Mama Monday - Lindsey

Happy Monday mamas! Today we've got Lindsey! A sweet mama of two little girls, one who had open heart surgery at 3 months old. Lindsey is going to talk to us about that whole experience, and the ongoing treatment/side effects.

"Happy Monday! My name is Lindsey, and my husband Dennis and I will be celebrating our 10 year Anniversary in September. We have 2 beautiful daughters, Clarice is 7.5 and Adelyn is 4. Most of what I’m going to talk about is my oldest daughter, Clarice. In December of 2010, I found out I was pregnant. 5 days after my due date, Clarice finally came into the world August 20th, 2011. She was 7# 3oz and everything seemed fine, Until our 1 month well check at the pediatrician. That’s when our heads exploded with information.

The Dr came in the room, took one look at Clarice, then  asked my husband and I if she had been around anyone sick. Because “your baby is sick.” Those exact  words hit me like a ton of bricks & my stomach sank. She could tell something was wrong & sent us to the ER. After an uneventful overnight observation stay, they transferred us to Akron Children’s Hospital, main campus, for a round of testing and couldn’t find anything wrong until they did an echocardiogram. There, they found she had an atrial septal defect, congestive heart failure, and what I came to find out was called Cor Triatriatum. (Pronounced: Core Tri-A-tree-autumn). The only way to fix this? Open heart surgery.

Thoughts starting flowing through my head. “But she’s only 1 month old! There’s no way she can undergo surgery at a month old. What did I do wrong? My pregnancy was fine. Did I sleep wrong?” Etc.. Etc.. I was scared, literally sick to my stomach, nervous, anxious, & confused. I couldn’t even focus. As many emotions as I felt hearing all of this information , we were informed she didn’t weigh enough for a non emergency surgery, as her issues weren’t life threatening. My goal was to get her to gain weight. I pumped like a crazy woman, trying to get every drop of milk I could for my baby. But it just wasn’t enough. The stress of her medical condition killed my supply, and we had to supplement with formula. I was furious with myself, and I thought for sure I somehow miserably failed her because I had to give her formula. hindsight 20:20.. she was being fed. We were FINALLY able to schedule her surgery for November 29th. At just over 3 months old.

The surgery ended up being longer than originally planned, but everything went great. Then around 3 years old she was released from cardiac care. She was doing great. We were told we didn’t need to go back unless something concerned us. At this time, I had quit my job to be a SAHM, and I was also pregnant with my 2nd daughter.

 

Adelyn’s delivery in December of 2014 wasn’t as smooth. I asked to be induced on my due date due to when we had someone available to stay with Clarice. My Dr was ok with this, so I go in to start the process of induction, only to find out little miss was upside down. I had a C-section the next morning. (Cue failure feelings again) But, I delivered a very healthy 8# 14oz baby on Wednesday December 17. I was miserable with her. I was as big at 25 weeks with Adelyn as I was full term with Clarice. But, I was able to successfully EBF her for a full 10 months, and had enough stocked to bring us past 1 year. And I finally felt like I did something right.

 

it was shortly before I had Adelyn we notice a huge change in Clarice’s behavior. Changes that, looking back were always there, we just didn’t know any better. A list that can go on for days. I made appointments with our pediatrician, then referrals, only to get told “she’s too young, I can’t do anything. She’ll probably grow out of it.” So we optimistically let it go.

She started preschool in the fall of 2015 and her teacher voiced a lot of the same behavioral concerns as well, but we still hoped “she’d grow out of it.” Until she started kindergarten & notes or phone calls about her behavior would come home daily. I began to question myself if she was just simply too young to start school. Am I harming my kid by sending her to school and she’s not ready? As she just turned 5, a lot of her classmates were almost or already 6. But it was too late to turn back.

I was back to this dr, and that dr with no help or direction. So we pushed through kindergarten and hoped she would mature some over the summer going into 1st grade. Which didn’t happen. Things only got worse. 

To say she’s a handful, is an understatement. There are days she’s downright exhausting. I know you’re not “supposed” to compare your kids, but I did, and mine are polar opposites. 

