Saturday, August 14, 2010

The last night....

Ok, I know I said I was taking a break this weekend. But there is too much going on inside my head. I gotta get it out. The kids and Shane are all in bed, so I'm not missing out on family time.

Here it goes....

I remember the last night in my bed before Hannah was born. She was scheduled to be induced on May 13th. The night of May 12th, I remember laying in bed, thinking about how life was going to change. Caleb would  no longer be my baby, my only child. I wondered how I was going to love another baby as much as I loved him. I felt guilty for wanting to love another child as much as I love him. I anticpated the sleepless nights, the nursing, going out with 2 little ones instead of just one. I was anxious, but excited for the way that my life was going to change forever.

Well, I've arrived at that place again. This is the last night in my own bed for 2 months. This is the last night that I will tuck my 2 beautiful babies into bed, kiss my husband good night, and wait for sleep to come. This is the last night that I will be blissfully unaware of what life is like living with a congenital heart defect. This is the last night that we will be home as a family of 4. 

I know many of you have reminded me over and over that our journey has already begun. You are right. At 22 weeks, my life was turned upside down. I will NEVER be the same person that I was at 21 weeks and 6 days. My life has forever been affected by CHD. But.......tomorrow, our journey truly begins.

Tomorrow is my last day of sustaining and protecting Joshua's life. Tomorrow will be the last day that Joshua's heart will EVER funtion as it should. Tomorrow is the last full day that I will ever feel his kicks, rolls, punches, and hiccups. Tomorrow is the last full day of me being pregnant. EVER.

With that comes relief. I feel like my body can't hang on forever. The pain and discomfort of pregnancy is becoming too much for me to bare.

But on the opposite end of the spectrum, I'm terrified. I don't want my baby to go through the pain and suffereing that he will go through. I don't want him to have to forever worry about what his heart is doing. I don't want our lives to change in any other way than welcoming home our 3rd child. I don't want to only talk to my other 2 children over the phone during the week and only see them on weekends for the next 2 months. I don't want this CHD life.

This is my last night before it all begins. God be near.


Nikki said...

I saw the link for your blog from a friend and I wanted to let you know I am thinking of you and praying for you and little Joshua.

I know so many people who have HLHS babies and they are toddlers now and doing FANTASTIC. I don't have personal experience with HLHS but both of my kids have a CHD so I know the fear that is going through your heart right now. To put it bluntly, it sucks.

You can email me anytime at or visit me at

Kristine said...

Can't imagine what you're feeling. I just can't. But, I can offer up a hug. A big hug. I'll be thinking of you guys CONSTANTLY and watching for updates. I know I've offered 16 million times, but remember someone will be nearby thinking of you should you need anything.

Anonymous said...

Good Luck we are here if you need it Love Rylie's Heart HLHS

Dana said...

I will keep your family in prayer. I remember thinking similar thoughts the night before my c-section and even throughout my pregnancy. I also found out at 20 weeks that my daughter, Rebecca Faith, had HLHS. I wondered how life would be different and how hard it would be to be away from my oldest daughter Savannah. Rebecca was born on April 6,2010 but because of many complications and unforseen medical issues she passed away the next day. She was a very sick baby but she brought so much love into this our family. Thank for sharing your feelings. It is good to get them out, I know it helps me. I'll be praying for you and baby Joshua tomorrow.

Joy said...

Hi, I am mommy to Jilly, age 3 1/2yrs. with HLHS. I just want to encourage you, and say that: NO, none of us wanted this life... but now that we have it, we would not trade it for the world! I know I am not alone in saying that, as I have heard the same from hundreds of "heart moms". Baby Joshua will open your eyes to the most amazing courage you could ever find... yes, your newborn baby will become your hero! He will fight like crazy to survive, right before your eyes... and you will learn from him, how to have the courage that he was born with!!! You are in my thoughts and prayers, God, is the only way that I have gotten through this journey... may he be your guide, comfort, and shelter. Heart hugs!!! fb. Joy Proper Kimble, or carepage: sillyjilly07

Kristi Kramer said...

Jill, you have been so strong through all of this already. Your journey has been inspiring and it has made you a stronger person. You have a wonderful family who will be there for you.

I can only imagine how difficult the next few months will be for you and Joshua and Shane and the kids. Just take it all a day at a time and remember to find joy in all of the small triumphs!

I hope you get lots of rest tonight for your big day tomorrow!

Jill L. said...

Stumbled upon your blog by accident, like the other post though, I know several hypoplastic babies and their families. Sending you prayers and peace.

I have a CHD little girl, and know how terrifying the journey can be, but it is a blessing to know what you are facing before birth. During our hospital stay we saw too many families in shock because they didn't know, and it's an extremely hard journey when you have time to prepare, let alone when you are thrown that curve ball at the last minute.

Joshua can/will live a normal life, it's just getting thru the first days that will be hard on you and your family but his pain will be minimal, the drs. will take good care of him.

Molly Alisa Photography said...

I've been thinking about you so much. Especially last night. I've been praying and will continue to.

I will see you in a few days. Hugs and love,

Carolina Carters said...

I'm in tears remembering being exactly where you are right now...

Just know that we're praying for strengh for you as you bring that precious little life into this world, strength for Joshua as he makes his big debut, patience and understanding for all of your family, and God's guidance and wisdom for the doctors taking care of both of you.

Lots and lots of prayers!

He'll be a fighter, just you wait! ;) I can't wait to see pictures of his sweet little face!

Anonymous said...

The most amazing thing will happen on this heart journey you have already started to walk. YOUR heart will be open in ways you never even knew was possible.

