Here are photos of a few HLHS baby friends very close to Mary Clare’s age that I’ve been thinking about so often lately.  I’ve followed their stories from the beginning of their little lives and it breaks my heart to know that they are struggling.

hlhs-babies-owen

Owen, HLHS baby boy who has had his Norwood and Glenn, but unfortunately must have a brand new heart.   He is currently undergoing chemo treatments to prepare his little body for a heart transplant.

hlhs-babies-emma-kate

Emma Kate, HLHS baby girl who had her Glenn in January, but is struggling in the hospital right now.

hlhs-babies-gracie

Gracie, HLHS baby girl that just found out last night that she has been listed on a heart transplant list as A1 status.  Gracie was scheduled to have her Glenn on February 12, but it was determined that her little heart is too sick to survive the complex surgery.  She is in the hospital, where she will remain, until a donor heart is found.

Often, I write posts and never publish them on the site.  I have 20 or so posts just hanging out in my draft file that have never seen the light of day.   Some just ranting, some sad, some stupid, most not worthy of the time it takes to read them.  I’ve always considered writing an outlet, and many times after I write whatever it is that is on my mind, it escapes me.   I wrote one post about a month ago that was just plain venting and really didn’t reflect who I am 95% of the time.  It whined and complained, and I wasn’t about to publish it.  However, I have had a heavy heart this month, and cannot get that post out of my mind.  Not sure if my “Southern Seasonal Affect Disorder” is actually taking a toll in this long February, or Heart Day got to me, or life itself just got the best of me.  Or, it may be as another  mom quoted this week in regards to her heart baby…  (carrying) “the weight of knowing that it’s never over. That it’s not something that can be healed with an antibiotic or that is cured. It’s a life time journey.” Whatever the case, I have decided to publish my venting session.

Too often, it seems that heart children get the raw end of the deal.  Not many people know or understand heart defects, the funding for research isn’t there although clearly needed, and the government just doesn’t seem to care.  Don’t get me started on the insurance issues.  I’m not going to quote statistics.  If you’ve read my blog, you’ve read them all.  I just can’t seem to stop thinking about all of the precious heart babies that I know and love, nor can I get this post out of my head…

A heart mom venting..it’s my blog, right?  (A “Published Draft”)


No, Mary Clare’s heart is not “fixed.” It will never be “fixed.” The wonderfully brilliant surgeon that has operated on her twice has “reconstructed” her heart to function as a single ventricle because the left chambers of her heart didn’t form completely. The left side of her heart did not work when she was born. She would have certainly died within hours if left untreated. She was born with HALF of what we have as heart healthy people… among many other heart defects all grouped together to be called Hypoplastic Left Heart Syndrome. Two chambers instead of four. Her heart functions with two chambers, not four. She will never have four.

She is blue. She has extremely low blood oxygen levels. Which is why she is out of breath often and her hands are purple. Her blood is mixed. Our oxygen rich (red) and oxygen poor blood (blue) is separated. Hers is not. She only has a half of her heart, and therefore it can’t hold oxygen rich and oxygen poor blood in separate areas.

I’m not “venting” about all of you who read this blog because, chances are, if you are reading this, you know all about Mary Clare’s heart. I am so very grateful for all of the wonderful friends and family who continually pray for our sweet Mary Clare; but at the same time, I become so frustrated with others who don’t have a clue. I think when others see Mary Clare, they see a completely healthy looking baby girl that seems to be fine, thus “Dumb Goggles” emerge. ” By this I mean people will ask the dumbest questions without thinking at all before speaking. Don’t get me wrong, I love to talk babies and I love to talk heart, so when others ask me about Mary Clare’s heart condition, I’ll go to town! Ask away!

Don’t pretend that you know what is going on with her, because half of the time, I don’t. Don’t tell me that this third and final surgery can’t be that bad, as bad as the first two surgeries. It is heart surgery. I know she has already been through so much, but this final surgery is equally as invasive and risky. It is a huge deal. She is a baby. A baby that has heart catheterizations, chest x-rays, feeding tubes, nasal cannulas, EKG’s, echo’s, blood pressure medications, diuretics, pain meds, two open heart surgeries. She has been intubated, paralyzed and had multiple chest drain tubes sewn into her, more IV’s than most adults will ever have, more blood drawn and the most beautiful scars that remind me to thank God everyday for it all. No, she hasn’t just had a valve replaced, or a hole mended. Her heart was cut on, stitched up, moved around a bit…reconstructed! TWICE, and one more to go, at least. The doctors make her heart work. They work with what they have, which isn’t much. For each surgery, they stop her heart and put her on a heart lung bypass machine. They have to cut into her precious baby skin and saw open her sternum, then cut, stitch, operate on her heart. We will forever monitor her heart, her oxygen levels, her heart function, her health.

