Continuing Kapri's Journey

We have decided to use "Kapri's Journey" to let everyone know what we are doing with the donations that we have received to the Band of Brothers Foundation www.bobf.org in Kapri's name. She will live on though helping others with heart conditions.

Through the generous donations to the Band of Brothers we have been fortunate enough to help many children throughout the world from donating wheelchairs in Costa Rica, to paying for heart surgeries and sponsoring an orphanage in Vietnam , to helping the children of Burma who are now in orphanages in Thailand.

For all of the donations made in Kapri's name we will focus only on funding projects that help children with heart conditions. Through our friends The Nelson's (Justin, Victoria and Moriah) we have come across an amazing organization called Camp Del Corazon. It is a wonderful non-profit group that runs a camp for children with heart conditions. I have posted a letter to our donors that explains what the camp is and why we love it so much. We have decided to sponsor 8 children this summer in hopes to continue to support them year after year.

I will update the blog with pictures from the heart camp which will take place in August.

Donations to BOBF in honor of Kapri

We wanted to give you an update on our quest to find an organization in which to use your donation to the Band of Brothers last year in Kapri's name. It has now been 10 months since our daughter passed and we have researched many different organizations helping children with heart disease but there is one that really stands out and is run by two wonderful people that coordinate a summer camp each year for children with heart disease.

The name of the camp is Camp Del Corazon and it helps children who have had open heart surgeries to heal by putting on a three week camp during the summer on Catalina Island. The camp has many activities including hiking, swimming, kayaking, camp fires, archery, etc. under the supervision of cardiologists & nurses who donate their time as counselors in case of an emergency. Many children have to go through multiple heart surgeries before the age of 18 and suffer emotionally due to the scars on their chest and their fear of their next surgery. A camp like this allows children to open up and relate to others who are going through the same experiences. This camp helps in the emotional healing that provides a child with the courage necessary to survive and cope with their heart condition.

Dana and I have seen first hand the intrusiveness of a heart surgery from from multiple intravenous lines to intense medication to breathing apparatus to the heart/lung bypass machine to the cracking open the rib cage and we can only imagine what is going through the mind of a child. These children live with tremendous anxiety knowing that once they have gone through a traumatic heart surgery, that they may have to go through it again in the future. We have heard from parents who say that their child does not want to get into their pajamas to go to bed at night since it reminds them of being in the hospital. They struggle to communicate with other children who cannot understand why they have scars on their chest and cannot join them for normal athletic activities.

As a testament to this camp, Jim Davies (who is on the Board of the Band of Brothers) has allowed me to share an email that he received from his mother about his cousin Sara who has a heart condition and attended this camp:

I told your cousin about the Band of Brothers hoping to help the Catalina Camp and she started crying! She said that camp saved their lives because her daughter had felt so isolated with her heart surgeries and all her medicines and limited life style. She loved the camp so much that she went back six summers. These children can never go to a regular summer camp so it was wonderful for them to be able to go there and see all their co-campers carrying so many medications, describing their most recent heart surgery etc. And then they could kayak and swim and do lots of normal things as there were nurses and cardiologists on hand who could help in an emergency. Thought you would enjoy sharing how very much this camp meant to your cousin's family. Love Mom.

We want to thank you again for your donation as we are so grateful that we can combine it with others that have donated to the Band of Brothers in Kapri's name and sponsor a cabin this summer that will pay for 8 children to attend this camp for one week. These children will be supervised by a full staff of cardiologists and nurses who donate their time as counselors and are prepared to deal with any emergency that may occur including a full cardiac arrest. They have the equipment necessary on site to treat these children in addition to having a helicopter and bay watch on standby for transport if necessary.

Thank you again for your donation and we hope that Kapri's short life on earth will make a difference by helping other children with heart disease.

Eric and Dana Snyder
Band of Brothers Foundation
Email: eric@bobf.org

KAPRI'S JOURNEY

Kapri's Journey is our blog about Kapri's life and our love for her. This was her journey as seen through her mother's eyes. Our hope is that one day Landon will be able to read about her journey and understand what an amazing experience his sister went through and everything we did to try and save her. I was honored and blessed to to call her my baby Kapri. I am so grateful to God for giving her to me even if it was only for a short time. I will spend the rest of my life having known an angel on earth.

From the beginning…

Our journey started in March 2008 when after a year of trying to get pregnant Eric and I were finally expecting…YEA! But we were completely crushed when we lost the baby at only 7 weeks into the pregnancy. Although I was sad, I knew that God had a plan for us (as he always does) and that we were meant to have a different baby. We would have to wait until September to find out that we were fortunate enough to be pregnant again. I found out we were expecting while Eric was away on a trip to Vietnam with the “Band of Brothers” (www.bobf.org ) and I couldn’t wait to share the news with him. Once he arrived home he told me all about his trip and the amazing children at the orphanage. He also told me about the families he met who were asking the Band of Brothers to fund heart surgeries to save their children's lives (more on this story later).

