Matters of Her Heart

 

Yes, it's time for heart cookies again. Miss Eliza wanted pink frosting, and I was very happy to make it for her. As I explained last year, on May 19th we celebrate the anniversary of Eliza's open heart surgery.

In some ways it's like another birthday, because May 19th was the start of her new life, life in which she could grow and thrive and be well. Eliza was born with an atrioventricular canal defect, meaning she had several holes between the two sides of her heart and a large common valve in the center where the mitral and tricuspid valves should be. The defect causes progressive congestive heart failure, and the doctors try to wait to do the repair until the baby has grown some but before the heart failure gets too severe. Eliza had her surgery two days before she turned five months old.

 

Typing that bunch of words is rather simple and easy to do now, but this anniversary day takes me right back to six years ago when things were anything but simple. I remember so well so many little things. I remember the prenatal ultrasound tech acting funny, claiming the scan was taking forever because she couldn't get a good view of the baby's heart. Until she finally brought in the radiologist to explain there was in fact a problem with baby's heart, and we'd better talk to our doctor who would explain it all. And so we waited to talk to my dear doctor who called and indeed explained yes, there were holes in baby's heart requiring open heart surgery and yes, Down syndrome was very likely as well.

I remember the fear. I am a very visual person, and I go through life picturing everything quite vividly in my head. But I could not picture how anyone could repair valves inside a tiny infant's heart. They say your heart is about the size of your fist. Picture a tiny baby fist. And I would imagine what it would be like to do surgery on such a heart. And it terrified me. But surgery was still a long way off so I tried not to think about it too much throughout the remainder of the pregnancy; I couldn't picture it so I wouldn't let myself think of it. And eventually our sweet Eliza was born, and we were deeply in love with our quiet little girl.

 

She did well at first, but as the months went by and her heart had to work harder and harder she had less and less energy for anything else. She never cried. My days were entirely consumed with trying to feed her, but she had no energy to eat. Every day started with Eliza on the scale, measuring and charting every tenth of an ounce; Michael used to say he could tell by the way I said hello when I answered the phone if she had gained or lost. It's a desperate feeling to know your baby isn't growing, isn't thriving, and is getting sicker by the day. I remember how sweaty and clammy she was, and how fast she breathed, her little tired body trying so hard to get the oxygen she needed. Her resting respiratory rate was 80 breaths a minute (you try that). Her color was bad. It was time. And I remember the change in my heart, from fear and dread of surgery to please, fix my baby and make her well. Because she clearly couldn't go on like that.

I remember the meeting with the surgeon. I remember his calm and gentle demeanor and how huge his hands looked. I remember how he wrote down the long list of possible complications as he explained them to us...infection, heart attack, stroke, and at the very bottom of his column, death. I remember the hours in the chapel, pleading before the Blessed Sacrament. I remember the well meaning friends who said not to worry, everything would be okay. And I remember thinking yes, it might be okay. Or she might die. But I also remember learning to trust with every breath I took, every moment of every day, Jesus, I trust in You. Whatever happens, I trust in You. The fear was like a giant wave threatening to overcome me and engulf me and drown me, and I remember just pushing it away as if with a giant hand, Jesus, I trust in You.

I remember the enormous rainbow that appeared over our house the evening before surgery, and it gave us great hope and comfort. We had to be at the hospital at five the next morning, and as is our typical way, we all went as a family. There are so many precise moments that I don't think I'll ever forget as long as I live. We called her Elizabeth back then, and I remember handing her over to the anesthesiologist, and the empty pit in my very being as I watched him walk away carrying my baby off to the OR. I remember the waiting. It started off easy enough, but got more intense as the hours went on. I remember my rosary breaking and all the little beads bouncing and rolling across the floor. I remember the social worker coming to give us a long awaited midway report, and how as he walked down the long hallway towards us his face told us absolutely nothing. But then his mouth opened and he told us Eliza was off the bypass machine, and her heart was beating on its own. I remember that moment. 

And I remember when the surgeon came out to talk to us when he was finished with her. When you talk to a cardiac surgeon after he has just completed an operation on your baby you want him to say, Everything went great! But he didn't say that. He said, I did the best I could do. I remember those words. And I remember being so grateful for the best he could do.

