Saturday night Capris heart decided she had had enough. she went in and out of SVT throughout the night and into the next morning. After struggling to correct her with ice, we decided it was time to go to the emergency room. Mike stayed with A and B while I took Capri to primarys. After checking for illnesses we determined that her new heart med wasnt working and we needed to try another. They admitted her to the CSU and we settled in for the night.
Over the next few days we tried the new med and seemed to be having success. she had a few small episodes but was able to correct them with ice or on her own. By Wednesday they were comfortable with letting us go home. We spent the morning talking with insurance, signing paperwork and waiting for pharmacy to fill the new meds. 20 minutes before we were ready to leave Capri went into SVT. Right as it happened Dr. Pilcher was walking by so i grabbed him and asked what we should do. After about 20 minutes she didnt come out of it on her own so we used ice. then we used ice again. then again. Nothing. They brought up the heart medication that stops her heart for a second and then restarts at a regular rate. small dose.. nothing. medium dose.. nothing.. large dose.. nothing.
We were ready to go home and now we are headed to the Cardiac ICU. This exact thing happened last month. I feel like i am reliving december, what is going on?? We rushed to the ICU and gave her one more dose of adenosine. This time a very large dose. One they were worried may stop her heart for too long, yet.. nothing. This medicine doesnt even touch her. The only thing left is to shock her. I have never been here for this, I dont know if I am strong enough to stay. Then I look at this poor helpless baby. Scared and crying and all of these strange people rushing around her. I cant leave her. As hard as it is for me to watch, she is going through this. She is a tiny baby going through more than most adults ever go through. So i held her hand and told her it was going to be okay.
A flood of doctors, nurses and respitory therapists rushed in and out of the room, placing the shock pads turning on high flow oxygen to help her breathe, giving her medication to help with the pain and help her to not remember anything. After what seemed like an eternity they were finally ready. Machine on, charging to 3.. clear... we all backed away as the doctor pushed the button. I watched her chest get tight and then lift off the bed as her arms flew to the side. I heard her scream and saw the tears stream down her face. we all rushed back to the bed I kissed her head and told her it was going to be okay then turned and buried my head into the techs shoulder standing next to me. He rubbed my back and told me it was going to be okay. (I thanked him later for being my fill in husband) It worked and she was okay. I looked up at the monitor to see her heart rate slowing down and her oxygen rising. It was over. She was okay.
An hour later as we were settling into the room Mike had arrived and things were starting to be okay again. Then I saw her heart rate rise. 110..120..130. damnitt she is in SVT again. but then it kept rising... 150..170...200..220. Her heart has never beat this fast. She goes into SVT at 130, she is unique. At 220 i could litterly see her heart beating out of her chest. it was pushing her chest up and down so fast it was unreal. Doctors swarmed into her room again. Replacing the shock pads they didnt even want to mess with the meds. We know they dont work. Machine on.. charging to 3.. clear .. I turned away and heard the thud. Tears in my eyes i came back to her bed to hold her hand. Nothing.. it didnt work. Re charging.. higher voltage.. clear... nothing. Again.. and again. Capri stopped breathing. The respitory therapist pushed her jaw forward and tipped her head back. still nothing. She bagged and started giving her manual breaths. After the longest 5 seconds of my life she opened her mouth and took a breath. She was okay but still in SVT. They put an IV med in to slow her heart and let her rest to recover. Ten minutes later she was stable so they shocked her again. I turned to see Mike sitting in the corner away from everything. His eyes were red and he was looking at the ceiling. This is to hard. Everything was fine 4 hours ago. what happened??? Finally she went into a normal rythym and fell asleep.
Once she was stable Mike and I decided to run to the cafeteria and get a quick bite to eat. We walked to the front of the hospital and discussed what we did from there. Capri needed someone to stay with her she was to unstable. A and B just started back at preschool though and had school the next day. I hate feeling like i am putting them on the backburner. I dont want them to feel like Capri is the only one that matters. They need to know they are just as important. We decided Mike would stay and take the morning off to stay with Capri and I would take the kids home that night and to school in the morning. I took a few bites of my sandwich but couldnt eat anymore. I wanted to be with Capri. I left Mike to finish eating and went back to the CICU.