2 Heart beats…

We were 5 weeks into this pregnancy and something felt different, I can’t explain it but something was different than the last pregnancy…I started joking that I thought I was pregnant with Twins. On October 7th we were told the exciting news…we had 2 sac’s but they could only confirm one baby. Dr. Kent said that the second sac would probably disappear but we would check it again in a week. We would have to wait 10 long days to find out if their was a second baby. I was so excited as I knew in my heart we were going to have twins. We were told on October 16th…you have 2 heart beats. WOW 2 heart beats…we have twins. It was the happiest day of my life. Now it all made sense God wanted us to have 2 amazing children.



We spent the next few months in Dr. appointments and ultrasounds and finally we found out we were having a little Girl “Baby A” and a Little Boy “Baby B”. How could we have gotten so lucky... one of each. I truly felt I was the most blessed woman in the world. I have an amazing husband who is my best friend and I love and adore him and now we are expecting 2 babies. I was on top of the world.

My pregnancy went great, I didn’t have any real medical issues and was only put on bed rest in March when the little boy tried to make an early escape. They were both doing great, gaining weight and had healthy heart beats. The little boy had settled into my right side and since he was already trying to escape had now become baby A (meaning first to join the world) and our little girl was hanging out on my left side not in any hurry to leave her mommy's tummy. They were always getting the hiccups. One Saturday morning the little boy started to hiccup and then all of a sudden the little girl had them as well. It was the first time that I truly realized that I had 2 little babies growing inside of me.

As the months past by my excitement grew as I was able to see them in 3D pictures.



By May we had finished their room and were ready to welcome them into the world. I had my C-Section scheduled for May 21st at 11 am.


Calm before the storm, the day that would change my life forever…

On May 21st we woke up early and headed to the hospital. I couldn’t believe the day had come where I would meet Baby A and Baby B.



The C-Section went off without a hitch and by 12:01 pm our little boy was here and by 12:03 pm little sister made her appearance. They handed me our little girl and let me spend a few seconds with her before they quickly cleaned her up and let daddy hold them both for a quick photo opp.
Little did I know that this would be the only time I would ever truly hold my little girl. If I had only known I would have locked it in my memory and asked for just a little longer.



I had to say good bye and off they went to the nursery to get checked out. An hour later they took me to my room and we made a quick stop by the nursery to see the babies. They informed me that they heard a slight murmur on her and were running a test to make sure she was ok.

We ended up in our room and a short time later they brought me our little boy who we had decided to name Landon (no middle name yet as we were not sure what name to give him). We spent the next few hours with Landon getting to know him. After a few hours passed by they informed us that a doctor from CHOC (Children’s Hospital of Orange County) would be coming to our room to let us know what was going on with our little girl who we had decided to name Kapri (we weren’t sure on a middle name for her either). A short time later we had Dr. Gandy explaining to us that Kapri was born with a condition called Critical Aortic Stenosis and that Kapri would have to be transported to CHOC ASAP if we wanted to save her life. They already had a team assembled and were arranging for her transport to CHOC. At CHOC the plan was to take her into Cath Lab and to perform a procedure on her that would hopefully stabilize her long enough to save her life and then allow her time to grow before she had open heart surgery. Since Kapri had a heart issue they wanted to make sure that Landon was ok so they took him back to the nursery to do an Echo on his heart. They came back and told us that he also had a heart condition called Bicuspid Aortic Valve but that it was a mild case and that many people have this condition and it’s nothing to be concerned about at this time. They brought him back to us and assured us it’s nothing to worry about.




Good bye for now…

Once the team arrived at Hoag they got Kapri ready for transport and brought her by the room so that I could see her and say good bye. They weren’t planning on bringing her by my room but thank God for my sister Denise as she arranged for them to stop by on their way out of the hospital (thank you Denise for arranging that to happen). At the time I was thinking it might be the last time I might ever see her alive so I was trying to take in every second with her even if it was only through a small hole in the transport unit. As they left, they handed me a doll and told me to sleep on it so that it would have my scent on it then they would give it to her so she could have my scent with her. Before I knew it they were gone and I was left with the biggest hole in my heart. Here I am a new mother of 2 and only one is with me. How can I be in the moment with Landon while our baby girl Kapri is fighting for her life?



