Congenital Heart Defect Awareness Week

In honor of the first day of Congenital heart defect awareness week I thought I would share my family's story, and things I wish I had known about heart defects.

Our Story:

Robby at 2 hrs old.

On January 11, 2008 at 4:10 pm, Robert Bruce entered the world. As first time-parents we were overjoyed and relieved to hear his cry. That night, we were ecstatic; we had a beautiful, healthy baby boy. 

We woke up early the next morning,  eager to hold Robby again. The nurse brought him in, then not long after came to bring him to his first check-up. A few hours passed and he still wasn't back yet, we began to be worry. Our questions were answered when a doctor came in introducing himself as a pediatric cardiologist. He explained to us that it was found Robby had a heart murmur. They weren't as concerned about that as they were the coarctation (narrowing) of his aorta, which would need to be surgically repaired. Our hearts sank, both of us in tears. The doctor said the survival rate for the surgery was 98%,but the 2% seemed huge! 

Just after surgery.

At just three days old he was waiting in pre-op. It was hard not being able to hold him, but the hardest part for us came when they took him out for the surgery. All we could do was wait, hope, pray and try to comfort each other. It was the most helpless we've ever felt. 

6 months old.

He got through the surgery fine and it seemed like he made a fast recovery; he spent a few days in pediatric ICU then got sent back to NICU. We were able to bring him home a week later. He needed regular visits to the cardiologist and had a scar that stretched from the middle of his chest to the middle of his back. Other than that he seemed like a normal baby.

Today with his little brothers.

I'm happy to say Robby's story doesn't end here. He turned 5 last month so it continues on. He still has a heart murmur and is followed up on annually by a cardiologist. Otherwise, he's a normal, happy 5 year old who likes tee ball, soccer, playing with dinosaurs and bothering his little brothers. 

What I wish I knew:

• Statistics: About 1 out of 100 babies born will have a heart defect. They are the most common birth defects in the US. Had I known this information, I might have asked more questions about it at the time of my ultrasound.

• If you or someone you know is pregnant the Children's Healthcare of Atlanta (www.choa.org/heart)  recommends to ask these 5 questions: Is the heart rate normal? Do you look at the arteries as part of your scan? Are the heart and stomach in the correct position? Do you see 4 chambers? Is the heart function normal? If something is detected early, you can be prepared.

• The Children's Heart Foundation is a wonderful place to start for information. There you can get resource books, talk to someone who has already been through it and read or share stories about other children. http://www.childrensheartfoundation.org/

• Social media is a wonderful tool!! The Children's Heart Foundation IS on Facebook. There you can get up to date information about the latest research, but most importantly connect with people who have been through it or are currently going through it. You can even connect with a local chapter. https://www.facebook.com/TheCHF

• Ask the doctor and nurses questions. Repeat the questions if you don't understand and take notes if possible. Also make note of the names of the doctors and nurses involved, especially if there's surgery. It's very easy to lose track.

• You don't have to be strong; it's perfectly fine to cry.

• You are NOT alone. This is the most important thing. So many people have been there; as I said, seek them out, use social media. Talk to someone.

• Very little is known about what causes heart defects; do NOT blame yourself. I have been down that road. My first question for the doctor was, "Did I do something?". He said, "No, we aren't sure right now what causes it; sometimes it just happens." 

Journey to self acceptance

I know I haven't updated this blog in awhile but, recently I was inspired by my friend. She wrote a blog entry about something that has been on my mind for awhile. The subject is body image.


In recent years there has been a quote going around "real women have curves." As a skinny woman who has dealt with her share of body image issues, I'm here to say that's BS! Real women are all different shapes and sizes. It may be difficult to see how a skinny woman could have issues with her body; I'll share my story, please bear with me.


When my weight first came to my attention, I was about 8 or 9. My doctor wanted me to gain weight. Being a kid, I thought it was great! I got to eat cookies, ice cream, and other stuff. After awhile the doctor ran some tests (which all came back negative); he then determined I was genetically skinny and there wasn't anything we could do about it.


I was comfortable with the way I was, until around the time I started high school. I decided I wanted to switch to a female doctor, and that's when everything changed. When I was around 15, she decided I was too skinny and again needed to gain weight. In addition to that, I needed to go in for weekly weight checks.


