Saturday

I've been posting a few thoughts on facebook (fb) today.  Even though I woke up around 7am, I didn't get out of bed until sometime around 9am I think.  Then Lowell and Samuel ran some errands as I sat at the computer and read through old blog entries, and family members posts on facebook about Cayla from this week and all the comments from so many people I don't know.  I then sat in the pink chair and read God's Word.  I found myself back in John 14 again.  Love that chapter. 

God lifted my spirits and as I said on fb, "...I really am happy for my little girl. And I would guess that being in heaven is the only place she could be that I could say that."  I fell asleep with verses of peace on my mind until the boys came home.  They wanted lunch and then wanted to play frisbee golf.  All I did was smile at them as I moved to the couch to be more comfortable.  I think they did fine getting lunch by the look of all the dirty dishes they created. I fell asleep for the next hour or two. 

This was another post I wrote on fb, "God is so ever good and faithful. The tears and weeping are still there, but His peace is still there even stronger than those tears. Can't explain it. Just that it's all Him. Doing ok right now. I think 2:15pm is a good time to get my shower and get my day started..."  :o)  They were just coming home from frisbee golf and I did feel a little better after a shower, but I was still tired.  Managed yet another short nap while Samuel was out throwing the football with the Strulls next door.  They are missionaries to Germany home on furlough staying at the parsonage next door. 

We did actually manage to go to Mentor for dinner and a little shopping.  We finally were able to celebrate Samuel's passing all the OGT's (Ohio Graduation Tests) the 1st time around and scoring in the accelerated category on 4 of them and proficient on the 5th one.  He had to take them with a lot going on in his life, yet did so well.  For the shopping part, we bought a pretty box to put some of Cayla's momentos in.  Haven't decided what all will go in there, but I know her pink stethescope will be in there.  My friend Kristi Street was telling me how they did that for their little Matthew, and I thought it would be a nice way to keep some of her special things and memories. 

I also accepted a job offer today.  It is just a few hours, part-time this summer but a few more hours during the fall.  It's at Basic Ingredients in Ashtabula Harbor.  It's where I go to get all my gluten-free flours and such.  Kathy Lovas, a sweet, Christian lady, owns it and asked and since it's not many hours, we felt that it would work well.  We had already determined I would have to work part-time somehow.  So you can come to Basic Ingredients to visit me on Tuesday afternoons and Wednesdays.  :o)  

Once again it's late and I am still tired despite all the sleep I got today.  I'm not sure if this extreme tiredness is just physical.  I'm guessing it's all inter-related with the emotions and all of this week.  Prayers really are being answered.  My soul is rejoicing for Cayla and her being in heaven.  Still miss kissing that beautiful face.  I found this picture on my step-mom's fb page and want to share it.  Thanks Pat for your photos!

Hugs and Kisses for Cayla Joy

Lowell came home yesterday saying that he'd talked to his cousin Jodi.  She had Cayla's death certificate and it said that the cause of death was heart failure or something like that.  We haven't seen it yet.  She's mailing it to us.  We cried when he told me.  I don't know, I guess it's just hard to hear.  She really had so many things wrong that even though she might have looked like the picture of health, she obviously really wasn't underneath it all.  We knew that.  She even had an issue with her tailbone I forgot to mention from her last doctor's visit that would have to be looked at.  I know she would have had many painful days and long hospital stays in her future, but we were ready to tackle it all with God's strength.  I am so happy for her now that I know that our precious Cayla Joy will never have to cry again.  Never have sorrow again.  Never have a tear run down her face.  She will never be in pain again.  She will never have to face death again.  God has personally seen to it that all this is in her past.  I know I've mentioned this verse in Revelation 21:4 before, but it helps me put her life in perspective. It helps me be ok with her death.  She's had a taste of a perfect life in heaven.  I think it was John Rettger at the funeral Tuesday who said that now that she's seen heaven and if given a choice between that and being back here, do you think she'd want to come back?  No one would.  She knew she was loved.  She looked deeply and stared into our eyes as we loved all over her.  She responded to us.  She was loved more than ever during her time here on earth.  But, up in heaven she's being loved perfectly by a holy and perfect God, who loves her more than everyone here put together, which is a lot of love and hard to imagine.  But it's true.  God has made her complete.  No more heart defects and there were quite a few that still needed to be corrected.  No more club foot.  No more fused ribs.  No more scoliosis.  No more bottom problems.  No more missing or messed up tail bone.  No more undefined nose bones... whatever that was about I never did find out.  She's perfect now!  That makes me smile.  It should make you smile too.  God is good all the time. 