Eric spent the next hour with Landon and me and then headed off to CHOC to make sure Kapri was ok and checked into her room. While he was at CHOC they informed him that the doctor had cleared his schedule and would do the procedure at 7 am the next morning. Within a few hours he would return and we would do our best to try and get some sleep. By 11:30pm we received a call telling us that she was starting to fail and had to be intubated. Sleep was out of the question at this point. Throughout the night we would ask “are you sleeping” only to find the other was wide awake as well. I kept saying if she can make it into surgery then she will pull through this.




Meet Dr. Weiner…

By 5:30 am Eric was leaving to meet with Dr. Keith Weiner to discuss the procedure and what was going to happen to our little girl. He arrived at the hospital and was met by his Uncle Pat (thank you Uncle Pat you were our rock on this day) who sat with him all day. Eric met with Dr. Weiner and was told that he would be making life saving decisions to save our daughters life in the Cath Lab and that we would have to trust him to do what he thought was best for her. Eric was told that he would have to stay in the waiting room and shoulden't leave even for a second just in case the Dr. Weiner needed to talk to him during the procedure. They went in around 8 am and did not finish until @ noon. Eric said it was agonizing as you would wait in this room with all the other parents. Everyone would look down this long hall way when they would hear someone coming to see if it was their doctor coming with news about their child. When the time came for our doctor to walk down this long hallway Eric looked for some kind of sign…right then Dr. Weiner gave him a big thumbs up…she was alive. During the procedure they almost lost her and she needed to have several transfusions but he pulled it off...she was alive.



Back at Hoag, Landon and I were doing our best to keep it together. I loved being able to spend time with him but I could not breath easy knowing my baby girl was not there with me and she was still in danger. Landon was an amazing baby. He was so quite and slept most of the time. We made a pact that if he would be good for us during this time and allow us to focus our energy on Kapri then he could cry all he wanted once we were out of the woods with her.



In CHOC we trust…

Eric spent the next few days running back and forth from CHOC to Hoag and trying to keep me updated and connected to my little girl. He would bring pictures and tell me stories of how wonderful the hospital was and how amazing the nurses were. He said she could not be in better hands. He told me one time when he walked into her room that the nurse who was assigned to her was checking her monitors with one hand and had the other hand in Kapri’s bed and Kapri had her little hand wrapped around the nurse’s finger.



After a few days she seemed to be doing better and they took her off the breathing tube. They started to think she would be able to come home in a few weeks. One of the nurses wrote a note to me from her and took a picture for me since I was still at Hoag.



My stay at Hoag was bitter sweet. My nurses were wonderful and so caring and all of them knew what was going on with our baby girl. They were really concerned and always wanted updates. My night nurse Kathleen was amazing and took such great care of Landon and me. One morning I asked what the name of the nurse was who heard the murmur on Kapri. Melanie was her name and I asked them if I could meet her...I should also mention Neena as she was in the room with Melanie and also heard the murmur. They brought Melanie to my room a short time later and I was floored by the emotion I felt (and still feel) when I met the woman who saved my little girls life. I gave her a hug and said while sobbing “how do you thank someone for saving your daughters life”? She told me the story of what she heard when she was examining her and why she took the steps she did which got her the help that saved her life. Melanie said that at times she doesn’t feel like she makes a difference but when she went home that night she felt she did make a difference…she saved Kapri’s life…without Melanie she would have died soon after birth.



What’s in a name…

While we were at Hoag we had to complete the birth names and forms. As I said before we hadn’t picked out middle names for Landon or Kapri. Eric and I started discussing what their middle names should be and thought we wanted to honor Melanie and Dr. Keith Weiner because without them she would not have made it this far. So we named our little son Landon Keith Snyder and our little girl would be Kapri Melanie Snyder.

Get me out of here…

I stayed at Hoag till Monday (against my will) and was finally released to go home. I couldn’t get out of their fast enough. It was not quite the homecoming I had planned for my babies. Landon would be the only one we would bring home and we didn’t really have any fanfare or celebration.



We went home long enough to pack a baby bag and then hit the road to CHOC so I could finally see my little girl. The drive seemed to take hours and we could not get there fast enough. I remember the elevator seemed like it was broken since it took so long and why were all these people getting off on different floors…didn’t they know I needed to see my little girl and it had taken me so long to get to her. I finally walked into the room and saw my little Kapri…there she was my little Angel. The tears started and wouldn’t stop. I was finally able to touch her skin and hold her hand. She was really pale and they had to intubate her again the day before but she seemed like she was holding her own. She was such an angel and her hair was so soft.



Over the next few days it is all kind of a blur…taking care of Landon and trying to spend every second at CHOC and cringing every time the phone rings hoping it’s not CHOC with bad news about Kapri all the while trying to heal from a C-Section with pregnancy hormones that were running wild. This is not how it was suppose to be…they never mentioned any of this in the baby books.


