Monday, July 9, 2012

Final visit to Cleveland Clinic

Dr. Erenberg, her cardiologist, back when Cayla was a day old.  So sweet... both of them.
I started writing this last Friday, July 6th.

Good morning!  I know I've had questions that will never be answered.  I just wanted to talk it out a bit with Dr. Erenberg and we did.  So Samuel, my mother-in-law, nephew Tyler, niece Sheylyn and I all headed out to Cleveland yesterday.  Samuel's a great driver and we arrived safe and sound.  :o) You know, this reminds me... We had been having doctor appointments since Cayla came home and only have one car.  I had asked Carol Rettger if she would be willing to take me out to Cleveland Clinic for some appts. a couple of weeks ago.  Well, John had been sick and she didn't want to pass anything on, so they told us we could take their Durango that they only use in the winter for its 4 wheel drive.  Then they said we could keep it and use it as long as we needed until the snow falls again.  :o)  What a blessing this vehicle has been to us!  Yes, it truly is a gas guzzler, :o} but it's a strong safe vehicle and very easy to drive.  We are still using it and I just want to say thank you to them for doing this for us.  God is good!

Back to yesterday.  Mom and I left the three in the waiting room and the secretary took us back to Dr. Erenberg's office.  There's a lot of things I know, but sometimes you don't always put things together to make sense.  This was what this conversation did for me.  We know Cayla had many "known" problems.  We knew she had heart defects.  We knew she had fused ribs.  We knew she had scoliosis.  We knew she had an anus in the wrong place.  We knew she had a club foot.  We knew she didn't have a thymus gland. We knew she had a weakened immune system.  We knew she would be on calcium supplements the rest of her life.  We knew all this and more.  She wasn't just facing the Hypo-plastic left heart syndrome.  She was facing a lot of abnormalities from the DiGeorge syndrome. 

When Cayla was 5 days old, she had what they've been calling an "episode".   Something went off in her, completely unprovoked, that sent her vital signs and stats all over the place to the point that they had to put a breathing tube in among other things.  She righted herself for the most part before they could, but still, for some reason she had become unstable.  Two weeks later, this happened again, where her stats and vital signs were all over the place, although this time was a week after surgery when she had dislodged her central and arterial IV's.  Thus we had "episode" 2.  She settled right down and looked good later that morning, but had had quite the night.  Then, 2 weeks later, when we had been home for almost a week, this all happened again.  She had her 3rd "episode" that sent us back to the hospital.  For some unknown reason, started spitting up, became dehydrated, couldn't breathe right, turned white, her white blood cell count was really high and so on. When they tested her for infections or tried to find out what was going on, everything came back negative.  There was no infection, and they have no idea what caused all of what happened that week.

The known issues is what I was focusing on.  None of them seemed to be life-threatening except her heart, but that was doing really well.  These were all treatable and so we were working to treat them.  It was the unknowns, that all her heart doctors were always concerned about.  I remember that a couple of them wanted to keep her in intensive care a little longer to observe her and see if they could figure this out.  Obviously we couldn't live there indefinitely, but there were still so many questions as to what was going on inside Cayla to cause these episodes.  Because of this, Dr. Erenberg wanted to bring in more doctors in different departments to see if any thing else could be found.  So we were working through appts to see doctors in genetics, neurology, immunology, endocrinology, and probably more "ologies" but you get the point.  They were trying find answers to the unknowns. 

When I started talking to Dr. Erenberg yesterday, I started listing all the things I felt I didn't do right or catch and said that I've been feeling very responsible for Cayla's death.  I've been struggling with this off and on these last 2 weeks.  I'm not going to go into them here because I want to forget them... I asked her about some of the things that happened at the ER here in Ashtabula that bothered me that could've hindered Cayla's chances of survival.  Even her immunizations the day before... they could've played a big part in all this.  I just wanted all my thoughts out there.  I know most can't be answered, but I said them anyways.

What she told me is exactly what I needed to hear.  I hadn't put this all together in my mind.  She said that Cayla had many known issues.  We naturally focus on those.  But we cannot forget that she also had many unknown issues.  There has always been some underlying problem that couldn't be isolated.  The night before she died, she seemed the picture of health, but even though she may have looked normal, she really wasn't. Just adding the unknowns into my thinking, made me realize that there was a whole lot more going on than just what we did or the ER doctors did.  In my mind, this thought has taken a huge weight off my shoulders.  I "know" I can't blame myself or the ER events, or immunizations, but it's natural to go down that path and stay there awhile.  I know God is in control like Lowell said she still could have died had we got to CC in time or she could have lived if we spent the rest of the day at the ER in Ashtabula.  These weren't defining moments.  God was in control. 

