Connor’s Story

When I was 28 weeks pregnant with my first child I was referred to a specialist at Presbyterian St. Luke’s Hospital in Denver after my OB saw something strange on an ultrasound.  After an initial ultrasound at St. Luke’s, Dr. Richard Porreco, discovered a CCAM (Congenital Cystic Adenomatoid Malformation) in my son’s right lung.  The CCAM was displacing his good lung tissue and his heart leading to hydrops.  According to doctors, my son, Connor, had less than a 50% chance of being born alive.

Connor by Porreco PG 2

This is an excerpt by the doctor that was in charge of my care at Presbyterian St. Luke’s – I am the patient he is referring to in this article and that is the ultrasound of my son’s chest

As if that information wasn’t bad enough, I was immediately admitted to the hospital and put on bed rest until I gave birth. They didn’t seem to care that at this point I was only a little over halfway through my pregnancy. Little did I know, I was in for six, horrendous weeks of bed rest during which I endured endured seven, painful, in-womb surgeries involving large needles and little to no way to ease the pain in order to drain the CCAM in my son’s chest and remove excess amniotic fluid from me.

Connor by Porreco PG 3

This shows Connor’s diagnosis – Type 1 congenital cystic adenomatoid malformation with mediastinal shift causing hydrops. At 28 wks 6 days pregnant Dr. P performed a fetal thoracentesis (stuck a huge needle through my stomach into Connor’s chest to drain the cyst) and drained 80 cc of fluid off of Connor. Then again at 29 wks and 3 days they drained 88 cc of fluid. At 30 wks 5 days Dr. P drained 700 cc of amnio fluid from me as Connor was unable to swallow it like normal babies do. All in all Dr. P drained my amnio fluid twice and performed 5 in-womb surgeries on Connor. I went into labor at 34 weeks and 4 days. His apgars were terrible – basically, he was not stable and chances of survival looked grim

During that time, I was told over and over by medical staff that my son was gravely ill and that there was a very slim chance of survival for him.

Connor by Porreco PG 4

The natural history of Connor’s diagnosis is one of in utero or early neonatal death

It’s like I was being punched in the stomach every single day. I was scared, angry and overwhelmingly lonely though never alone. I spent a long time feeling sorry for myself and blaming myself for what was happening with my baby and in the beginning, I threw tantrums and fought my “jail sentence”. I wanted nothing more than to escape. I repeatedly asked to leave the hospital just to go to church or see the outside world. I think the doctors thought I was crazy. I think they were right. I didn’t fully comprehend what was happening. I was living in a nightmare that I so desperately wanted to wake up from but I never did. I questioned God and repeatedly asked him, “Why me?” At some point I made a decision to trust God and to put all of my hope in him. The truth was, I had no other hope. No other choice and I’d seen some pretty amazing healing miracles in my family already. The seed of faith was there I just had to water it. So I took control of my situation. I chose to fight. I chose to trust God in the face of death. I chose to trust Him and deny my fears and doubts. I chose to live in a realm outside of the natural. I dove head first into the unknown with God. The God of my childhood, the God of my mother, the God that would soon be my own.

I prayed God’s word over my son all day, every day. I spoke life over him. I praised God for the healing that I believed we would receive speaking what was not true as though it were true (Romans 4:17). Before every in-womb surgery I believed that the CCAM would be gone and I thanked God for Connor’s immediate healing. While that nasty thing came back every single time I didn’t lose faith and become angry with God. No. Instead, I went back to my room, my prison cell, and as I laid in bed hooked up to monitors and contracting from the recent trauma to my uterus, I thanked God. Yep. I thanked Him. I chose to praise Him I chose to praise my God in the most horrific and terrifying storm of my life because He was still God regardless of my circumstance. He was still in control. He was still good; still sovereign. My condition didn’t nullify His position. It was only meant to magnify Him more. To put His glory on display. I marched on. I didn’t curl up and die. I didn’t give up. I looked up. I kept my eyes on my Father. I looked to Jesus, the author and perfecter of my faith. I endured.

Finally, after I quit fighting, after I surrendered everything to God my jail sentence ended just as suddenly as it had begun. On January 9, 2008 Nick and I would welcome our six week premature, little miracle, Connor Isaac, into the world, but not without one more fight. (tell quick story of my labor and almost dying)

The doctors warned us that Connor would not cry after delivery but he cried, PRAISE GOD! That swollen, one-eared, gravely-ill, little fighter cried. He cried the weakest cry I had ever heard but it was his and it was beautiful. Unfortunately, the evil cyst inside of my sweet boy was not gone and as Dr. Poreeco was stitching me up the nurses rushed Connor over to the corner of the room to get it drained and then they rushed Connor to the NICU (neonatal intensive care unit). Not long after he was delivered, a surgeon came to my room asking for consent to perform surgery.  She told us that Connor was not stable and the CCAM needed to be removed immediately.  She also informed us that the odds of him surviving surgery were very bad but she would do her best; as she spoke she was shaking, she radiated fear.  At that point I was especially glad that I have been redeemed, that my hope and trust are not in man, but in the one true, living God.  My husband signed the consent papers and she left.

Newborn Connor

My sweet baby boy’s newborn picture

Once again we turned to God.  We began to pray out loud in the spirit and tell the enemy that Connor was a child of God, that he could not have him, and that Connor was healed.  We called on God again and believed that Connor would live through the surgery.  Only a few minutes later the surgeon returned, and with good news!  The CCAM disappeared!!!  They did an ultrasound of Connor’s chest to determine where they would need to operate and they couldn’t find the CCAM; and better yet, Connor stabilized!  Our God is SOOO AWESOME!!!

Three days later the CCAM was back but this time Connor was stable enough for surgery.  But I was not so sure.  To me, allowing Connor to have surgery would be admitting that God was not in control, that he could not heal my baby.  But God had a plan, he made something wonderful happen.  My pastor visited me in the hospital.  He asked to pray over Connor and my husband and I heartily accepted his request.  We took him to Connor’s isolette, his temporary baby bed.  Pastor R. laid hands on our son, claiming God’s healing promises for him, calling down power from Heaven, and taking his place beside us on our battlefield for Connor’s life.  I admitted to my pastor my apprehension in regards to Connor having surgery and the blow it could issue to my faith.  He gently reminded me that God uses people and their gifts for his good.  God works through people.  Sweet relief!  I immediately felt my guilt subside; Connor would have surgery and I would still put my trust in God to bring him through.  On January 12, 2008 my precious son became the 1st  baby to undergo a laparoscopic lung surgery; 2/3 of his right lung were removed and afterward Connor spent 1 month in the NICU.

During that month my family and I prayed over him, anointed him with oil, and continued to speak in faith.  I used to anoint Psalm 145 in my Bible and read it over and over and over to Connor.  God watched over his word to perform it, his word did not and never will return void.  Connor came home on February 8, 2008; such an incredible gift from God!  The doctors said that Connor would be on oxygen for 1 year and Connor came off of oxygen just shy of 3 months old!  We were told that Connor may always have just 1/3 of a right lung but at 1 year old Connor was discharged from his lung surgeon’s care because his lung re-grew!