Wednesday, February 13, 2008

A Whole New World

I can honestly say that when Kate was diagnosed with her heart defect...I literally entered a whole new world. This may make me sound naive...but I "knew" there were kids with special needs...and I had "heard" about congenital heart defects...but I had NO CLUE about what we were diving into head first! I really didn't know anyone who had a child with significant health issues...let alone heart defects.

But the fact is...congenital heart disease is a REALITY for thousands of kids and their families...and that reality is full of more doctors, medicines, equipment and technology that I could have ever imagined. I had no idea what an "echo" was...never heard of "lasix" didn't know what an oximeter did and had no clue that a pediatric cardiologist didn't do surgeries.

Everday parents around the world are struggling to get their kids to eat and gain weight. Every minute parents are asking each other if their baby looks blue or is breathing heavy. Everyday...parents are getting the news that surgery, a cath or other procedure are needed to save their child's life. Every minute of everyday... parents are sitting next to their child's bed...a bed in an ICU... diligiently watching every number on a monitor. Everyday...a parent is checking their child's oxygen sats or hooking their child up to a nasal cannula. It's stuff parents shouldn't have to do...but they do! They do with more love in their hearts for their children than can be imagined.

It overwhelmes me to think of the number of babies and kids who spent time just at the NICU ,PICU and PCTU at the 2 hospitals where Kate was...and there are thousands more of those hospital floors all over the world. There are thousands of families checking in and out of Ronald McDonald Houses in foreign cities...just so that they can give their child the best medical care available. There are families in unimaginable debt...families losing their jobs because they just want to be with their babies. Things...I never even imagined were happening.

So many times...while I was struggling to get Kate to eat...waiting for her to get out of surgery...I felt so alone! But the truth is...there are so many families going through this each and every day of their life. And although my physical "journey" with Kate and her heart are over...I have found myself with a whole new level of compassion and love for these heart kids and their families.

Because of Kate, my world has's expanded in a way that causes a lot of pain and hurt...but that also causes a lot more joy and blessings. It's a world that I desperately wish didn't exist...but it does and it is REAL! It's a world that has taught me how fragile life really is...a world that has taught me to find the joy...and take each day and praise God and tell him: "thanks for today!"

This week is "Congenital Heart Awareness Week." Before Kate...that meant nothing to me! And's means everything. Yeah...I wish Kate would have been born healthy...but she wasn't. But I can honestly say....because of her I am a better person...maybe a little more bruised and beat-up...but my life has been blessed by a little girl with a messed up heart...and by all the other heart kids I have come to love over the past 18 months.

Too all my heart families...I am so sorry we met the way we did...but am so glad we did! You are all in my prayers daily...and wish that you too...amidst the doctors, meds and hospitals...can find the joy and blessings...that only can come through these special, special little kids! Love you!


Melissa said...

Before I began working at St. Vincent, I had no idea the extent of congenital heart defects. I have been humbled and amazed at what our kids families do for them. Many sit in the hospital for months on end. They don't complain, they just do it, because they love their kids.

It truly makes you appreciate your healthy kids and after a bad day at work, I can't wait to go home and give up hugs and kisses.

Congenital heart defects affect so many more children than we are aware. Please keep all of these families in your prayers because they endure much more than I could ever imagine going through.

The Portas said...

Beautiful, Krista! Thank you so much for writing this.

It's funny, Dan and I have such a strange perspective on parenting because THIS is all we know. We've never experienced a "normal" pregnancy and we have never had a healthy baby. Dan's sister recently had a baby and they were all home from the hospital two days later and it seemed weird to me. I kept wondering how they got to bring the baby home so quickly??? It is such a completely different world to have a heart baby. Sometimes I forget that WE are the "different" ones.

We didn't want to be a part of this group either, but (like you) it has taught us to be better people and because we're a part of it, I now know TONS of amazing babies and families!

Samantha said...

My tears are flowing again...funny (not really) how only the other heart moms can bring my tears out so freely. You wrote this so beautifully and I want to thank you for allowing me in your journey, the life of Kate and all the other joys of your life.

I had never heard of heart defects before Micah was diagnosed, but quickly learned way too much, way too fast. It is only through you and the other heart families that I have been able to find some understanding and support.

Lots of love,

Anonymous said...

I can honestly say that I know EXACTLY what you're going through, and my heart goes out to you and your family. My angel,Sebastian, passed away 3 yrs. ago this January. He was almost 9 months old and also had DeGeorge. Please email me if you'd like. I cried last night when I read of your putting away Kate's Xmas toys. My 8 month old Olivia is now playing with all of those toys we had to put away. I love to chat with you,but will understand if you don't. Just know,that even though we don't know each other, I am here for you for

Anonymous said...

The older I get the more I realize how important our attitude is in dealing with what happens to us in life. I admire your attitude.

Anonymous said...

Oh, Krista. I am So Glad you brought up this topic! We all need this information. What I have learned through your blog of Kate's Journey, and the other heart families I have have found, has truly opened my eyes to this tremendous problem.

