Monday, July 30, 2012

Dr. El Gammal

Last Friday I called and got ahold of Dr. El Gammal, Cayla's pediatrician, in the morning and then went to see her at 12:30pm.  I have to say again that just driving down Route 20 and passing Lake Avenue where the hospital is, makes me remember that Friday and want to stay away from anywhere near there.  I would say the feeling is lessening, but still there.  I just knew that I needed to go see her.  She was there and saw Cayla the last 2 days of her life.  She was with her during her final 4 hours.  I wanted to talk to her and talk we did for about 45 minutes.  She gave up her lunch break for me.

I've been hung up on these immunizations and beating myself up over them, Lowell too.  So after a warm greeting, one of the first questions I asked was about the immunizations.  What effect did they have on her death?  Well, being the completely, medically, uneducated person that I am, I was surprised by her answer.  They had nothing to do with her death at all.  So she explained since I guess the look on my face was still pretty doubtful.  The vaccines Cayla had were all non-living pieces of a specific virus.  If they had played a part in her infection, the area where the needle was inserted would be showing signs of redness and a reaction.  She said you don't get the shot in your left arm and break out with an infection in your right arm.  Makes sense.  Then she said that the first signs of infection from the vaccine are redness at the injection site and a fever.  Cayla had perfectly normal skin where her shot was given and had no fever.  She also said that if there was a reaction, it wouldn't just be an infection randomly in her body such as her bottom, it would be the disease that was actually being immunized.  The point being that the infection in her bottom had been there brewing under the surface just waiting to show its ugly self and did so all by itself without any help from the immunizations.  So, ok.  I guess that clears that up...

Now then my mind jumps to her bottom.  Now I'm going back to where I started with all this.  That day as we were waiting in the ER, all I could see in my mind was her bottom from the morning.  Purple, red, swollen, and what used to be her scabs over the rash were now open, white and pussy around the edges.  Sorry for the details...  My first thought then was why didn't we put her on antibiotics to clear this up.  Dr. Magnuson had just seen her the previous Thursday and said there was bacteria building up in her bottom and she was most likely going to have to have a colostomy bag put in until surgery.  Then he said to put this prescription cream on, see how she does and come back in 2 weeks to see about the colostomy bag.  I don't know.  I do know that Lowell asked if the cream he was giving us was an antibiotic cream and when we got it, it wasn't.  I'm not sure what Dr. Magnuson was thinking.  He did say that she can't be on antibiotics for 6 months, thus the bag.  We thought though that he could have given her some kind of antibiotic to clear it up before the bag, but for some reason, we didn't pursue that thought.  Thus the guilt of why we didn't follow through.  He had also given us rods to stretch or dilate her bottom to relieve some of the pressure building up.  We were supposed to do it once every day.  It took 2 people.  We were doing it at night.  Wednesday night when we did it, a lot of pressure was released causing it to spray everywhere and make a big mess.  Well, that next night, Thursday, we'd forgot to do it and remembered later when she was all settled in and thought that we'd get it tomorrow.  It was just for the purpose of stretching, so missing one night wouldn't hurt.  Well, you know where the guilt is now.  What if we'd gone back and dilated her bottom?  Would pressure have been relieved enough to put off the infection building from it?  I would say yes, but even if I could 100% pinpoint the exact reason for her death and how it could easily have been prevented, would it change the course of events?  Not if it was her time to die.  I've not wanted to tell anyone about not dilating her bottom the night before she died.  That would be admitting fault for what could be the cause of her death.  I don't want that on my shoulders.  But, it's there.  So many What if's.  I want the blame to be on someone else, but in our minds, it very well could have been that simple.  I know blame is not an issue at this point and we need to move past this and not worry about what actually caused her death because we will never really know with all that was going on with her.  Let me just say it's harder than you may think.  I know that we can't carry this blame.  I know there were a bunch of other factors with her little body.  I know we have to give the whole thing to God.  I know a lot of things.  Just tell the rest of me to catch on... 

The whole destructive path of "What ifs" is something I've known about since day one after she died.  I've managed to work through this off and on these last 5 weeks.  It still rears its ugly head at times.  If I find myself starting to cry and lose it, I have been able to stop and ask God for victory over my thoughts.  He's been faithful, but the thoughts will come back periodically, especially after last Friday's talk.  BUT, I'm doing better with it.  I know deep down if it wouldn't have been then, it easily could have been at any point down the road.  She was apparently a lot more fragile than we realized.  I would say Lowell is having a harder time than I am with the What if's.  So pray for him through this.

Well, these are thoughts that came after Dr. El Gammal said it wasn't the immunizations.  I didn't voice all of this to her, because before a few minutes ago, I was planning on not ever telling anyone about not dilating her bottom the night before.  I'm not sure why I did put it out here for the world to see.  I don't know that it even makes me feel any better "confessing".  I just need to write my thoughts, so I guess I needed to just write it out more than I needed to hide it. 

