Unicorns, Butterflies, Baby Girls…and Half a Heart.

by Suz on May 11, 2014

In the past year,  I’ve been on a lot of adventures….climbing in patagonia, providing anesthesia in Ethiopia, visiting the middle east…but all of those things are small fries compared to the adventure we’re about to start in a few weeks.

Lula at 18 Weeks

”Lula:18Weeks”

Yep…that little thing has been living inside me for the past 38 weeks.  Her name is Lula, and she’s due in a few weeks.  Unfortunately, it’s not all sunshine, butterflies, and unicorns as we found out at our 20 week ultrasound she has a very severe heart defect- pretty much the worst one you can get.

Hypoplastic Left Heart Syndrome (HLHS) is when the left ventricle (the part of the heart that pumps oxygenated blood to the body) doesn’t develop and/or work at all.  Lula essentially has half a heart.  The cause is unknown and the treatment is 3 open heart surgeries after birth (The first, the Norwood Procedure at a few days old. The second, the Glenn at 4-6months.  The third, the Fontan around 2 years old).  The surgeries aren’t considered “corrective” in the fact that she’ll be “fixed” forever.  Rather, they are “Palliative”, which means it allows her to keep living for an undetermined amount of time.  Thirty years ago, babies that had this all died…the oldest living people now with HLHS are in their mid-20’s.

While HLHS survival rates have improved dramatically over the past 20 years, they still aren’t awesome…About 10-20% of babies die within a year and 25-35% of kids don’t live past their fourth birthday.  Click here, if you want to know more about the condition, the surgeries, and see some nifty pictures explaining everything…or I’ll write about it in more detail later.

I’ve been meaning to write this post for a long time…but I keep putting it off.  I thought I had it in me to write about the whole experience: What it was like to initially find out that there’s a good chance our baby girl dies at an early age (sucky), how it feels to wonder if it was something that I did to cause it (crappy guilt), what goes through my head when someone asks if I’m going to “change the course of the pregnancy” because somehow killing my baby now makes more sense than the chance she might die after she’s born (thoughts better left unwritten), how it feels to look forward to giving birth and holding our baby for a few short minutes, dreading when they take her away from me to bring to the ICU(terrifyingly bitter sweet), wondering why this is happening to us out of all the people we know (because we are blessed to have a child with whom we’ll never take a day of her life for granted…I’m still working this one out)

Lula at 32 weeks.

“Lula:32Weeks”

Through it all so far, not everything has been sad…sometimes it can get a little bit funny.  Could just be the old ICU nurse in me, but there are actually a lot of jokes one can make about having only half a heart.  As for Justin, he’s pretty excited that his little girl will have gore-tex patching her heart together (only to a Coloradoan could this be a high point to pediatric heart surgery).

I am convinced the love, support, and prayer from all our friends and family (and friends of friends and family whom we don’t even know) is what makes this all seem okay.  There are people praying for Lula and our family, literally, all over the world.  And God has shown up.  I don’t much(or ever) talk about God/Jesus/faith here, but there is no way to share our experiences relating to this devastating news without bringing up the grace, love, and comfort He has shown us in the past few months.

We didn’t pick this for ourselves and our baby.  While there is still an immeasurable sadness that goes along with all of this, we feel at peace and are trusting Him to bring us out the other side closer to Him and stronger in our faith, no matter what happens.

I made myself write about this so I could inform more of our friends and family about what’s happening so they can start/continue praying for us.  Our specific prayer requests are these.

  1. That she cooks inside me a little bit longer till closer till her due date, giving her more time to get fat and chunky for surgery
  2. That I’m able to deliver through the “southern” route and not by c-section, because I won’t be able to hold her at all before they take her to the CICU if I have a c-section.
  3. That all goes well throughout her first surgery (sort of obvious one…) and she recovers well.
  4.  That she learns how to eat and gains weight appropriately afterwards so she doesn’t need to come home with a feeding tube (nutrition and feeding is usually what keeps babies in the hospital after these surgeries as they either don’t have the energy to eat, or they have problems learning how to eat as they’ve had tubes and such in their mouths)

After more than ten years in the healthcare field, it’s strange and unsettling to be on the patient side of things.  I feel a little bad for our doctors and nurses that have to deal with me.  Most patients come into their appointments saying, “According to google and WebMD….”   I walk into my appointments saying, “Sooo…I just went to this pediatric cardiology conference and there’s this new study out…”  I’m not sure who they roll their eyes at more, but I’m assuming it’s at me.

We are blessed to live very close to Colorado Children’s Hospital, where they do quite a few of these surgeries with good results.  Despite dreading all the bad, both Justin and I are getting very excited about getting to meet this little fighter warrior baby girl.

Lula at 37 weeks, showing off her fighting fist

”Lula:37Weeks”

In her last ultrasound, we couldn’t get any good pictures because of her position.  All she wanted was to raise her fist…and what a strong looking fist it is.

Thank you all for your continued thoughts and prayers, they mean so much to us.  My goal is to update on her condition via the blog, so I don’t have to send a million different emails out.

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{ 13 comments… read them below or add one }

Kate May 12, 2014 at 8:50 am

Suz,

We’re praying for you, Justin and your sweet baby. We’re asking God to surround you with His peace and give you great strength in these next weeks. We’ll pray for the items you’ve given on the list above–if there’s anything addition, please let us know.