You know, I've been following the clock all day today reliving last Friday.  I called Lowell a little after 3 to see if he was thinking about this time last week.  He wasn't, so I felt bad mentioning it.  It's just been a day.  I wanted to go play 18 holes of frisbee golf this morning before it got too hot, but I fell asleep for and hour and a half on the couch before I could get going.  I guess I still needed the sleep more than I realized.  We had lunch and left for Jefferson.  I got my hair cut by Elissa at Lake Effects (which she wouldn't let me pay for...such kindness...) while Samuel went down to the Laing's house to spend some time with Joseph.  I got to stop in and see my sister-in-law, Cathie at work and ran into Sandy from Jeff's Flowers and talked to her on the street there for a while.  I headed down to Tina Siesel's house and just enjoyed my walk in such beautiful sunshine, albeit very hot sunshine, but it still felt good.  I did at one point feel like I should be pushing the stroller with Cayla in it, but I didn't dwell on that.  Then I got to visit with Tina and Tammy Laing while eating fresh peaches, cherries and grapes from Tina and a milkshake from Tammy.  I'm really suffering here... ;o)  You know what I told them as I was talking?  All day I've just been overwhelmed with wanting to kiss my precious Cayla Joy all over her sweet little face.  I said I was going to write on my blog to ask everyone who can, to give their children (any age) hugs and kisses for me tonight since I can't kiss Cayla.  Hug them, hold them tight while you can, give an extra hug and lots of kisses to them, and treasure every day you have with them.  Be thanking God for what He's given you even when you're at your wit's end with what to do with them.  Hug and kiss them while you still can.  Make sure they go to bed tonight really knowing they are loved.  Tell them you love them.  Do it for me.  Watch out Samuel, you're getting Cayla's dose of love too tonight.  :o) 

Well, this is all for tonight.  It's somewhat draining emotionally to write in the blog even though it makes me feel so much better putting my thoughts into writing.  God's been helping us all through this one day at a time.  There's so much more I want to write, but another day. Thank you for your prayers, and I truly mean that.

Trying to keep moving on

Well it's Thursday afternoon.  I am exhausted, but doing ok.  Lowell had to go back to work today.  My brother Jim and his family left this morning, and it's back down to just me and Samuel.  We are all so tired, and I feel bad for Lowell having to work.  Cayla is ever in our thoughts as we move around the house.  Our house looks like it did before Cayla took it over which in one way is so very sad, but really I could not go on looking at empty things that should have Cayla sitting in them.  It was so hard coming home Friday night and seeing the empty crib, bassinet, bouncy seat and all.  It was so helpful having my mother-in-law, Wendy Hollon, and Erin Brown over on Saturday as we packed it all up.  On Monday, Lowell and Samuel printed out some 5x7's and an 8x10 picture of Cayla for us to have around the house.  He even got frames for them, and it's wonderful to have them around to look at.  That's what I want to see to remember our precious Cayla Joy, not drawers of clothes or empty cribs.  I do have to say though, when Birth Care came Monday morning to pick up her clothes, bouncy seat, diapers, and other odds and ends, it was hard when they were driving away.  Coming back into the house with all that gone made the house seem so bare. 

Sunday morning we went to church and were able to be held, hugged and comforted by our church family.  Such wonderful people God has blessed us with.  Why I even hesitated to go is beyond me.  We came home and had our roaster chicken like we do almost every Sunday afternoon and then packed up all of Cayla's big items that we had borrowed from Ann Sutch.  What a blessing that we didn't have to buy a crib, bassinet, electric swing or tub.  We went to her house to return these items and spent an hour or so in a most beautiful piece of God's country.  Thank you Ann for the items and the fellowship. 

Jodi Baumgardner Poole, Lowell's cousin, the funeral director was meeting us at 4pm at the church to see it before Tuesday.  We all came back up to the house and talked while I downloaded some pictures for her to play on a screen in the foyer at the funeral.  She has been so good to us.  We were then able to set up a meeting at 6:30pm with the man from Lenox Cemetery to choose her plot.  She is in such a quiet spot back under the trees in a small, beautiful little country cemetery.  I am so glad my in-law's mentioned it.  It's just one mile from their house, and since they have been there so long and are the anchor in Lowell's family, it's only fitting to bury her there close to our hearts and their home. 