She and I talked about how we've been in the last 5 weeks.  She did go for her 3 week vacation back to her family in Egypt and said the first week was hard to relax. I told her we'd prayed for her knowing it was the start of her vacation.  I hope she knows how much I appreciate her and all she did that day.  She let me talk to her about how God has helped my family through these last weeks.  How God has been everything the Bible says He is.  How I know I'll see Cayla someday because I believe the Bible and Jesus's death on the cross for my sins.  How I know because of Him, I'll see her again, not because I'm good or anything.  I don't hope I will see Cayla someday.  I KNOW I will see Cayla some day because of Jesus Christ.  She listened to me share about how God has been our strength.  She told me she was a different religion and I understand that.  When something is as real as Jesus is, you just want everyone else to know and understand that.

She also asked me if I'd noticed Cayla's color after she'd died.  I didn't particularly, but I do remember thinking she looked better than I thought she would.  She said that during those 4 hours, her skin was many colors from yellow to blue to purple and mottled on top of it.  Once she had died, she said all those around the table noticed her skin turn back to pink.  They hadn't seen that before, and they all stood there quite amazed at what happened.  I don't know why God did that, but I do remember thinking she didn't look too bad.  Just an interesting side note. 

She was a very special little girl. I've talked to God about why He allowed her to die.  It brings me comfort to know that many have seen a real, living, and faithful God through this experience in our lives.  I've thought that God knew that maybe her impact could be greater after only 2 months while so many were still closely following her precious life story through this blog. When I posted on the day she died, there were over 2,000 hits in less than 24 hours.  If that's all part of His plan, I accept it.  It's not my choice, but I accept it.  These kind of thoughts are what make Cayla's short life worth living.   I've talked to God about giving us another one...  He can do whatever He thinks is best for us.  I'm torn.  I want another baby in my arms to raise so, so badly, but I also know that I'm older and is it really best right now?  It's up to Him.  He had to specifically open my womb after 16 years of being completely closed for Cayla to be born, and He can do it again if He thinks it best.  I truly am ok either way.  The prayer that never fails... praying that God's will be done.

Well, I have to close this out.  Lowell and Samuel want to go play Disc Golf at 8:10pm so off we go.  I am needing to practice my song for Ralph Ball's funeral Wed. morning and make a salad and more for it too and I have a Concerts of Prayer meeting at 7am at Steak and Shake tomorrow morning with grocery shopping afterwards and I work half a day tomorrow and then wanted to go watch Olympics at my inlaws tomorrow night.  We'll see what gets done.   (Lovely run on sentence...)  Bye for now...

Staying busy

I started writing this a week ago after our yard sale on July 21st but never published it...

God is more precious to me than ever.  God's Word, the Bible, is more precious to me than ever.  Samuel is more precious to me than ever.  I know it's only been 4 short weeks since Cayla died.  I feel like I'm changing.  I just wonder if I'll ever feel like I did before.  In some ways I guess I'll never be the same, but in a good way.  The closer to God I am, the stronger I am.  I still find tears popping up when I least expect them, but that's just how it's going to be.  I just feel things deeper than before.  I think about things more... could just be because I'm more tired than before.  :o)  Ok, so it's more than that.  I look and hear children around me being yelled at and parents so frustrated, I just want to tell them to step back and get the big picture.  Take time to enjoy the children you have while you have them and they're still close enough to kiss and hug.  Please keep doing this.  I wish I could with Cayla and I do all the time with Samuel. Just don't take them for granted.

I want to go see Dr. El Gammal.  She was Cayla's pediatrician.  That Friday was the last day before her 3 week vacation started.  What a way to start it.  She stayed by Cayla's side the entire time in the ER.  She was so focused on Cayla.  Another Dr. came and told us Cayla had died.  She came in later somewhat hesitantly, and I just went to her and hugged her for all she was worth, thanking her for all she did to try and help Cayla that day.  Pastor Emery said a little bit later when they left, that there were some doctors crying out in the ER.  I just feel like there's a loose end here.  I want to see her and talk to her.  I want to ask her if this was a reaction to her immunizations.  I don't really know what or how she's feeling or if she still thinks about that day, but I just want to talk about it.  I went in to her appointment the day before acting confident about Cayla's care but really not sure underneath it all.  Bottom line is that once again, God could have prevented her death, but chose not to.  I just feel strongly that I need to close this door that's still open and go talk to her.  I kind of dread going anywhere near the hospital again and her office is in the hospital.  I think I'll call Monday to see when I could come in and just talk to her.  It may be hard in different ways for both of us. 