If there’s anything we can do–we’re here.

Griffin & Kate

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Kelly May 12, 2014 at 9:57 am

I am totally feeling for you guys… While our diagnosis was not nearly as severe as yours, I know what it feels like to go into your exciting 20 week ultrasound, and leave there crying and draining your iPhone battery googling the best place and surgeon to have your heart baby and what the newest studies are saying. Our “enjoyable” pregnancies were stolen by the constant worry and fear about what comes next. I think the hardest for me was the last week- I cried every night that I didn’t want her to come out, because inside she was safe. I’m sure you can relate and I just want to hug you.

You guys are not alone, and by the positive nature of your post, You already know that. Stay positive because little miss Lula is going to sense that and need every bit of it. I will be thinking of you and Justin as you embark on your journey with your little warrior. She obviously is already coming out a fighter with that fist raised ;)

XOXO,
Kelly

Please send me your address!!

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Rebecca Elowski May 12, 2014 at 10:43 am

Sending you love and prayers. Congratulations on your baby girl!

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Kimberly May 12, 2014 at 2:45 pm

My heartfelt prayers are being sent for your precious family. The depth of love of being a mother is the greatest gift God can give. Your daughter will be a fighter bc her parents are fighters!! Her fist pump proves that! It’s her way of showing you guys “we got this mom”! Love you bunches!!!
Kimberly

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Deb and Mike Papenfuse May 12, 2014 at 3:09 pm

Susannah,
Wow, what a whirlwind it has been!!! We have thought of you often over the past few years. It sounds like you have had some exciting times. Thank you for sharing this with your friends. I can’t even imagine all the emotions. However, our God is an awesome God and there will be many prayers lifted up for Lula, You and Justin. I will pass this on to our community group to pray too. !!!
Blessings, Deb and Mike Papenfuse

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Gina May 12, 2014 at 3:59 pm

We will continually keep you in our thoughts and ask for strength for all of you. Lula will be a fighter and do just fine with her surgeries. We look forward to hearing of her arrival and seeing her sweet face.
Love Uncle Don & Gina.

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Jon and Katie Rene May 12, 2014 at 4:43 pm

Suzannah
It was very emotional reading this and we are sure this was difficult for you to write as well. But just doing so shows courage on your part. We prayed for Lula, Justin and yourself, for healing, comfort and peace. We will continue to pray for you.

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Lisa May 12, 2014 at 7:59 pm

This is Lisa, from what used to be Seeking Elevation. I was excited to see your post pop up in my feedly today and then so excited for you about your baby girl. Congratulations! And then instantly worried for all of the obvious reasons. Good on you for finding the humor–it’s that which sustains us. I’ll look forward to reading your future posts and seeing how things go. Hang in there and know you have the support of all of us.

Best,
Lisa
Lisa recently posted..Livin’ In A Foreign Country

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Diane Bearss May 12, 2014 at 9:50 pm

Susannah thank you do much for sharing your journey
And your heart… You,hubby and of course Lulu
Will be in my prayers… Humor, faith,Grace and love
Will carry you through!!! God is good… Love you !!!

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Jane Harris May 13, 2014 at 1:56 pm

Lulu is in good hands (God’s hands). We pray for the Father to heal this baby girl completely! May He continue to give you peace. Our love to you! XO

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Jane and Jesse Song May 13, 2014 at 2:03 pm

Dear Susannah,
Thank you for sharing. Our daughter has a severe genetic condition that we didn’t find out until she was 1. But God has took great care of her. She is eleven now, very healthy and joyful. Throughout her life, we see more and more clearly that her physical condition is a blessing in disguise. We learned so much from witnessing how God provides everything she needs along the way. She has kept us close to God in many ways. So, the problem is hard, but God is great. It is really an honor and privilige to be trusted by God with a special-need kid. Love and prayers!

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Jess Hartman May 20, 2014 at 10:26 am

Thinking of you. I can only imagine what you must be going through. We just had a little boy less than 2 weeks ago. Every time we went to the dr, we were completely terrified that they would tell us something had gone wrong. My husband is a neonatologist, so we just assumed the worst for the entire pregnancy. It is tough being in medicine and being on the patient -now parent-end of things, but you are going to be an amazing mom and advocate for Lula (love her name, btw). Hang in there…if you ever need/want any medical advice from him (just one opinion, of course) or new momma advice, let me know. Thinking of you!!

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Jolyn May 25, 2014 at 8:40 am

What a lucky girl to live with you wise, well-read, ever-seeking and praying mother. The wants I have for you and your family are a very large order. I’ve got confidence in a higher power, trust in medical advances and assurance as a mother that your heart will beat and pump in these days and weeks ahead of you to grow Lulu strong and resilient.
My friendship is always cheering you on in every step since grade school and will most certainly continue to do so.
If you need someone a few hours ahead of your early risings, Nova Scotia is on Atlantic time. I will teach you ring sling holds by Skype to accommodate her every need. I wish for her to continue to feel her Mother’s beating heart as the life force and rhythm to her strong physical presence. Surely Susannah, any offspring you create is a feisty one already!

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