“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Thursday, February 2, 2012

A Broken Heart No More..

The month of February is Congenital Heart Defect awareness month (as well as Turner's Syndrome awareness month!). 
Most of you already know that sweet Lydia was born with a broken heart. That tiny heart has been the source of me facing my greatest fears, it has brought about my biggest worries, it has forced me to give God my most precious treasure despite my raging terror, and it has brought me my greatest joy now that it is broken no longer....
We were 22 weeks pregnant when the doctor told us that he only saw one valve in Liddy's impossibly tiny heart, a "hard" marker for Down Syndrome,which led us to have an amnio immediately. Not because we had a burning desire to know, but because we wanted all of the cards on the table so that we could make plans for her birth that would put her in the best place possible for her safety.
We knew on that day that no matter what the amnio showed, we would be facing open heart surgery in the near future....the timing was the only thing entirely uncertain.
I was in the beginning days of a second level anatomy class and strangely enough (divine intervention, anyone?) the week we found out all of this we were studying THE HEART. I have to admit that when it came to the lab part of the class, where we were dissecting one, I spent the entire class choking back tears. Yet, I can guarantee that at the end of that section of the class, no one  learned more about the heart than I did. I had a driving force to absorb as much as possible that no one else had, because it was vital to me to know. My profs were amazing about staying after class and answering all of my questions about the normal anatomy versus Liddy's anatomy. 
I even was brave enough one class period to take in the dvd we received of an ultrasound and show her heart to the class. 
Liddy's heart never fully formed a septum (the center dividing wall) which left her with a giant hole in the center of her heart. The septum's formation is actually what divides the original single heart valve into two valves, one on each side. Because Liddy's septum never closed, she was left with the single valve which spanned the space where the septum belonged. 

What a Normal Heart Looks Like

What Liddy's Heart Looked Like
In all honesty, I didn't concern myself with Down Syndrome as much as I did her heart. Her heart was the center of all of my worry. While I did grieve over what I thought was the death of all of my hopes and dreams for my daughter, the fear of what her birth would mean to her already broken, mangled heart consumed me. Down Syndrome didn't scare me half as much as the thought that I could lose her before I even had a chance to really know her. I just wanted my miracle to live.
She was born, in better health than anyone had ever told us to expect.

 Despite most babies with a condition like her own rapidly declining into clinical heart failure, she never did. She gained weight slowly as we waited on pins and needles for the day we had known was coming for months already........
July 14th, 2011. Barely 6 months old. A little over 13 lbs. 

With hearts paralyzed with terror and voices choked with tears, we kissed our angel and handed her to a nurse for surgery and settled in the waiting room for what amounts to the longest day of my life. Almost 8 hours later, we were brought in to see her for the first time.......

There aren't words to describe the agony of a vibrant, sunshiny baby girl being returned to you 8 hours later, so still. 
A complication of her surgery had disconnected communication between her atria and her ventricles, which left her temporarily on an external pacemaker until it could be determined whether she would need a permanent one placed later. 
It took almost 4 days of waiting before I got to hold her. Four days of heart rending pain, helplessness and in Liddy's case, downright anger at these new circumstances she found herself in. She fought us, she fought the nurses, she fought to sit up on her own (which she wouldn't actually do until much later). Until the moment it was decided that I could hold her. 
She knew. Peace descended.

13 days post surgery, she again went under anesthetic for a pacemaker placement. While my fear level was not quite as high as it was before her OHS, I was a nervous wreck. It seemed that it took so long to catch glimpses of the girl she was before surgery that I was terrified that she would return to the lifeless child who had greeted me not quite two weeks before. I was immensely sad that my tiny girl who had already been through so much now had to go through more. But just as the OHS was necessary to save her life, the pacemaker placement was necessary to get us all home. 
My fears were needless. She was awake and smiling when we saw her after that surgery. And three days later, we were heading home.........with the storm at our backs and nothing but sunshine ahead.