I just want to put out a very special thank you to Kim Hunsicker. She has spent 4 out of the last 6 days at my house for the sole purpose of our yard sale. On Monday when she came, besides helping organize and price stuff, she managed to wash every dirty dish in my house. There were few clean ones still in the drawers and shelves when she started. This is huge because I know she hates doing dishes as much as I do, and I don't have a dishwasher... She came Thursday and wouldn't leave until we had everything priced and ready to go. She came Friday at 7am to help set up and stayed all day! She even brought lunch that day and fixed chili cheese hot dogs for us all. She came this morning at 8am and helped set up and stayed all the way until everything was put away and cleaned up. She not only helped with the yard sale itself, but just as importantly or maybe even more so, she talked, laughed, cried, hugged, held, listened, and was an incredible friend to me and all of us today and this whole week. I am blessed. Thank you Kim for your wonderful friendship! Something she said today has stuck with me about her remembering some extremely painful times in her life and what a difference people made who reached out to her during those times. She told herself and God that she would be that person to others going through hard times and that is what motivates her. Showing the love of God to others. So through her pain, God has been able to use her greatly in the many lives she's touched. She has definitely shown the love of God to me and all of us this week. Thank you Kim. Love you. ♥  

Our yard sale was a success from a yard-salers viewpoint, but I'm glad it's over.  It was a great distraction the whole week.  I need distractions.  I need to stay busy.  If I'm not having to do something where someone is expecting me, I don't get much done. Busy is good right now... Some yard sale pictures.  Kim and I both got a good bit of sun.

Kim and I

Kim, Gary and Samuel discussing...?

Lowell and Samuel riding scooters during the yard sale's slow times. :o)

Bernadette and I.  She set up a couple of tables of stuff too.

Kim was left alone for too long without any supervision.  She organized the Precious Moments by year.  :o)  The ones we still have are all the dated ones such as Baby's 1st Christmas 1994.  We have some dated from the 80's.  It's nice to see so many gone with just these few left over. 

Now we're back to Sunday night July 29th.  Actually it's July 30th since it's now almost 1am.

Ok, moving on from the yard sale.  I downloaded some pictures of Cayla's plot at the cemetery.  I took this first picture of the clouds the day after her funeral.  We were outside that evening at my in-laws house just enjoying the beauty of God's creation.  The kids were out back and I just laid down in the grass.  As I looked up at the beautiful sky, I thought about Cayla in heaven.  She's not back in that hole in the ground.  She's with God.  So I pulled the camera out of my pocket and took this to remind me.  There's also some of her special little place at the cemetery.

Since I'm going through pictures I've finally downloaded, I'll add some of my brother Jim and his family.  They came up from Berryville, VA for the funeral.

Jim and Marla at Lakeshore Park the day after the funeral.
Jim, Marla, Meg, Chloe, James, Micah, Clara, Julia and Matthew
(click on pictures to enlarge them)

At Lakeshore Park

Matthew  :o)

Meg, Chloe and Clara with Sheylyn, our other niece at Grandpa and Grandma's house.

Chloe, Julia and Clara

Jim, Samuel, James and Micah the morning they left for home.

I have so much more to write, but it's late.  I did get to see Dr. El Gammal on Friday, but will write about it later.  It was good for me to go and hear what she had to say.   Oh, and I also have Cayla's service to put on too.  I haven't looked at it 2 weeks.  Now David's almost getting the rest done.  I need to look into it this week.   Stay tuned... it shouldn't be long now.  :o)

I'm doing ok.  Still having tears hit me when I least expect it.  Still missing our precious Cayla Joy.  Jesus is giving peace.  Jesus is sustaining us.   He's everything.  Everything we need.  Everything He says He is in the Bible.  The Bible is true from beginning to end.  If you have never experienced God's salvation, you're missing out.  The 3 of us have all personally experienced Jesus Christ alive and working in our lives through this time with and without Cayla.  There is no denying it.  Once you've experienced its reality, you want everyone else to as well.

Well, till next time.  Maybe tomorrow.  We'll see.  :o)  Thanks again for the prayers so many are still praying.  We need them.  Thanks.

Tuesday, July 17, 2012


"Blessed be the God and Father of our Lord Jesus Christ,
which according to his abundant mercy hath begotten us again unto a lively hope
by the resurrection of Jesus Christ from the dead,
To an inheritance incorruptible, and undefiled,
and that fadeth not away, reserved in heaven for you,
Who are kept by the power of God through faith unto salvation
ready to be revealed in the last time.

Wherein ye greatly rejoice, though now for a season, if need be,
ye are in heaviness through manifold temptations:
That the trial of your faith, being much more precious than of gold that perisheth,
though it be tried with fire,
might be found unto praise and honour and glory at the appearing of Jesus Christ:
Whom having not seen, ye love; in whom, though now ye see him not,
yet believing, ye rejoice with joy unspeakable and full of glory:
Receiving the end of your faith, even the salvation of your souls."
I Peter 1:5-9

My perspective has to change to God's perspective to be able to rejoice
with joy unspeakable.  Love these verses. 
My life needs to be all about Jesus Christ.  He's done so much for me!

My sister-in-law Lisa sent this picture to us that she took when they visited.
Cayla was about 6 weeks old.  Love that precious little face.  She's almost smiling here.  :o)
 I am so convinced that everything we're going through right now comes down to perspective.  I would have to say that I have let myself become depressed these last 3-4 days.  I know this is normal to happen with situations like this, but I'm trying to figure out what has led me to this point.  When I'm still or quiet, I rethink everything that happened.  I relive it all.  I question it all.  I wonder, Why didn't we... Why did we... Why didn't they... Why did they...  I go through everything the doctors had told us.  I go through everything I observed and thought.  I try to picture myself figuring it all out before she died and preventing it.  Then I get depressed thinking this could have easily been prevented.  I still cry many tears for the baby girl that is no longer in my arms, but that is different from the depression I'm talking about.  Tears will be there for years to come and are healing and ok, but this depression from the wrong perspective should not be continuing on and on. So, I'm facing it and talking it out.