As I walked into her wing I saw our cardiologist walking towards me, her smile faded and she mouthed "im sorry". NOT AGAIN. please not again, she cant handle this. Her heart cant take it anymore. I went into the room and she was at 200 again. We pumped up her meds, and got a bag of ice. I covered her face and counted to 10. This is still just as hard as the first day I did it. watching her struggle and kick to try and get away from me. I am hurting her, she cant breathe. after 10 seconds nothing changed. The doctor tried with ice, nothing. We tried using the meds to stop her heart, nothing. We have to shock her. This is the 8th time she has been shocked in 7 hours. My babies heart is going to give out. Fortunately after the first attempt it kicked her into a good rhythm and she was ok. she drifted off to sleep with the help of sedatives and slept through the night. There was no way I could leave the hosptial so we got a sleep room and cuddled up in a twin bed for a sleepless night.
Friday, January 10, 2014
Monday, December 30, 2013
Back in the hospital
On our way home from Worland Capri went into a long episode of SVT. After 3 hours we finally decided to convert her with Ice and fixed her rhythm right away. Nothing like smothering your child in a bathroom stall at a rest stop in the middle of nowhere. Her diaper rash has continued to get worse. Her poor bum is so sore she has skin breakdown all over it. We tried antibiotics for a week and a medicated oral cream for a few days but nothing was helping so we decided to bring her into primary childrens once we got back to Salt lake. I feel so silly bringing her in for a diaper rash. i am trying not to be that mom who freaks out over every little thing but this rash has gotten so bad.
After the brought her into the ER and did a few tests they noticed she was struggling to breathe and had an extra heart beat in her waves. They decided to admit her and try to figure out why she was not able to have normal poops.
We have chalked it up to when we increased her calorie intake it was too much for her body to handle and so instead of absorbing the calories she is just pooping them out. After several discussions with pediatricians, cardiologists and the nutrionist we have decided that putting her back on a feeding tube is the best option for now. That way we can pump her with a new formula to get her to gain weight before OHS in two months. As much as i REALLY don't want to be back on a feeding tube i want my baby to grow so she can survive surgery. We will do whatever it takes!
After the brought her into the ER and did a few tests they noticed she was struggling to breathe and had an extra heart beat in her waves. They decided to admit her and try to figure out why she was not able to have normal poops.
We have chalked it up to when we increased her calorie intake it was too much for her body to handle and so instead of absorbing the calories she is just pooping them out. After several discussions with pediatricians, cardiologists and the nutrionist we have decided that putting her back on a feeding tube is the best option for now. That way we can pump her with a new formula to get her to gain weight before OHS in two months. As much as i REALLY don't want to be back on a feeding tube i want my baby to grow so she can survive surgery. We will do whatever it takes!
Breakfast with santa fundraiser!
This is the day we have been planning months for. I am so excited! My dad bought us a hotel room at little A the night before so we wouldn't need to try and bring everything in so early in the morning. We took the kids swimming and played in the room. It feels like we are on vacation. Like everything is okay and we are just tougher celebrating the holidays. I love days like this. The fundraiser was amazing. We had 20 students From Alta High school volunteer there time to help serve food, clean up and do anything that was needed. We had the most amazing Santa and mrs claus who took pictures and played with the kids the entire day. A and B were in seventh heaven. We got to meet 2 other ebstein babies and a few other heart kiddos (and there parents). It was so nice to sit and visit with other moms and hear there stories. I didn't feel so alone. Capris pediatrician came to do his christmas shopping at our silent auction :) As i was visiting with him i mentioned Capri had a small diaper rash that we couldn't seem to get rid of. He took us into a conference room, did an assessment and called in an antibiotic for her. That is why we have the best doctor ever!
half way through the event KSL news came in to do a segment on Capri. They hooked me up to the microphone and interviewed me for close to 20 minutes. Out of the corner of my eye I saw my old instructor Jami come in with her hands filled with gifts. I was trying to concentrate on the news lady but she was standing right by us. Then she came and stood next to me and told me she had some presents for us. My first thought was, "jami im in the middle of an interview, did you not see the cameras???" Then she proceeded to tell me that Taylor Andrews Acadamy of Hair was who had contacted KSL in the first place and that we were the schools sub for santa this year. I was speechless. this christmas was a very small christmas. mike and I didn't buy each other gifts, and the kids presents came from places like hobby lobby where i could get them for 40% off. Our kids are little and have always been spoiled before so they don't need anything. We were fine with them having a small christmas and new that they would be fine too. But to see all of those gifts and know that they got to have that great "christmas morning' with lots of toys meant so much. As much as we have tried to not do this i know A and B have been put on the back burner this year. Capri needs so much, there just isn't enough of me to go around. To be able to give them that fun christmas with lots of presents, as superficial as it sounds, is great!
