Monday, February 6, 2012

Our Journey

Tomorrow is officially CHD awareness week.  Here is Bob's story, its long, but its good for our journal.

In June 2009, our lives changed. We had just brought home our daughter a couple of weeks before after a long two week stay in the hospital after being born premmature. We had just had to make one of the hardest decisions of our lives and didn't think anything else could go wrong.  Who knew my Husband was dying on the inside, but looked just fine from the outside.

Bob had scheduled an echo for the week that Lexi was born, but ended up moving it to June. He had gone several months with a pain in his chest and it was a week before our daughter was born that I FINALLY convinced him to go the hospital. I wasn't sure what was wrong, but I didn't think it was anything big. The doctor advised Bob, that he needed to get an echo done. I'm sure there is more to the story that Bob hasn't shared with me and I think I'm okay not knowing. So June 19th, he was scheduled to go, I wasn't going to go, but something told me I needed to go and I called my Mom up last minute to watch the kids.

We arrived at the doctors office, I had never seen an echo done, so I wasn't sure how it all worked out, but didn't think it would be much different then a ultrasound, just the heart instead of a baby. The room was quiet, we had a sweet girl technician, she talked a lot, but said nothing about what she had found. She said "I'm going to show these to the cardiologist, I'll be right back." I thought it was routine, that she just needed to make sure that he needed nothing more and we would be on our way. What I didn't expect was for her to come back with the cardiologists. He sat down, looked me in the eye and said "You're Husband is very sick and we need to run some more tests right here, right now." I was shocked, I couldn't believe it. He looked fine. He said "Your Husbands heart is 4 times bigger than it should be." Bob left the room, he went to the bathroom as they had told him they wanted to put in an IV. When Bob left, the cardiologists looked at me and said "Mrs Clemments, this is serious, we don't have time." I wasn't sure what to say, I don't think I said anything. Bob walked back into the room and they started an IV, he talked to us some more and said that we could leave, but needed to come back first thing Monday. Leaving was strange, I was scared, shocked, worried, anxious to know and down right broken. I didn't call anyone, I just looked out the window in shock. Bob and I didn't say anything. We drove to my parents house and picked up the kids. I remember telling my Mom that I wasn't sure my Husband was going to live and neither was doctor. I said "How do you prepare yourself?" She didn't say much, just told me to stay positive. I remember I kept it together the whole weekend, I was good at not crying then. Bob and I talked about what to do several times. He assured me he wasn't giving up anytime soon and not to give up on him.

Monday was deja vu all over again, we dropped the kids off and headed to the office. This time we met with the cardiologists in his office where my life completely came tumbling down. He said "Bob is sick, very sick and he willl need a heart/lung transplant." I said "WHAT?" He proceeded to talk about how he had a rare blood type and that it would be a long process and that he probably wouldn't make it and that he wanted to run all these tests to see if anything could be done. I remember falling to my knees, I cried so hard, I begged and pleaded with God to please save my Husband. Bob stood there in the chair, he didn't say much. He just wanted to know what he needed to do and go from there. He said "Sierra, I've lived a good life and if its my time, then we can't change that, but I'm not giving up that easy." We scheduled a series of tests, starting with a heart cath, EET and some other small ones. We left the office and I couldn't control myself. I remember texting a few people, calling a good friend and just sobbing. I called my Mom and told her to meet us at my house. My Sister had my kids and she followed. My Sister dropped the kids off with my neighbors, I couldn't let them see me this way. We sat down at the table in my kitchen and I said "How do you prepare yourself for the worse news ever?" "How do you prepare for yourself for your Husband to die?" "How do you tell your babies that their Daddy won't be here long?" A million things ran through my head a million times. My Dad was gone to Korea, he had left the day Lexi was born and at that time the only thing I wanted was my Dad to tell me that everything was going to be okay.