I have convinced myself that the catalyst in all this was the immunizations.  When Dr. Lorber asked me a week ago what the cause of death was, I said the death certificate said it was her heart.  Her heart was doing great, so what was it that caused her heart to quit?  I told him that there were so many factors, we really don't know exactly and that is so very true.  But I've been thinking about it all so much this last week that this is what I've concluded.  Not having any medical background, my thoughts can't help but blame the immunizations since she was doing ok, not great, but ok before she had them and then in a little over 24 hours she was gone.  We were encouraged to get the immunizations because she was slated for having a somewhat weaker immune system with most of her thymus gland missing.  Getting any sickness like that would have done her in. So, you think of all babies, she really needed her immunizations.  There was apparently enough going on in her body at the time to allow these to cause an infection in the rash on her bottom from her bottom issues, which gave the infection a place to get into her blood stream and then it was just a matter of time for her heart.  I don't know.  I could be completely wrong. This is just my theory, and I'm not medically minded and don't know how the body works.  I am writing all this because it's where my mind goes all the time these days.  I've been told that her heart, even with it's issues, should have tolerated the shots.  Then when you add the DiGeorge issues, you think that she definitely needs the shots.  So, what else was there to do?  That's what made sense at the time and that's what we did. 

Looking back is painful.  Who would have known?  Really though, we don't know what exactly happened.  This is all how I've put it together.  Nothing scientific.  Nothing sure.  Nothing proven.  SO, with all these uncertainties, I really don't know what caused her heart to quit.  My mind likes to think it's all figured out, but deep down I realize I really don't know exactly.  I can make my uneducated guesses, but look where it's getting me...  Down the road of depression.  This is a perspective that leaves God out, so of course it's going to lead to depression.

I must keep God's perspective.  It's hard when human emotions get in the way.  I find myself going down these paths I've mentioned with my thoughts and am really trying to stop and realize the real truth.  Nothing in the 2 previous paragraphs is sure or proven, yet I dwell on that, thus the depression.  I've realized that I must dwell on what IS sure and proven, the Lord Jesus Christ, and the depressing thoughts flee.  God's perspective is that He can use something painful and turn it into something good.  I know He could have prevented those immunizations from being given, not that there's any guarantee that that is all it was.  But whatever it is that truly caused her death, God could have prevented it if it was His will because He is God, and He chose not to.  He is a perfect God.  Perfect.  That means He sees a bigger picture with eternity in mind.  I must look at this through God's eyes.  If I don't, I will continue being depressed.  I write this to organize it all in my mind and solidify my decision to dwell on the Bible, God's Word, instead of what will never change in past circumstances.  Plus, He has used this for good.  If even one person has believed that Jesus died on the cross for them, rose again, and lives today, because of the life of a very precious little girl named Cayla Joy Sowry, then yes, tremendous eternal good has come of it all!

I don't know how all her future surgeries and other corrective procedures would have turned out with the DiGeorge Syndrome and unknowns going on in her body.  Future surgeries could have become full of complications and life-threatening issues every time she had one.   She was facing a good number of them.  We would have fought through every surgery with her and been there in every way possible, but honestly, I feel glad from Cayla's perspective that God took her to heaven.  She has no heart problems or any of the other problems.  She is perfect now.  It's ALL about perspective.  God's, Cayla's and mine.  I think I'll dwell on the 1st two.  Cayla would have had no choice but to have many surgeries and obstacles in her life.  Many people do.  She would have fought through them with us right by her side.  I'm focusing now on all that she won't have to go through.  She's been spared a lot of grief, pain, tears, sorrow and crying.  Cayla's perspective is that she wouldn't trade where she's at for anything!  :o)  See, when I can turn my thoughts to the Lord and heaven, I can smile.  This is turning out to be a great pep talk for myself.  I should have wrote this out earlier...

ONLY God can take my depressing thoughts and turn them into perfect peace.  I just pray that I can stay focused on Him.  I haven't been sleeping well because if I lay in bed, my mind wanders down my paths of perspective, and I go to depressing, dark places in my mind.  So I stay up as long as possible until I'm falling asleep walking up the stairs so when my head hits the pillow, I'm out with no chance to think.  If I don't fall right asleep I get my book light out and read to focus on something else until the book falls out of my hands.  I wake up at 3 or 4am to go to the bathroom and can't go back to sleep and it all starts over again.  So, out comes the book again.  Problem is, once I've slept a couple of hours, I'm not ready to go back to sleep again and end up reading till Lowell gets up at 7.  I am really asking God to bind Satan from my mind and these depressing, destructive thoughts.  I want to focus on Him.  I need to read my Bible in the night like this, but I don't.  I just read a story to get lost in someone else's life and not think about mine.  I think because it's harder for me to focus longer periods of time on Scripture in the middle of the night, that I turn to light, easy reading of Christian fiction.  God is just going to have to help me work through this and figure it out because I need more sleep and I'm disturbing Lowell's sleep.  I know He will.  He's ready and waiting and holding and carrying me right now whether I realize it or not. :o)  He's SO faithful!  He will get us through this one day at a time.