I have so many amazing friends who have supported us through the last 6 months. When things like this happen you find our who your real friends are. I have been amazed at the people who have came through the woodwork to support us and help us on this journey. And the people who i thought were close friends fade away or even worse tell us that we were bad people for asking for help. I am so grateful for those positive people in our lives and have come to the realization that i don't want people around who are negative, un happy people. I am barely hanging on right now so i need people in my life that will be a positive influence.
half way through the event KSL news came in to do a segment on Capri. They hooked me up to the microphone and interviewed me for close to 20 minutes. Out of the corner of my eye I saw my old instructor Jami come in with her hands filled with gifts. I was trying to concentrate on the news lady but she was standing right by us. Then she came and stood next to me and told me she had some presents for us. My first thought was, "jami im in the middle of an interview, did you not see the cameras???" Then she proceeded to tell me that Taylor Andrews Acadamy of Hair was who had contacted KSL in the first place and that we were the schools sub for santa this year. I was speechless. this christmas was a very small christmas. mike and I didn't buy each other gifts, and the kids presents came from places like hobby lobby where i could get them for 40% off. Our kids are little and have always been spoiled before so they don't need anything. We were fine with them having a small christmas and new that they would be fine too. But to see all of those gifts and know that they got to have that great "christmas morning' with lots of toys meant so much. As much as we have tried to not do this i know A and B have been put on the back burner this year. Capri needs so much, there just isn't enough of me to go around. To be able to give them that fun christmas with lots of presents, as superficial as it sounds, is great!
I have so many amazing friends who have supported us through the last 6 months. When things like this happen you find our who your real friends are. I have been amazed at the people who have came through the woodwork to support us and help us on this journey. And the people who i thought were close friends fade away or even worse tell us that we were bad people for asking for help. I am so grateful for those positive people in our lives and have come to the realization that i don't want people around who are negative, un happy people. I am barely hanging on right now so i need people in my life that will be a positive influence.
Dec 20th surgery phone call
Dec 20th- day before surgery. I sent the girls to there papas today and kept A to help me run errands to finish getting the last minute stuff done before the fundraiser. Its been a long time since A and I have gotten to hang out just the 2 of us. We stopped at Kneeders to pick up the french toast for tomorrow and got a gingerbread man for a treat. He was so excited to get to pick whatever he wanted and not have to share with his sister. I love when we get to have 1 on 1 time. Next we went to Harmons to go and pick up 40 pounds of sausage. As i pulled into the parking lot I got a phone call from 801-662-..... Why would primary's be calling me? I answered and heard Dr. Cowley on the other line. He didn't waste anytime and let me know that he had talked to Dr. Dearani at the mayo clinic and he wanted to get Capri in as soon as possible. He classified her as "failure to thrive" and said she needs the surgery now. He gave me a phone number and told me to call the Mayo clinic to set up a date in February.
As I hung up the phone, I was heart broken. I knew she needed the surgery but I wanted so badly to celebrate her 1st birthday first. She will only be 8 months old. That is SO small. What if her heart isn't strong enough to survive the surgery? How am I going to do this? Im not ready yet.
I called the Mayo and scheduled for February 25th. We wanted to make sure the surgery wasn't close to A's birthday. If all goes as planned and she heals quickly we will be out there for 2 1/2 weeks.
I spent the rest of the day breaking down, crying every time I thought about the surgery and calling friends and family to let them know it was scheduled. As we were in a grocery store the cashier asked why we needed so many eggs. told her about capri and A said "mom, are you going to start crying again, really?? haha little stinker!
He's right though, why am I crying? I knew this surgery was coming. We knew from the beginning it was going to be risky. So she is going to be smaller than we had hoped. Nothing we can do now except try to get her to grow. Hope for another miracle and soak up every second we have with her.
As I hung up the phone, I was heart broken. I knew she needed the surgery but I wanted so badly to celebrate her 1st birthday first. She will only be 8 months old. That is SO small. What if her heart isn't strong enough to survive the surgery? How am I going to do this? Im not ready yet.
I called the Mayo and scheduled for February 25th. We wanted to make sure the surgery wasn't close to A's birthday. If all goes as planned and she heals quickly we will be out there for 2 1/2 weeks.
I spent the rest of the day breaking down, crying every time I thought about the surgery and calling friends and family to let them know it was scheduled. As we were in a grocery store the cashier asked why we needed so many eggs. told her about capri and A said "mom, are you going to start crying again, really?? haha little stinker!