May God continue to rain down His love and mercy upon your family. I hope that you never feel alone in this journey. Please know that you have many many many people who have never met you, praying for you and Joshua.

I remember crying one night and asking God why my body had failed my daughter. What did I do at that exact moment her heart was forming? I get to see the answer every single day in her beautiful smile. NOTHING.

In just a few short days you will experience what every CHD parent goes through during that first surgery. The tears. The walk to the surgical doors. The waiting for the updates. Both dreading and needing to cling to those updates. If you are like most of us, you too, will know how many tiles there are in the surgical waiting room becaue you will have walked them. You too will know what meals are the good ones - and what ones are the bad! You too will know what it is like to stand before the surgeon who opened your childs chest. You will stand beside the crib of your child and be in awe that someone so tiny could go through so much. You will soon be tossing around the "alphabet soup" of medical terms. You will experience the "CVICU shuffle" of a few steps forward and one back. You will cheer the small things. Learning how to change a diaper with all those tubes and wires in the way will just fall into place. And one day, you too, will be thankful you are on this journey. Your Higher Power choose you to be his Mother because you are a strong woman.

We continue to pray for your family, baby Joshua and most importantly for the feeling of peace.

Shannon Egan

Anonymous said...

Some Mothers Get Babies With Something More

She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know youʼre ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Lori Borgman is a newspaper columnist and author. You can find her at:

Veronica said...

Jill, you are in my heart and prayers! I know God will carry you through anything you feel you can't. Many hugs~ Can't wait to hear about Joshua's birth!

HOPE4ACURE said...

Wow, You story is, I cant even find word, it's heart warming at the love you have for for family, its heartbreaking as I can sense the fear within you. But the thing that stuck out is there is NOTHING you wont do to protect your baby. You are in my prayers and thoughts. I will be following you and hoping for nothing but the best.

Amy said...

I can't believe the day is about here. The day you will meet sweet Joshua. Your family is in my thoughts and prayers!! <3

Anonymous said...

Jill, if you have not already done so, or it has not been mentioned to you by the staff at the hospital, please look into staying at the Ronald McDonald House if they have a local one. AWESOME place. I can not sing their praises enough - we stayed there for over 2 months. They will not turn anyone away - regardless of not being able to pay. At the one in St. Pete FL we were charged $10/night and had to do one chore each day (ours was vacumming one hallway) They provided breakfast, leftovers for lunch and a dinner every day. We would not have been able to survive without them! We were 2 hours away from home, trying to balance life with a newborn who was about to undergo OHS, and a rambunctious not yet 2 year old all at the same time. My husband and I were fortunate enough to be by our daughters side for the surgery and immediate aftermath, then we each took turns driving home for 2 days to see our son. I was on complete bed rest for 6 weeks in the hospital (in St. Pete) prior to her emergency c-section so I away from my son for along time. I know how hard it is to feel torn between your sick child and the one's who are left at home missing you as well. I felt tremendous guilt over that and had to just turn it over to my Higher Power. Just know that it all works out - I am not sure how, it just does. It will work out for you as well.

Take care, enjoy these last few hours with baby Joshua snuggled under your heart, and never stop believing in miracles. They happen every single day.

Shannon Egan

The Cox Family said...

Girl, We've been praying for you and Joshua since almost the beginning. I have faith that God will get the glory and even though it will be hard He will carry you through this. I have an idea what you will be going through since I've helped parents through this, but I can't fully comprehend because I've never walked this journey with my own child. He will carry you through. We will be praying and I am asking my friends and church to be praying. We love you and will be here for you! Love ya! Becky

Christie Huggins said...

I came across your blog when Angi Knouse put on her FB that you are having an HLHS baby. I am so sorry. I have twins that will burn 3 in Nov., and the boy has HLHS. He's doing great now! I can't keep up with him!!! If you ever need to ask a question or just want to chat, I would love to help support you during this time.,, 540-810-0489. Praying all goes perfectly well!!! here is another blog of a mom in Nashville I met that has a 4 month old here is another I met while there at our last I think he is 3 months old now.

Christie Huggins, Harrisonburg, VA

kirsten michelle said...

It's so amazing to see all the love and support and encouragement for you here, Jill. It gives me hope for my own heart baby, for Joshua, and for you. None of us would have chosen this and I hope that in a few weeks/months, we can both say we wouldn't change it for the world. I know you all can fight the good fight and beat HLHS.

Blessings to you all!!

Leah said...

Jill and Shane - sending Love and PRAYERS!!!!!
Praying the day goes as planned by doctors and staff. Praying God' will in this journey. Love you Joshua, welcome to the world, you'll be here soon!
Love Caleb and Hannah too!

Anonymous said...

I remember feeling the same way - not wanting to be a CHD mom - but it has been a blessing in so many ways. It's not easy but it so worth it! With faith, hope, love and prayers, God will see you through. I am praying for you.


Aunt Nancy said...

God bless and keep you, little family of 5! My heart and being think of you often and pray for you in every thought. I remember waiting, sitting and sleeping in a waiting room chair while a little boy was coming into this world so that he could be the husband and father that God chose for you. Miracles are our Father's specialty - especially in the midst of storms. "It's not the absence of storms that sets us apart. It's whom we discover in the storm; an unstirred Christ."-Max Lucado
"Don't be afraid, you are worth much more than many sparrows." Mt. 10:31
"Your are God's masterpiece. He has created us anew in Christ Jesus, so we do the good things He has planned for us long ago." Eph 2:10

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