I have to say that when we were there at the graveside on Tuesday, I was overflowing with joy.  The weather was the most beautiful kind of day you could ever want.  The sun was shining so bright.  There were a few white puffy clouds.  The sky was a most beautiful shade of blue.  There was a slight breeze that kept the sun from making it too hot.  And yes, my baby girl's body was lying there in the box in front of me, but I could not be sad.  It's just a shell that came from dust and will now return to dust.  It's not Cayla Joy.  She's in heaven in the arms of Jesus and getting loved on by my mom, her Grandma Halbach and many others.  Even Dave Thornton, a wonderful man of God who passed on a few months ago and so looked forward to meeting this little Cayla Joy, is with her telling her all his jokes and making her laugh like she's never laughed before.  As the song says... heaven's getting sweeter every day.  Standing out there in all this beauty, I just wanted to raise my hands to heaven and praise God for all He's done and is continuing to do in my life and those around me.  I know some of this might sound odd, but when you know God personally, it is somehow possible to have joy during situations like this.  Why would I or you or anybody not want to have a Savior like this?  Like I've said before, He is everything in these circumstances.  He is the reason I can sing during a trial like this.  Please take time to rethink where you are in a personal relationship with God.  Email me... lindasowry@gmail.com

Well, it's now Thursday evening.  We just got home from grocery shopping and dinner.  I have to say that I couldn't stop the tears when we walked by the baby section at Walmart and almost cried when a baby cried at Bob Evans.  I just don't want to forget that Cayla Joy was here.  I don't know if that makes sense, but for the last almost 17 years, it's been just the 3 of us.  Then 8 months ago, we found out about Cayla and a week ago we lost her and are back to what it's been for years.  It almost seems like she was a dream, but the way my arms ache to hold her and the way I long to kiss her little face all over bring me back to the reality that I will never have to worry about forgeting her. It's just hard. It all happened so fast with only 6 months of knowing I was pregnant and then having her for only 2 months and now it's all over.  I just have to trust that God has a plan and a reason for it all that I may not fully understand until heaven. 

So many people have written us expressing their love and prayers for us as we go through this rough time.  I am humbled.  I am finding out that people all over the world are reading Cayla's story through this blog.  If one person would trust God as their Savior because of Cayla's life, it would all be worth it. I am finding out that many, many people are praying and I know why I am so at peace despite the pain and hurt.  God is faithful.

I wanted to talk about Tuesday, but it will have to wait until another day.  I'm tired and need to go to bed.  We were able to video tape Cayla's service and I hope sometime soon to be able to post it onto the blog.  We are just taking one day at a time.  Thank you again for the prayers.  God is answering. 

"The God of hope fill you with all joy and peace in believing,
that ye may abound in hope, through the power of the Holy Ghost."

Romans 15:13

"Come unto me, all ye that labour and are heavy laden, and I will give you rest."

Matthew 11:28

This morning...

"And God shall wipe away all tears from their eyes;and there shall be no more death,

neither sorrow, nor crying, neither shall there be any more pain."

Revelation 21:4

Too many thoughts.  Yesterday morning I asked God for something to help me get through these days.  I automatically turned to Psalms, but I was thinking more of Cayla than myself.  Then the phrases, no tears...no crying, came to mind.  I knew it was in the end of Revelation where God is describing heaven.  So to the end of the Bible I went.  When I found this verse, I was overcome with joy for my precious baby girl.  All those many, many tears have all been wiped away for good.  She won't have to cry anymore as she is stuck, cut, poked, prodded, or hurting.  I'm crying tears of joy again as I type this.  Do you see that verse??  Our precious Cayla Joy not only has no more tears, but they've been wiped away by God Himself!  How amazing is that thought?!  She will never have to face death again.  Never have to have any more sorrow.  She will never have to cry another tear again.  She shed so many tears that this promise just ironically makes me shed great tears of joy thinking about it.  Never will she be in pain again.  Can you imagine what that means to us after all the pain we've watched her go through in such a short a little life?  I am so happy for our precious Cayla Joy this morning because this verse is a beautiful promise from God, and if He's promised this, then it is true or He's not God. 

I tried to lay in bed and think about what we're going to have to do today.  We are going to have to bury our precious baby girl.  No tears would come like I expected them to... yet.  I know there will be plenty of tears to last a lifetime today, but this morning is peace.  Just His perfect peace.  It is beyond understanding and I know that we will all be ok today as we go through this.  God is in control of today.  I'm good with that.  I certainly don't want to be in control.  I'm being completely honest when I say that I'm looking at today with the desire for it to be over and not really have to even go through it, but also with the desire to see what God's going to do through lives today.  He is going to carry us.  He is going to be glorified through Cayla Joy's little life.  He is loving her more than we ever could.  He is loving us more than we will ever realize.  He is working behind the scene to accomplish His will in ways that we will never even know.  I am ready to go start my day knowing all this.  Knowing I'm not alone.  Knowing it's not all the people supporting us that is going to get us through, but God's support.  There will be so much encouragement from so many people that God is going to use and already has, but He will be holding my hand as I sing the song He gave me.  He will be holding us up as we stand before our baby and give her back to Him.  He will be everything today.  So, I am now able to say because of my Lord Jesus Christ, I'm ready for this day.

