An Update on Wren’s Heart Defect

For any of you who are new readers (hey a girl can dream!), Wren was diagnosed with a stenosis of the pulmonary artery. Basically, her artery going from her heart to her lungs is too narrow and causing a backup of blood in her right ventricle. That means that her right ventricle could potentially be working too hard to pump blood out to her lungs and puts her at risk for heart failure. If it seems that heart failure could be imminent, the remedy would be open heart surgery to widen her artery with a mesh; however, her condition is not yet that severe. You can read more about her heart history here and here.

The day that I have been dreading since December had finally come and we had to go check on Wren’s heart again. I didn’t have high hopes, as last time they had told us her heart condition was worse, talked more about open heart surgery, and referred us to a genetic counselor. Needless to say, I spent the entire ride back home bawling while my husband comforted me.

  
Because I needed our family’s rock with me, I asked my husband to accompany me again to Wren’s appointment. He thought he would be able to, but had to cancel on me last minute because he has a trial coming up next week that he needed to prepare for, so I was on my own. To say I was nervous about it was an understatement. So I said Mother Teresa’s prayer that has always been my greatest comfort: Mary, Mother of Jesus, please be a mother to me now.  That gave me the courage I needed and off we went! 

Wren had a good time in the waiting room. She was reading all the books and playing with all the toys. There was a little boy in the waiting room about 6 or 7 with special needs who became her fast friend. He was so sweet, and almost afraid to get too close to her. So he just shuffled really slowly toward her and stopped every now and then to watch her. Every time she looked up at him, smiled, and gave her little wave, his face broke into the most enormous and beautiful grin. It was so touching, it brought me to tears (I know, I cry a lot. I blame the hormones).  What a gift special needs children are! When we were called back, he finally blurted out, “Bye!” 

This is Wren’s fifth EKG and echocardiogram, so she recognized where we were immediately. And she was not pleased. I had brought lots of lollipops with me for this very reason. When she is upset, it throws off the test results, so she has to be kept as calm as possible. This is a tall order, because she is stubborn and headstrong. If she doesn’t like something that is happening to her, nothing can distract her. We achieved small success during the EKG with the nurse blowing bubbles and me handing her a lollipop. But she escalated from whimpering to full on screaming pretty quickly. None of these tests are painful or even uncomfortable, but Wren just doesn’t like strangers messing with her, I guess.

  
They left us alone for a little while in an exam room so that she could calm down enough for the echo. I could have told them it was futile, but I didn’t mind having a breather myself. As stressful as it is for her, it is just as stressful for me. No one likes to see their baby in distress, and I was feeling unequal to the Herculean task of keeping her calm. When it came time for the echo, they called in an extra nurse to do the bubble entertainment, I held her down and shoved a lollipop in her mouth, and they turned on some Barney full blast on the little TV. None of these tactics made the slightest difference in Wren’s mood. She screamed and thrashed and kept pushing the ultrasound wand off of her chest. We both had tears, drool, and lollipop all over ourselves. I have never been so sticky. Luckily, our extremely patient tech was able to get a few images of her heart to show our doctor, despite Wren’s best efforts. And she is normally so sweet! Yeesh.

  
By the time the doctor came in to discuss her results with us, I had been so concerned with trying to calm her back down again, I had forgotten to be anxious about what he might say. So, Wren being a complete basket case was an unexpected blessing. He looked at me with a smile and said, her heart has improved! Her numbers are lower, which is apparently a good thing, and her right ventricle is showing no signs of stress. He classified her stenosis as moderate, as opposed to moderately severe as she was at the last appointment. He said he wants to see her in another six months to keep an eye on it, but if her improvement continues he might start pushing it back to yearly visits! I was so relieved I could have hugged him. He even asked me if I had any questions and waited patiently for me to process the information and think of some. Most doctors ask me that as a matter of form, but then make me feel really rushed in asking my questions, like I am keeping them from something more important. It was so nice to converse leisurely with him and not feel rushed. He also said my husband was welcome to call him if he has any questions for him too.  

 
I picked my hysterical baby up and we headed back to the car. I really don’t think the nurses were sorry to see her go. We went to my parents’ house to celebrate and Wren enjoyed being spoiled by Grandaddy (who is her favorite).

