right by the hospital. When I leave from his office I always drive on the road that goes by the ER and through the parking lot. It also passes the landing pad for life flight. After Xyler's checkup on Friday I tookmy usual exit route to go home, of course this brought me past the landing pad and all of the emotions came back to me.
I would always drive by there before and look at that pad and think how hard it must be for people when they have to be life flighted, or have a child or loved one that needed to be. I never could have imagined that I would one day have a child be life flighted, especially my newborn baby.
As we sat in the NICU at Logan Regional Hospital, waiting for the life flight team to get there, I kept thinking about how on earth I was going to handle having my baby be taken away from me and fly in a helicopter. I wouldn't be able to see him for a couple of hours once they took off and I wouldn't know if they made it there ok until we got there. I just sat in a chair holding Xyler and just cried. It just felt like too much for me to handle! I had just had a baby, which makes you emotional already, then to have something wrong with my baby made it so hard to process everything. To find out something was wrong with his heart and not fully understand what, was so scary! At this point we had no idea if he was going to live or not, so to not be able to be with him was unbearable!
My eyes were red and sore from crying so much, in just a short time. The kleenexes they have at hospitals are not soft, by any means. They had rubbed my eyes raw from wiping the tears away, but I didn't care, I just kept crying. I was trying to hold them back a bit so that I wouldn't just be hysterically(I hope that's a word) crying. I thought I did ok and yet I still apologized just for crying. I now look back and think "Why apologize?" Crying showed just how much I cared for my baby and how scared I was, which is ok. He may have only been born a few hours before but my heart was already filled with so much love for him. The nurses in the NICU were so kind to us and they made sure I had a box of kleenexes right by me. I want to say thank you to them for being so great! They even took pictures and made us two scrapbook pages.
When the life flight team came, I was sad to have to hand Xyler over to them. I didn't know when I would be able to hold him again. They took him from my arms and laid him down so that they could get him ready to be transported down to Primary Children's. They had to start giving him a medicine through his IV before they could take him, and for the life of me I cannot remember the name of this medicine. This medicine is for keeping a valve on your heart open that closes after you are born. This was how he was getting blood to his lungs so it was very important that it stayed open.
Once they had everything ready they picked Xyler up and put him in the bed/case(don't know the right word for it). When they did, his IV that was in his hand came out. He had to have two working IV's before they could transport him so they had to put an IV in. It was horrible! They poked him so many times, and tried in several different places to put in a new IV and it just wasn't working! I couldn't imagine trying to put an IV in on such little veins so I know it was difficult, but it was so hard to watch. It took them about 20 min. before they finally succeeded in getting and IV in. I'm just glad the one in his head was fine. I need to thank the life flight team also, for taking such good care of my baby. They were great at explaining to us what they were doing. They also made sure we got to kiss Xyler goodbye.
Off they went with our baby, to wheel him out to the helicopter. Scott pushed me in a wheelchair as a nurse walked us out with them. This was around 4:00 AM. On our way out I saw my OBG doctor. He gave me a hug and told us how sorry he was. I must say, I think he is just one of the greatest doctors out there! He truly cares for his patients and their families. After we talked to him we hurried and caught up with Xyler and went outside. It was cold and lightly sprinkling but I didn't care. Everyone kept piling blankets on me on our way out and I kept telling them I was fine. I couldn't feel the cold. All I could feel was my heart aching for my baby as I watched him fly off into the sky, not knowing what his future held.
Now when I drive by that landing pad at the hospital I have different thoughts. Now I do know what it is like to have a child need to be life flighted. I do know just how scary it is, but I also know how it is a blessing that we have it, and you will handle anything to help your child. It is also a blessing that we have such wonderful trained professionals who make up the life flight team. I do cry when I see it since all of those emotions come rushing back to me from that early morning. I wonder how long it will be before I can go past there without having those emotions come back to me as strong as they are. I know they will never fully go away, but with time they will fade a bit.
Our pediatrician's office is right by the hospital. When I leave from his office I always drive on the road that goes by the ER and through the parking lot. It also passes the landing pad for life flight. After Xyler's checkup on Friday I tookmy usual exit route to go home, of course this brought me past the landing pad and all of the emotions came back to me.
I would always drive by there before and look at that pad and think how hard it must be for people when they have to be life flighted, or have a child or loved one that needed to be. I never could have imagined that I would one day have a child be life flighted, especially my newborn baby.
As we sat in the NICU at Logan Regional Hospital, waiting for the life flight team to get there, I kept thinking about how on earth I was going to handle having my baby be taken away from me and fly in a helicopter. I wouldn't be able to see him for a couple of hours once they took off and I wouldn't know if they made it there ok until we got there. I just sat in a chair holding Xyler and just cried. It just felt like too much for me to handle! I had just had a baby, which makes you emotional already, then to have something wrong with my baby made it so hard to process everything. To find out something was wrong with his heart and not fully understand what, was so scary! At this point we had no idea if he was going to live or not, so to not be able to be with him was unbearable!