I thank God everyday for sending my precious angel to me and for giving me every moment He does with her. I love my heart baby. I adore my precious heart baby.   If I had a choice, however, I would never want to be a heart mom. I would love for her to be just as healthy as other babies, but this is the path that was chosen for us. I am a heart mom. She is a heart baby.  My precious, loving, determined heart baby.  My hero.  It is a big deal. It is a HUGE deal. So, I’ll talk about it until I’m blue in the face (to match hers) and I’ll make a big deal about it!

Obviously, I was a bit perturbed.  Sometimes it just helps to say, in so many words, “It isn’t fair.”


14 Comments

the tompkins family  on February 20th, 2009

Hi, wanted to comment the other night when I first saw this. For some reason, I couldn’t. Glad to see this back on here.

We’ve checked your blog frequently and think your MC is just adorable. We learned about your blog from Annabelle’s blog. Our daughter is a nurse on 7C at MUSC and Annabelle was her first patient. Very special. ( I also have a 49 year old male cousin, who also resides on 7C at least twice a year due to a HDC). So we do have an understanding about what you are going through.
We admire you so much. You allow both of your girls to live to the fullest, even your little “blueberry”! Continue to do the wonderful job you are doing, and may God always bless the Pennington Family. Our daughter, Ann, may be in the PCICU the next time you are in Charleston.
Again, blessing to you all.

Rebecca Butcher  on February 20th, 2009

Thank you, Kerri, for sharing this! I, too, have many drafts that have never been posted…I don’t know why…maybe it’s fear. But, you are absolutely right…it’s not fair. It’s not fair at all. I hurt so badly when I think of the daughter I’ll never see walk, talk, shop with me, plan a wedding with or hold her children. For all the little moments that are so precious between Wyatt and me…I miss with her. It breaks me completely. I hurt for you, too. For all that isn’t fair in this entire world of heart babies and heart moms. Yes, we have amazing bonds and understand each other’s hearts more than anyone but it’s not our choosing. I can’t tell you how hard this pregnancy has been knowing that the only reason I am expecting again is because my baby girl isn’t with me…it’s an acceptance that is one of the hardest things I’ve ever even tried and I am still trying to be okay with. Yes, I know this is best. Yes, I know this is God’s plan and only He knows what the future may have been with Annabelle here…so maybe it was best but it still isn’t fair.
I adore your Mary Clare. She brings so much joy into my life…she is a miracle every single moment of every single day! I don’t think an evening will ever come where Scott and I don’t pray for our heart babies and their beautiful and chosen families. Our hearts are changed now, thankfully. I wanted to share with you something another heart mom told me…she said that “if this had happened to someone else, it wouldn’t have made the impact that it did with you”. Know that Mary Clare makes a difference to everyone who knows her brave story.
I love you~ Rebecca

Erica May  on February 20th, 2009

Kerri, what a great post! I completely understand your frustration! I love that our girls will grow together, but hate that bond that brings them together! There are always going to be good and bad days for us and I am glad I have you to share and really “understand” all that we are going through! I always keep you guys in our prayers and we love you all!!
Erica

Bmarchant  on February 20th, 2009

Kerri my heart breaks for you and Mary Clare everyday. I don’t know how you are able to deal with it as well as you do. I think I would be paralyzed with fear of that minute, fear of the day, fear of the week, fear of next year… Vent when you need to because, no, it isn’t fair. It isn’t fair at all.

Keep being yourself and live life to the fullest. And know that your family’s strength and Mary Clare’s story has brought much understanding about heart defects and love of that sweet baby girl of yours to those of us around you!

KATE  on February 20th, 2009

I am so happy you were able to post that. You of all people have the right to “vent” and let it all out. I thank god everyday for Mary Clare – I too love our little heart baby!!!

KATE  on February 20th, 2009

and thanks for sharing the stories of the other heart babies – I will be praying for them as well!!

Katie Allred  on February 20th, 2009

AMEN!!!!!!! I have thought, said, and vented those same words many times and I too, have posts I haven’t posted yet! Being a heart mom really sucks at times and when people innocently say, “why doesn’t Maddie just get a heart transplant instead of putting her through those surgeries” I want to strangle them! It’s never fixed…even with a new heart!!! It’s never over. They can’t wrap their minds around the fact that her heart cannot be fixed and how can they when I still struggle with accepting this fact at times.