First grade comes around and it’s the same type of reports I’m getting from the school. Notes, phone calls, meetings. UNTIL during one of my many meetings, in comes this AMAZING team of people at the school suggesting they wanted to do a full evaluation to hopefully get some answers, but they needed my permission to do so. Inside I was doing cartwheels all over. Jumping up and down with excitement. "YES! ABSOLUTELY! Anything to help!" Outside, I agreed, but was scared to know what they’d “find”. 

So they did their testing and this time last year was our results meeting with the school. She scores in such a way that she qualified for an IEP for social help, a little bit of speech/language help, sensory breaks, things like that. Academically, she’s at or above grade level. I was also ((finally))  able to get a referral to a developmental pediatrician at Akron Children’s Neurodevelopmental Science Center. But that wasn’t until August right before school started again for 2nd grade. She suggested for more in depth evaluations and testing. She also suggested that her heart surgery as a baby could be connected to these behavioral issues as the process of her surgery was quite intense.

We VERY reluctantly started her on a low dose medication to help calm her until these further testing could happen. 2nd grade started and I didn’t get one note or phone call. Her first report card was all A’s, meeting expectations for all other classes, and behavior.

My husband has never agreed with anything this entire time. He was the denial parent that said she just needed stricter discipline, more time outs, things taken away. He finally decided he wanted to be on board, but, he wanted her off the medication “to see what kind of kid we’re ‘really’ dealing with.” And “what if it’s not the right medication?” I felt like I was stuck between a rock and a hard place. Defeated. Let down. Angry. I wanted him on board, but not like this.

I was at so many appointments over 3 years by myself, because I knew in my heart and gut she’s not a ‘typical’ child. Against my better judgment, I weaned her off the medication. So angry at myself and exhausted doing this by myself, and finally, maybe, found a small missing piece of the puzzle, and now we have to start over.

Then, like clockwork, the phone calls, and notes from school about acting up in class started again. We had a neuropsychology evaluation the beginning of February and during our results meeting we were given a short list of diagnoses. The most important being ADHD, combined type. And yes, we’ve been told it’s because of her surgery as a baby.

As I’m writing this, we received a new medication, and haven’t started it yet. I can only hope it works as well as the previous. I still question myself if these things could’ve been avoided if we put off her surgery? Then I try to remember, at the time, we did the best thing we thought to do. Although she’s nothing short of a firecracker, she’ll always be my first born, the one who keeps me on my toes, the light in my world, MY firecracker."

1. What is your favorite thing about being a mama?

Watching my girls grow up to be smart, beautiful little humans. I love their energy and their desire to learn and see New things.

2. What surprised you most about being a mama?

How hard it is. Nobody said it was easy, but nobody warned me how hard it really is. When they're sick, or having a bad dream resulting in a sleepless night.

3. What is the most difficult thing about being a mama?

Raising one child that NEEDS extra attention, and one that WANTS extra attention because her sister gets it. I need a clone.

4. The best advice you’ve ever gotten as a mama?

Cherish every moment. It's amazing how fast time really does go. I feel like my kids should still be babies. They're not anymore. And very independent.

5. Favorite mama products?

My Keurig. I'd be lost without my coffee. And at night, I'm either reading, or crocheting.

6. Favorite bun products?

Since my kiddos aren't so little anymore, this is hard. But when they were, the baby swing was a life saver, more times than I can remember.

7. Favorite mom hack?

A couple things I do on a regular basis to make things easier is use my slow cooker. I love it. There are endless possibilities. And most recently, it may seem m silly, but I started giving my girls their own separate laundry basket. It seemed to be taking me forever when I did laundry. Mostly because their clothes are getting to be so close in size and look. Now, I am seeming to get their clothes put away much quicker and easier.

I cannot thank Lindsey enough for sharing her story with us. It can not be easy dealing with this entire situation and I know some of you mamas can relate to this. If you have any questions, or want to get in touch with Lindsey, you can find her on Facebook or contact me through the Find Me tab at the top of the page.

Check back next week for a new mama! Love to love yas!

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