The next several weeks were the longest of my life, Doctors had no clue what Bob had or anything. I was scared to sleep at night, I had horrible dreams and I couldn't stop crying. I watched my kids and I cried, I looked at Bob and I cried, I read blogs and I cried. I wondered how people could go on while my world was crashing. I wanted to climb into a tiny hole and never look back. But I didn't, I got online and researched, I found blogs, I found support groups, I found friends and I clinged to them all. I blogged about how I felt, I called my friends, I called my co-workers and bawled, I clinged to everyone of them. I asked for prayers and I begged and pleaded and prayed and prayed and prayed.

We started tests, first with a EKG, then EET (I think thats the name) and then a heart cath, we arrived at the hospital at 5am and didn't leave until 9pm. Bob was in the cath lab for 5 hours and I was called in. His cardiologists said "I have good and bad news, good news is that he won't need a transplant right now and bad news is that he will need open heart surgery or he will die." At this time they weren't 100% sure of the diagnosis, but knew is was CHD. Bob was taken to recovery and I met him there and we were to follow up with his cardiologists the next day. I left feeling a sense of relief, but I was still scared. The next day Bob was sitting his is chair downstairs and he heard a POP, he came running up where his leg was already turning blue from the blood bleeding through where his cath was done. I called 911 and they came, his vitals were fine and I rushed him to the ER, they immediately took him back and applied pressure to his leg for 2 hrs. We finally got released and met with his cardiologists. He said Bob needed open heart surgery and that they were 90% sure the they could fix his heart. I told him I wanted the best surgeron and he said the U had the best one. We needed to do a couple more tests before he coud do surgery. Bob needed a cardiac MRI and some bloodwork done and another echo. We spent the next couple of weeks doing this and met with the surgeon on July 13th, he said Bob needed to get in, that he was like a ticking time bomb and scheduled him for Friday July 17th, 2009. My Dad had returned home on the 11th and I remember picking up my kids and bawling on my Dad's shoulders. I told my parents I didn't want my boys to be there, that it would be hard on me and I didn't want them to see everything going on. My Parents had planned to take the boys out of town, but only if I was okay with it. I told them "Please take them and go, I need to cry if I want to cry!"

The surgeon said the surgery would take 4-6 hrs and that he would go to ICU and then get transferred to the floor. He said he didn't think the surgery would be that bad and that everything would be fine.

The day before we made arrangements for Bob to get a blessing, my family joined us along with some of my close friends. I also got a blessing for peace. I felt good, I got a good night sleep and we woke up at 4am, headed to drop off the baby, then to the hospital where we needed to check in at 5:30am. I was fine up until the doctors came in and said they were ready to take him and that they would give us 5 mins together. I told Bob that I loved him and that I knew he would be okay. He said "Sierra, don't worry about me, its all in Gods hands." I knew he was right, but it was when I walked into that waiting room that I lost it. The first 3 hours went by quickly, I got a phone call every two hours giving an update, but nothing ever changed. At 1pm, I was told that I should probably have a family member join me. Bob had been in surgery since 7:30am and I hadn't a clue what was going on. I was getting sick to my stomach, I couldn't eat and I was scared. My Sister Miranda arrived a little before 3pm and kept me company. At 5:30pm, his surgeon came out, he didn't look too good. He said "Bob is badly beaten up, when we got in there we realized things were worse than we thought, I can't believe he is 36 and alive." I said "Oh no, is he okay!" He said "Right now, he is being watched in the OR for bleeding and once they feel he is stable, they will move him." He went on to explain that Bob had Tetrology of Fallot and that he had 3 holes in his heart and they could only close up 2 without putting in a pacemaker. He said it was all tricky and that he was in bad shape and very critical. I bawled and sent out texts for prayers. He advised me to get some dinner and then head back and Bob should be in ICU. I left for 30 mins, I didn't have cell service downstairs, but the Liason Nurse was looking for me when I got off the elevator, she said "You're Husband started bleeding badly, they took him back to the OR and had to open him up again and things are bad!" Right then, I got a call from the OR nurse, she said Bob was in bad shape and they were trying to save him. I fell to my knees and begged and pleaded. I called Bob's best friend and advised him to come down. I called my parents, I was sure that I would need them to bring my boys back to say bye to their Dad. I felt so alone and so scared. At this point, I was sure Bob wasn't going to live and a million thoughts went through my head. I prayed out loud all by myself with my Sister and the nurse in the waiting room. Around 8:45, Bob's surgeon headed back out to talk to me. He said "Bob is in horrible shape, its like he got hit by a semi, he been in surgery since 7:30am this morning and its very critical right now." He said they would be taking Bob to ICU around 9PM and that I should be able to see him around 9:30pm. Talk about the longest moment of my life. All I wanted to see was my Husband, I needed to know he was alive. We went downstairs around 9:30pm, had to wait a little to see him as they had just transferred him. I guess I wasn't prepared for what I had seen, because the moment I saw him, I thought he was gone. I thought they had brought me into hs room to say good-bye. He had the most amazing nurse the first night, she was so comforting and had it not been for, I think I wouldn't have felt okay leaving. She explained that everything was normal for being in surgery for 14 hrs and that he was doing good considering what he had gone through. She said the next 24-48 hrs are critical and that he was in the best hands possible. Bob's best friend arrived shortly after we went to the room, he didn't recognize Bob, but told me to leave and get some sleep. I knew I needed too, by this time it was almost 11pm and I had been up since 4am. I kissed my Husband good-bye, told him I loved him and that he needed to be strong.