Meeting of the (Great) minds…

By Wednesday we received a call from Dr. Weiner telling us we needed to get to the hospital ASAP for a meeting. We rushed to get to the hospital where they had put together a full team of people to discuss Kapri’s case. They explained to us that after the Cath Lab procedure they thought that she would be able to stabilize and that we would be able to take her home for a few months and allow her to get bigger before performing open heart surgery. Well it seemed that she was getting worse with every second that passed. They informed us that we would not be able to wait for her open heart surgery like they had originally planned and that we only had 2 options to save her. One was a transplant but because of her size she would probably die waiting for a heart to become available. The other option was a Ross Konno procedure but because of her size they were not sure who could perform such a complicated procedure on such a little baby. Dr. Weiner knew of a doctor in LA but he had zero success with babies her size. Dr. Weiner brought in Dr. Chang who knew of the doctors at Stanford who had been performing this kind of procedure on little ones. They asked us what we wanted to do. Eric and I sat for a short time to discuss what they had just told us and decided that our only option to save her would be to get her up to Stanford if they would have her.

Happy one week Birthday Landon and Kapri…

It’s now been only a week since they arrived but it seems like eternity. The nurses (Alicia, Liz, Jennifer and many more that I can’t seem to remember) were so wonderful at CHOC and they did their best to make her stay there special. They were changing out her bedding one day and they wanted to give her a girly blanket vs. the ugly hospital one she had been on. So they found one that was pink and had lady bugs on it and a heart with 2 stars in the heart (we still have the blanket today, it’s draped over the crib and Landon stares at it often…I tell him that I am the heart and the 2 little stars are him and Kapri).




One of the nurses made her a sign for her bed with her name on it, that sign went with us throughout the journey.




On Friday one of the nurses asked if I would like to hold her…yes I wanted to hold her even if it was with her on a pillow. It took a lot of maneuvering to get all of her wires and tubes situated but they were able to let me hold her in my lap. Once she was there I didn’t want to let her go ...I wanted time to stand still.




Kapri holding mommy's hand


Kapri holding daddy's hand


Waiting game…

They sent all of her medical records up to LPCH (Lucile Packard Children’s Hospital) at Stanford for the doctors up there to review. By Thursday we were on edge while we waited to hear…will they take her or won't they. By mid Thursday we got the call from Dr. Weiner…we were in…they feel they can help her. Now the question becomes when they will have a bed for her. We waited all day Thursday then Friday and finally a bed was open. We would be leaving on Saturday. With everyday it felt like we had a new hurdle to overcome and this was a big one. We went home on Friday and packed up the car to move to Stanford. How do you pack for something like this and what do you need to bring for a newborn. At the time I didn’t even know where Stanford was…as I would soon learn it’s in Palo Alto.

The big move…

Eric and I were relived that they had agreed to take her but were really nervous for the move. This is a major undertaking to move a child of her size and transfer all of her medicines to the new hospital’s equipment. We really trusted the care she received from CHOC and were scared that LPCH did not know our little girl and would not know what to do if she started to fail. Would they know what medicines to give her and how much to give her? Did they know we were having issues with her leg and the pulse? Would they know what to do if she started to fuss. They walked us through the process of the move and assured us that it would be ok. They had been in contact with LPCH and had many meetings to discuss in detail everything about Kapri. By the time the move came there was a binder that had well over 500 pages of notes in it…our little girl was complicated to say the least.

We arrived at CHOC on Saturday morning. They told us the plane had left Stanford and was in route to John Wayne. Eric, Landon and I sat quietly in the room anxious for the team to arrive. At around 2 PM we could hear the team coming down the hall. They rolled into her room and moved fast. The team consisted of a head nurse Lesley, another nurse named Marilyn, Tony the respiratory guy and 2 ambulance drivers that would chauffeur her to John Wayne where another nurse and 2 pilots were waiting to take her on the most important flight of her life to LPCH.



All of the LPCH team was amazing but Nurse Marilyn made us feel comfortable about handing over our daughter to a new team of people. Marilyn had worked at CHOC prior to this so she knew all of their equipment and all of the nurses at CHOC came up to greet her so we felt confident that Kapri was in good hands. The process took a little over an hour and then they were off.

Landon’s first road trip…

We got on the road shortly after she had left. It was going to be a long night as it was close to 5 pm before we were able to get on the road and it was a long drive to Palo Alto. We were hoping that Landon would hold up ok as it was going to be an 8 hour trip and that is a really long time for a one week old to have to be in a car seat. We stopped every few hours for him to eat and stretch. He was a champ and was holding true to his end of the agreement that we had made in the hospital. He didn’t cry once the whole trip.



