Monday, March 28, 2011
Friday, March 25, 2011
Back To Neurology
After talking with Eli's cardiologist about his blue neck, he ordered an ultrasound of the vessels. We had that at the end of the same week his cardiology appointment was. They were trying to coordinate an appointment we had already scheduled for that same day. I thought great why drive down there twice right? The first appointment time they tried to give me was only 30 minutes before and I thought there is no way. You need to leave time for it taking longer than expected, time to walk from point A to point B, check in time, etc. So then they gave me 1 1/2 hours before the other appointment and I thought surely that should be enough time. Well what was suppose to take 40-50 minutes took over 2 hours. And the location of the ultrasound they were doing typically are only performed 5 times a year total, if that. So the ultrasound tech they gave me had never actually performed the test. So another tech ended up coming in and taking over. Totally not the other techs fault. The last image she went to capture showed something VERY wrong. The picture she was trying to get, she had to place the wand on the back of Eli's neck. The vessels are suppose to be the same color. Eli's were NOT. One was CLEARLY blue and one was CLEARLY red. This means one of the vessels is carrying the blood the wrong way. So there were other images she was trying to get to give us an answer but it wasn't presenting itself for her. We went to the other appointment and I was fine. But as always the longer I have to think the more panic, reality, and not good thoughts set in. So I called the cardiologist to let him know how things went and that if he could he should look at the results. He called back and we talked. He gave me some explainations that totally made sense (you have to know Eli's not so normal anatomy to understand), but also said he wanted to talk to Neurology. Of course this was at 5pm on a Friday and Neurology was gone. And of course it takes time for doctors to talk, email, etc. because of how busy they are. I've been fairly successful at not worrying thinking about the test and what it means. That is until yesterday. The cardiologist and the head of the neurology department concluded that Eli needs to be seen at the very least for a consult. They can't rule out some of his symptoms as being caused by this wrong way blood flow.
Now of course I know nothing about how the brain or blood flow works. Talk about the heart and well I completely understand that. The more time my husband and I have to think and contemplate this information or the lack of information the more we don't really understand how it can be good that the blood is flowing the wrong direction. Of course with all this information (or the lack thereof) you have to take into account Eli's abnormal anatomy.
So there you have it. Back to neurology we go.
Now of course I know nothing about how the brain or blood flow works. Talk about the heart and well I completely understand that. The more time my husband and I have to think and contemplate this information or the lack of information the more we don't really understand how it can be good that the blood is flowing the wrong direction. Of course with all this information (or the lack thereof) you have to take into account Eli's abnormal anatomy.
So there you have it. Back to neurology we go.
Thursday, March 17, 2011
Happiness Is.......
Watching my little "superman" "fly" up the driveway after he gets off the bus. (Notice his arms out in back of him?)
A musical performance. (Make sure your sound is turned up. He really gets going on the chorus.)
The first signs of spring.
A musical performance. (Make sure your sound is turned up. He really gets going on the chorus.)
The first signs of spring.
Monday, March 7, 2011
That's Not What I Was Hoping
Having a child who has multiple serious heart defects that WILL get worse and it's just a matter of when, tends to make me think in different terms than most. Before I take Eli to the cardiologist I start thinking "I hope it's not....." or "if it's going to be anything let it be......". When I say things like this people think it's me just being pessimistic. Nobody wants to have things get worse. Everybody wants things to get better. But when the fact is you eventually will get the dreaded news of "surgery" you start preparing yourself.
So shortly after Christmas we began seeing changes in Eli that could be his heart. However, we couldn't jump to conclusions and assume it was his heart. Afterall he's going to have normal kid things happen too. I was just watching him as I always do to see if they go away. I was doing rather well until my husband noticed Eli's neck turning blue. It was only his neck, it wasn't all the time, he had no other emergent symptoms and it only seemed to happen when he exerted lots of energy. And as always we had other people see it just to make sure we weren't imagining things. Of course this magnified my already normal anxiety before our cardiology appointment. So of course I started in with my "I hope it's not....." and "if it's going to be anything let it be......". This appointment couldn't have come fast enough.
