This time of year is a very emotional time for me, as memories resurface, and all of the thoughts and feelings that go with them come rushing back to me. On the 24th we celebrated Xyler's 2nd birthday. What a great day it was. I consider every birthday we celebrate with him a blessing. With the wonderful, happy feelings, comes all the feelings from 2 years ago. The happy joy of holding, what I thought was my perfectly healthy new baby boy, to the shock and confusion while holding my baby with the broken heart. Giving him a hug and kiss before life flight took him. It may sound weird, but in some way's I felt like I had 2 baby's that night. A healthy boy and a boy with a broken heart.
The next few days I mourned the baby that I thought was healthy. In my state of shock I kept thinking about how I should have been taking him home instead of sitting at Primary Children's, seeing him hooked up to machines and hearing them beep all day long. It was a sweet nurse that Xyler had, who told me I was mourning the baby I thought was healthy. It made so much sense after she said that, and helped me to finish mourning and cope with the reality my sweet baby faced.
Today marks the 2 year anniversary of his first open heart surgery. My sweet baby was only 3 1/2 days old when I had to watch them roll him away, not knowing what the outcome was going to be. We had met his surgeon, Dr. Kaza, the night before. He was so kind and explained everything to us. I felt a bit better after meeting him and talking to him about everything. He also told us that Xyler had a fan club of people who liked his name. :)
After, we ran home to pick up our other 3 kids. We wanted them to be able to see Xyler before his surgery, just in case something happened, and then they were going to stay at my sister's for the next few days. Xavian was only 14 1/2 months old and wasn't able to see Xyler the day after he was born, since the CICU doesn't allow kids under 2. They let us bring him in, so that he could see him for the first time. We were able to have our first family pic with Xyler. Xyler was intibated so we couldn't hold him but my kids were able to give him a kiss. It was a special time.
The next morning we got to Xyler's bed around 6:30. They were going to take him back for surgery around 7. Scott and Nate, the night nurse, gave Xyler a blessing. After Dr. Kaza came to talk to us again before the surgery. He was so sweet and worried about how I would react seeing Xyler after surgery. He asked our nurse to show us a baby that just had surgery so that we would know what to expect. Before he left he told us that he would treat him as if he were his own child. Sweeter words have never been spoken to this mother's ears. It was just what I needed to hear.
Saying goodbye is always the hardest part. I couldn't stop crying as they wheeled him away after I gave him several kisses. Looking back it's still hard to describe all of the emotions and feelings that I had. I think I was still in a state of shock and disbelief. As we sat down in the waiting room, I just couldn't believe our little baby was having open heart surgery. It still seemed like a nightmare that I couldn't wake up from. I was so anxious the whole time to have an update. They let us know when they started, put him on heart and lung bypass, took him off and were closing him. Everything took about 5 hours.
All I felt when I got so see my baby was relief! I was so thankful and grateful that he made it. He had iv's everywhere and other tubes coming out of places, but these didn't scare me like the dr was worried about. I knew they were helping him and all that I cared about was that he made it. His nurse kept watching me and told me that I was handling it better than she thought I would. She is our favorite nurse and this was her second time taking care of Xyler. I had been such an emotional wreck all of the previous days, I think that is why they thought I would not handle it well. Who can blame me for being super emotional. I had just had a baby and 8 hours after having him he was taken away and I was heading down to Primary Children's to be with him. I didn't get any time to rest and had all of the hormones from having a baby running through me. I was a walking train wreck until I saw that he was still alive. I knew the next few days were critical but all I could think about was that my baby was alive!
Xyler showed everyone how awesome he is and came home 6 days later. The doctors and nurses were so impressed with how well he was doing. He showed us then and still shows us how strong and amazing he is. Sometimes I wish I could forget all of these thoughts and feelings but then I realize I wouldn't know how truly blessed I am if I didn't remember. My testimony grew so much during those 10 days Xyler was in the hospital and continues to grow all of the time. How blessed and thankful I am for forever families and the gospel. This heart journey can be very hard and you never know what to expect. I am so thankful for the IHH group that I am a part of and for all of the other heart moms and I have had the privilege of meeting and becoming friends with. They are amazing and help me so much!
Today I will remember the hard memories but I will also remember all of the blessings in my life. My kids are my life. I love each of them so much! I am truly blessed to have them and my amazing husband in my life.