While we were on the road we were waiting to get a call form the hospital letting us know that Kapri had arrived safely and was checked in ok. We got the call around 7 pm and everything went great and she was settled in for the night. We had overcome another big hurdle and she was ok.

It was a brutal drive for Eric as we were on no sleep. We wanted to go to the hospital to see her before going to the hotel but it was so late and we were exhausted so we decided to go straight to the hotel and got there sometime after 1:30 am unloaded the car and hit the sack.

Welcome to Palo Alto…

Wow what a beautiful place. We woke up early the next day and headed straight to the hospital. We were blown away by the facility and the people.



Because it was Sunday we would not get the full treatment till Monday. We sat with Kapri and held her hand and spent most of the day with her. We left the hospital that night and made arrangements to move from the hotel to the Ronald McDonald house the next day.




Meet Dr. Reddy…

It’s now Monday and we had an appointment to meet Dr. Reddy to discuss Kapri and her surgery. He was busy that morning so we met with Dr. Katsuhide (Dr. Kats for short) who walked us through the procedure that they were thinking of doing on her. One of them was called a Norwood procedure and the other was the Ross Konno. Of the 2 we were hoping for the Ross Konno as it was the better of the 2 options for long term. To understand the complexity of what we were talking about you need to know a few things about the heart. You have 2 valves that pump blood, the Pulmonary valve which pumps blood to only your lungs and the Aortic Valve that pumps blood to your whole body. The Ross Konno procedure would take her Pulmonary valve which was healthy and place it where the faulty Aortic Valve was and then replace the Pulmonary valve with a stint from a human cadaver. The Norwood was even more complex and takes it down to having only one valve that handles everything. We were hoping for the Ross Konno but would not know until they were in her heart as to which one would work for her. Dr. Kats walked us through the different procedures and all of the risks that were involved with them including everything from infection to seizures to strokes to death.

Later that day we finally met Dr. Reddy. He was all business as he shook our hands and explained that our daughter was really sick and he was going to do everything he could to save her life. He had moved around some surgeries to fit her into Tuesday’s schedule. He explained that she would be his afternoon surgery which seemed weird to us as it’s a really complex surgery and you would think you would want to do it when you are fresh in the morning. He explained to us that by doing it second on the schedule he could give her as much time as she needed even if it meant they worked through the night….that made sense.

We spent the rest of the day meeting other doctors and employees of the hospital including our social worker Annie and Dr. Kristie, both whom we love and are so grateful to have met.

Later that evening we moved into the Ronald McDonald House (RMDH) and got settled in. This was going to be our home for a while so we did our best to make it cozy.


Longest day of my life…

We woke up and headed to the hospital early. While we were getting the update on Kapri and how her night had been they informed us that her lung had collapsed and they were able to fix it but she needed to get into surgery soon. It seems like it took forever for them to come and get her for the surgery. We sat by her bed side as long as we could till they made us leave. As your sitting there your thinking this may be the last time I may see her alive. They wheeled her out and we followed them to the elevator and watched the doors close. They had taken her at around 2 pm and let us know that the surgery would be anywhere from 8 to 12 plus hours. So the waiting game began.

Our Family (my dad and Eric’s Parents) had driven up to Palo Alto to stay with us during this time and were at the hospital with us most of the day. Our Grandma Snyder, Aunt Denise, Aunt Veronica and Eddie also stopped by to lend in their support. It was a long day of worrying and waiting and wondering which surgery they will perform and will she survive. By 9 pm that night our family had left and it was just Eric, Landon and me sitting and waiting. We had decided to try and get some sleep or at least lay down on the chairs. At around 10pm Dr. Kristie walked out and offered to check on the progress. She came back sometime after 11 with great news the surgery was going good and they had gone with the Ross Konno…another hurdle was jumped. We quickly called the family with an update. We were happy things seemed to be going our way. It would still be a few more hours for them to finish the surgery. We laid in the chairs and listened for the elevator doors to open. We were on pins and needles waiting then all of a sudden the doors opened and we could hear Dr. Reddy yelling orders to the team as they rushed her down the hall into her room. It was now after 2 am and we were holding our breath to see her. They had warned us that it would be brutal to see her as her chest would still be open. We were able to peek in on her for just a second as they were still trying to stabilize her. We left them to it and headed home for the night. She was in good hands and us hovering was not going to do anyone any good.