I am a former nurse, a mother, and a grandmother, and yet I had No Idea that Congenital Heart Disease is the Most Common birth defect, striking approximately 1 in 125 newborns. This is shocking! And the number of childhood deaths from congenital heart disease is even greater than the number of deaths from pediatric cancer.

We All Need to be Aware of the magnitude of this issue and Active in its solution! Research Funding for NIH (the National Institute for Health) was cut in the last budget. We must make sure our voices are heard and this does not happen again.

Okay, I'll get off my soapbox, for now... Know that I Love You All!!!

Hugs, Love,and Prayers, Susan
Mira's Mom
Southeastern Pennsylvania

Dina said...

Beautifully said. I am so glad that you keep writing and keep connecting with other heart moms. I remember when Jilly was first born we met another couple at the hospital and the mom said to me "you have been given membership into a club noone wants to join, welcome". No, I would never want to join this club but I am glad that I am now a part of it. It makes me feel as though there are others out there who know what I am going through and understand when I throw pity parties for myself.
Thanks for reaching out.


Vanessa said...

Krista, once again you have me in tears.

Before Arianna was diagnosed I never heard a thing about heart defects. Never did I think my own daughter would have 5 heart defects. I know what you mean about this being a whole new world. I really wish I wasn't apart of this group, but I am. I'm just thankful I have friends like you to help me along the way.

Kate was the first CHD child I knew that had passed away. Her death has affected me in a way I never knew I could be affected. I always knew of the possibility that my daughters life could be taken away but it wasn't until Kate passing that it REALLY hit me. I can't say Kate's name without's not only because I'm sad but because of how an 18 month old child who I've never met can touch my heart the way she did. I look forward to the day when I get to heaven and can wrap my arms around sweet Kate.

Your an amazing woman, wife, and mother. I am so blessed to have you in my life.

Amy said...

Dear Krista,

I am probably such a far off memory for you with Kate, but I follow your blog, which I hope is ok. You are my true inspiration. You are the the reason right now I find strength to go back to PCTU and take care of these amazing kids. It can get really sad aroudn there. And then we are blessed with a patient like Kate and a family like yours that teaches us and shows us that it does mstter, no matcome. That these are amazing kids, with amazing famiiels and strength to raise the world! You keep me so uplifted. Your family is a beacon for me right now. There are many days when I doubt if I can continue with what I do in PCTU. But I can't let go. These are amazing kids, and some will survive and some will join Kate in Heaven, but they are all special and deserving. I havce argued a lot with my husband about angels and babies. I am blessed for his strength as well during these several months. He tells me often, God takes the truest angels early because he needs them. Kate is a true angel. I want you to know I pray for your family and know you will find peace and happiness. Kate will watch over you always. Your daughter was blessing to everyone that met her. She changed my life.

Terri@SteelMagnolia said...

God bless you and your family.

I had no idea about heart defects either ... or any defects for that matter... but NOW I DO!!!

I am blessed to be surrounded by the most wonderful "heart moms" on earth. I don't know what I'd do without them.

Anonymous said...

Once again, Krista, you put your heartfelt thoughts down for others to us a better understanding of what families deal with on a daily basis. Your ability to share so clearly helps us grow in understanding, knowledge and compassion. Yet your positive attitude always reigns strong encouraging us!! I am so grateful for you!
Donna D.

Anonymous said...

You are truely a special person. God knew what He was doing when He gave Kate to you. God Bless you!
Hugs & Prayers
Sue M

Kathy said...

You ALWAYS make me cry. STOP IT!!!
We love you too!!
I couldn't imagine going through all of "this" without friends like you. It's what makes us all feel like we're not the only "Insane" ones out there!
You've been so strong this year...and such an example. You are our rock Krista...
Thanks for letting us into your world to get to know Kate and continuing to let us follow you and Seth.
You are such an eloquent writer...time to get a book together!
We love you,

Anonymous said...


You said that perfectly. That is exactly how I feel so many days and we are fortunate that Zach is still fighting the battle. You and your family are in our thoughts and prayers daily.

Jana Piotter

Anonymous said...

Dear Krista,

Thank you once again for sharing with all of us the experience of parents who have babies with heart defects. I never really grasped the minute to minute anguish you all live through each day. As always please know you are in our hearts.


Amy G.

Andrea said...

I am amazed at the compassion and mercy that you are demonstrating for other heart families at a time when you must be experiencing tremendous grief. You and your sweet Kate are truly an inspiration and I only wish that I could have followed your journey from the beginning. Thanks for sharing your heart.

Kelly said...

Your post is so perfect and hits home to so many of us "heart moms". I feel like I know more than I've ever wanted to know about the heart. But, as much as it hurts, I've met the strongest people through this journey. Heart moms are amazing people. "God only gives us what we can handle" is a phrase I've heard a lot recently. I didn't want to handle this type of situation. Sometimes things happen that we're just not prepared for. Thanks for being so open. It's nice to know I'm not alone.