Well the cardiology appointment was today and as the title says it wasn't the news I was hoping. If it had to be anything naively I was hoping for his mitral valve or coarctation (we learned today we probably don't want the coarctation either). That's not what it was. It was the one thing that scares me to the core (before today that is). His subaortic stenosis (SAS) is back, it's growing and now his aortic valve is leaking. Thankfully it is growing at a much slower rate than it did before. It's not at a place we need to go back in and do surgery yet. But if it continues on its current path my prediction of the next surgery being between the age of 6 and 7 will be correct (he turns 6 is 1 year and 4 months). Out of all his problems I HATE this one the most. It causes NO symptoms. If it changes it's mind on how fast it wants to develop and developes quicker, Eli could drop while simply running around being a kid. Not because the cardiologist isn't watching this SAS, but because that is just the way Eli's body works. It likes to throw you for a loop. The other reason this scares me is that out of all the times we've come so close to loosing Eli the only time he was in surgery was when they were fixing this problem. I really am having a hard time putting into words the fear in my mommy heart. Thankfully Jesus knows.
So all the symptoms we were seeing are not really heart related. I now have to question whether he is getting anemic again. Unfortunately heart issues and being anemic often go hand in hand and the symptoms of anemia actually are some of the same as heart problems including: fatigue, weakness, pale skin, chest pain, dizziness, coldness in your hands and feet, trouble breathing, fast heartbeat, and headache. It seems to be a never ending cycle.
As for the blue neck? Well we got three explanations. 1) Eli's aorta is formed like a steeple instead of a candy cane. His coarctation is where the carotid arteries and other vessels go to the brain (this is why surgery or cath procedures to fix it would be very bad). Because of the way the blood flows through his aorta and into these arteries and veins it can cause these to enlarge. This would make all his vessels much more visible. 2) When they do heart surgery there are certain tubes and wires that go down the veins and arteries in his neck. After you have had several surgeries these vessels can develop what is essentially scar tissue which could cause a blockage or kink. The fluid will then go from the main vessels into new smaller ones. 3) They have no idea but they will be watching it and adding it to the many other puzzle pieces that make up Eli. I don't have a preference which one of these it is. I just would like an answer instead of adding more pieces to an already difficult puzzle.
It typically takes me a few hours at least to process how the appointment went and right now I think I'm worse than I was before the appointment. I was okay at first. But now the more I think about it I realize the more I was hoping for something I was could at least see symptoms. Not something he could die while running around like a normal little boy.
So shortly after Christmas we began seeing changes in Eli that could be his heart. However, we couldn't jump to conclusions and assume it was his heart. Afterall he's going to have normal kid things happen too. I was just watching him as I always do to see if they go away. I was doing rather well until my husband noticed Eli's neck turning blue. It was only his neck, it wasn't all the time, he had no other emergent symptoms and it only seemed to happen when he exerted lots of energy. And as always we had other people see it just to make sure we weren't imagining things. Of course this magnified my already normal anxiety before our cardiology appointment. So of course I started in with my "I hope it's not....." and "if it's going to be anything let it be......". This appointment couldn't have come fast enough.
Well the cardiology appointment was today and as the title says it wasn't the news I was hoping. If it had to be anything naively I was hoping for his mitral valve or coarctation (we learned today we probably don't want the coarctation either). That's not what it was. It was the one thing that scares me to the core (before today that is). His subaortic stenosis (SAS) is back, it's growing and now his aortic valve is leaking. Thankfully it is growing at a much slower rate than it did before. It's not at a place we need to go back in and do surgery yet. But if it continues on its current path my prediction of the next surgery being between the age of 6 and 7 will be correct (he turns 6 is 1 year and 4 months). Out of all his problems I HATE this one the most. It causes NO symptoms. If it changes it's mind on how fast it wants to develop and developes quicker, Eli could drop while simply running around being a kid. Not because the cardiologist isn't watching this SAS, but because that is just the way Eli's body works. It likes to throw you for a loop. The other reason this scares me is that out of all the times we've come so close to loosing Eli the only time he was in surgery was when they were fixing this problem. I really am having a hard time putting into words the fear in my mommy heart. Thankfully Jesus knows.