Wanted to say that I got a really nice call from my OB/GYN, Dr. Rajabi last week.  He's a specialist and not my regular OB/GYN and we only had him because of Cayla's heart.  So, I won't have a reason to go back to him and all the wonderful nurses in his office at Hillcrest.  I had called a week or so ago and talked to Teresa his nurse that worked with us and told her what happened with Cayla and to let Dr. Rajabi know.  He delivered our precious Cayla Joy to us way back on April 24th.  Seems like eons ago.  I gave her my blog to read and pass on.  Dr. Rajabi said how sorry he was for our loss and that he'd read the whole blog and was very touched by what has been written about Cayla's journey.  Thank you so, so much Dr. Rajabi for all you've done for us and Cayla.  God is real, alive and working on changing many hearts because of her little life.  I wish he could be my regular OB, but oh well.  :o)  Maybe we'll still get to talk again.  It was wonderful to hear from him.  God has blessed us with great doctors!
Dr. Rajabi came by later that week that Cayla was born,
 to check on us and see how we all were doing.   
 I did work last Wednesday at Basic Ingredients which was good.  Love the environment... Christian music playing, Christian boss, starting the day with prayer and devotions, moving around doing a variety of enjoyable, fairly easy work.  I can't argue.  It was hard greeting people at the door and register though.  I think I would have just liked to hide in the kitchen and sort the bulk food since my heart wasn't into talking to people and being all cheery.  I cried as I pulled up in the parking lot and started my day a little weepy, but moved on fairly quickly.  Usually the people part and talking and greeting people is my favorite part, but it was a struggle last week.  I hope it will be better tomorrow afternoon and Wednesday.  I'm sure it will get easier and better the more I feel comfortable with how things are done too.  But, thanking God for this opportunity. 

We are busily preparing for a yard sale this Friday and Saturday.  I would like to advertise it in the Star Beacon, but that alone is $25!!  Crazy.  We'll see. We live on a busy street, Route 20 in Saybrook, 4 houses west of Kelly's Gardens, right in front of Bible Baptist Church... (hint, hint).  We should get plenty of customers.  But this is keeping me out of trouble and giving me company during the day.  Had my mother-in-law, niece, Kim Hunsicker and Bernadette Nichols over today helping and we sorted and priced everything left over from the store.  Not much, but it needs to go.  We even had time to pull out everything thrown in the one side of our storage closet and clean that up so we can price that stuff Thursday.  God's good.  It was a good day with good fellowship.  Samuel did laundry for me today while we were sorting.  Love my young man!  He's also sorting his stuff and digging up boxes of transformers, planes, and many blasts from his past.  :o)  Yard sales are a pain, but good a distraction for us right now.

Tomorrow is our 19th anniversary.  Can't believe it's been that long.  Lowell is my best friend.  The one who knows me the best and loves me anyways.  With so much uncertainty today, I thank the Lord for keeping our marriage strong and together for these years.  It's not perfect, but God's allowed us to grow closer through the tough times over the years instead of farther apart.  I am blessed.  Marriage is til death do us part and Lord willing that's what it will take to separate us.  Lowell's birthday is the day after.  Looking forward to a trip to Erie, PA tomorrow night for dinner and some shopping.  Very thankful for my husband and family God's given us. 

Before I close I have to admit how messed up I've been these past few days.  This depression that I allow in at times when I'm focused on the wrong things, has affected my ability to function properly... Just ask Lowell... It started back with us still having one last merchant account to still close out from the Sonshine Corner.  They wouldn't let us make payments, it was all or nothing, $700.   So it kept being put off since we weren't able to set aside that much at one time with other bills.  Whatever.  :o)  Well, Lowell's cousin, Jodi, the funeral director had been gracious with us in honor of Cayla, on not charging us for her services, just what money was spent on items.  We had set aside the money from what we'd been given to pay for this.  When we got the bill from her in the mail, it said we owed nothing because it had anonymously been paid for!  Isn't that amazing?!  God is taking care of us.  (Side note... because Cayla was under 3 years old, they waived the $200 digging and prep fee at the cemetery and because it was in the township my in-laws live in, they took another $100 off, so the cemetery costs were only $150, which my in-laws insisted in paying for in honor of their little granddaughter.  We are blessed!)  So, we now had money set aside that we didn't need to use for the funeral and realized we could pay this store bill off!  Yay!  So Lowell did.  We had been keeping our account open until this was settled.  I thought for some reason last week that Lowell had already closed the Sonshine Corner bank account months ago and had combined it all into our personal account.  He asked me last Friday to go and close the Sonshine Corner account.  All I heard was "close the account".  So, I went to the bank Friday and closed out the wrong account...  Cancelled our debit cards and all.  Although I think I cancelled my card from the personal account and his from the store account.  Such a crazy mess.  I was so proud that I took care of this for Lowell until that evening when I told him how much cash I'd got back from closing the account, and he said, "There was only $10 in that account!"  Oops.  :o}  Well, he was going to close that account too eventually since we've restarted with a different bank, but he still had things being taken out of this account which sent him scrambling a bit to try to change accounts over. I'm not focused... yes, it's causing a few issues in our lives.  This could have been a lot worse, but we were actually laughing about it that night.  He's been very patient with me these days... I love my husband.  I'm still trying to get focused though.  I'm going in tomorrow morning to try and fix this mess. Now the real test of whether I'm focused or not...  :o)