He's right though, why am I crying? I knew this surgery was coming. We knew from the beginning it was going to be risky. So she is going to be smaller than we had hoped. Nothing we can do now except try to get her to grow. Hope for another miracle and soak up every second we have with her.
Sunday, December 8, 2013
Cardiac ICU
Wednesday morning:
Baylee spent most of the night awake with an aweful cough. Wednesday morning I decided to take her into an Insta care to make sure that she didn't have RSV. As we walked into the doctors office A and B ran over to the kids area to play while Capri and I waited to sign us in. I heard her cough and looked down just in time to see projectile vomit flying out of her carseat. I sat her down to see if she was ok and she was blue. I cleaned out her mouth and turned up her oxygen to see if that would help. Her skin was grey and her lips were a deep blue. Our pediatricians nurse walked by and asked if she was okay. She peeked at Capri, said "oh my god" and ran back to get the dr. At the same time 2 nurses came running out from the insta care side and hooked her up to monitors. After casuing quite the scene we were told to get to primarys as quickly as possible
The ride there A was my little doctor. Every few seconds he would update me on her color letting me know she was still blue. He would tell me her eyes were opening a little but she was mostly just laying there. We got to the ER and were greeted by a room full of doctors. after assessing her they confirmed she was in SVT and that we needed to start doing vagal maneuvers. We started by holding her upside down, nothing. Then we gagged her with a binky and tried to stimulate her rectally. Still nothing. Now it was time to use the ice. I told them I didn't want to watch so I stepped out of the room while they placed an ice bag on her face to suffocate her. It is the worst thing in the entire world. I hate that we have to do that. And it still didn't work. Nothing was getting her out of SVT.
They brought in some medicine to stop her heart and re set it. first dose, nothing. second dose, nothing. they placed the shock pads on her and brought in a doctor to sedate her. They decided to try the ice one more time just incase and it worked. After 4 and 1/2 hours she was finally out of SVT.
An hour later she was back in it. We haven't had these issues in over a month. what is going on? why is she struggling?? The ice kicked her back out of it but sent us down to the Cardiac ICU. She had 2 more episodes through out the night and was sent up to the childrens surgical unit Thursday afternoon. She did great and by Friday afternoon we had our new meds in the pharmacy and were getting ready to be discharged. Then she went back into it. Nothing worked. They iced her 8 times! It was horrible. Everytime her poor tiny arms and legs would fly into the air squirming to get away. they stopped her heart twice with medications but nothing worked. We rushed her down to CICU placed the shock pads on her chest and had a room full of doctors. They doubled the adenosine dosage and tried the meds one more time. It kicked her out of it and she was okay. Her heart slowed down and her oxygen went back up.
It is now Sunday afternoon and we just moved back to the CSU. They changed her meds again and we have hopefully found one that will work. Being at the hospital is exhausting mentally and physically. It is so hard to be away from our other children and to be so helpless for capri. That being said I am SOO greatful for this hospital. There are so many amazing people who volunteer there time here to make meals for parents so we don't have to pay for food. People who are singing carols in the lobby, and people who just come by to visit. I am so glad that we live so close to a hospital that can help our baby girl.
Baylee spent most of the night awake with an aweful cough. Wednesday morning I decided to take her into an Insta care to make sure that she didn't have RSV. As we walked into the doctors office A and B ran over to the kids area to play while Capri and I waited to sign us in. I heard her cough and looked down just in time to see projectile vomit flying out of her carseat. I sat her down to see if she was ok and she was blue. I cleaned out her mouth and turned up her oxygen to see if that would help. Her skin was grey and her lips were a deep blue. Our pediatricians nurse walked by and asked if she was okay. She peeked at Capri, said "oh my god" and ran back to get the dr. At the same time 2 nurses came running out from the insta care side and hooked her up to monitors. After casuing quite the scene we were told to get to primarys as quickly as possible
The ride there A was my little doctor. Every few seconds he would update me on her color letting me know she was still blue. He would tell me her eyes were opening a little but she was mostly just laying there. We got to the ER and were greeted by a room full of doctors. after assessing her they confirmed she was in SVT and that we needed to start doing vagal maneuvers. We started by holding her upside down, nothing. Then we gagged her with a binky and tried to stimulate her rectally. Still nothing. Now it was time to use the ice. I told them I didn't want to watch so I stepped out of the room while they placed an ice bag on her face to suffocate her. It is the worst thing in the entire world. I hate that we have to do that. And it still didn't work. Nothing was getting her out of SVT.