So all the symptoms we were seeing are not really heart related. I now have to question whether he is getting anemic again. Unfortunately heart issues and being anemic often go hand in hand and the symptoms of anemia actually are some of the same as heart problems including: fatigue, weakness, pale skin, chest pain, dizziness, coldness in your hands and feet, trouble breathing, fast heartbeat, and headache. It seems to be a never ending cycle.
As for the blue neck? Well we got three explanations. 1) Eli's aorta is formed like a steeple instead of a candy cane. His coarctation is where the carotid arteries and other vessels go to the brain (this is why surgery or cath procedures to fix it would be very bad). Because of the way the blood flows through his aorta and into these arteries and veins it can cause these to enlarge. This would make all his vessels much more visible. 2) When they do heart surgery there are certain tubes and wires that go down the veins and arteries in his neck. After you have had several surgeries these vessels can develop what is essentially scar tissue which could cause a blockage or kink. The fluid will then go from the main vessels into new smaller ones. 3) They have no idea but they will be watching it and adding it to the many other puzzle pieces that make up Eli. I don't have a preference which one of these it is. I just would like an answer instead of adding more pieces to an already difficult puzzle.
It typically takes me a few hours at least to process how the appointment went and right now I think I'm worse than I was before the appointment. I was okay at first. But now the more I think about it I realize the more I was hoping for something I was could at least see symptoms. Not something he could die while running around like a normal little boy.
Wednesday, February 23, 2011
Healing Begins
I must start this post by saying that this is NOT a vent about my husband or our relationship. I truly believe that the evidence of Christ in our lives is most profoundly seen by the circumstances we go through and the trials we face. It's in our stories that people most readily see His unending love.
I did this post last week in response to a blog event a fellow heart mommy hosted. In my post I admitted that the relationship with my husband had not brought us closer together through our dealing with Eli's heart defects. Another heart mommy read my post and was very thankful for my honesty because she too is struggling. She asked me to do a follow up post on how we have gotten to the place of beginning to heal. I think in order to see how we have gotten to this healing place you need to look back to where it began.
I will never forget that moment in the ER as they took my dying infant son from my arms and began to work on him to save his life. As they took him, I held my husband as he sobbed uncontrollably (and understandably) as he truly believed our son was going to die. That was the first moment God gave me the instinct to know that Eli was going to be okay. I couldn't tell you why or how I knew that. I just did. What I didn't know is that was to be the last time I truly saw my husband sob uncontrolably over our son until very recently. As we went through the process of Eli being transferred to the Children's Hospital more than an hour away, the eight days we were in the hospital, the surgery and the following week after we were released we coped together as a couple quite well I thought. Sharing thoughts, fears, feelings, etc. As we rushed (at more than 80 mph - I'm glad we didn't get pulled over) back to the Children's Hospital somehow our relationship began to change with that trip. Once we arrived at the hospital, they inserted the drain tubes to allow the fluid to escape from my son's chest cavity and we were taken to our room "on the floor". I had to go eat and make some phone calls. My husband and I made plans on where to meet. I went to go get food and wait for my husband to arrive at "the" meeting place. But he never showed up. I called his cell, waited and finally called the nurses on the floor and asked if they had seen him. They told me he was in my son's room. When I got back, I lost it. My husband started to shut down that day. He shut off his emotions, his feelings, and most importantly he shut off his communication with me. After we returned home from that seven week stay, the communication continued to break down. When I would want to talk about Eli, my husband would do this exhale of breath that would signal he didn't want to talk about it. So I stopped turning to him. Thankfully God put a WONDERFUL AMAZING person that is my BFF into my life. During the last two years I was able to turn to her with EVERYTHING about Eli. She listened, cried, talked, laughed, worried ...... right along with me. My husband continued to bury his feelings instead turning to cigarettes. If he was worried, scared, angry or anything else he smoked. We began spending less and less time just spending time together in our own home. We would each get on the computer or do anything but spend time together. Of course this lack of communication spread to other areas other than just Eli. It spread to our finances as well. My husband made some decisions without communicating to me what exactly was happening and what he was doing. It was these circumstances that brought our communication issues to the surface. Some might not think this has anything to do with our road with CHD's but it truly was our lack of communication that really had spread it's ugly arms. It was just in other areas. The other side to this is that my husband was trying to protect me. From everything. He didn't want to see me suffer. So it made communication all the more difficult. Of course I didn't see this at first. I was too angry about the financial issues. I wanted a divorce and told my husband so. My husband did not and was willing to do anything to fix it. Once the financial issues surfaced, communication had to follow. It had no choice. They were caused by not communicating. Our pastor told each of us to focus on ourselves and let God deal about the rest. So my husband was to focus on changing himself and turn to God and I was to focus on myself and turn to God. So we each did what we were advised. I was still angry, but we started reading our Bibles together. As we began reading our Bibles together communication slowly started to begin. At first we began to talk about just the money. I took control of our finances and I am better at communicating what is happening with them than my husband. But then the communication about Eli started to open up. I finally admitted to my husband that when I get testy and nitpicky about things that seem so trivial it's actually that I'm struggling to not obsessively worry about Eli. I had never been able to say that before. Then slowly my husband started to open up. And then he broke down and sobbed just as he had done in the ER that night that changed our lives forever. He admitted how scared he is. He admitted that if something happens to Eli and he is taken home to be with Jesus, I would not be the only one sporting a white coat. It has taken off from there. It is slow and gradual and whenever my husband does that annoyed exhale, I remind him that is how we got into our mess in the first place.