Well, sometime soon, I'll be posting Cayla's memorial service.  Still working out some kinks.  David Brown, Elise's dad, has so wonderfully said he would do this for us.  So maybe this week or next since this is a very busy week, I'll be able to post it and get it working in the blog.  It's hard to hear some parts so I'd like to take the time to type it out too.  We'll see.  I did also find the setting that's not allowed most people to post comments on this blog and changed it. So now I believe anyone can post comments.  We'll see if it works.

Thanks again so, so much for your continued prayers.  We love our Lord, our family and friends for supporting us and holding us up during this difficult time in our lives!

Tuesday, July 10, 2012

Last visit to Cleveland Clinic part 2

I didn't really say all I wanted to say about last Thursday's visit to Cleveland Clinic.  The time my mother-in-law and I spent talking to Dr. Erenberg was so good.  I think we all were crying at one point or another.  I cried when I was telling her all the things I that make me feel guilty and telling about that Friday she died.  Dr. Erneberg cried or even just teared up, while I talked about where Cayla is in heaven and how God has wiped away her tears and that I know I will see her again.  I know my mother-in-law cried throughout.  It was good healing tears and sharing.  I hope Dr. Erenberg has seen a glimpse of Jesus through our conversation.  I love talking about Jesus and how He's met our needs and filled me with His wonderful peace through all of this, and I love remembering Cayla with those that knew her.  In Cayla's case the doctors and nurses knew her more than my family and friends got to know her.  That hits a very hurtful and painful chord to think of so many that didn't get to spend much time with her, or never even got to meet her.  So many prayed for her without ever meeting her.  Heaven.  Looking forward to heaven to be reunited with my little girl.  Going to send Dr. Erneberg a picture of Cayla.  I told her to pass on to all the other doctors and nurses our thanks for their above and beyond care for Cayla.  I don't know how they do it, but despite all the patients they see day in and day out, they are able to make each one feel like they are the only patient in there and all the staff is working on just your baby's needs.  We felt special and from talking to many others, they did too.  I never had to explain anything to anyone about Cayla.  They came in that room knowing all about her from day one, even if they just met her at 3 weeks old.  Just felt so well taken care of. 

You know I forgot to mention this when Cayla had her heart surgery, but I have to share about the anesthesiologist who came in to talk to us.  He was a big, tall, gentle, man who was younger than me.  He had all the family there and told us that morning before they wheeled Cayla away that as soon as Cayla is in his care, he looks at her as his own child.  He told us about the 2 boys, I believe, that he has and how blessed he is to have them.  He wouldn't want anyone to hurt or do anything to harm his children.  So when he takes a child for surgery, he looks at them and treats them as if it's his own child laying there, and will do everything in his power to make this surgery as pain-free as possible.  He is the one that had her the first hour she was in the OR.  I believe he is the one that put the central IV in through her jugular in her neck using an ultrasound machine.  Amazing really since she had no neck... I'll find some pictures from the day of surgery.  He also put the peripheral IV in her wrist as well and completely prepped her for Dr. Stewart to come and do amazing things with her teeny, tiny arteries. 

Samuel holding his sister who has no neck, but the anesthesiologist got the IV in her jugular anyways.  I know most babies are like this and of course have a neck, they just like to hide it well.  :o)

This is the anesthesiologist on the right I was talking about who took Cayla and handled her as if she was his own.  :o)
After the visit with Dr. Erenberg, Cathy, the lactation nurse wanted to see me, so we planned to meet down by the "tree" in the main lobby in about 10 minutes. When we got there a group of students were there playing the grand piano, violin and cello in the main entrance lobby.  It was beautiful to hear as we waited!  You know, I got to talking about everything else with Cathy except the cabbage leaves.  Forgot all about it. She'll be getting another phone call here soon from me.  :o)  She even thinks that the milk bank in Columbus will take all my frozen milk.  I have about 40 small bottles of milk from when I was in the hospital and Cayla was on an IV not eating.  We'll see.  I'd like someone to be able to use it somewhere.  I also got to talk to her about Cayla in heaven and getting to see her again.  I just want as many people as possible to know how to get to heaven... not for them to be able to see Cayla again, although that's definitely a perk, but to know before they die, where they'll spend eternity.  I want to see all my friends from Cleveland Clinic in heaven someday because they accepted Jesus Christ as their Savior and have been saved from an eternity in hell. If you're not sure what I mean, reread my post from Easter Sunday.  I think I called it "Happy Resurrection Day" or something close to that.  Loved talking to Cathy and brought tears to her eyes too as we talked about Cayla's tears being wiped away by God Himself!  I just love picturing that!  Don't you?  It's an awesome thought and really helps me keep a right perspective through all of this.  She also told me that many nurses and doctors from the NICU remember Cayla and me while we were in there that first week and are very sad to hear about Cayla.  She said for not being in there all that long, they really remember you all.  I gave her the blog address and told her to pass it on.  I hope they get to read this and know how much they were appreciated.  Loved nurse Kathleen and Dr. Vlad. :o)  Great people down on 3rd floor in the NICU.