Monday, October 28, 2013
Saturday, August 17, 2013
Xyler has once again kept us on our toes. Thank goodness though, everything is ok. About a month ago I had stopped giving him his zantac to see how he did. I didn't want to be giving it to him if he no longer needed it. After about a week, we started noticing that he would cough a lot every time he would eat. He would cough so bad that he would gag to the point you would think he was going to throw up. I put him back on his zantac to see if that was the problem.
He still continued to cough so I called his pediatrician. They decided that he needed to have a swallow study done, to make sure he wasn't aspirating. Let me just tell you that it was not fun at all! Poor Xyler has been through so much, and is at the age where he is more aware and hates having anything done. They had to strap him into a chair and place him by the x-ray machine. They then had me try to feed him different kinds of food with bariliun in it, so that they could see it on the x-ray as he swallowed the food. Xyler was screaming and would just spit out the food.
As a heart mom I have had to pin my child down more times than I can count for him to have blood drawn, iv's placed, x-rays done and many other things. It is so hard to do this while your child is screaming. I have to tell myself over and over that he needs these things done and that they are to help him. I also have to kind of blank out my mind, so that I don't scream at the people to leave my baby alone, and so that I don't break down and cry myself. It sucks!!! It really does and is so hard to watch him go through things over and over and over again.
Well, this was one of those times that I had to do that. Poor Xyler screamed through the whole thing and didn't stop until he was held tightly in my arms. They only got a couple of shots of him swallowing, but at least they got some. The good news is that he is not aspirating. They think he just has really bad reflex that is causing him to cough. His chest x-ray showed something with his lungs. I cannot for the life of me remember the word but it had something to do with what happens with asthma. Hopefully he does not have asthma. His pediatrician was telling us that there have been some bad viruses going around this summer where they have caused issues like reflex. He thinks Xyler got one and that is also why his lungs are looking the way that they are. This made sense to me since he has had some messy diapers lately. I have upped his zantac dose and he seems to be doing a lot better. I am so glad that it was an easy fix! I do feel guilty for taking him off of zantac for that short time. I feel like it's all my fault that he had so many issues and was put through more torture. He is such a tough kid.
Later that day Xavian had his 3 year check up and it was so nice. No shots!!! He checked out great! Xander also had an eye appointment that day. He now has contacts and a new pair of glasses. He has worn glasses for the last two years so we decided to have him try out contacts. He loves them and is doing great with them. It was a busy day for us but glad to have the appointments done.
Yesterday my shih tzu, Maddy, had puppies! This is her second litter of puppies. She had 4 boys and 1 girl. She had them a week early but everything went well and the pups are doing great. I love when she has the pups. I think it is so amazing to watch as they are born and to see the miracle of life. I can fully understand why the doctors and nurses who deliver babies do what they do. Truly amazing! The first few days you have to practically drag Maddy out to eat and go outside to do her business. After those few days is when she will start to leave them for a bit in between feedings. You can tell she is needing a break. Who can blame her! It seems like the pups are eating 24/7.
They are super cute and little. The smallest one weighed 5oz and the biggest one 8oz. My kids love it when she has pups. Maddy is a great mom and takes great care of her pups. The first few weeks are super easy for me. It's not until they are weaned when I get super busy taking care of them. Its a good thing they are cute, and that we only keep them until they are about 8 weeks old. :)
He still continued to cough so I called his pediatrician. They decided that he needed to have a swallow study done, to make sure he wasn't aspirating. Let me just tell you that it was not fun at all! Poor Xyler has been through so much, and is at the age where he is more aware and hates having anything done. They had to strap him into a chair and place him by the x-ray machine. They then had me try to feed him different kinds of food with bariliun in it, so that they could see it on the x-ray as he swallowed the food. Xyler was screaming and would just spit out the food.
As a heart mom I have had to pin my child down more times than I can count for him to have blood drawn, iv's placed, x-rays done and many other things. It is so hard to do this while your child is screaming. I have to tell myself over and over that he needs these things done and that they are to help him. I also have to kind of blank out my mind, so that I don't scream at the people to leave my baby alone, and so that I don't break down and cry myself. It sucks!!! It really does and is so hard to watch him go through things over and over and over again.
Well, this was one of those times that I had to do that. Poor Xyler screamed through the whole thing and didn't stop until he was held tightly in my arms. They only got a couple of shots of him swallowing, but at least they got some. The good news is that he is not aspirating. They think he just has really bad reflex that is causing him to cough. His chest x-ray showed something with his lungs. I cannot for the life of me remember the word but it had something to do with what happens with asthma. Hopefully he does not have asthma. His pediatrician was telling us that there have been some bad viruses going around this summer where they have caused issues like reflex. He thinks Xyler got one and that is also why his lungs are looking the way that they are. This made sense to me since he has had some messy diapers lately. I have upped his zantac dose and he seems to be doing a lot better. I am so glad that it was an easy fix! I do feel guilty for taking him off of zantac for that short time. I feel like it's all my fault that he had so many issues and was put through more torture. He is such a tough kid.