Maddie and all of our sweet’heart’ babies have taught me so much…patience, hope, faith, acceptance (which comes and goes with the day), empathy, and to be incredibly grateful for the little things! Without our sweet girls, we wouldn’t know this yet it’s unfair that we have to learn this through their struggles. I feel so honored to be Maddie’s mom yet cheated at the same time and I especially ache for her and the obstacles she faces and will face living with her half-heart.

Someday we’re going to meet Kerri, and our baby girls will play together. I look forward to that day!!! Lots of love to you and thanks for posting this…it did my heart GOOD since I’m not the only one who feels this way! Heart hugs to you and Mary Clare!!!
Love,
Katie

Katie McKorell Liddle  on February 20th, 2009

Kerri, I’m happy that you express your thoughts and that you share them with others. I appreciate your candid honesty. It certainly angers me as well that the funding for CHD research sucks and I’d be pissed, too. You have every right to be angry, hurt, sad and you can scream “It’s just not fair that my baby girl has to endure this for the rest of her life!” I often find myself viewing other heart baby blogs and shed tears for them and their families. I’m so happy you, Mel & your family have such a strong faith because I know you often turn to that with all of the “Whys” you probably have. I always think of Mary Clare when I look at Bose since they’re just 3 days apart and they’re just so stinking darn cute! Thanks again, Kerri, for sharing our wonderful yet not easy life!

Lee Wilkes  on February 20th, 2009

So glad you shared…you deserve to be able to do that ANY time you want. I have said many times that I cannot wrap my head around what it would be like to lose a child or to have a child with a life-threatening illness (like Mary Clare)…the world keeps going around you but it NEVER leaves your mind of what she faces each day. Hang in there. Not a single night goes by that Parker and I don’t pray for her. Love you, Lee

Mimi  on February 20th, 2009

Kerri, How touching to read your blog. You always have a smile and rarely let those thoughts become words. God gave you this precious angel because you ARE such a wonderful mom and he knew you would be the best for her. We love her so but it saddens me to read about all the babies who are struggling now. I copied this poem from someone’s site at some time and thought all of you might find peace it it. xxoo Mimi

“The Day I Became a Heart Mother”

One day my world came crashing down.
I’ll never be the same.
They told me that my child was sick.
I thought, “Am I to blame”?
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings.
I run to my child’s bed.
I watch her sleep for quite a while.
I bend down and kiss her head.

I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she’s here
but my heart begs, “PLEASE let her stay”!
From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will she be alright”? to watching her reach out her hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to her beautiful heart).
God must have known how much I’d love her (Just as He loved her from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven
Our hearts share in all of your tears.

Every day I will try and remember
I was chosen for her (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

- Author Unknown

bev  on February 20th, 2009

After reading about all the heart babies i have decided that their parents are heroes, true strong ones better than in comic books or an TV but the kin of people to look up to and learn from. you may rnt when ever because most of us will never have a clue what you go through daily.

Stephanie Carraway  on February 23rd, 2009

I could not have said it better myself! I am so glad that I am not the only one who has these feelings. I also get frustrated with people who do not understand the severity of HLHS. Thank you for sharing.

Nonnie  on February 24th, 2009

Kerri, I am so proud of you and Mel and I’m so thankful you have such wonderful support from your friends and people that don’t even know you only through your wonderful website. Let it out anytime you feel the need to vent. You keep too much in. Cry, shout, we’ll all listen. I’m your mother… I can take it if you want to vent to me. My heart breaks for you. All my life I’ve tried to fix things for you when they didn’t go just right and now I pray to God to help you as I can’t. I’ve said before I wish I could give Mary Clare my heart.
God never promised tomorrow but I thank Him every day He lets me see my beautiful children and grandchildren. He gives us the strength to carry on with the hope of tomorrow and a cure for Mary Clare and the other beautiful heart babies.
We wonder why these wonderful littles souls have to go through so much. We HAVE to put them in His hands. It is His will.
It’s hard to look at Mary Clare and not think how perfect she looks-until you see her purple little hands and hear her breathe so hard while playing.
I promise I will do anything and everything to make her life just as perfect as I possibly can.
I can’t leave McCanless out of this. She is so loving to her little sister and I will always tell her she my big girl,now and we depend on her for her love and support too! And we’ll follow her dancing all over the world if that’s what she wants!
All my love to you, my beautiful daughter. I don’t know how I deserve such wonderful family. I just thank God! MOM/Nonnie

Brooks Keisler  on March 4th, 2009

I read this post a few weeks ago but didn’t get around to writing because we were in the hospital. Thanks for thinking of our Emma Kate. She is now home and doing well.
Bethany and I often talk about the same things you have “vented” about. It is encouraging to know that some people really do understand how we feel. That some days aren’t as good as others. And that we know better than most what true miracles are.

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