Cathy, the lactation nurse, and I the day Cayla was discharged the first time.
Dr. Vlad standing in the middle, not sure exactly what his real name is... I don't know if Vladamir is his first or last name.  I'm thinking it's his first name.  Dear Dr. Vlad and his Russian accent.  :o)

Nurse Kathleen from the NICU, one of my favorite nurses in the whole hospital. :o)
This was during Cayla's EEG, a brain scan or something like that.
Tried to get a hold of nurse Mary Lou to see her, but she was with her dad who was taken to the hospital that week.  If you would, pray for him.  He's doing better now, but still has a ways to go.  Thanks again to Mary Lou Lucas and all her wonderful encouragement and help through this whole process.

Overall, I came away from Cleveland Clinic last Thursday with such a peaceful and joyful spirit.  God is in control and He is working in lives.  What more could I ask for?  We did stop at the Ronald McDonald House to return one of our keys that we finally found... they're so good and patient and didn't even get upset with us.  We still will repay them even though they say, only if we can, and if we do, there's no rush.  We were able to have that room for 24 days at $20 a day.  Could you imagine what a hotel or other lodging would be?  So much to be thankful for.  They are adding 20 more rooms on the side, but despite the construction, we were still able to stop and smile with Ronald before we left.

My nephew Tyler and Ronald... ;o)

Ronald, Samuel, Tyler and Sheylyn... love them all!

Me, Ronald and Mom saying goodbye.  :o)

Yesterday, Monday morning, I got a very nice call from Dr. Lorber.  He wanted to express his condolences and let us know just how sorry he was about Cayla.  So, so nice.  He wanted to know what they said the reason for her death was.  Well, it was listed as her heart, but I told him, it really wasn't just that.  I tried to explain some of what I've written in the last couple of posts.  I feel bad for them because they worked so hard to do everything possible to keep her alive and for it all to end so quickly.  No one asked us if we wanted an autopsy done and if we'd been asked, we'd have said no.  An autopsy might have been helpful to the doctors though, but in reality it might not have shown anything.  I don't know.  It just really touched my heart to have him call and ask how we were doing.  I did get to tell him we're doing well and why we're doing so well with God holding us in His hand and wiping Cayla's tears away.  He asked for the reference to that verse again, and I just pray that God will work in every one's lives that have been touched by our precious Cayla Joy.  I've been giving everyone this blog address to read about any parts they missed in her journey and our journey with her.
Thank you all really for the prayers still being sent in our behalf.  We all still miss her deeply, but are willing to trust God and His purposes for our precious Cayla Joy's little life.

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.  

Tuesday, July 3, 2012


Well, we were supposed to be going to an 8am appointment with the nutritionist; then to Dr. Gurd's to remove her final cast and get shoes with a bar and discuss her spine and what he planned to do with it; then to Dr. Erenberg her cardiologist for an echocardiogram; and maybe someone else too.  Can't quite remember now.  I guess they've all been told and aren't expecting us today.  I know I've talked to Dr. Erenberg's office, but I don't know how it all works.  Dr. Erenberg wants to just talk, so I told her I could come in Thursday.  Mary Lou called me and wants to see me then too.  Cathy the lactation nurse wants to see me as well. 

Which reminds me... Did I ever mention green cabbage leaves before?  I'm pretty sure I didn't.  Here we are at Cleveland Clinic, a pretty well known and respected hospital in the nation, and what is the remedy recommended by the lactation nurses when milk production is coming to an abrupt end?  Green cabbage leaves.  Some asked me if they gave me pills to take or what not.  Nope.  Just to use cabbage leaves to relieve the pressure and help the milk ducts.  I'm going to have to talk to her Thursday about how this works, but let me tell you, it does.  They also recommended to pump a few minutes here and there to take the edge off, especially at the beginning and all, which also helped.  Not to keep the supply going, but just to relieve some pressure.  It all has worked even though I didn't open my email about the cabbage leaves until later, but the thought of cabbage leaves just makes me smile.  No meds or anything fancy... au natural.  Love it.

I do have questions I want to ask.  I don't know if I should even bother.  It's not going to change the outcome.  So do I really want to ask the What if's... Should I have... Why didn't...?  I do have some questions such as:  When we were readmitted to the hospital May 27th, they said her white blood cell count was extremely high.  Aren't they the fighters?  Don't white blood cells fight infection?  If she had high numbers then that were fighting off something they were never able to identify, wouldn't she have had those same white blood cells show up on that Friday and put up a fight?  Where were they then?  I'm sure they were there, so maybe there was more to all this? It seems to me she had some kind of an immune system, so what could have happened that Friday?  Out of all the things wrong with her, her heart was actually doing the best, yet it was listed as heart failure for the cause of death.   Do they think the infection in her bottom caused all this?  I know they don't know, they weren't there.  Which brings me to ask them this burning question that has bothered me since that day... Why didn't the helicopter come right away?  I don't think coming to life-flight someone 2 and half hours after the call is worth the time of day.  I could have driven her to Cleveland Clinic, to her doctors that knew what was going on with her, there and back in the time it took to get a helicopter there, at which time it was too late. 