Later that day Xavian had his 3 year check up and it was so nice. No shots!!! He checked out great! Xander also had an eye appointment that day. He now has contacts and a new pair of glasses. He has worn glasses for the last two years so we decided to have him try out contacts. He loves them and is doing great with them. It was a busy day for us but glad to have the appointments done.
Yesterday my shih tzu, Maddy, had puppies! This is her second litter of puppies. She had 4 boys and 1 girl. She had them a week early but everything went well and the pups are doing great. I love when she has the pups. I think it is so amazing to watch as they are born and to see the miracle of life. I can fully understand why the doctors and nurses who deliver babies do what they do. Truly amazing! The first few days you have to practically drag Maddy out to eat and go outside to do her business. After those few days is when she will start to leave them for a bit in between feedings. You can tell she is needing a break. Who can blame her! It seems like the pups are eating 24/7.
They are super cute and little. The smallest one weighed 5oz and the biggest one 8oz. My kids love it when she has pups. Maddy is a great mom and takes great care of her pups. The first few weeks are super easy for me. It's not until they are weaned when I get super busy taking care of them. Its a good thing they are cute, and that we only keep them until they are about 8 weeks old. :)
The cute pups!
Thursday, August 8, 2013
Happy 3rd Birthday Xavian!
Xavian turned 3 on August 02. I still can't believe he is 3 already! He is such a fun kid. He was a super easy/good baby that always liked to laugh. He still loves to laugh and likes to make us laugh. He is still a good kid that can occasionally get into mischief. :) We are trying to get him potty trained, and what a chore that is. Xavian is one where, he has to fully decide he wants to do something before he fully does it. I am just trying to have patience with him. He really is a fun, good kid. What a blessing he has been in our lives. We love him so much!
On his birthday Xavian woke up and opened his presents not long after. He loves his presents! He got a train table with two train sets, a medical bag with medical tools, play tools and a new outfit. It was hard to get him to do anything all day because all that he wanted to do was play with his new toys. My other 3 kids had the same problem too, especially the older two! :)
That night some family came over to help celebrate his birthday with cake and ice cream. He had a blast! We just ate outside, and it was so nice to sit and visit with family. I love nice summer evenings when you can sit and enjoy being outside. Xavian and Xyler cared more about running around playing than they did about eating the cake and ice cream. It was fun to see them having fun. What a great day it was! I think Xavian really enjoyed it.
On his birthday Xavian woke up and opened his presents not long after. He loves his presents! He got a train table with two train sets, a medical bag with medical tools, play tools and a new outfit. It was hard to get him to do anything all day because all that he wanted to do was play with his new toys. My other 3 kids had the same problem too, especially the older two! :)
That night some family came over to help celebrate his birthday with cake and ice cream. He had a blast! We just ate outside, and it was so nice to sit and visit with family. I love nice summer evenings when you can sit and enjoy being outside. Xavian and Xyler cared more about running around playing than they did about eating the cake and ice cream. It was fun to see them having fun. What a great day it was! I think Xavian really enjoyed it.
This is Xavian when he was a few days old.
My cute 3 year old!
Saturday, July 20, 2013
On June 6, Xyler gave us quite the scare by having a severe allergic reaction. He has never had anything like it happen before so it was pretty scary for me. Xavian and Xyler were having flavored marshmallows for a snack. I hadn't given them these for a snack for a few months but I'm sure they had has some in nursery just a couple of weeks before. Xyler had only ever been to nursery a couple of times, but I know that is one of the favorite snacks for kids in there since I have served in nursery before. Xyler normally doesn't eat very many marshmallow's. Xavian is the one who eats the most, but that day Xyler was eating a lot of them. It was early in the evening when I gave them to them. I was still trying to figure out what to make for dinner so I knew that we would be having a late dinner. Scott still wasn't home from work yet when the boys were eating their snack.