So if someone were to ask me the short answer to the question "how did you come to the place of beginning to heal"? I would tell them Jesus. He is the ONLY reason that I didn't leave. He is the ONLY reason we started to communicate. We both followed our pastor's advise. You focus on you and let God take care of the rest.
I did this post last week in response to a blog event a fellow heart mommy hosted. In my post I admitted that the relationship with my husband had not brought us closer together through our dealing with Eli's heart defects. Another heart mommy read my post and was very thankful for my honesty because she too is struggling. She asked me to do a follow up post on how we have gotten to the place of beginning to heal. I think in order to see how we have gotten to this healing place you need to look back to where it began.
I will never forget that moment in the ER as they took my dying infant son from my arms and began to work on him to save his life. As they took him, I held my husband as he sobbed uncontrollably (and understandably) as he truly believed our son was going to die. That was the first moment God gave me the instinct to know that Eli was going to be okay. I couldn't tell you why or how I knew that. I just did. What I didn't know is that was to be the last time I truly saw my husband sob uncontrolably over our son until very recently. As we went through the process of Eli being transferred to the Children's Hospital more than an hour away, the eight days we were in the hospital, the surgery and the following week after we were released we coped together as a couple quite well I thought. Sharing thoughts, fears, feelings, etc. As we rushed (at more than 80 mph - I'm glad we didn't get pulled over) back to the Children's Hospital somehow our relationship began to change with that trip. Once we arrived at the hospital, they inserted the drain tubes to allow the fluid to escape from my son's chest cavity and we were taken to our room "on the floor". I had to go eat and make some phone calls. My husband and I made plans on where to meet. I went to go get food and wait for my husband to arrive at "the" meeting place. But he never showed up. I called his cell, waited and finally called the nurses on the floor and asked if they had seen him. They told me he was in my son's room. When I got back, I lost it. My husband started to shut down that day. He shut off his emotions, his feelings, and most importantly he shut off his communication with me. After we returned home from that seven week stay, the communication continued to break down. When I would want to talk about Eli, my husband would do this exhale of breath that would signal he didn't want to talk about it. So I stopped turning to him. Thankfully God put a WONDERFUL AMAZING person that is my BFF into my life. During the last two years I was able to turn to her with EVERYTHING about Eli. She listened, cried, talked, laughed, worried ...... right along with me. My husband continued to bury his feelings instead turning to cigarettes. If he was worried, scared, angry or anything else he smoked. We began spending less and less time just spending time together in our own home. We would each get on the computer or do anything but spend time together. Of course this lack of communication spread to other areas other than just Eli. It spread to our finances as well. My husband made some decisions without communicating to me what exactly was happening and what he was doing. It was these circumstances that brought our communication issues to the surface. Some might not think this has anything to do with our road with CHD's but it truly was our lack of communication that really had spread it's ugly arms. It was just in other areas. The other side to this is that my husband was trying to protect me. From everything. He didn't want to see me suffer. So it made communication all the more difficult. Of course I didn't see this at first. I was too angry about the financial issues. I wanted a divorce and told my husband so. My husband did not and was willing to do anything to fix it. Once the financial issues surfaced, communication had to follow. It had no choice. They were caused by not communicating. Our pastor told each of us to focus on ourselves and let God deal about the rest. So my husband was to focus on changing himself and turn to God and I was to focus on myself and turn to God. So we each did what we were advised. I was still angry, but we started reading our Bibles together. As we began reading our Bibles together communication slowly started to begin. At first we began to talk about just the money. I took control of our finances and I am better at communicating what is happening with them than my husband. But then the communication about Eli started to open up. I finally admitted to my husband that when I get testy and nitpicky about things that seem so trivial it's actually that I'm struggling to not obsessively worry about Eli. I had never been able to say that before. Then slowly my husband started to open up. And then he broke down and sobbed just as he had done in the ER that night that changed our lives forever. He admitted how scared he is. He admitted that if something happens to Eli and he is taken home to be with Jesus, I would not be the only one sporting a white coat. It has taken off from there. It is slow and gradual and whenever my husband does that annoyed exhale, I remind him that is how we got into our mess in the first place.