I remember when they told us surgery was over and they would be bringing her up to the PICU, and that if we stood right in this spot and watched we could see her go by. And I remember the elevator doors opening and the stretcher being rolled off, surrounded by caregivers hunched intently over her. I watched the rhythmic squeezing of the anesthesiologist as he bagged her, and I thought of how he literally had her life in his hands. But I thought no, He has her life in His hands, this man is just using the ambu bag to provide the breaths.

I remember finally being allowed in to see her, and I sat at the bedside of my baby on a ventilator and hooked up to six IV pumps and tubes and wires coming out of every where, medically paralyzed so she could not move, nurses continuously adjusting beeping med machines until they got the numbers they wanted on the beeping machines monitoring her vitals. And I marveled to watch her breathe. Slow, even breathing. No panting. And I was amazed. I couldn't stop watching her breathing, so slow and peaceful.

I remember the first echocardiogram she had after her surgery. I remember the kind and gentle man who came to her bedside with the portable ultrasound machine, and I remember looking at that screen. I remember how incredible it was to see a heart with four chambers and the blood flowing in the proper direction instead of sloshing every which way. I was so thankful.

Having no beads, I prayed endlessly with rosaries and chaplets counted on her fingers and toes. I rested my chin on my hands on the side rail and looked at her. I wore a sore spot on my chin that week.  I remember how she spiked a fever that first night, and she looked even more pathetic as they surrounded her with ice bags and even put one on her head. They next day she was too sick to take off the vent, and I was sad. She had difficulties and setbacks and made slow progress, but I remember so many moments of mercy during that time in the hospital. When I was down and discouraged and bordering on despair He would send a little sign of encouragement, and I was so thankful for His care. One night I caught a glimpse of the Divine Mercy medal around the neck of the night shift secretary, and the next night she brought a medal for me. Those kinds of mercies mean so much when you are having a hard time and struggling to keep it together. I remember all of those moments when He made His care so clear.

I remember how Eliza would not smile once while she was in the hospital. Her siblings came to visit her and she would look at them but she had no smile in that place. She took a little longer than average but she eventually turned the corner and got well enough to come home. I remember being frightened of taking her off the monitors. After so many days of staring at beeping machines and having everything depend on those flashing numbers it seemed scary to not have them. And watching mandatory instructional videos on infant resuscitation didn't help. But again I remembered, Jesus, I trust in You.

I remember so clearly leaving the hospital. After not even leaving the seventh floor of the hospital for a week I recall being amazed to get out and see that the sky was so blue, the sunshine so bright, the flowers had bloomed while I was hidden away inside. I remember the incredible feeling of walking out of those doors with my baby in my arms, alive and well. And while I did manage to keep it together with just a few quiet tears here and there throughout my week stay, I walked out those doors and cried my heart out. Big, choking sobs of relief and gratitude overcame me and I trembled as I carried my girl to the car. I was so very thankful to be taking her home.
 
Six years later she is happy and active and doing so well. She makes us grin with just about every word she utters. And she has a telling white line going down her chest. Every day I notice even the tiny little scars on her neck where her central line was stitched in place. And six years later I am still so very grateful for her beating heart and her rosy cheeks as she runs and jumps and plays. Her valves still leak and she is still on meds and we still live by Jesus, I trust in You. I am so grateful. Not just on May 19th, but every single day.

Comments

[Christine]

May God continue to bless Eliza and the rest of your family! Please pray for a friend's baby girl, Zelie, who has the same heart condition and will be having surgery this summer.

Jesus, I trust in you!

[Ellen]

What a wonderful story of your faith. Eliza is certainly one of God's miracles.

[Kate Wicker @ Momopoly]

This is so beautiful. Almost as beautiful as your Eliza.

Blessings!

[Jenny]

What a fitting celebration for a beautiful little girl and a trustful momma. Thank you for sharing your heart in word and pictures.

[Jennifer D.]

Thank you for sharing this story with us; it can't be easy. Thank you for the reminder to trust in Jesus no matter the situation. I am forever grateful for your blog and the example you are to me. I am in awe of your faith.

[Meredith]

Such an awesome testimony of faith Kimberlee, thank you for sharing Eliza's story so beautifully! She is truly heaven sent. Love and hugs to your girl on her special day :)

[sprittibee]

What a GORGEOUS little angel. ;) I'm so happy you were such a brave mama and that God is such an AWESOME God. May little Eliza have a long, blessed life. She surely has a head start with the loving family she was placed in.

[Ruth]

Eliza is absolutely beautiful. Thank you for sharing such an inspiring post.

