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.

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.

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!

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.

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.

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.




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.

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.