I noticed Xyler would cough a bit and then be fine. I was a little worried when he did this a few times, but told myself to stop being so paranoid. It was probably about ten minutes later when Scott got home and by then Xyler was starting to cough more. I told Scott I was getting worried because he kept coughing. He was on amoxicillan for a cold he had for a couple of weeks, and was just getting better, so Scott said that was probably why he was coughing. A few minutes later he wouldn't stop coughing and his face was really red, and we both knew something wasn't right. I was worried he was having an allergic reaction by the way he was acting. We decided he needed to go to the instacare that was only a few miles from our house. I was so worried that his throat would swell up and he would stop breathing, so I had Nika come with me so she could sit by him and help if he needed it.
We got in the van and I remember looking in the rear view mirror at him before we left and thought that his eyes looked like they were swelling. A minute later I looked at him and his right eye was almost swollen shut and his left eye was swelling more too. I was even more worried then, that his throat would swell shut. Those few miles to the instacare seemed to take forever! We finally got there and I hurried and got Xyler out and we ran into the instacare. I walked up to the desk and told them Xyler was having an allergic reaction. I had done so well at not crying until that point. One thing I have had happen since Xyler was born is that I get super emotional now and it's hard to hold it in. The lady behind the desk told me it would be ok and they took us back right away.
They took us to a room without weighing Xyler and without getting any info. The nurse was asking me his name when the doctor came in a minute later. He listened to Xyler to see how his lungs sounded and to look him over. I told him what had happened and that Xyler had a heart defect(I think everything is so much scarier for me with him because of his heart defect). The doctor ordered a shot of epinephrine, benedryl and a breathing treatment. He figured the reaction was from the dye in the marshmallow's. A minute later they came in with the shot and gave it to him.
This is a pic of him right before the shot. It's not the greatest of shots because he was crying so much I just hurried and took a pic. His body was also covered in hives and had a rash all over it. I didn't notice this until when the doctor was looking at him. I just couldn't believe how fast everything happened to his poor little body.
Just a few minutes after the shot he was looking and sounding so much better. They gave him some benedryl and then brought in the stuff to do the breathing treatment. Xyler does not like breathing treatments so I knew it was going to be a wrestling match to keep the mask over his mouth and nose. The nurse helped hold him so that he couldn't grab the mask or move his head. He cried the WHOLE time! I knew he would because this is what he has always done when I have had to give him treatments at home. The nurse kept telling me he would probably wear himself out and calm down, but it never happened. I told her he was a strong, stubborn kid and had to be with everything he has gone through. She agreed with me. After the breathing treatment he was almost completely back to normal. His eyes were still a bit swollen but the rash and hives were pretty much gone. Xyler was up running around a acting more like himself.
Here is a pic after everything was done.
They had us stay for a bit to make sure Xyler was doing ok. Nika was such a good helper and played with Xyler to keep him happy.
I noticed Xyler would cough a bit and then be fine. I was a little worried when he did this a few times, but told myself to stop being so paranoid. It was probably about ten minutes later when Scott got home and by then Xyler was starting to cough more. I told Scott I was getting worried because he kept coughing. He was on amoxicillan for a cold he had for a couple of weeks, and was just getting better, so Scott said that was probably why he was coughing. A few minutes later he wouldn't stop coughing and his face was really red, and we both knew something wasn't right. I was worried he was having an allergic reaction by the way he was acting. We decided he needed to go to the instacare that was only a few miles from our house. I was so worried that his throat would swell up and he would stop breathing, so I had Nika come with me so she could sit by him and help if he needed it.
We got in the van and I remember looking in the rear view mirror at him before we left and thought that his eyes looked like they were swelling. A minute later I looked at him and his right eye was almost swollen shut and his left eye was swelling more too. I was even more worried then, that his throat would swell shut. Those few miles to the instacare seemed to take forever! We finally got there and I hurried and got Xyler out and we ran into the instacare. I walked up to the desk and told them Xyler was having an allergic reaction. I had done so well at not crying until that point. One thing I have had happen since Xyler was born is that I get super emotional now and it's hard to hold it in. The lady behind the desk told me it would be ok and they took us back right away.
They took us to a room without weighing Xyler and without getting any info. The nurse was asking me his name when the doctor came in a minute later. He listened to Xyler to see how his lungs sounded and to look him over. I told him what had happened and that Xyler had a heart defect(I think everything is so much scarier for me with him because of his heart defect). The doctor ordered a shot of epinephrine, benedryl and a breathing treatment. He figured the reaction was from the dye in the marshmallow's. A minute later they came in with the shot and gave it to him.
This is a pic of him right before the shot. It's not the greatest of shots because he was crying so much I just hurried and took a pic. His body was also covered in hives and had a rash all over it. I didn't notice this until when the doctor was looking at him. I just couldn't believe how fast everything happened to his poor little body.
