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!

Advertisements

The Toothpaste Lesson

Today is Day 1 of my TMM or Total Mind Makeover.  Remember my goals from yesterday?  I am working on goal #1 today; loving myself more.  To love myself more I need to treat myself better, to treat myself better I need to think more highly of myself; therefore I need to change my thought patterns, hence –> Total Mind Makeover. 

When I woke up this morning I immediately began operating out of my old mind-set and I hopped on the scale and scrutinized every inch of my body in the mirror.  OOPS!  Not a great way to start the day.  So I began to think of ways to get myself out of toxic thought patterns and negative behavior and into the mind of Christ.  Here are my ideas:  1) Get in the word – CHECK!  I read Psalm 139 this morning, I am fearfully and wonderfully made; 2) Watch my words!  I don’t want to plant any more bad seeds in my mind.  I need to guard my tongue.  This is harder than it seems but it is CRUCIAL in every aspect of a positive life and a healthy mind.

Idea #2 brings me to a lesson that my mom taught my sister and me when we were younger:  “The Toothpaste Lesson”.  “The Toothpaste Lesson” was given to my sister and me when we were teenagers and we had some pretty sharp tongues.  We would say things and then say sorry to cover them up.  My mom would always tell us that we could not take back our words; they were always out there and sorry couldn’t always fix the damage we did with them.  But her words to us never really held any water until she showed us one day.  Mom came home from the grocery store with 2 tubes of toothpaste; 1 for me and 1 for Katie.  She made us sit at the kitchen table and squeeze every bit of toothpaste from the tubes and then try to put the paste back in the tube without changing the tube by cutting it open.  Of course we thought we would be able to do it because we knew WAY more than mom; but boy were we wrong.  We squeezed every drop of toothpaste out of those tubes and tried every possible way to put it back in but all we succeeded in doing was making a HUGE mess!  As she watched us struggle to put the toothpaste back into the tube mom explained that our words were like the toothpaste; once we said them they could not be taken back no matter how hard we tried.  

Though my mom did her best to instill this lesson in me about 10 years ago (WOW I FEEL OLD) it is really hitting home now.  Not only do my words impact my thought life and then my words and actions from there resulting in a downward spiral but they also affect the people around me.  My words plant seeds (good or bad) and instead of sticker bushes in my garden of life I would like rose bushes!  So, I WILL guard my mouth and watch my tongue.  After all, in the tongue is the power of life and death and those who love it will eat its fruit.  I would like to eat the fruit of life therefore I will speak life no matter how much effort this takes on my part.  I will be a good example for friends and family to watch their words as well.  I want my kids to grow up following in my GOOD example; that is why Jesus is mine.  

Heavenly Father, let the words of my mouth and the meditations of my heart be pleasing in your sight!  Let me speak life over myself and my loved ones.  Show me how to live my life with godly wisdom and grace.  Give me the mind of Christ and the strength to live each day for you.  Amen. 

 As a side note I’d like to brag on my wonderful mom who taught me this lesson so many years ago.  She is the best mom I have ever had the privilege of knowing (besides my grandma).  She did her best by my sister and me and she did one heck of a job if I do say so myself!  She parented with grace, wisdom, and strength beyond her years.  She taught me what it is to be a mother and for that especially I am forever grateful.

Giant Baby

Giant Baby or G.B. likes to poop in the bathtub.  I never had a “poop problem” with C so I am unsure of how to deal with it now.   

C and G.B. take baths together every night after dinner, it’s part of our “bed time routine”.  Apparently pooping is also a part of Giant Baby’s bed time routine.  Everyone in the house is completely disgusted by G.B.’s addition to the routine except for G.B. of course.  C is especially upset by this new habit of Giant Baby’s as it has turned one of his favorite past times into a nightmarish ordeal.  Poor C.  If I leave the boys alone in the tub long enough to grab p.j.s and a diaper there will be an incident.  C will inevitably yell, “Mom!  Giant Baby pooped a poop snake in the bath tub!” or “Mom!  Giant Baby pooped some marbles!”  I never want to hear those words come out of C’s mouth again.  God help me find a solution to this problem!  When I got pregnant with G.B. I never thought that I would have to clean poop out of a bath tub so many times!  I went through a bottle of bleach in a span of 2 weeks!  