[Karen]

Happy Heart Day to your beautiful Eliza! Thank you for sharing her story. As always, you're an inspiration.

[Lacy @ Catholic Icing]

What an amazing story! I read every word. I can't imagine how hard that must have been. My husband has a cousin with down syndrome, heart problems (among other syndromes) and they were told she would live less than 10 days, but she is now 2 years old! And I'll bet you'll never guess what her name is... Faustina! :-)

God bless your family!

[shelly]

Kimberlee, what beautiful heart-felt words!! I love this post - I love Little Eliza peeking in throughout. What a beautiful child!

thank you for sharing such an emotional ride!

Blessings to you!

[Ali Dent]

This story brings back memories. I have four children of which two were premies and one of those had her lungs "pop" and sink into her chest. The Lord is faithful and his presence is the strongest thing I have. My child who had her lungs pop and had surgery was at the hospital yesterday. SHe is pregnant with her third child which is due in a week. The babies heart was beating too fast and the doctor thought she would have to take the baby. They gave Matti fluids and the baby's heart rate returned to norma. What was going through my mind and heart? Memories of her lung surgery and the awesome presence of a powerful God we can rely upon. AMEN and AMEN!!
Thanks for telling your story:)

[Stephanie]

Kimberlee, we do not know each other, but I read your blog often. I find your posts inspiring and lovely, but I especially enjoy your posts about Eliza. She truly is one of the most beautiful children I have ever seen.

[Renee]

Oh Kimberlee, this is so beautiful, for sure a testimony of great faith, but also of great fear no doubt. It's Eliza's story, one that should not be forgotten as she grows and celebrates this special day's milestone year after year. It is healing to write and share, even though it must still be difficult to do that with those who weren't there and know not the grueling anguish experienced that day.

Thank you for sharing, as I feel so blessed and very much appreciated reading this today. Hugs to you sweet lady and to your precious girl. <3

Love (!) the photo of the two of you together on your left side bar and your lovely new banner.

[Kristyn]

Oh, Kimberlee... I can just imagine you there, praying your rosary on her tiny sweet toes... thank you for this beautiful story.

I read Eliza's birthday post that you linked to and thought of my friend, who was blessed by a relic of St. Faustina (on her feast day) in 2007 and had a baby exactly one year later! :) Isn't that the neatest?

[Courtney]

Thank you for sharing your story. I'm so glad everything turned out well for Eliza. My husband had a ventricular septal defect when he was young. There was no murmur or any other evidence, so it wasn't discovered until he was almost two - his mom took him to the doctor for a routine checkup and casually observed that when he ran around, he lost his breath easily and had to bend down with his hands on his knees. He had open heart surgery at 23 months old (and his mom was 8 months pregnant at the time, poor thing). I know she felt the same way you did to see her little one covered in tubes. My husband has his own long white scar, just like Eliza's. (Though it doesn't go all the way down to his belly button like it did when he was little.) He has a Teflon patch on his heart as well, so we always like to say he has a non-stick heart! Anyway, thanks for letting me share my story, too. I feel like we have a little connection. :) Best wishes to you and your family!

[Kris]

That was beautiful! It brought tears to my eyes, as I could have written it myself, right down to so many of the details. Thank you God! Our day for celebrating our little OHS survivor's day is 9/19. Like you, it's a day, a week, imprinted in my memory.

[Diana]

Oh, dear Kimberlee....if you only knew how much this helped me....You know Lily is suffering now, she is facing many more weeks of jaw distraction.....we have had a few very rough days, and reading your post made me remember......remember Who is in charge....His grace is Sufficient....and we are so, so blessed to be mamas to these precious children.
God bless you.....and that Eliza is so stinkin’ cute, OH MY!!!! Lily and her would get along splendidly.

[kristi]

Thank you for sharing your touching story. I couldnt stop crying....she truly is a blessing.

I love the phrase Jesus I trust in you. It says it all

[Barbara]

God bless you little Eliza! You have a beautiful story of how much God loves you!

[Patty]

You are so blessed. Thank you for telling her story.

[Lenetta @ Nettacow]

Thank you for sharing with us the blessings you have received! I linked to this on my weekly roundup, the post is under my name.

[Kristen Laurence]

Tears of both heartache and joy are at once streaming down my face! Oh Kimberlee, you and your Eliza are so very beautiful! How you open our eyes to God's infinite mercy and love! What an incredibly breathtaking story. Oh help! I need a box of tissues. :)