My eyes were red and sore from crying so much, in just a short time. The kleenexes they have at hospitals are not soft, by any means. They had rubbed my eyes raw from wiping the tears away, but I didn't care, I just kept crying. I was trying to hold them back a bit so that I wouldn't just be hysterically(I hope that's a word) crying. I thought I did ok and yet I still apologized just for crying. I now look back and think "Why apologize?" Crying showed just how much I cared for my baby and how scared I was, which is ok. He may have only been born a few hours before but my heart was already filled with so much love for him. The nurses in the NICU were so kind to us and they made sure I had a box of kleenexes right by me. I want to say thank you to them for being so great! They even took pictures and made us two scrapbook pages.
When the life flight team came, I was sad to have to hand Xyler over to them. I didn't know when I would be able to hold him again. They took him from my arms and laid him down so that they could get him ready to be transported down to Primary Children's. They had to start giving him a medicine through his IV before they could take him, and for the life of me I cannot remember the name of this medicine. This medicine is for keeping a valve on your heart open that closes after you are born. This was how he was getting blood to his lungs so it was very important that it stayed open.
Once they had everything ready they picked Xyler up and put him in the bed/case(don't know the right word for it). When they did, his IV that was in his hand came out. He had to have two working IV's before they could transport him so they had to put an IV in. It was horrible! They poked him so many times, and tried in several different places to put in a new IV and it just wasn't working! I couldn't imagine trying to put an IV in on such little veins so I know it was difficult, but it was so hard to watch. It took them about 20 min. before they finally succeeded in getting and IV in. I'm just glad the one in his head was fine. I need to thank the life flight team also, for taking such good care of my baby. They were great at explaining to us what they were doing. They also made sure we got to kiss Xyler goodbye.
Off they went with our baby, to wheel him out to the helicopter. Scott pushed me in a wheelchair as a nurse walked us out with them. This was around 4:00 AM. On our way out I saw my OBG doctor. He gave me a hug and told us how sorry he was. I must say, I think he is just one of the greatest doctors out there! He truly cares for his patients and their families. After we talked to him we hurried and caught up with Xyler and went outside. It was cold and lightly sprinkling but I didn't care. Everyone kept piling blankets on me on our way out and I kept telling them I was fine. I couldn't feel the cold. All I could feel was my heart aching for my baby as I watched him fly off into the sky, not knowing what his future held.
Now when I drive by that landing pad at the hospital I have different thoughts. Now I do know what it is like to have a child need to be life flighted. I do know just how scary it is, but I also know how it is a blessing that we have it, and you will handle anything to help your child. It is also a blessing that we have such wonderful trained professionals who make up the life flight team. I do cry when I see it since all of those emotions come rushing back to me from that early morning. I wonder how long it will be before I can go past there without having those emotions come back to me as strong as they are. I know they will never fully go away, but with time they will fade a bit.
This is a pic of Xyler when I was able to hold him before the life flight team came. He was so calm through all of it. He was only a few hours old but we could already see that he was a strong boy.
Friday, February 24, 2012
4 Months Old Today
Xyler is 4 months old today. It's amazing how fast time can seem to go by and yet seem slow at the same time. I guess I am not one of those moms who want their baby to stay a baby when it is their last baby. We don't plan on having anymore kids but I'm not wanting Xyler to stay a little baby. I want him to get older and chub up so that hopefully it will help him to recover from his next surgery. After his next surgery then time can slow down.
I can't wait to have him not need oxygen anymore! That will be a great day to be able to pick him up and carry him all over the house without worrying about how far the oxygen tubing goes. I think I will just pick him up and do laps around the house on that day, just to make up for not being able to now. :) This will happen after his next surgery too.
So, today Xyler went in for his 4 month check up and had to get 2 shots....poor kid. He has been poked by a needle so many times in his short little life, I didn't blame him for crying so hard this time. He weighed in at 13lbs 5oz (20%) and is 25 1/4 inches long (70%). His head measured in the 8%.....so little. The doctor was happy with growth and said he is doing well. Those are good words to hear. Now, if only he would get over his cold! We have had him sleep in his car seat throughout this cold and I can't wait to be able to have him sleep in his crib again.
Now that he is 4 months old the doctor said I can start him on rice cereal. So I will start the cereal in a couple of days and hopefully it will go well. I love it when they take right to it and are not super messy. :) I guess I will find out soon.
I can't wait to have him not need oxygen anymore! That will be a great day to be able to pick him up and carry him all over the house without worrying about how far the oxygen tubing goes. I think I will just pick him up and do laps around the house on that day, just to make up for not being able to now. :) This will happen after his next surgery too.
So, today Xyler went in for his 4 month check up and had to get 2 shots....poor kid. He has been poked by a needle so many times in his short little life, I didn't blame him for crying so hard this time. He weighed in at 13lbs 5oz (20%) and is 25 1/4 inches long (70%). His head measured in the 8%.....so little. The doctor was happy with growth and said he is doing well. Those are good words to hear. Now, if only he would get over his cold! We have had him sleep in his car seat throughout this cold and I can't wait to be able to have him sleep in his crib again.
Now that he is 4 months old the doctor said I can start him on rice cereal. So I will start the cereal in a couple of days and hopefully it will go well. I love it when they take right to it and are not super messy. :) I guess I will find out soon.
Xyler
On October 24, 2011 our 4th child, Xyler, was born. We held him in our arms and made plans for when his siblings would come see him and when we would take him home. He seemed so perfect and precious. A few hours later our life was forever changed. Little Xyler had a heart defect.
Everything, after hearing that something was wrong with his heart just seems like a big blurr. He was life flighted to Primary Children's Medical Center 7 hours after he was born. My husband and I gathered my stuff and left to go down to be with our new baby. It's hard to describe just how horrific that ride was. It is about a 90 minute drive to get to Primary Children's from where we live, but it felt like forever.
We later found out that Xyler has Tetralogy of Fallot. http://en.wikipedia.org/wiki/Tetralogy_of_Fallot I felt like I was dreaming and I just wanted to wake up! The thought of my son having to have heart surgeries the rest of his life was so hard for me. Don't get me wrong, I am so grateful for our technology and these wonderful doctors who work miracles and that they could save my sons life, but it's hard to think of your child having to go through it again, and again, and again.
Xyler had his first surgery when he was 3 days old. It was so hard to just sit and wait during it. It took about 5 hours for everything. This surgery they put in a BT Shunt and put a patch in his pulmonary arteries to widen them where they were narrow. They do the shunt so that his heart and him can get bigger before they fix the problems in his heart. We are guessing he will have his second surgery in a couple of months.
Xyler was truly amazing after his surgery! He was so strong and did so well that we were able to take him home 6 days after his surgery. He had a feeding tube and was on oxygen when we brought him home. I was able to take the feeding tube out a week later. He is still on oxygen and we figure he will be until after his next surgery, but I figure that is better than other problems he could have.
I keep him at home and away from people except for when he goes to his doctor's appointments, which was a lot at first but has slowed down now. We don't want him to catch anything and so we take these precautions. He has had 3 synagis shots (for rsv) and will have another one next week. He has had a little cold for a couple of weeks that I hope will go away soon! It is always hard and scary when your baby gets sick but I feel like it is 10 times more stressful when your baby has something wrong with them.
I go a little crazy sometimes from being home all the time and from all the stress. I'm hoping blogging is just the outlet I need. :) I have 3 other kids who help keep me busy. They are Xander who is 8 almost 9, Nika who is 7, and Xavian who is 18 months. They have done really well with everything that has happened since Xyler was born. It was a bit hard for my 18 month old when we were at the hospital with Xyler, but it's amazing how fast kids adapt. They love their baby brother and always pray for him to get better. I am truly amazed and proud of their strength and love.
We later found out that Xyler has Tetralogy of Fallot. http://en.wikipedia.org/wiki/Tetralogy_of_Fallot I felt like I was dreaming and I just wanted to wake up! The thought of my son having to have heart surgeries the rest of his life was so hard for me. Don't get me wrong, I am so grateful for our technology and these wonderful doctors who work miracles and that they could save my sons life, but it's hard to think of your child having to go through it again, and again, and again.
Xyler had his first surgery when he was 3 days old. It was so hard to just sit and wait during it. It took about 5 hours for everything. This surgery they put in a BT Shunt and put a patch in his pulmonary arteries to widen them where they were narrow. They do the shunt so that his heart and him can get bigger before they fix the problems in his heart. We are guessing he will have his second surgery in a couple of months.
Xyler was truly amazing after his surgery! He was so strong and did so well that we were able to take him home 6 days after his surgery. He had a feeding tube and was on oxygen when we brought him home. I was able to take the feeding tube out a week later. He is still on oxygen and we figure he will be until after his next surgery, but I figure that is better than other problems he could have.
I go a little crazy sometimes from being home all the time and from all the stress. I'm hoping blogging is just the outlet I need. :) I have 3 other kids who help keep me busy. They are Xander who is 8 almost 9, Nika who is 7, and Xavian who is 18 months. They have done really well with everything that has happened since Xyler was born. It was a bit hard for my 18 month old when we were at the hospital with Xyler, but it's amazing how fast kids adapt. They love their baby brother and always pray for him to get better. I am truly amazed and proud of their strength and love.
We feel so blessed to have Xyler in our family. We have had many blessings happen to us since he was born. He is such a happy, strong baby who is growing so fast. If it wasn't for his oxygen and scar you would never know that he has gone through as much as he has. He has taught us so much about life and love and miracles.
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