Last week G.B. pooped in the tub a total of 3 nights in a row!  That is just unacceptable!  One night my husband changed a poopy diaper of G.B.’s right before bath time and he still pooped in the tub!  There has got to be a solution to this horrifying problem.  Giant Baby doesn’t seem to mind it though.  He seems almost pleased with himself, like it’s some sort of accomplishment to successfully poop in the bathtub that many times.  After an incident I have been known to ask an obvious question like:  “G.B., did you poop in the tub?”  His standard response is “Da.”  G.B. thinks he is Russian; “da” means “yes or yeah”. 

G.B. is fascinated with all things “gross” or “dirty”.  Maybe that’s why he poops in the tub.  Unfortunately the nastiness doesn’t end there.  Oh no, Giant Baby takes it a step farther.  I wonder if he will always be an habitual line crosser” like his mom.  I hope not.  Last weekend G.B. touched his poop!  I almost cried when I saw him pick it up.  Before I could even react to the situation he already had it smeared behind his freshly washed ear and in his neck creases.  I was mortified.  Not only did I have to rescue C from the contaminated water but I had to drain it and re-wash G.B.  I know Giant Baby loves to take baths, he always gets upset when they end, but this is no way to prolong them.  After scrubbing the poop off of G.B. I took him out of the tub and dressed him.  Unfortunately he STILL smelled like poop!  So I used almost half of a box of wet wipes in an attempt to rid him of the stench; it didn’t work!  Finally I found a solution!  Anointing oil!  Hallelujah, thank the Lord.  I rubbed so much anointing oil on Giant Baby’s face and neck he looked like a greased pig.  But at least he didn’t smell like one! 

This past Wednesday I had to take C to the doctor because he got croup.  While we were waiting for Dr. R. to write out a prescription C told him, “My baby brother likes to poop in the bath AND bite me on the butt.”  Dr. R. stopped writing and smiled up at me as if to say, “Interesting…”.  The way C so candidly told his doctor about his brother’s unflattering habits made me giggle.  Wow, thank you C for reminding me of the humor in every situation.  While the poop problem is disgusting and the images tend to “haunt me” it is really not the end of the world.  Some day this little problem of ours will eventually go away.  Until then, I will laugh at our bout of “bad luck” and remember that I am blessed to have 2 healthy, precious, baby boys.

Create in Him a New Heart, O God

A Heart for Mommy From Blakey 2/11

“I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh,” Ezekiel 36:26. 

God!  Create in my son a NEW HEART, a WHOLE and HEALTHY heart!  God, I believe that you have given Blake a new heart.  A strong heart!  I claim it now!  I believe it!  My faith HAS HEALED Blake!  He is my son and I am claiming healing for him just as I claimed your healing for Connor.  You created in Connor a new lung.  You gave him life when there was only death and sickness.  You gave him health.  I believe that you have done the same for Blake!  I REFUSE to accept less!  We will see with our eyes tomorrow at the doctor what we know in our hearts to be true!  What I see in my faith, in my spirit, I will see with my eyes! 

Lord you are FAITHFUL!  You are TRUE!  You uphold ALL of your promises!  You promised life and health and that is ALL that I accept for my children, for my husband, for our family, for myself!  Sickness, imperfections, defects, diseases and death have NO place here!!  Where you are, there can be no darkness Lord!  You live in Blake!  You are Jehovah Rapha.  You are the great physician!  You have healed Blake’s heart.  He is made whole in you.  He will tell of your mighty works.  He will praise you alone, O Lord, as will Connor, Nick, and I!  Blake will tell his generation what you have done for him.  To you be all the glory!  You reign!  Glory in the highest you reign!  Every knee shall bow and every tongue proclaim that Jesus reigns!

You are mighty to save Lord.  Ventricular septal defects have NO PLACE in my son’s heart!  You have saved Blake!  We accept his healing!  I do not accept anything but the best for him!  Though the defect is not hindering his growth or causing any other problems it is not of God!  I do not accept anything for my son that is not of God.  Lord God you are exalted forever.  Your name is above all names.  Your name is POWER!  I proclaim this power to be used to heal my son’s heart and I BELIEVE that he is HEALED! 

Thank you God for a manifestation of the healing I believed for!  Thank you that you created in my son a NEW heart!  I LOVE YOU GOD!!!!