Another one is:  They were never able to get an IV in her at the ER.  Would that have made a difference?  Could they have been able to get meds into her to prevent this if they could've got that IV in?  They even brought an ultrasound machine in the ER to help find her veins to get an IV in and couldn't do it.  Why was she held so long at ACMC if they couldn't make things happen?  Just stick her in an ambulance and take her over if the helicopter's not going to be here for another hour or 2.  They even told us it would be that long when I asked when the transport would be here. I know I'm sounding riled up, even angry through typing when reading the printed word without hearing the intonation in my voice, but my tone is more of frustration than anything else.  What if I brought her in an hour or more earlier?  Yes, I took her to Dr. El Gammal first, but that only added about 15 minutes since her office is in the hospital.  I wanted her to see her since she had just seen her the day before.  Whenever I go down these paths of What if's, I am reminded she truly was in God's hands.  He could have prevented her death that afternoon if He wanted to.  It was just her time.  I really am ok with that, but I still have questions I know will never be truly answered.  I don't know that I should even bring anything up with the doctors on Thursday.  We'll see.  I don't know that I even feel better writing this kind of stuff out.  It's just rehashing it all in my mind.  I couldn't sleep last night and had to come downstairs and read so Lowell could sleep.  I couldn't stop replaying all this and the questions in my mind and was going into a place in my mind I don't want to go.  I was able to read and engross myself in someone else's life for a while as I fell asleep instead. 

God will get me and all of us through this.  It's just going to take time.  God brought me to Psalm 28 this morning. I think I'll close this morning with verses 6 and 7 of this chapter.  It's going to be all right.  Going to go put on some music, get ready and finish my dishes.  I don't know about our picnic this morning since it's now finally raining, but we'll see what the day holds.  Love you all!

"Blessed be the LORD, because he hath heard the voice of my supplications.
The LORD is my strength and my shield; my heart trusted in him, and I am helped;
therefore my heart greatly rejoiceth; and with my song will I praise him."
Psalm 28:6,7

Monday, July 2, 2012

Like a River Glorious, Take 2

Tears have fallen.  I feel a little lost with what to do with myself.  Really needed to do dishes, so... I wouldn't let myself go anywhere until they were done.  They're still not done.  Haven't done dishes since Marla, Meg and Chloe were here doing them for me last Thursday morning. Even though my mother-in-law came over and helped with them, I still have more to do.  Dishes can be so depressing to me...  ANYways, I've been invited to a picnic lunch/Bible study with 3 friends tomorrow from 11-2 at the park.  :o)  Greatly looking forward to this.  Samuel and his 3 friends will be having fun themselves... not sure where they'll be.  So, my motivation is to get all my dishes done tonight to feel free to enjoy tomorrow.  We'll see. 

Outside of dishes... I'm doing ok.  I've been rereading the blog, this time from the beginning.   Saw this post from mid February and it hit a chord a second time around.  It's true.  It's where I'm still at.  It's where God has taken me.  It describes how I feel exactly.  God has taken us down a path on this journey that I didn't want to go with our precious Cayla Joy, but this incredible peace is a huge part of who I am in Christ through it all...  

I've copied it and reposted it for the blessing of wonderful words to live by in this song.

"We sang this hymn Sunday morning in church.  When I play the piano, I can't help but study and follow the words of the beautiful hymns that are sung so I can pass on the meaning, emphasis and feeling of it through the music to the congregation.  I've always loved this hymn, but, wow, did it's message just flow through me in a whole different way (no pun intended...).  I had to keep moving through the service, and didn't get another chance to go back to it until now.  It all came back.  I just have to write out the words today in my blog.  It is where I'm at.  It is where God is taking me.  It describes how I feel exactly. No matter where God takes us on this journey with our precious Cayla Joy, I want this incredible peace to be part of who I am in Christ through it all.  

Thank you to Frances R. Havergal for writing these words.  She was only a year older than me when she died.  I don't remember her story, I'll have to look it up, but such inspiring words could only be written by someone who had been through some deep, rough times herself.  Try to read it as if it's the first time you've read it.  Enjoy...

Like a river glorious is God's perfect peace,
Over all victorious in its bright increase;
Perfect, yet it floweth fuller every day,
Perfect, yet it groweth deeper all the way.

Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.

Hidden in the hollow of His blessed hand,
Never foe can follow, never traitor stand;
Not a surge of worry, not a shade of care,
Not a blast of hurry touch the spirit there.

Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.

Every joy or trial falleth from above,
Traced upon our dial by the Sun of Love;
We may trust Him fully, all for us to do;
They who trust Him wholly find Him wholly true.

Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest."