Holes do not belong in baby hearts

I’ve been having anxiety about the defects that “should close on their own” that Poppy’s cardiologist found on her first echocardiogram. Mama instinct. That nagging feeling inside, like hunger, but worse – deeper inside.

So I asked for a follow up appointment one year early. She was due back at 2 years old, but with upcoming surgeries, and the tachycardia that she experiences at even the slightest upset – I needed to sate my wandering mind.

Good thing I did. Good thing that I made that third appointment after having the office cancel on me twice. Good thing that when I showed up for her appointment yesterday and they told me she wasn’t on the books that I stood my ground and insisted she be seen by her cardiologist right then. Good thing that while everyone in the office rolled their eyes and talked behind my back and glanced sideways at me, the crazy mom with the funny baby strapped to her chest, I shrugged it off and instead whispered loving words to Poppy.

Good thing, because now I know that the hole in Poppy’s heart has not closed. It has gotten bigger. The chance that it will close on its own is no longer something to hope for, as it is moving in the wrong direction.

Poppy needs heart surgery.

Because of the placement of the hole the surgery will likely not be a candidate for robotic correction. This means they have to open the chest. I have to say “the chest” like I’m writing a report or something. I’m not able yet, to attach these words to my baby.

Now the questions pile up. When does the surgery need to be done? Will she have to have this surgery before her hand surgeries and next cranial surgery? What are the risks? Why is this happening? How do I cope? When does she catch a break?

I don’t know.
I don’t know.

I feel so utterly, and hopelessly alone. And I want to be alone. I want to disappear with my children to a land of make-believe. A cartoon. A storybook. Something less real. Something light.

Suddenly worrying about how to pay the electricity bill seems trivial. Maybe living in the dark would be nice. Maybe living in Plato’s cave would be better. Just shadows of things, ideas of things. Nothing real. No tangible predators. No actual holes in actual hearts of actual people.

20130430-125154.jpg

20130430-125211.jpg

20130430-125450.jpg

About these ads

12 thoughts on “Holes do not belong in baby hearts

  1. Praying very hard for your family. I am 17 with Pfeiffer Syndrome, a cousin syndrome to Apert. My little brother also has an ASD, atrial septal defect. We know what you are going through and wish we could be there holding your hand through this all. Thoughts and prayers are with you. XOXO

    Love,
    Natali Amy
    17 with Pfeiffer Syndrome Type II

  2. You did real good mama, standing your ground and following your instincts in getting her seen. I know some of the worry as we have prayed that Joey’s hole would close for 6 years and it hasn’t. However, Joey can have his done with a cardiac catheterization instead of open heart, Joey has no other health conditions (except the sensory integration problems that make him react badly to pain and keeps him from understanding the whys), and he is older. So, I have my fears and concerns, but know that yours are much deeper for your beautiful Poppy. We will continue to pray for Poppy and her strong Mama as you face these difficulties! Our hearts are with you today. Thanks for being willing to share with others because you are an encouragement to anyone who may still need to stand their ground or push through some difficulties.

  3. I’m so sorry for all this happening to Little Poppy and you,, may God keep giving you and Poppy strength to get through these so difficult problems, you both deserve to have some good news for a change, I’m not sure I could do it, all our love to you.

  4. My husband had a similar defect repaired at age 8. His was the third such surgery done in the U.S. and the first in the San Diego area. I can’t imagine what that must have been like for his parents. I can’t imagine what it must be like for you.

    Richard just celebrated his 60th birthday, has had, and continues to have, a wonderful life. He has always been strong, active, and fit, has taught and practiced Kung Fu for thirty years.

    I don’t know if such words help your grief or fears, but know that someone who understands is praying for you and your family.

  5. Oh, Noelle I am so sorry. This breaks my heart that so much keeps coming at you and your precious family. Thank God you are the strong Mama Lion that you are. I admire you so very much and love you with all my heart. Aunt Kathy Rae

  6. I agree with Jenni up there, that there truly are no proper words other then i care about your story and your love for your kids. we don’t know each other, but i feel proud of you every time i read your words. proud and inspired. oh, how i long for so much more for Poppy and you all. somehow may you experience peace, noelle. many of us love and care about your precious family.