While this ordeal was easily the most difficult and painful thing I have ever experienced in my life, there was many good things that came from it. I learned that God is in charge, that He hears my prayers and that He answers them...not always in the time frame I have in mind or in the manner that I would wish, but He answers just the same. I learned that we are lucky.....so many families there in the PICU with us those long 13 days had things so much worse. I learned how strong I can be when it is warranted. I learned the reason for those long days poring over anatomy books, studying the heart...I needed every lesson I learned to understand the doctors entrusted with her care and to continue advocating for her (at every morning's rounds! I'm sure those doctors were so glad to see the last of me!) I learned that NO ONE knows my baby the way that I do; what she's saying without a word, what she is capable of. But most importantly, facing losing her made me realize exactly how very much her presence in my life means to me and how fiercely I love her.

Over 6 months later and without the scars or the tiny bulge in her belly where her pacemaker resides, one would never know what she has been through. Never know that she was born with a CHD. 

For now in her chest where a broken heart once resided is one as new and as perfect as anyone else's.

"Make broken hearts brand new.....That's what FAITH can do......."


  1. I love the scars...they tell such a story...
    and she looked amazing after surgery! Seriously! Brooke looked liked a corpse..honest to God, it was awful...
    and how cool that you had professors to answer all your questions...what great timing

    1. Those profs were a God send. All of that learning kept me sane (and gave me the opportunity to talk like I actually knew what I was talking about to all of those pesky doctors during the looonnngggg PICU stay!).
      One of the defining moments of our 16 day stay came after Liddy had been moved to the heart unit. During rounds, the new doctor asked a question about Liddy and while the resident was shuffling through her chart trying to find the answer, I piped up and answered for him. The doctor looked at me, with his chin on his chest, and said "Wow. Most parents would have never known that." I smiled and replied "If you want to know anything about my daughter, all you have to do is ask me." :)
      I have never been so thankful for my education in my life!!

  2. Hey! I'm posting as Anonymous but it's me, Jill! LOVE this post! I was thinking of "What Faith Can Do" the whole time while reading! :) I liked reading the part about what you learned--I had a similar experience about realizing God was in charge. In the days leading up to Jarrett's surgery, I was a nervous wreck and was becoming more and more anxious to the point where I couldn't sleep a wink. I vividly remember one night (pretty much out of desperation) just saying, "God, I can't do this anymore--I'm turning my worries over to you…" and the most amazing peace came over me right then. I've never been "super spiritual/religious"person but that really changed me. I had a calm feeling that God was in control and he already knew how the surgery was going to turn out anyway!

    1. My dad and I had a phone conversation the morning after Liddy's lung collapsed. As I was sobbing about how desperately I wanted my baby back, my dad quietly responded that I would never truly have her back until I gave her completely to God. Phew. Talk about taking a hit straight to the heart.....
      While I had prayed and prayed for Him to heal her, I never once completely relinquished my hold on her. I was willing to give her to Him for short stretches of time, but as soon as a crisis ended, I snatched her right back.
      I had to give myself a pep talk every morning on the walk to the hospital but once I truly gave her to Him to do with whatever was His will (and trusting Him to return her to me!) my baby came back piece by piece. :)

    2. Wow! Pretty powerful! I think you hit the nail on the head--TRUST!! It's like those old trust building exercises where one person falls back and the second person catches them. It is SO hard to trust that the person's going to catch you! Same with God--we have to trust that He's going to catch us and the ones we love--sometimes that faith is SO hard but it can bring the most peace! Jill

  3. I always tear up reading these heart stories...Such tough little kids, such brave Moms.

    After Russell was born they started hearing heart murmurs...They scanned and told me they thought they were seeing three holes in his heart...They sent his scans down to Vancouver for a more expert opinion from a heart surgeon...I was devastated...I remember sobbing to my Mom saying "His heart, the very thing that keeps him alive, and it's broken, something is wrong with it" It was the most difficult time of his NICU stay....Turns out he only had a PDA which closed on it's own (We have shitty equipment here in Canada) Anyway, because I felt we were in the brink of that journey, I feel so much when reading about stories like Liddy's.

    1. The scariest thing I have ever been through....but just like when she was born defying the odds, proof that miracles happen. The more I learn about the heart, its size, its shape, its function, the more amazed and in awe I am that one man's hands guided by God took something the size of a walnut and rebuilt it. That is a miracle. :)
      I'm so glad that you didn't have to go through this...its a trial by fire that I wish no parent ever had to face again.....


Yes, I read every single comment and I love them all! Please leave us one (and imagine me doing a happy dance when I see it!)