Nothing can prepare you for this…

We arrived at the hospital mid morning the next day. The nurse assigned to Kapri was Marilyn her original transport nurse who was amazing to Kapri during her stay at LPCH. Our social worker Annie was there and tried to prepare us for what we were about to see. Nothing can prepare you for what I saw… She was so pale and her chest was still open and the amount of tubes and lines in her were far too numerous to count. They explained that they keep the chest open so that when it swells inside from the surgery it does not put pressure on the heart. No mother should ever have to watch their child endure such pain and suffering. My little girl was such a fighter and was still here fighting. I had to keep that in mind as I sat there with her.



We would spend the next few days by her bed side. We learned how to read her monitors and were getting a crash course on all her drugs. At night we would return to the RMDH and just crash. Though Landon is not mentioned much he is with us 24/7 and has kept to his end of the pact. We had a few nights where he kept us on our toes but mostly he was a good boy sleeping most of the day while we were at the hospital and only crying when he was hungry.

Waking up in a strange place…

In the mornings I would open my eyes and for just one second I would not know where I was or why I was there...it was a second of bliss that I long for each day. Then that second would pass and it would all come flooding in. How was this my life? How did we get here? I was stuck in a little room with my husband and son and we were in a strange city fighting for my little girl’s life. Please tell me this is a bad dream and I’m going to wake from it soon.

Two Week Birthday…

It’s hard to believe that it has only been 2 weeks. I feel as though I have aged 20 years in these 2 weeks. That day Eric had flown home to check on things and I was left to hold down the fort. Landon and I went over to spend the morning with his sister and celebrate their 2 week b-day. It wasn’t much of a celebration but I did have both of my children in the same room and she was still alive so I had hope.

Support along the way…

Over the next week we would spend every chance we had at the hospital with her. Our family also spent every moment they could with her. We had so much love and support from all of our family and friends along the way. All of our family and friends who called and e-mailed please know that you kept us going. We have never felt so much love as we did during that time and even now. There are countless times that you all stepped in and helped us along the way and for that we are so grateful. We were on many prayer chains and everyone was praying to GOD to help our little girl. I want to thank my Mom and Sylvia for taking care of Xena our furry baby and helping out with Landon.

While we were staying at the RMDH we met some wonderful parents who were going through the same things we were. We are so greatful to have met Justin, Victoria and their daughter Moriah (http://momentswithmoriah.blogspot.com)...thank you both for showing us love and support...because of you I have the courage to share our story of Kapri's Journey. Sariah, Andy and their son Conner. Jen,Peter and their son Blake and Amanda (we did not get a chance to meet Amanda’s son). They became our second family as we would see them everyday and every night at the hospital and at the house. I also want to thank the Chez Family (http://lifewiththechezs.blogspot.com) for reaching out to us and for recommending the book "Safe in the arms of God" it has truly helped me in dealing with my loss. I will pray for you and your family as you welcome your new little one into the world.

Time to close her…

Her kidneys still had not kicked in after the surgery but they explained that this was not out of the norm and not to worry just yet. By Tuesday June 9th they had made the decision to close her up. It was a big day as we were moving forward or so it seemed. Dr. Kats did the procedure and everything went well and we were able to see her that evening. Dr. Reddy said good-bye as he was leaving for a trip to India. Though we were nervous about him leaving we knew she would be in good hands.

Three Week Birthday...

On Thursday Eric left to go down and check on the house again and Landon and I had plans to go to the Hospital later that morning. We did our early morning called to see how her night had gone. To my excitement Marilyn answered the phone…I always knew Kapri was in good hands with Marilyn. They seemed to have a bond and I felt much better when she was with her. My excitement was quickly lost when she informed me what had happened over night. She explained that she was bleeding and that they were trying to stabilize her. I didn’t wait to hear the rest as Landon and I rushed over to the Hospital. When we got there you could tell that things had gone south over night and that they were barley getting a handle on her to stabilize her. It seems that around 1 am they noticed blood coming from her mouth. They had to give her several transfusions and believed it was just a stomach ulcer. I was a wreck and Eric was gone. Thankfully my Dad and Eric’s parents were there for support. Dr. Shin came in and explained that though this was a set back it was still something we could overcome. We were still hoping for the kidneys to kick in. We were also watching her left ventricle pressure but the kidneys were starting to become our big worry.


Pray for Pee…

This became our motto…everyday we would pray for pee as it meant her kidneys were working. We would have a little each day but nothing that would indicate they were fully functioning. We were starting to worry as it had been almost 2 weeks since the surgery and she was receiving lots of fluids and without her kidneys working she was starting to swell.

By Friday they informed us that she had an infection that she was fighting. They put her on antibiotics and hoped that it would clear up. It seemed that since her bleed out she had started to backslide.