Just a few minutes after the shot he was looking and sounding so much better. They gave him some benedryl and then brought in the stuff to do the breathing treatment. Xyler does not like breathing treatments so I knew it was going to be a wrestling match to keep the mask over his mouth and nose. The nurse helped hold him so that he couldn't grab the mask or move his head. He cried the WHOLE time! I knew he would because this is what he has always done when I have had to give him treatments at home. The nurse kept telling me he would probably wear himself out and calm down, but it never happened. I told her he was a strong, stubborn kid and had to be with everything he has gone through. She agreed with me. After the breathing treatment he was almost completely back to normal. His eyes were still a bit swollen but the rash and hives were pretty much gone. Xyler was up running around a acting more like himself.
Here is a pic after everything was done.
They had us stay for a bit to make sure Xyler was doing ok. Nika was such a good helper and played with Xyler to keep him happy.
The doctor told me later that his lungs had sounded wheezy when I brought him in but not to the point where he was going to stop breathing. He said that they sounded fine now. What a relief it was to have him be ok! In the rush of everything I hadn't been able to tell them everything he was on and told a nurse that he was on amoxicillan and asked if that could have made this reaction happen to the dye in the marshmallow's. She said that it was possible. Xyler has been on that same medicine and had a reaction to easy mac before but nothing this severe. With the easy mac he broke out in red splotches around his mouth. He can't eat it anymore because the splotches happen every time now, and we figure it's from the dye in that too. I think from now on I will tell his doctors he cannot have amoxacillan since I think it makes his body susceptible to the dye's in food.
Xyler likes to keep us on our toes, I have decided. I feel so bad for him because he has already been through so much and yet he seems to keep having more things happen. He is so strong and I am so proud to be his mom. I am proud of all of my kids. They are all so strong and do so well in helping anytime we need it. They all love their little brother and pray for him and his heart all of the time. It's so sweet! I love them all so much!
Sunday, May 12, 2013
Happy Mother's Day!
Happy Mother's Day! Today I have been thinking a lot about my most memorable Mother's Day. It was 3 years ago. My oldest, Xander, was at Primary Children's Medical Center recovering from having emergency surgery on his small intestines. I will give you some background before I tell you why this was my most memorable Mother's Day.
On a Friday night Scott and I were up late watching tv. It was around midnight when suddenly Xander came running out of his room and ran to the bathroom. He made it to the doorway and put his arms on both sides of the door frame and started throwing up. I have never seen someone throw up with so much force and it worried me that something was wrong. I immediately told myself that I was overreacting and just figured that he had the stomach flu. He was up most of the night throwing up that night. The rest of the weekend he didn't eat much but he seemed better. I figured that it would take him a few days to get his appetite back.
The following Monday we were about to sit down for dinner and Xander came upstairs saying that he was starving and that his stomach hurt because he was so hungry. We sat down to eat and he only took a few bites before he said that he wasn't feeling good. I had him go lay down and not long after he started throwing up. This really concerned me because I thought that he was better. The poor kid could not keep anything down and his energy started draining. The next morning he didn't even have the energy to watch tv. He would just sleep.
I called the nurse and she told me he might have strep and that I should bring him in. I took him in and his pediatrician said that he might have an appendicitis. I couldn't believe that I didn't ever think about that. My daughter had had hers out when she was three so I couldn't believe that I didn't push on his side to see if it hurt. I took him over to the hospital so that they could check him in and give him fluids since he was so dehydrated. They did an ultrasound and the tech was having a hard time finding his appendix but thought that she saw part of his intestine twisted. She had the radiologist come take a look and he was about to head home when she called him. He hurried and looked and said that it just looked like his intestine was thickened. At the utter disbelief to me and the nurse, Xander was sent home. When his ped. called me at the hospital to tell me what they had found, the whole time I kept thinking I should tell him what the tech saw and to ask for a ct scan. I still regret not doing that. It was the spirit telling me and I didn't do it. If you ever feel like the diagnosis that they are telling you about your child is not right, ask them to run more tests.
The fluids helped Xander a bit but he still wouldn't eat or drink since it always just came right back up. The next morning I took him in to his ped's to get some more fluid put in by an IV, which helped a bit but Xander was still getting worse. He was literally becoming lifeless. He just slept all day and by that night he was in a lot of pain. I knew something was not right so I took him in to the ER. They did a ct scan and found that his intestine was twisted. Xander was taking by ambulance around 4:00 AM to Primary Children's. I rode down with him. I was 6 months prego with our 3rd child and that was not a fun ride. I realized right before we left that I had been up all night and had not eaten anything since hours before. I asked the nurse for some crackers and a mt dew. She gave some crackers and a warm mt dew. A warm mt dew didn't help me and I rode backwards going down. The nice EMT kept asking me if I wanted to trade him seats but I wanted to be able to stay right by Xander. I was so glad when that ride was over. Xander slept through it all, which I was grateful for.
