Cincinnati Children's Blog

A Letter to My 1-Year-Old Son, Who Had an Encephalocele

A Letter to My 1-Year-Old Son, Who Had an Encephalocele

To My Dearest Miracle, Zak:

December 29, 2017 we will celebrate your first birthday. The past year has been a tumultuous journey—one I can hardly explain in words.

DIAGNOSED WITH AN ENCEPHALOCELE IN SECOND TRIMESTER

From the fifth month of pregnancy, I learned of your encephalocele and the choices I needed to make for both of us. In shock, I stared at the fetal MRI and ultrasounds because they were not consistent with the vibrancy I felt with every twist, turn, punch and jab. I knew then you were and still are a fighter. 

For five months, I cried, became angered, fearful and resentful of God. Why would he bring you into my life, at the age of 45? Only to become a statistical probability of surviving 1 in 5,000 live births? I was confused. As a nurse, I had medicine to believe in. But as a mom, I chose to surrender to my faith.

WHAT FOLLOWED AFTER YOUR BIRTH

encephalocele

From the moment of your birth, we were separated into two hospitals. I saw you only for a second, because I hemorrhaged and was immediately intubated by the ICU team. They saved my life, while you were down the street fighting for yours. I could not see your face, only a large protrusion and tiny little lips – no eyes, no nose, no eyelashes. Yet, you were still beautiful to me.

Three days later, we reunited in the NICU as they transported and wheeled me to your incubator. I could only hold you for a moment. I was too weak to stay but every cell of my body ached leaving you behind. My heart broke, my soul shattered, but I knew I had to be strong for you, even though we were apart. As time passed, my hopeful smiles turned to silence as I quietly watched families leaving with their child in their arms. I wondered if you and I would ever share the same car ride home to Toledo.

YOU SPENT 135 DAYS INPATIENT

135 continuous days of inpatient care equated to 19 weeks, 3240 hours, 194,400 minutes and 11, 664,000 seconds. I only left your side to complete my three, twelve-hour work shifts, which were four hours away. During the drive, I conversed often with you in my heart and with God in my mind. I sang the same song over and over “Thy Will Be Done” by Hillary Scott and the Scott Family. I bought it to play to you when you are older and can comprehend the lyrics. Those long drives offered me solace and time to digest what we were about to endure.

A CRANIOTOMY, ENCEPHALOCELE REMOVAL AND REPAIR

A craniotomy, encephalocele removal and repair were the surgeries you needed. And I worried that you would not  return as the little angel I grew to adore.post encephalocele

Finally at day 128 and at the desired 15 pounds of weight, you left me again for surgery and returned nine hours later intubated in the PICU. For the first time I saw your face! You did have two beautiful brown eyes, with long fluffy, eyelashes and eyebrows. You even had a little button nose and perfectly shaped lips. Your scars were minimal but your swelling was quite overwhelming.

After that, we had two more hurdles to overcome: to reduce swelling and the removal of your breathing tube. The next day you pulled out your three IVs and arterial line and sent a message to the PICU team that you wanted your intubation tube out. They obliged and you soared with flying colors.

YOU WERE LOVED BEYOND MEASURE BY THE WHOLE STAFF

Once extubated, the nurses and PCTs from A7 kept calling the PICU team and wanted to know, “When are we getting our baby back?”  You were so loved beyond measure. From environmental services, to the volunteers, holistic care Maria, pastor Sue, student nurses, Joshua Care team, PCTs and nursing staff. Your new room was decorated with streamers, signs, and pictures.  The staff welcomed you back with cheers, clapping, a tunnel and tears of joy. This unit technically helped raise you from birth.

WE FINALLY MADE THE TRIP HOME

encephalocele

Less than five days later, we made that trip, together, in the car back to Toledo. I am forever grateful to all the doctors and care providers at Cincinnati Children’s. In particular, I am so thankful for Dr. Stevenson who said “we can” when other providers said “we can’t.” And for Dr. Pan who helped unveil your truly hidden beauty.

I don’t know what lies ahead for our journey, but I do know we will cherish every moment we are granted together. I will never allow you (or myself) to say “I can’t.” We can endure all things if we are willing to accept life as it truly is – perfectly imperfect. We will love one another as we were designed to do —unconditionally.

Happy Birthday, Zak!

I Love You,

Mom

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