Things were going ok for a few months, I'd gain weight, stay the same or sometimes lose a little. The weekly weight checks kept going on for a few months then suddenly, things started going downhill. It now got to the point where I would be visibly shaking when it came time to get on the scale (I was scared I had lost weight). If my weight went down at all, I'd get so upset I'd be sobbing. The doctor realizing how this affected me changed it to every other week. This didn't help things at all. I started looking in the mirror and for the first time ever, I didn't like what I saw. I hated how boney I was, how my clothes never fit right and just being looked at like I was sick. Only one of my friends knew this was going on. I either didn't want to worry them or I was too ashamed. What was wrong with me?


Finally, I couldn't take it anymore. I spoke to my Mom about switching doctors again. After we did, I had a few more weight checks when she decided I was genetically skinny. I was relieved, I felt a little better. After all, there was nothing wrong with me. I was mostly happy again.


It took awhile for me to get to where I was comfortable with how I looked. I met my husband online shortly after high school. He saw my picture and for the first time, I was called beautiful. It made me cry. After what I went through, he saw something in me that for a year, I didn't see.


I'm still happy with the way I am. I have given birth to two amazing boys and am currently pregnant with our third child. Occasionally I do find myself thinking negatively about my body. It's these times, I remind myself that my husband loves me inside and out and my friends accept me the way I am.


Even though I'm past most of that, it still hurts when people make negative comments about someone who is skinny. The most recent comment I saw was a woman who said she "laughs scornfully at the skinny little bimbos.". This comment and others like it are NOT right! I realize the majority of the population is overweight but, really it's time to stop this nonsense! Skinny, average, short, tall, overweight or obese we need to realize we're ALL women, we ALL have feelings and we're ALL beautiful!

Feeling proud!

Yesterday Paul and I went to our first parent teacher conference. I was a little nervous going into it. We were planning on telling the teacher we were moving. I wasn't sure how that would go over since he just started. She didn't have much to go on so she just went over how he's be adjusting to school and the routine. 


I'm proud to say she had nothing but, glowing reviews. She said he adjusted really well to school. He's holding his own with the routine. He participates in everything and even sits still for circle time (20 mins.) she says most 3 yr olds don't. And that his favorite free play area is the house corner. His favorite thing to do? Picking up the baby dolls, rocking them and giving them a bottle. 


I know a lot of men would have something to say about this. Dolls aren't exactly "manly". Luckily Paul isn't that way, before Joey was born we talked about getting a doll for Robby so he'd know how handle having a baby around. He's such a sweet little guy. He loves his brother, gives him hugs and kisses everyday, held his bottle for him when he was a baby (and always with a look that said "it's tough being a big brother"). Some how it was instinct for him. 


So, when the teacher mentioned the dolls we both smiled at each other. When we told the teacher about the move she kinda did that pouty face thing and said "Aww, we're really going to miss him, we love him here, he's a sweety!" She looked genuinely disappointed. Not the really thinking "don't let the door hit ya..." but they were hiding it, like they were truly going to miss him. When we were driving home, I took Paul's hand and said "Well, we must be doing something right!"


I also had a further revelation about the meeting later that night. I was thinking about how he chooses to play in house corner with the kitchen stuff and the babies. I remember someone telling me children mimic what they see their parents do and say. It made me proud of Paul. Robby sees Paul share in the cooking, cleaning, and taking care of Joey. He's mimicking that. I'm very lucky to have such a wonderful husband that shares in that stuff, and the boys are lucky to have such a positive male role model.


I'm so proud of my family!

Sad yet annoying week

Ok, so  this is my first entry this week. Sorry! I've gotten to the good part in my book (Harry Potter and the Order of the Phoenix). This week started with a few sad goodbyes. The first was Marium (our service coordinator), then there was Renee (speech therapist below) and last was Sue (his teacher 2nd pic.). See pictures below.

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It was tough saying goodbye to the people at early intervention, they were all really nice. The program helped Robby out a lot too. I know they all said they were going to miss Robby too. The good news is he will be getting services through the Quincy Public Schools. He'll have preschool 4 days a week and two sessions of speech a week. 

Now for the annoying part. I spent a greater part of this week getting things ready  for Robby's party tomorrow. Ordered the cake, balloons, got decorations, food and cleaned. This morning the boys wake up congested. I'm hoping it's nothing major, Joey gets a cough every so often that's really nothing. I'm hoping this is the case. I gave Robby two clementine oranges and water. Joey's drinking water too. I'm so sick of planning parties only to have to reschedule them. It seems like every time we have a party for the boys something happens. I hope it goes away and it's nothing. They don't have a fever or anything. I hate the winter and I'm tired of colds!!