Scott woke Nika up and packed bags for all of us and drove down not long after we left. When Nika and him were walking from the parking terrace to the hospital Nika threw up. We think she got car sick from being woken up so early and having to drive for 1 1/2 hours. I was sitting in an ER room with Xander when Scott came walking in with Nika in a wheelchair. I freaked out for a second wondering what happened to her. It was quite the eventful morning for all of us.
Before they took Xander back the dr told us that they would go in and do exploratory surgery to see what was wrong. He gave us a couple of scenarios as to what it might be. One of them is what it ended up being. He had what is called Meckle's Diverticulum. A small flap is on your small intestines when you are in the womb and it's fed by an artery. After you are born it goes away except for in 2% of people, and of the 2% only 2% have a problem. It is a very rare thing in other words. Xander's caused his small intestine to twist. They ended up taking out about 6cm of his and his appendix. His surgery lasted about 2 1/2 hours and I thought it was super long. I have now changed my mind on that since Xyler's longest one was 6 hours.
Anyway, Xander had his surgery on a thursday morning and couldn't eat or drink until Sunday. The poor kid had a tube down his nose draining everything out of his stomach to help his intestines to heal. The eating didn't bother him, it was the not drinking that was not fun for him. I was able to swab his mouth with a little sponge so that it was moistened and that was all we could do for him. I would let him hold the sponge and looked the other way when he sucked on it a bit to get some of the water out of it. :)
I must say it was not fun to sleep on the pull out chair/bed while being pregnant. My back was already hurting during this pregnancy and it only got worse from that hospital stay. The night before Mother's Day, Scott told me I should go stay the night at my sister Heather's house so that I could get some good sleep. Nika was staying with them and she would be going back home with Scott the next day so I decided to stay there so that I could bring her back with me. I did not, however, get a good night's sleep. Nika woke up during the night crying and was burning up with a fever. The next morning she ended up throwing up. I was just glad that I was busy getting ready and so was Heather so it was her hubby, Casey, who had to clean it up since she hit the carpet. :) We figured she got heat stroke from playing outside for so long the day before. It was weird because she has never had that happen before.
I realized that morning that it was Mother's day. I was not expecting to get anything for it since we had been so busy with taking care of Xander. Casey was so sweet and gave me a rose. I was touched that they would do that for me and figured it would be my only gift. By the time Nika and I got back to the hospital I found out that Xander had finally gotten the tube taken out and he could then eat. I was so happy and thought that was a great Mother's Day gift. I then found out that Xander was able to get up and walk around and had gone to the play room. He made me two mother's day gift's there. I absolutely love these gifts!
These are the two gifts he made.
On a Friday night Scott and I were up late watching tv. It was around midnight when suddenly Xander came running out of his room and ran to the bathroom. He made it to the doorway and put his arms on both sides of the door frame and started throwing up. I have never seen someone throw up with so much force and it worried me that something was wrong. I immediately told myself that I was overreacting and just figured that he had the stomach flu. He was up most of the night throwing up that night. The rest of the weekend he didn't eat much but he seemed better. I figured that it would take him a few days to get his appetite back.
The following Monday we were about to sit down for dinner and Xander came upstairs saying that he was starving and that his stomach hurt because he was so hungry. We sat down to eat and he only took a few bites before he said that he wasn't feeling good. I had him go lay down and not long after he started throwing up. This really concerned me because I thought that he was better. The poor kid could not keep anything down and his energy started draining. The next morning he didn't even have the energy to watch tv. He would just sleep.
I called the nurse and she told me he might have strep and that I should bring him in. I took him in and his pediatrician said that he might have an appendicitis. I couldn't believe that I didn't ever think about that. My daughter had had hers out when she was three so I couldn't believe that I didn't push on his side to see if it hurt. I took him over to the hospital so that they could check him in and give him fluids since he was so dehydrated. They did an ultrasound and the tech was having a hard time finding his appendix but thought that she saw part of his intestine twisted. She had the radiologist come take a look and he was about to head home when she called him. He hurried and looked and said that it just looked like his intestine was thickened. At the utter disbelief to me and the nurse, Xander was sent home. When his ped. called me at the hospital to tell me what they had found, the whole time I kept thinking I should tell him what the tech saw and to ask for a ct scan. I still regret not doing that. It was the spirit telling me and I didn't do it. If you ever feel like the diagnosis that they are telling you about your child is not right, ask them to run more tests.