So if someone were to ask me the short answer to the question "how did you come to the place of beginning to heal"? I would tell them Jesus. He is the ONLY reason that I didn't leave. He is the ONLY reason we started to communicate. We both followed our pastor's advise. You focus on you and let God take care of the rest.
Thursday, February 17, 2011
Hurt
I am not eloquent with words. They don't come easy. Instead my emotions speak when I cannot. This is why you'll see me crying and it could be I'm happy, sad, excited, angry, frustrated or just about any other emotion. When something happens my initial reaction is harsh emotionally. Most people can't take it. Those closest to me know that after the first 48 hours (in severe cases) I move on to forgiveness and allow the Holy Spirit to work. If another round of hurt comes up I will repeat my harsh emotional reaction. It then takes another 48 hours of allowing things to process until I sit back and allow Christ to work.
Some things have happened recently between me and my husband. There are only a few people that I told. My husband also confided in a few people. Because one of those people whom we trusted doesn't know me and that I will get over it, they felt it was their duty, instead of coming to me, to go elsewhere to talk about me. This person also does not know all the other things that are going on in our family. I don't talk about how I think Eli's heart is doing. Mainly because I want medical confirmation and don't want to jump to any conclusions. But also because again I'm not good with words. They don't know of the non-medical problems we are having with our children. They jumped to conclusions. My husband and I were FINALLY at a place after almost five years where we were turning to our fellow believers in Christ. We were opening up and my husband was actually seeking out growth. Now I feel like going back in my hole I was in. Not seeking people out. Feeling judged. All because people think they need to do the work of God. God IS in control and HE will get us through ALL our trials. Gossiping and murmuring is not needed. Prayer is.
Some things have happened recently between me and my husband. There are only a few people that I told. My husband also confided in a few people. Because one of those people whom we trusted doesn't know me and that I will get over it, they felt it was their duty, instead of coming to me, to go elsewhere to talk about me. This person also does not know all the other things that are going on in our family. I don't talk about how I think Eli's heart is doing. Mainly because I want medical confirmation and don't want to jump to any conclusions. But also because again I'm not good with words. They don't know of the non-medical problems we are having with our children. They jumped to conclusions. My husband and I were FINALLY at a place after almost five years where we were turning to our fellow believers in Christ. We were opening up and my husband was actually seeking out growth. Now I feel like going back in my hole I was in. Not seeking people out. Feeling judged. All because people think they need to do the work of God. God IS in control and HE will get us through ALL our trials. Gossiping and murmuring is not needed. Prayer is.
Tuesday, February 15, 2011
Relationships
Stephanie at When Life Hands You A Broken Heart is hosting a blog event about how CHD affects your relationships. Here is my story.