This simple, but obvious part of Cayla's life, the unknowns, really did impact everything else that went wrong with her that day and during previous episodes.  This one had too many factors.  Everything combined, whatever that may be, was too much for her little half of a heart.  If all she had was the heart problem, she'd had a great chance of survival not having to have the Norwood.  If she just had the other isolated issues, we probably could have dealt with each surgery and survived.  But having to deal with all of it was too much and this would have happened maybe at any given set of circumstances in the future.  It is what it is.  Cayla is in heaven with no more sorrow, pain, or crying and God has personally wiped away her tears for good.  I know I'll see her again, because I've given my life to God, and He has covered my sins and paid for them with His blood He shed on the cross.  I believe He rose again, so the verse in Romans 10:9... "That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved.", says it all.  I've been saved from eternity in hell and the Bible says I'll be in heaven.  Like Pastor Emery said at her funeral, we know where she is, but do you know for sure if you're going to heaven when it's your time to die?  Please don't put it off.  We don't know when our time is.

So if God is in control, and He allowed Cayla to die, and she had such a loving family, how can I still trust Him?  Very easily.  He's a perfect and holy God.  What more needs to be said?  Who am I to argue or ever be angry at God?  You'd find me robbing a bank before you'd ever find me angry at God.  I'll ask why to see what I can learn and grow through this trial and trust Him, but I'll still keep on missing her. I can also rest knowing He takes things that are bad and will use them for my good.  If we understood the mind of God, He wouldn't be God.  His ways aren't ours and neither are His thoughts our thoughts. It's all part of that beautiful trust and faith like a child.  They don't understand everytime something bad happens, they just trust you, the adult in their life, just like we need to trust God in times like this with childlike faith. 

It's now Monday night, July 9th.

I have been asked this in so many different ways.  It boils down to the question many have asked me, why God allows bad things to happen to good people.  We live in a world that has been engrossed with sin.  We are all sinners.  We're born that way, so there really is no such thing as a "good" person.  I'm just as prone to problems and heartache as the next person.  God can take these "bad" circumstances and use them in our lives to mold us and make us more like Him.  Bad things happen to everyone.  No one deserves a pain free life.  Just because I've given my life to Jesus Christ, doesn't mean life can only be full of good things now. 

It's just as fair for Cayla's life story to be part of our family's story as anyone else's.  Did I want Cayla to die?  No, I want her here in my arms. I'll miss her, but whether through her life or her death, I want God to be glorified.  I want everyone reading this to think about the God that created them and realize their need to believe what the Bible says He did for us on the cross.  So, maybe for Cayla's sake, you'll do it.  Give God a chance.  Stop putting off something that you've thought about for years.  Just do it.  ***You will ~never~ regret it!***  Take the step of faith to believe on Him today.  You can have the same peace I've had through all of this.  Please email me with any more questions.  God is working in all our lives, and I'm more than happy to keep talking to any one else that has questions.

"And that he died for all, that they which live should not henceforth live unto themselves,
but unto him which died for them, and rose again.
Therefore if any man be in Christ, he is a new creature: old things are passed away;
behold, all things are become new."
2 Corinthians 5:15, 17

It's time to find a new life in Christ if you haven't already.  I have, and now know I will see our precious Cayla Joy again in heaven because of God's promises!

Cayla Joy at 7 weeks old in her beautiful cocoon made by Grandma Pat.  Miss my little peanut.

I'll finish the rest of Thursday's final visit to Cleveland Clinic in the next blog.  Too much on my heart right now.  


  1. Thank you for sharing your heart with all of us. You are such a blessing! It will be amazing in Heaven one day to realize the far-reaching impact Cayla's life had on numerous people because of the faithfulness of her sweet mama! Love to all....

  2. Oh, Linda, What a blessing you are!!! I am so thankful that you are taking the time to share your thoughts and heart with us. Each of us have trials in life and the Lord is using you to encourage many!! We continue to pray for you as does our church family. I pray that many will be challenged by your testimony to keep praising God!

  3. I loved reading this. Thank you for sharing your intimate struggles.

    1. Andrea, sorry about your grandpa. I just read your post. Losing someone at any age is not easy. Just prayed for you and your family. It's been good being able to touch base with you and your parents again through facebook and the blog

  4. So glad I have an avenue like this write on! Thanks all of you for your love and encouragement. God is good!