The fluids helped Xander a bit but he still wouldn't eat or drink since it always just came right back up. The next morning I took him in to his ped's to get some more fluid put in by an IV, which helped a bit but Xander was still getting worse. He was literally becoming lifeless. He just slept all day and by that night he was in a lot of pain. I knew something was not right so I took him in to the ER. They did a ct scan and found that his intestine was twisted. Xander was taking by ambulance around 4:00 AM to Primary Children's. I rode down with him. I was 6 months prego with our 3rd child and that was not a fun ride. I realized right before we left that I had been up all night and had not eaten anything since hours before. I asked the nurse for some crackers and a mt dew. She gave some crackers and a warm mt dew. A warm mt dew didn't help me and I rode backwards going down. The nice EMT kept asking me if I wanted to trade him seats but I wanted to be able to stay right by Xander. I was so glad when that ride was over. Xander slept through it all, which I was grateful for.
Scott woke Nika up and packed bags for all of us and drove down not long after we left. When Nika and him were walking from the parking terrace to the hospital Nika threw up. We think she got car sick from being woken up so early and having to drive for 1 1/2 hours. I was sitting in an ER room with Xander when Scott came walking in with Nika in a wheelchair. I freaked out for a second wondering what happened to her. It was quite the eventful morning for all of us.
Before they took Xander back the dr told us that they would go in and do exploratory surgery to see what was wrong. He gave us a couple of scenarios as to what it might be. One of them is what it ended up being. He had what is called Meckle's Diverticulum. A small flap is on your small intestines when you are in the womb and it's fed by an artery. After you are born it goes away except for in 2% of people, and of the 2% only 2% have a problem. It is a very rare thing in other words. Xander's caused his small intestine to twist. They ended up taking out about 6cm of his and his appendix. His surgery lasted about 2 1/2 hours and I thought it was super long. I have now changed my mind on that since Xyler's longest one was 6 hours.
Anyway, Xander had his surgery on a thursday morning and couldn't eat or drink until Sunday. The poor kid had a tube down his nose draining everything out of his stomach to help his intestines to heal. The eating didn't bother him, it was the not drinking that was not fun for him. I was able to swab his mouth with a little sponge so that it was moistened and that was all we could do for him. I would let him hold the sponge and looked the other way when he sucked on it a bit to get some of the water out of it. :)
I must say it was not fun to sleep on the pull out chair/bed while being pregnant. My back was already hurting during this pregnancy and it only got worse from that hospital stay. The night before Mother's Day, Scott told me I should go stay the night at my sister Heather's house so that I could get some good sleep. Nika was staying with them and she would be going back home with Scott the next day so I decided to stay there so that I could bring her back with me. I did not, however, get a good night's sleep. Nika woke up during the night crying and was burning up with a fever. The next morning she ended up throwing up. I was just glad that I was busy getting ready and so was Heather so it was her hubby, Casey, who had to clean it up since she hit the carpet. :) We figured she got heat stroke from playing outside for so long the day before. It was weird because she has never had that happen before.
I realized that morning that it was Mother's day. I was not expecting to get anything for it since we had been so busy with taking care of Xander. Casey was so sweet and gave me a rose. I was touched that they would do that for me and figured it would be my only gift. By the time Nika and I got back to the hospital I found out that Xander had finally gotten the tube taken out and he could then eat. I was so happy and thought that was a great Mother's Day gift. I then found out that Xander was able to get up and walk around and had gone to the play room. He made me two mother's day gift's there. I absolutely love these gifts!
These are the two gifts he made.
For me, it was the best gifts because Xander was feeling well enough to make them. I love Primary Children's and that they do wonderful things like this for the children who, unfortunately have to be there, and also for the parents who are there watching over them. This was a hard Mother's Day for me but also the most memorable. Motherhood is such a wonderful blessing and that day I was so grateful to still have Xander with us and to be blessed with two wonderful kids and one more on the way. I was also so grateful for the wonderful doctor's and nurses who took care of Xander and saved his life.