The ride home was horrible, I bawled, I yelled, I pleaded and just sobbed. I was angry. I posted a post on FB asking for prayers. I said "Its been the longest day of my life and my Husband is in critical condition, he needs prayers and so do I, I can't lose him."

The next morning I woke up and went to the hospital early, when I arrived, Bob looked so much better. He had color to him, they were weaning him off his vent and he was moving. I grabbed his hand and he gripped mine, I knew at that moment, that he would be okay. I said "Our prayers have been answered Bob, you're going to be okay!" I said "The boys wanted me to tell you that they love you and miss you" He whispered back with his breathing tube in "I love them too."

Bob was taken off the vent around noon that day and did great. He was moved to the floor 3 days later and then to the floor and released 6 days later.

I thank all the surgeons, doctors, nurses and people who worked on my Husband that day. They saved his life, they took good care of him and angels were watching out for him. He is a walking miracle.

Today, he is doing great. We just cling to hope and live one day at a time. Life is way to precious and no one should take anything for granted ever. I have learned so much about life. I believe there is life after death, I believe everything happens for a reason. I believe that it wasn't Bob's time to go and that, that is why he is here today.

1 in 100 babies are diagnosed with CHD. Many, like my husband don't find out until its too late or later in life. Bob was just told he had a VSD his whole life. I firmly believe that had Bob been diagnosed earlier in his childhood that he may not be alive, but I could be wrong. Technology is amazing nowadays. They didn't have the technology or knowledge that they do now when Bob was a child.

Bob doctors say everytime we see them what a miracle Bob is, its unheard of to go 36 years and not know you have a congenital heart disease. Bob was adopted at 3 years old and didn't know much of his family until he was 27. His Grandpa had heart problems and ended up dying from them. Heart disease is all around if you look. Its crazy how much it affects people and how many babies are born each year with heart disease.  I'm a firm believer that every baby should have an echo after birth, it may save lots of lives.  All 3 of my kids have been tested and each one has a murmur.

There are so many amazing support groups out there also, I don't think I could've done it without all the knowledge or knowing that everything would be okay, the things they have nowadays are amazing. I'm also a firm believer that everything happens for a reason. I believe my daughter was born 6 weeks early, because God knew that our heart journey was going to begin around her due date. I believe my Daughter was sent here for a reason. I believe she helped Bob recover quickly. Bob and Lexi have a bond like no other. I also believe in MIRACLES.

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