The Story of a Little Heart Continues

Donate or join a walk today!

Over the next two years Adam continued to undergo various tests, procedures and surgeries and we continuously witnessed miracles. At 6 months old, we learned at a routine cardiology appointment that Adam was going into heart failure. He was admitted to Cincinnati Children’s that week for a cardiac catheterization with the hopes of repairing the pulmonary conduit through the catheter (rather than putting him through another open heart surgery). Through the catheterization they were able to successfully place three stents in order to open up his collapsing grafted artery. In subsequent cardiology appointments, his cardiologist continued to marvel at how Adam’s little aortic valve just chugged along. It was always leaky, but somehow his heart didn’t mind.

image

8 months later at just over 1 year old, Adam had part 1 of 2 surgeries to repair another birth defect, this time a urological one. Under any other circumstances the surgery would have been quite a big deal, but compared to open heart surgery, it was a walk in the park. 🙂 As always, he submitted to this trial cheerfully and lit up the halls of the hospital with joy.

IMG_0651

Adam was procedure-free for a whole year, when he was again admitted to Children’s Hospital this June for a heart catheterization. The graft had started collapsing again and doctors had hoped to stent it once more. However, when viewing Adam’s heart through the scope, the doctor saw that his aortic valve was leaking severely and determined that it would need to be replaced via open heart surgery.

9/25/14

Dear Adam,

So here we are again.

image

You’re in your hospital bed. I’m lying here in a dark hotel room, closing my eyes and willing sleep to fall upon me. I don’t want to think. I just want to sleep, but my head is spinning. I roll over to look at the clock. Only 3:32am. I swear I looked at that clock hours ago and it said 2:37. I still have 2 1/2 hrs to lie here praying for sleep. I can’t stop thinking about you. Just before I picked up this pen, I was thinking about earlier today. We picnicked together. We walked through a field of wild flowers toward the clearing and the picnic table. The sun was bright – only a few fluffy clouds in the sky. You chased a butterfly. The sun rays danced on your white-blonde hair. I pretended that you were whole and that there was no such thing as pain or worry for you and me. This must be what Heaven is like. I can hardly imagine anything more beautiful.

image

Of course thoughts of tomorrow are also keeping me awake. What if I lose you, dear Adam?? That question runs over and over on a treadmill in my mind and threatens to tear down my spirit and shake my faith. But I will tell you what will happen if I lose you – we will be together forever. I would be sad. So devastated. For a time. And I’m sure, for the rest of my time on this earth, I would ache to hold you again. But the heartache has a happy ending because we will be together forever. Families are forever, Adam.

I pray for you, my little sweetie. I pray that you have angels singing you lullabies tonight. I pray that your body will be strong tomorrow. I pray that the doctors will repair your heart and that Heavenly Father will heal you. I pray for comfort for me and for Daddy and for all those who love you. I pray to have the courage to except God’s will, come what may. I love you, Adam. You are one of my greatest treasures. I love being your mommy. Night, night.

9/26/14

My Dear Adam,

I’m stretched out on a recliner in what we’ve called the “VIP” waiting room. Last night was restless. I think I slept for an hour. We returned to the hospital at 7 this morning. As the automatic doors opened, we could hear the cries of our little angel and we rushed over to be at your side. Over the phone the nurse had told me that you had done okay through the night, but right as we got there, they were placing your catheter, which was the reason for your cry. I held you tightly and we rocked in the chair next to your crib and beeping machines. At 7:37 the team of anesthesiologists  collected us. We walked through a maze of hospital hallways, with you squishing your nose into the crook of your daddy’s neck. At 7:41 we kissed your soft head goodbye. I said a silent prayer as I allowed the tears to spill from my eyes.

9:29 am – The nurse just poked her head in the waiting room to let us know that you are under anesthesia and doing well.  They will begin the surgery now – open your chest first and then put you on the bypass machine.

11:46 am – We just received an update that they have finally made it through your sternum and the surgeon will now begin putting you on the bypass machine (since you had a previous open heart surgery, the scar tissue made it very difficult to get through to your heart again).

1:40 pm – Another update from the nurse – you  are on the heart-lung bypass machine and you are doing well. For the next couple of hours your heart will be stopped so they can operate. Acting for your heart, the bypass machine will pump your blood out of your body, oxygenate the blood and then pump it back into your body. Placing you on the bypass machine and taking you off of it is the most complicated and dangerous part of the procedure. Now they’ll proceed with fixing your aortic valve and replacing the conduit. (sigh). I brought tons of things to do today but I can’t concentrate on any of them because I’m praying for you every second.

3:07 pm – They have replaced your truncal (aortic) valve and now they are starting on your pulmonary artery. Initially, the nurse told us that the surgeon was able to repair your own valve, which would have been truly a miracle because it was so badly deteriorated; however, in the end the doctor did have to replace your valve with a mechanical one. This is still a miraculous blessing because it is a large adult-sized valve that will last you for years, and it is a special valve that will require only a very small amount of blood thinning medication to keep it operating properly. We won’t have to worry so much when your 2 year-old clumsiness causes you to fall and bump your head. 🙂

3:55 pm – Already received another update! The doctor has replaced your pulmonary artery graft and you are now off of the bypass machine. He will close you up, place chest tubes and prepare you for recovery. You are stable and doing well.

5:46 pm – We just talked with Doctor Morales. You did awesome, baby. You are stable and already extubated. We get to see you a half hour! The wait is torture. I wish I could wrap you in my arms when I see you, but I know that hugs will have to wait. See you in 30 minutes, little sweetie.

I wish I could say I never once doubted that the surgery would go well and that you would be okay. The truth is…I was worried that 7:37 this morning would be the last time that I would snuggle you. I was overcome with emotion when I saw you for the first time this evening. The nurses were hovered over you and I watched through the glass door. My heart overflowing with gratitude, I thanked my Heavenly Father for such miraculous blessings and tender mercies. I felt in awe that someone so small could endure so much. A witness of the Spirit burned in my chest and I knew that you had received strength through our Savior, Jesus Christ. Your Heavenly Father loves you, Adam, and He has sent his angels to comfort and watch over you.

image

You are in for a long recovery and I know you won’t understand, but somehow you will endure it cheerfully like you always do. When you were still in my tummy, I used to say that although your heart is tiny, your spirit is mighty. That statement rings truer than ever now that I’ve spent the last 2 years loving you. I know that you are in God’s hands. I feel so much gratitude toward my Heavenly Father that I have been blessed with such a special little boy. Goodnight, my angel. I’m sure you won’t sleep well tonight, but we will be there to hold your tiny hand. Mommy loves you.

 

One thought on “The Story of a Little Heart Continues

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s