Marilyn was working on this day and she asked if I wanted to help her give Kapri a sponge bath. Of course I said yes. We spent the next hour cleaning her up and changing her bedding. Marilyn always made sure she was clean and had nice bedding. One day I came in and found 2 beanie babies in her bed with her…Marilyn had brought them in and was using them to prop up her breathing tubes and arms. One of the beanies was a duck that we named Duck Reddy and the other was a bird that we named Marilyn Bird.

She had started to swell from her kidneys not working so over the weekend they started Kapri on different medications to try and jump start her kidneys. Nothing seemed to be working so they started her on manual dialysis. Dr. T-Moore (Teimour Nasirov) spent the entire weekend watching over her as they did the dialysis. You could tell he was worried as he sat by her bed side. At this point I still had hope…but our pray for pee prayer was not being heard.

Great news for Landon...

We made an appointment with Dr. Kristie for Landon to get another Echo on his heart. We were thrilled when she gave us the good news that he did not have a Bicuspid Aortic Valve and that he is a healthy baby.

Here is where we stand…

By Tuesday her kidneys were still not working and so they had scheduled a meeting with Dr. Roth to discuss her case. We went to our meeting with Dr. Roth and our social worker Annie joined us. We shared with Dr. Roth our good news about Landon and hoped that he would follow with something positive about Kapri. That would not be the case. He informed us that she was not getting better as they had hoped. Her left ventricle was still thick and they believed that she was dealing with an underlining condition called Hypertrophic Cardiomyopathy. At this point they could not rule out that she might have this condition and the only option was to biopsy it which was out of the question as we did not want them to open her up again or we could try to put her on the heart lung bypass machine to see if it would relax over the next week and if it did then we would know that she did not have this condition. Dr. Roth explained that we were out of options as she was no longer a candidate for a transplant and her heart was not getting better. Dr. Roth explained all of the things that could go wrong while she was on the heart lung bypass machine and it did not sound promising but it was our only option so we made the decision to try the bypass machine and they decided that she would go on it in the morning.

We stopped by her room to say goodnight and left to try and get our heads around what was happening. We got back to the RMDH and just sat in sadness as we tried to eat dinner. We kept saying that miracles happen all the time so why can’t she be that miracle. We knew that they had done this on other patients and it had worked so why can’t she be one of the sucess stories. We had to stay positive... she needs that from us. If we can’t keep cheering who will. As we sat all of our friends from the house noticed and could tell something was up. We explained what was going on and everyone sat with us to comfort us and somehow it made it ok. They understood and that was huge for us.

That night was a rough one as Landon did not want to go to sleep. I had to sleep on the floor next to him and keep rocking the chair he was sleeping in…didn’t he know we were tired, couldn’t he see we needed our sleep. It seemed like GOD was testing us…but why…didn’t we have enough on our plates.

How do you say good-bye…

I woke up the next morning dazed and sad...only this morning I had no second of bliss as my thoughts were on Kapri. I knew it was a big day and I wanted to get to the hospital to spend time with her.

Eric had decided to let me go and he would join me later. I got to the hospital and passed Marilyn in the hall, she asked if I had met with Dr. Roth yet. I said yes last night and she said no have you talked to him today? I could tell something was up and asked her what was going on? I could tell she was sad and she just told me I needed to talk to him. When I got to Kapri’s room I met Rita so I knew something was up. Why wasn’t Marilyn working with Kapri, she always had her when she was working. Rita was amazing and so kind as were all of the nurses. I asked her what was going on and she just said Dr. Roth wanted to talk to us. I could tell it wasn’t good. I know they are not suppose to say anything but I guessed what was going on and she confirmed my suspicions. I said “they don’t want to do the bypass machine do they”? She nodded her head and right then I knew they were going to ask us to say good bye.

I called Eric and told him to come ASAP and told him what was going on.

It would be a few hours before Dr. Roth would meet with us but we knew already. He explained that they had gone over her charts that morning with the entire staff. They looked at everything and all come to the same conclusion that putting her on the bypass machine would probably not work and we would loose her if we tried it. At this point she was starting to fail on many levels and she was in pain and putting her on the machine was only going to add to her pain and she would more then likely die while she was on it. I couldn’t put her through that as much as it kills me to make this decision my little girl needs to be out of pain even if it means that I am in pain the rest of my life from loosing her, I would rather feel that pain then put her through anymore.

They told us they would do what ever we wanted and that the choice was ours to make. Eric and I sat and quickly agreed that we had to let her go as it was the only decision we could make that would get her out of pain. We had run out of options to save her life. We told them our decision and they agreed but wanted to talk to Dr. Reddy in India one last time to make sure he agreed with us as he was the only one who actually saw her heart first hand. In my heart I was hoping he would say hold off, I think she might recover if we give her a few more days or maybe he had some magic trick up his sleeve that we could try. But I knew it was a long shot. We waited all day for him to call as day turned into night.