This was our first experience with Primary Children's. Little did we know how much time we would end up spending there in the future with our little Xyler, but this experience helped prepare us for it. It created a special place in our hearts for Primary's, which made it a comfort when Xyler was there. I feel so blessed to be the mother of my 4 wonderful kids and for my wonderful hubby. I love them very much! I am also thankful for my mother and all that she has done for me. Motherhood is not the easiest job but it is the greatest job! I can't think of anything better than when your child gives you a hug and a kiss and tells you that they love you.
Happy Mother's Day to all of you wonderful mom's out there!!!!
Monday, April 15, 2013
Spiritual Giants
Saturday, April 13, I was able to go to a luncheon for heart mom's. It was a great lunch filled with great people and speakers. I love the feeling of unity when I am around other heart mom's. We can get together and talk all of the medical talk and everything else that goes with the heart journey we all go through and we all understand how hard it is. What a special thing to have. I feel very lucky to be apart of the Intermountain Healing Hearts.
Tiffany Peterson was the guest speaker and I loved everything she talked about. I really wish I would have been better prepared with a pen and notepad and taken notes. She called us "Spiritual Giants". This really effected me every time she would say it. I think as a mom you always have your moments of feeling lacking in everything that you do for your kids and family. This feeling can get intensified when you have a child with a CHD. I have many moments of wondering why Heavenly Father thought I could handle this trial because I feel like I am failing on keeping my self together let alone take care of everything that I need to. I am constantly worried that I might miss something with Xyler that will be life threatening or that I'm not giving my other kids the attention they need. Hearing Tiffany call us Spiritual Giants gave me a sense of pride for what I have and will endure. It made me feel like I can make it through this no matter what happens.
This heart journey is not easy and I don't know if it ever will get easier but I am grateful for the blessings and lessons I have learned because of it. That is one of the things she talked about. To look at what this journey is teaching us. I feel like I have grown and learned a lot in these last 17 1/2 months. I still have days where I struggle with everything but I also have days where I see the many blessings I have been given and it makes it all worth it. I think any parent will agree that anything you have to go through for your child is worth it. I love my kids so much! I learn from each of them in many different ways. I feel so blessed to be their mother.
Tiffany Peterson was the guest speaker and I loved everything she talked about. I really wish I would have been better prepared with a pen and notepad and taken notes. She called us "Spiritual Giants". This really effected me every time she would say it. I think as a mom you always have your moments of feeling lacking in everything that you do for your kids and family. This feeling can get intensified when you have a child with a CHD. I have many moments of wondering why Heavenly Father thought I could handle this trial because I feel like I am failing on keeping my self together let alone take care of everything that I need to. I am constantly worried that I might miss something with Xyler that will be life threatening or that I'm not giving my other kids the attention they need. Hearing Tiffany call us Spiritual Giants gave me a sense of pride for what I have and will endure. It made me feel like I can make it through this no matter what happens.
This heart journey is not easy and I don't know if it ever will get easier but I am grateful for the blessings and lessons I have learned because of it. That is one of the things she talked about. To look at what this journey is teaching us. I feel like I have grown and learned a lot in these last 17 1/2 months. I still have days where I struggle with everything but I also have days where I see the many blessings I have been given and it makes it all worth it. I think any parent will agree that anything you have to go through for your child is worth it. I love my kids so much! I learn from each of them in many different ways. I feel so blessed to be their mother.
Thursday, January 10, 2013
Heart Cath
I realized I never did an update after Xyler's heart cath. He had it done on Dec. 20th and everything went well. They found the narrow area and were able to stretch it out with the balloon. The hope is that it will stay stretched out so that he will have a few more years before needing the pulmonary valve replaced. If it begins to narrow again they will go in with a cath again and try to stent the area.
Xyler had to spend the night in the hospital just for observation. He did have to lay down and keep his leg still for 4 hours after. He was a champ! He was awake but in a daze during this time. Scott and I took turns standing by him, holding his leg still. When the 4 hours was up and I let go of his leg he instantly moved around and sat up. He was ready to move. He was tired but wouldn't go to sleep because he wanted to see everything going on. That kid amazes me more and more all of the time.
I have some pics but for some reason I can't upload them right now. I will try later.
Xyler had to spend the night in the hospital just for observation. He did have to lay down and keep his leg still for 4 hours after. He was a champ! He was awake but in a daze during this time. Scott and I took turns standing by him, holding his leg still. When the 4 hours was up and I let go of his leg he instantly moved around and sat up. He was ready to move. He was tired but wouldn't go to sleep because he wanted to see everything going on. That kid amazes me more and more all of the time.
I have some pics but for some reason I can't upload them right now. I will try later.
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