When you think of relationships, the first idea that pops into most peoples mind is their interactions with other people. For me the first thought is how I act/react to situations, circumstances and life with CHD's now compared to life BEFORE CHD's. Before CHD's I was the kind of mom that a cold didn't send me to the doctor, bumps and bruises happened, and if the kids weren't being rowdy then life must not be okay. Then along came Eli and his broken heart. The first thing I did after we found out in those early morning hours at Children's Hospital is ask "what did I do to cause this". Then there was the moment they were releasing him after his first heart surgery when he was 22 days old. I was NOT okay with them releasing us so early. After all it had only been 3 days. I knew in my mommy heart it was too early and I told them. Of course they didn't listen and I told them we WOULD be back and things would NOT be okay. I know they thought I was crazy but I didn't care. They sent us home and one week later we were back. And I was right. Things were not okay. He had developed a delayed chylothorax from the surgery and had over 8 ounces of fluid in his chest. His lungs were collapsed. They were amazed that he was still able to breath and doing as well as he was. They told us it was going to be a long stay and they were right. It was seven weeks one day (but who's counting). That was the longest period of my life. It was during those 7 weeks that I bonded so close to Eli that I know when things are going to happen before they happen. It is actually scary sometimes and I think I'm crazy. I have actually predicted when we would notice changes after his surgery in 2009 or somehow I knew when he had ear infections with NO symptoms. But of course being the mom I was before CHD's I don't like to over react. So I fight with myself. Being concerned is something we have to do as a parent. But being overly worried is not productive. So I constantly fight with myself to stay on the concerned side and away from worried. Of course I had never been able to put that into words until VERY recently. I finally admitted to my husband that those times where I tend to get snappy with him over something that before NEVER would have bothered me, is when I'm trying to distract myself and struggling. So I've become stronger at making doctors know my thoughts and when I disagree. I have come to trust my instincts. The instincts God has given me.
Of course this journey changes every relationship you have. While in the hospital for those 7 weeks the person who I thought was my BFF got mad at me because my husband asked someone else to watch our kids while he had to work (since his vacation ran out) and I backed up my husband instead of her. Never mind the fact that she never called except to yell at me for this. I actually was not upset about the lack of phone calls. But she no longer wanted to be my friend. About a year later I tried to reach out to her and she seemed to want to be friends again. So we seemed to pick up where we left off. Until I received the news that Eli needed surgery again in 2009. She basically said I was over reacting and I needed to get over it (my words not hers). I knew I had to end the friendship. Not because she said harsh things, but because I knew she wasn't going to be the type of friend I needed to endure this road that is CHD's. Luckily I have a BFF now who is ALWAYS there. No matter how little we are able to talk because life gets in the way, when something comes up she is there. Whether it's in prayer, thoughts, a phone call or an actual visit. I KNOW she is there and will support me to the end of the earth.
Of course family has been invaluable to me. While I was with my son in the hospital, my parents came up and stayed and helped my husband. I know he is forever grateful for what they did. And of course there is my Uncle Tim. He has come and stayed for the last two surgeries, and I know when the next one occurs and we need his help he will be there to spoil all my other kiddos with love while Eli and I are away. I love them and am grateful and will NEVER be able to tell them in enough words or actions what they mean to me.
And finally the relationship with my husband. In all the other blogs I read on this topic almost all have said how the relationships with their husbands have grown for the better. I can't exactly say that. I think we could be so much worse off, but I can't say we got closer either. It has been almost five years and we have just now started to come to terms with some things. My husband recently admitted how scared he has been and how he was terrified to bond fully with Eli. Don't get me wrong he so loves his son more than anyone could, but he stuffed all of his emotions. So when I would talk about Eli's heart he would tell me he would be okay and I just needed to relax. We basically accepted our rolls and that really is what has gotten us through. Now that we have begun to talk more it's gotten a bit easier. He knows when I'm snappy that in truth I'm very concerned fighting to stay away from worried. He's learning how to comfort me and help me let worry go on it's way. I am grateful for that. If I have to go through this with someone, I'm glad it's him.
So as I've grown in this life that is CHD, and I think back to that question "what I did to cause this", I realize it's not what I did to cause it but it's how strong God knows I am. This is a road that I now feel honored to travel because God knows I'm strong enough. I can be truely thankful HE has chosen me for this special journey.
