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!
Monday, December 30, 2013
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.
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