Little Things

Tonight I felt like I lost it. I finished my supper, and sat down on the couch with a chocolate I got for Christmas. Joey up on the couch and before either Paul or I could do anything he reached over and grabbed it. All day every time I had something to eat I spent more time trying to keep it out of reach than I actually spent eating it. This was the final straw. I had to get up and leave the room. 


I know it comes with the territory of being a parent but, it doesn't make it any easier. I find myself missing the simple things. Being able to have a peaceful meal without yelling at someone, being able to just decide to go to a movie or out to eat, even just not tripping over toys when walking through the living room in the dark. I'll admit sometimes I'm a little bitter, and a little jealous of people who don't have to deal with that stuff. 


Most of those times usually last only a brief period. I see their smiles, feel their hugs, and get kisses and it all fades. I don't envy anyone, it makes me feel, I should be envied. I'm proud of my boys, proud of milestones they've reached, proud of how smart they are and the little people they have become. I realize that these moments mean everything and one day I'll look back and actually miss the little interruptions. I wouldn't trade any of it for anything. 

Another day.

Well, I did have a pretty productive day today. Before 11 this morning I finished filling out the paperwork the Quincy Public Schools need for Robby, called Neponset to ask about the lead assessment results also needed for school, ordered address labels and hung a shower curtain. I went to do the dishes too but, found out Paul did them before going to work! Dropped Robby off at school, went to Stop & Shop, dropped things out at my Mom's had lunch with Joey then picked Robby up. We took a short walk down the street. Phew!! All in all it was a pretty good day. 


Today it was also Robby's last day getting dropped off at school. It's pretty sad, I'm going to miss seeing the Early Intervention people they were all really nice. I highly recommend them to anyone who needs that service. I can't say enough good things about them. Not only did they walk us through everything in the beginning of the process but, they specifically gave us stuff to work on at home between visits. It's because of this that he has made the amount of improvement he did. It will be really tough next week saying good bye. I felt pretty good today, his teacher said he did really well and they are going to miss him. Next week on his birthday is his last day but, I have to stay with him. We're going to bring a cake for his class.

Being true to my word, I took pictures yesterday and today and put them on the computer. Here they are. This one is Joey in a rocking chair. This means a lot to me because, the chair was gift to me from my parents when I was 3. My dad put it together himself. My Dad is probably thrilled to see this. 

This is the work of art Robby brought home today (Jan. 4th 2011). When I read what it said, it made me cry. Especially where his Birthday is so near.  He's growing up so fast! I guess we'll have to enjoy them being so young while we can. *sigh*. Why can't there be a place like Neverland?

A New Year, A New Beginning

I love the New Year! It's a time for new beginnings and a fresh start. In honor of the New Year, I have decided to make an attempt to be better at this blogging thing. I'll make honest effort to at put something on here at least once a week.  In addition, I will try to be better about posting pictures. To help me do this I want to put together a scrapbook of this years goings on. In order to do that, I will need plenty of pictures so, I will take and post at least one new picture a week. I would also like to minimize my time online which kinda contradicts what I just said but...whatever.


So how was my New Years? Well News Years Eve I was delighted to get a call from Maria saying they were going to come over. They were planning on just stopping by but, decided to have supper with us (we were going to get Chinese).  It was so great to see Jimmy again and I think he was thrilled to see the boys. They seemed to enjoy each other's company. Since our food wasn't ready until 9, they ended up staying until midnight. We almost missed the countdown because we were engrossed with our game of Uno. It was getting pretty intense! It was so much fun. I'm really glad they came over!


On New Year day we went to Dennis and Gail's house (Paul works with Dennis). Apparently, it's a Texas tradition to eat black eyed peas on New Years day. It gives you good luck and prosperity, I guess Paul, Joey and I will have luck and prosperity. Not so sure about Robby, he didn't want to go anywhere NEAR them. It was great to see them again and they were happy to see the boys.


Yesterday was just a relaxing day. We thought about bringing the boys to see the Enchanted Village at Jordan's Furniture but, decided not to. We all had a busy weekend so needed the day just do nothing.