When you think of relationships, the first idea that pops into most peoples mind is their interactions with other people. For me the first thought is how I act/react to situations, circumstances and life with CHD's now compared to life BEFORE CHD's. Before CHD's I was the kind of mom that a cold didn't send me to the doctor, bumps and bruises happened, and if the kids weren't being rowdy then life must not be okay. Then along came Eli and his broken heart. The first thing I did after we found out in those early morning hours at Children's Hospital is ask "what did I do to cause this". Then there was the moment they were releasing him after his first heart surgery when he was 22 days old. I was NOT okay with them releasing us so early. After all it had only been 3 days. I knew in my mommy heart it was too early and I told them. Of course they didn't listen and I told them we WOULD be back and things would NOT be okay. I know they thought I was crazy but I didn't care. They sent us home and one week later we were back. And I was right. Things were not okay. He had developed a delayed chylothorax from the surgery and had over 8 ounces of fluid in his chest. His lungs were collapsed. They were amazed that he was still able to breath and doing as well as he was. They told us it was going to be a long stay and they were right. It was seven weeks one day (but who's counting). That was the longest period of my life. It was during those 7 weeks that I bonded so close to Eli that I know when things are going to happen before they happen. It is actually scary sometimes and I think I'm crazy. I have actually predicted when we would notice changes after his surgery in 2009 or somehow I knew when he had ear infections with NO symptoms. But of course being the mom I was before CHD's I don't like to over react. So I fight with myself. Being concerned is something we have to do as a parent. But being overly worried is not productive. So I constantly fight with myself to stay on the concerned side and away from worried. Of course I had never been able to put that into words until VERY recently. I finally admitted to my husband that those times where I tend to get snappy with him over something that before NEVER would have bothered me, is when I'm trying to distract myself and struggling. So I've become stronger at making doctors know my thoughts and when I disagree. I have come to trust my instincts. The instincts God has given me.
Of course this journey changes every relationship you have. While in the hospital for those 7 weeks the person who I thought was my BFF got mad at me because my husband asked someone else to watch our kids while he had to work (since his vacation ran out) and I backed up my husband instead of her. Never mind the fact that she never called except to yell at me for this. I actually was not upset about the lack of phone calls. But she no longer wanted to be my friend. About a year later I tried to reach out to her and she seemed to want to be friends again. So we seemed to pick up where we left off. Until I received the news that Eli needed surgery again in 2009. She basically said I was over reacting and I needed to get over it (my words not hers). I knew I had to end the friendship. Not because she said harsh things, but because I knew she wasn't going to be the type of friend I needed to endure this road that is CHD's. Luckily I have a BFF now who is ALWAYS there. No matter how little we are able to talk because life gets in the way, when something comes up she is there. Whether it's in prayer, thoughts, a phone call or an actual visit. I KNOW she is there and will support me to the end of the earth.
Of course family has been invaluable to me. While I was with my son in the hospital, my parents came up and stayed and helped my husband. I know he is forever grateful for what they did. And of course there is my Uncle Tim. He has come and stayed for the last two surgeries, and I know when the next one occurs and we need his help he will be there to spoil all my other kiddos with love while Eli and I are away. I love them and am grateful and will NEVER be able to tell them in enough words or actions what they mean to me.
And finally the relationship with my husband. In all the other blogs I read on this topic almost all have said how the relationships with their husbands have grown for the better. I can't exactly say that. I think we could be so much worse off, but I can't say we got closer either. It has been almost five years and we have just now started to come to terms with some things. My husband recently admitted how scared he has been and how he was terrified to bond fully with Eli. Don't get me wrong he so loves his son more than anyone could, but he stuffed all of his emotions. So when I would talk about Eli's heart he would tell me he would be okay and I just needed to relax. We basically accepted our rolls and that really is what has gotten us through. Now that we have begun to talk more it's gotten a bit easier. He knows when I'm snappy that in truth I'm very concerned fighting to stay away from worried. He's learning how to comfort me and help me let worry go on it's way. I am grateful for that. If I have to go through this with someone, I'm glad it's him.
So as I've grown in this life that is CHD, and I think back to that question "what I did to cause this", I realize it's not what I did to cause it but it's how strong God knows I am. This is a road that I now feel honored to travel because God knows I'm strong enough. I can be truely thankful HE has chosen me for this special journey.
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