  7. Hi Noelle. I’ve been following your story through a family friend. Your little one is just a little older than mine. We want to help, perhaps with a surgery or a bill. Do you have contact info?

  8. Hi Noelle, my name is Julie. You met my sister Sharon and her son Brandon at the Christmas Tree Fund Raiser. He also has Aperts, and just turned 19. I came onto your site to see how Poppy was doing and I am heart broken that she has to have this surgery. I am thrilled to hear you stuck to your guns and demanded the cardiologist. That is exactly what my sister had to do often.

    Your words are so deep and I want you to know that I watched my sister go through what you are and she would always keep it together through the roughest times and when it seemed things were calm she would quietly have her melt downs. God picks mothers (and families) for each child, and as much as I know he picked her for Brandon, he surely picked you for Poppy.

    I will pray for you during this time and Poppy but she is already in Gods hands and she will do fine. She is GODS child, he held her first and then gave her to you. Although I was raised Catholic, and I have always believed in God, it wasn’t until Brandon was born, that I truly believed he exists. There were so many scarey times we weren’t sure about and now, while you are preparing for this and trying to wrap your head around it, my sister is preparing for Brandon to graduate from high school next month, you are just at the beginning of Poppys journey.

    I ask Brandon now that he is older, how much he remembers about the many many surgeries and hospital visits. I get a kick out of the fact, he doesn’t remember his mom being there with him much, but he remembers me. I remember pulling him through the hospital in the little red wagon with all the lines of equipment he was hooked up to, and remembers that too. I was always loud and happy for him. He remembers the good things and not the bad. He also has such a high tolerance of pain that things we thought hurt him weren’t. This when I knew God protects them, remember that if you can.

    Continue to be the bear or tiger mom that you are, it takes that type of mother to do this.

    I wanted to make one last comment, you will sadly hear from time to time, cruel people say things about Poppy, about how she looks different. I remember being in Cosco and this woman came right up to him and said what an UGLY baby whats wrong with him. Lets say the words that came out of our mouths were not kind, but we learned over the years people are ignorant and cruel, and generally have never been taught right from wrong.

    POPPY is one of the most beautiful babies ever, I could eat her up! Besides she looks like my nephews baby sister!!

    Bless you Noelle and all your children. Sorry to be long on the words. Please continue to write your inspiring deep thoughts they’re from the soul.

    Julie

  9. Sorry I finished reading your blog page by page.

    http://kpdisabilitylaw.com/about-kp-law/melissa-kenney/

    Please contact Melissa Kenney, she is an excellent attorney, and has worked with special needs children. She represented my husband in his disability case. I highly recommend her and I have also sent her your site to visit. It just takes that one person to make a difference and she may be it.

    Also, please send an email Mrs. Barrack Obama, it will make a difference. And Taylor Swift, she has helped others I know of, and it doesn’t hurt to ask!

    Last, none of my business, but you need a date, a night out, and time out with your son. If you need someone other than your mother, you can reach me and I can reach my sister who has plenty of experience with Apert babies! Poppy would like her mommy to feel love or touch of a human companion. We ALL understand that.

    Julie

  10. Noelle, I received the following email from Melissa Kenney this morning.

    Thank you so much for that link. I certainly can help with a personal donation. As for helping this family place Poppi on SSI, the parents would need to contact us. We are not allowed to solicit business for loads of ethical reasons (image of ambulance chasers, perahps?).

    If Poppi’s mother would like to contact us, we can provide a free consulation, of course.

    Melissa Ngaruri Kenney, Esq.

    KP Law, LLC – A SSD Law Firm
    Strength, Knowledge and Compassion at Work For YOU.
    503-245-6309
    8215 SW Tualatin-Sherwood Rd, Ste, 200
    Tualatin, OR 97062

    Best of luck, if you contact them. You may already have something in the works.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s