Our nurse Rita was amazing, we couldn’t have asked for a better nurse to spend the last day with us and our little girl. Though we love all of the nurses and Marilyn especially, Rita was sent to us from heaven. Rita and Annie made sure our day was special. They made her hand prints in clay and cut off a lock of her hair for me. Then they picked out a beautiful dress and blanket for her and had made a plan for us to be able to hold her. By this time Dr. Reddy finally called and he agreed that nothing more could be done.

Though it was hours past the shift change Rita chose to stay with us and see our journey to the end. We left the room as she and Annie put the dress on Kapri and wrapped her in the blanket. Eric and I stepped back in and held her for just a short time. You would think that I would have wanted to hold her for hours but at this point it would have been selfish of me to do that to her. She was in pain and we had kept her too long on this earth. She was God’s child and we were keeping her from moving on. It was time to let her go and be in peace. We gave her a kiss and said good bye little angel we love you.

Life without Kapri…

How do you make sense of something like this? I believe that in life everyone is dealt a hand... some are harder hands then others but everyone has a hand that God has dealt them and this is our hand. For the rest of my life I will be a mother of a child who has passed away. Why did I get this hand I’m not really sure. I also believe that everything happens for a reason and that there is a purpose for everything. Many people have asked us how you handle something like this. Well to start with you really only have 2 options. You can curl up in a ball and stop living life or you can embrace what you have been through and allow it to make you stronger. I chose to look at Kapri’s life as a journey that she took Eric and me on. I think that while this was going on God was carrying us through it and giving us strength. Instead of being sad for what he has taken from me, I look at what he has chosen to give me. I have a wonderful husband who has been my rock. He has been there for me and has shown me time and again why I love him so much and why I am honored that he is the father of my children. I have an amazing son in Landon. He has given me a reason to get up in the mornings and will continue to be my reason to keep going. Because of Landon I can still believe that there is a God as only God could make such an angel.

When we arrived home from Stanford we received many cards and condolences from all of our family and friends and we want to thank you for all of your donations to the Band of Brothers that you made in Kapri's name. I want to thank everyone and let them know we are so blessed to have you in our lives. One of the cards we received from the Bayat's had a poem in it that I read everyday...

She is gone

You can shed tears that she is gone
or you can smile because she has lived.

You can close your eyes and pray that she’ll come back
or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone
or you can cherish her memory and let it live on.

You can cry and close your mind,
be empty and turn your back

or you can do what she’d want:
smile, open your eyes, love and go on.

How do you go on…

That is a good question for which I will spend the rest of my life trying to figure out. As I said before I feel I am blessed. I know that may sound weird coming from a mom who has just lost her baby but I know that one day I will get to see her again. I have something to look forward to when I die. I will get to see all of my babies in heaven. Though I am not looking to go there any time soon but when the time comes I won’t be sad nor should you be sad for me.

I believe that Kapri was not meant to live on this earth so how can I be sad that she is gone. While I wish that she was here with me now I believe her life was about her journey and her death. She opened up our eyes to a world we would have never known. From learning about heart conditions to the compassionate people who run the Ronald McDonald house to the people we met along the way and even the doctors and nurses who were so wonderful at CHOC and LPCH. Her mission in life was to open up our eyes to the world around us and to show us that there is more to life than we were living. I believe she was a twin so that when she passed away we would be left with her other half and he would keep us going.

What now…

I'm not sure. I know that her life and her death will lead to something amazing but I can’t say for sure what that that will be. As I said before Eric was in Vietnam last summer on a mission with his charity group the “Band of Brothers” http://www.bobf.org. While they were there visiting with the children from the orphanage that we sponsor the Government asked if we would help to fund a few minor heart surgeries. They met with the families of 4 children. The parents pleaded with them to help their children. The 4 surgeries would only cost a total of $4000 for all 4 of them. How could we say no to giving them a chance at life. They came home from the trip and the Band of Brothers raised the money for the surgeries. All 4 of the children were given a chance at life.

While we were going through this with Kapri, Eric said that he could finally understand that pain the parents felt while they were crying and asking to save their children’s lives We were those parents. We are not sure exactly what we will do to honor her but we are looking into helping children in less fortunate countries and helping them so that their parents to not have to go through what we went through.


Life with Landon…

And so we are left with a hole in our heart but a love so strong for Landon who is amazing. I am honored to be his mommy and will spend the rest of my life making sure he is loved and cared for. Watching him grow up has been the greatest gift and he is such a blessing. When the time comes we will tell him all about his amazing little angel named Kapri who watches over him. We will continue to update his life and our family's life on our family blog lifewiththesnyders@blogspot.com