They brought in some medicine to stop her heart and re set it. first dose, nothing. second dose, nothing. they placed the shock pads on her and brought in a doctor to sedate her. They decided to try the ice one more time just incase and it worked. After 4 and 1/2 hours she was finally out of SVT.
An hour later she was back in it. We haven't had these issues in over a month. what is going on? why is she struggling?? The ice kicked her back out of it but sent us down to the Cardiac ICU. She had 2 more episodes through out the night and was sent up to the childrens surgical unit Thursday afternoon. She did great and by Friday afternoon we had our new meds in the pharmacy and were getting ready to be discharged. Then she went back into it. Nothing worked. They iced her 8 times! It was horrible. Everytime her poor tiny arms and legs would fly into the air squirming to get away. they stopped her heart twice with medications but nothing worked. We rushed her down to CICU placed the shock pads on her chest and had a room full of doctors. They doubled the adenosine dosage and tried the meds one more time. It kicked her out of it and she was okay. Her heart slowed down and her oxygen went back up.
It is now Sunday afternoon and we just moved back to the CSU. They changed her meds again and we have hopefully found one that will work. Being at the hospital is exhausting mentally and physically. It is so hard to be away from our other children and to be so helpless for capri. That being said I am SOO greatful for this hospital. There are so many amazing people who volunteer there time here to make meals for parents so we don't have to pay for food. People who are singing carols in the lobby, and people who just come by to visit. I am so glad that we live so close to a hospital that can help our baby girl.
Saturday, November 9, 2013
starting to feel normal
Everyday things seem to feel a little bit more normal. We are starting to get into a routine. Capri is slowly weening off her oxygen and things are starting to be okay. 4 months ago my life changed and I didn't think I was going to make it. Today things are okay. I have a beautiful little girl who is slowly growing, getting stronger everyday. We have been overwhelmed by the support of our friends and family who have been willing to help us out as I plan this fundraiser and start to prepare for Capris open heart surgery.
I still struggle with falling asleep. Night time is when all of the bad thoughts and fears surface. What if she stops breathing and I don't hear her? What if she goes into SVT and her monitors mis read? The thought that we may only have our baby girl for a small amount of time is always there. I was taking a bubble bath with her last night, thinking about how much I love taking baths with my babies. Her head on my chest, eyes closing relaxing in the warm water. I asked Mike to take a picture so that I would have that memory forever.
We took Capri to a Jazz game a few weeks ago and I got mixed reviews from my family about taking her to a place like that that was filled with germs. As Mike and I talked about it though, we want to have memories with Capri. No matter what our future holds we want to be able to look back on these months and think of the fun things we did as a family. I hope that on her 18th birthday we can give her the family picture we took and joke about how we were so poor the only seats we could afford were so high that she needed to have her oxygen on.
Everyday I love this little girl more and more. Her personality is starting to shine through, she is always smiling and touching the hearts of every person she meets. Look at how far she has come in the last 4 months. 5% odds have
nothing on her ;)
.jpg)
I still struggle with falling asleep. Night time is when all of the bad thoughts and fears surface. What if she stops breathing and I don't hear her? What if she goes into SVT and her monitors mis read? The thought that we may only have our baby girl for a small amount of time is always there. I was taking a bubble bath with her last night, thinking about how much I love taking baths with my babies. Her head on my chest, eyes closing relaxing in the warm water. I asked Mike to take a picture so that I would have that memory forever.
We took Capri to a Jazz game a few weeks ago and I got mixed reviews from my family about taking her to a place like that that was filled with germs. As Mike and I talked about it though, we want to have memories with Capri. No matter what our future holds we want to be able to look back on these months and think of the fun things we did as a family. I hope that on her 18th birthday we can give her the family picture we took and joke about how we were so poor the only seats we could afford were so high that she needed to have her oxygen on.
Everyday I love this little girl more and more. Her personality is starting to shine through, she is always smiling and touching the hearts of every person she meets. Look at how far she has come in the last 4 months. 5% odds have
nothing on her ;)
.jpg)
Saturday, November 2, 2013
Fundraiser
As we are approaching Capris open heart surgery we have decided to reach out to friends and family to ask for help in a fundraiser. On December 21st 2013 we will be doing a breakfast with santa fundraiser and silent auction in the founders room on the top of the zions bank in downtown Salt lake city. I am writing this blog in the hopes that there are people out there with amazing talents or connections to businesses that would be willing to donate items to our silent auction. We are looking at $20,000 in bills once we have her surgery so anything would help! If you know of someone or have something you would like to donate please email me at kendraware@live.com. Any and all donations would be very much appreciated!!
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