 

I mean, just look at the way she is looking at him! 

Ruth and Rose, meanwhile, went to see their first movie at a movie theater (“Cinderella” at the nearby dollar theater) with my sisters, who also happen to be their godmothers. I asked my girls how it went. Ruthie had been very impressed by the video games in the lobby and liked riding the toy car and Rose kept telling me she had to do her hair and go to the ball. My sisters told me they ate an entire bucket of popcorn each. Rhea spent the day snuggling with mom, who had yet to snuggle with her as mom had been really sick the whole time we stayed with her. So I would say we all had a really good day today. Thank you so much for all the prayers. They were answered today. Now, I’ll be praying for continued improvement in Wren’s heart!

  
Daddy and all his girls (well, minus me) on Father’s Day

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About sylcell

Wife, mom of four girls, Catholic, insatiable sweet tooth
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18 Responses to An Update on Wren’s Heart Defect

  1. Ashley P says:

    I’m not sure where my comment went by ill try again lol happy to hear about her great update! Also, off topic, what brand baby carrier do you use? I’m about to have my third and would like one to have both hands free as much as possible. Thanks 🙂

    Liked by 1 person

    • sylcell says:

      So when they are under 12 lbs and can’t hold their heads up yet, I use a wrap. I hated the Moby with the other three (too much fabric!), and a sweet friend lent me her Baby K’tan for Rhea and I love it! It is a wrap, but minus all the fabric and you can put it on and take it off super quickly. Once they are older, I use my Ergo. I really love that even more than the wrap. It is not as easy to put on (sometimes I need help, especially in the back carry), but the babies love it and I can even discreetly nurse in it. If I had it to do all over again, I would have bought the Ergo 360, because once Wren hit about 9-10 months she really wanted to be able to face forward and see what was going on. I always keep my Ergo in my car because I use it so often! Yeesh, sorry about how long winded I am! Maybe I should just dedicate a post to this, haha.

      Like

      • Ashley P says:

        Haha no thanks for the advice! I have a Moby and thought it was a joke at first when I took it out the box and stretched it out 😂 I wore it for my son but sweat so much because of all the fabric! I have been looking at the Ergos but was unsure of which one would work best. Thanks for the advice!

        Liked by 1 person

  2. Emily White says:

    I love reading your blog. You could write about poop and make in interesting. I’m just glad it’s your busy life.

    Liked by 1 person

  3. morgan says:

    oh yeah. meltdowns during doctors exams… for about 2 years our daughter had a HUUUUGE problem with our pediatricians’ stethoscope. Every time she took it out of her drawer she lost it (and that is the girl who took every vaccination like a champ!). What confused us all was the fact that one week every month she has another doctor working her patients and every time we managed to get an appointment with the *other* doctor the SAME stethoscope was totally okay. We still don’t know what went wrong there.
    She also lost it at every ultrasound for her hip dysplasia she had as a baby…

    soooo happy Wren is getting better!!!

    Liked by 1 person

    • sylcell says:

      Wren HATES stethoscopes too! What is that all about? I might start using the one we have here that was my grandfather’s ( he was a vascular surgeon) on her to get her accustomed to it. And Ruth had to be checked for hip dysplasia after she was born since she was breech. But she didn’t have it. My good friend’s breech baby did have it and he had to be in a funny looking hip sling for a few months as a newborn.

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  4. Mary Elizabeth Stone says:

    Great news! Continuing to pray!

    Liked by 1 person

  5. Great news all around! I love the Father’s Day picture!

    Liked by 1 person

  6. I read all your posts related to Wren. She is a brave girl and so are you!

    Liked by 1 person

  7. dsudatta says:

    I am so happy to hear this!! Thank you God!! You will be in my prayers!!
    Lots of love to the girls. And that includes you 🙂

    Liked by 1 person

  8. katylady says:

    Prayers of gratitude tonight! (You were also in my prayers last night.) She is a force to be reckoned with, all right! So happy you can breathe a sigh of relief and enjoy your holiday weekend!

    Liked by 1 person

  9. So glad, she seems to be strong willed, good! Hehe. Boeta had to go to doctor too, flu and put up a similar but less important struggle. Fun…hehe.

    Liked by 1 person

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