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.

Thursday, February 17, 2011


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.

Tuesday, February 15, 2011


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.

Monday, February 14, 2011

I Failed

I failed at posting every day obviously. I tried, but things came up within our family and when things come up I tend to blog less instead of more. Bad me.

I did want to leave you with one last blog. Scarlet's story. Scarlet's picture is up at the top on the right side of the blog. Does she look like a child with a congenital heart problem?

Heart problems are not always obvious. So here are the facts.

*This year 40,000 babies will be born with a congenital heart defect.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

We did not know until Eli was two weeks old that he had congenital heart defects. I wish that I would have known before hand. I have since learned that there are VERY important questions you can ask during your "20 week" ultrasound. Sadly these things are not always checked. I know they were not checked with Eli.

1. Do you see 4 chambers?

2. Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.

3. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

4. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

5. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

I cannot stress the importance of these questions. If you are pregnant or know someone that is. Please take these questions with you and ask.

Thursday, February 10, 2011

So as I mentioned in yesterday's post they are making great strides in the field of CHD's. However, we still have stories such as Cora's. Cora's story comes so close to home for me. If you know Eli's story from birth you know that he nearly died in my arms four seperate times within the first two weeks of life. These stories should NOT exist. But the sad fact is they do. No child should die like this when the answer is so clear. Better CHD screening prenatally and in EVERY newborn. PERIOD!

Wednesday, February 9, 2011

Welcome To Adulthood

As a parent of a child with CHD's, the biggest worry we face is "will my child make it adulthood". Fortunately there are people like Lauren who are a testiment that it can be done and, the fact is, they ARE making it to adulthood. I'm so thankful for the advancements they have and are making with CHD's.

Tuesday, February 8, 2011

Half A Heart

It's hard to imagine a baby being born with only half a heart. A baby who doesn't have all four chambers. However, these kids exist. These kids and their families have a special place in my heart. Although Eli has all four chambers, his left side is smaller than it should be. However, we are lucky because it does work. Some kids like Owen were not so fortunate. Someday Owen will need a new heart. Soon they will be heading off to surgery to "patch" parts of his heart to buy more time. This is one of the many faces of CHD.

Monday, February 7, 2011

Congential Heart Defects (CHD) Awareness Week

Although I am not good about posting on my blog every single day, or every week for that matter, this week I hope to be different. As a blogger and the mother of a child with congenital heart defects, I of course want to do my part to spread awareness this week. But what? I'm not creative. Lots of other blogs will give you the facts? So what can I do? Well, I think you need to see the faces of these children. When someone says congenital heart defects I think most picture a child who is on oxgyen 24/7 or somehow you think you can "just tell" by looking at them. That is so far from the truth. Yes when things get bad as it often does for lots of kiddos with heart issues you might see them not keeping up, or turning blue, but for the most part you won't be able to tell. I will warn you now there are pictures below that WILL disturb some. But they are a reality for us. The scars are a reminder to hold my son close and be thankful for every moment I have with him here on earth.

Can you tell he has congenital heart defects?

This is after his fourth surgery at 2 1/2 years old.
CICU 2009


And this is after his fifth surgery at 3 1/2 years old.

The first blog I want to show you is When Life Hands You A Broken Heart
This week she is interviewing the parents of these children. If you think you will just "be able to tell", reading this may change your mind.

Thursday, February 3, 2011

Happy Birthday Brice AND Eli?

Screech (insert scratchy record noise here)

Some who read this may know Eli's birthday is NOT today. At least the day he turns another year older doesn't happen on this date. His real birthday is in July. Then why the title of this post? If you're a heart mom you know the answer. Two years ago today Eli was in the hospital recovering after open heart surgery. Two years ago our world was turned upside down. They took Eli in to surgery and he very nearly did not make it out alive. I still cry. God's love and mercy amaze me. I am forever grateful God chose to leave Eli with us. It's hard to put into words.

So today we remember how very fortunate we are. Today we are thankful for not being at the hospital waiting to hear if Eli made it through the operation okay.

So Happy Birthday to both my husband and Eli.