I want to close this with the words to the song, "A Storm Now and Then" that I'll sing for Cayla and my Lord today at her service.  I know I will be able to sing this, because God has completely laid it on my heart to do so today.  Please keep praying for all the family and friends today and that this memorial service for our precious Cayla Joy will bring honor to Jesus Christ and that any that have never given their lives to finally trusting Jesus would see how wonderful He is and trust Him completely with their lives today.  To God be the glory!

All my dreams were shattered, and all that mattered was gone, on the winds of sorrow.

Everything I had planned swept out of my hand, and I saw no hope for tomorrow.

With my heart near to breaking, I cried, "Lord, I can't make it by myself.  I just can't carry on."

Then with the storm at it darkest, came the words, "I'll never leave you.

You are loved, let My strength be your own."

It takes a storm now and then to remind us to depend.

To depend upon the Lord and to rest in His Word.

For in the wind and the rain, I've learned to call upon His name.

And I thank Him in my song, He sent the storm to make me strong.

When my feet are stumbling, my hopes are crumbling, the Lord is there abiding.

He is peace. He is calm in the midst of the storm.  The Lord is there abiding.

He is grace, He is power.  He is strength for each hour.  He is comfort and safety from all harm.

There is joy in my soul, for the Lord has control, and beneath are the everlasting arms.



It takes a storm now and then to remind us to depend.

To depend upon the Lord and to rest in His Word.

For in the wind and the rain, I've learned to call upon His name.

And I thank Him in my song, He sent the storm to make me strong.

Emotions

You know, I just went through the last entry in the blog.  Well, most of it.  I didn't actually read the middle part.  But looking at those 3 pictures, I just think, how could such a picture of health die within 24 hours.  All 3 of those pictures were taken Thursday afternoon and evening.  She died the next day.  I still can't quite grasp this whole thing. 

My emotions are so mixed and changing and hard to deal with right now.  

I feel guilt.  How many times was I told that I'm her mom, and I'm the one that knows her better than anyone, and I have that maternal instinct to know when she's not right... "You'll know, Linda."  Well, I feel like I failed my little girl.  I didn't read the signs right.  I didn't err on the side of caution.  I didn't react soon enough.  I don't have very good maternal instinct.  I failed her.  She's gone because I didn't do things right.  I'm not looking for pity or anything by admitting this.  I'm just voicing my emotions.  This whole idea has sent me into fits of weeping on and off tonight.  I finally admitted to Lowell my guilt and waited to hear him say that no, I've got it all wrong, and that I'm ok and did everything I could.  Instead he said that he'd felt this too and had been struggling with these same feelings as well.  When we noticed her breathing slightly change 2 days prior, why didn't we jump on it.  When doctors looked at her bottom, why didn't I push for antibiotics to clear it, even though I know she can't be on antibiotics for 4 months, not that they're even sure it really was her bottom that caused this.  He totally understood where I was at and was there too.  BUT... then he gently reminded both of us and Samuel sitting there that we could have done everything perfectly and caught it all at the exact right time and got her to the right doctor, and God still could have allowed her to die.  And then he also said that we could have missed even more clues, taken her in later, not done half of what we did, and God could have still allowed her to live.  Her life was in His hands and she didn't die a minute before or after it was her time.  God is sovereign.  He said he felt that he trusts God completely even if he doesn't agree with what happened.  I thank God for my husband and his honesty and for him telling me exactly what I needed to hear from God and what my focus needed to be on.  I feel better on that issue, but there's so many more. 

I feel confused.  I don't want to be at home and find myself with some down-time where I end up dwelling on it all and weeping. So I've kept busy today and gone out as much as possible to avoid it all.  Then I feel guilty for being out doing something I couldn't do with Cayla and feeling like she should be there in the stroller with me. 

Basically, my day has gone like this... After a night's sleep that was actually very sound once we stopped crying and went to bed, I woke up thinking it was time to feed Cayla.  This set me off and the tears came.  I eventually got up and attacked the dishes and put away her pile of syringes, bottles, tubes, nipples, and all that it took to get through one day with our precious Cayla Joy.  They were piled over an entire dish towel from edge to edge having to be washed and reused daily.  I cleared them all off into a trash bag.  That didn't feel right and made me cry and wash dishes harder.  We had to meet Jodi, Lowell's cousin who owns Baumgardner Funeral Homes, at the funeral home in Andover at 10am and had to leave by 9am to pick up Mom and Joe on the way.  So, once the dishes were done, I started my last load of Cayla Joy's laundry.  I went through the whole house gathering any and all that needed a final wash... sheets and all.  I folded the load I just did of her clothes that was in the dryer, taking my frustration and hurt out in every little thing I did.  I took my shower and cried through it.  I put the clothes in the dryer feeling like I can't wait to get in the car and leave the house.  We left, and once we were around other people, I went into a mode of almost taking myself out of the reality of the situation and talked about the arrangements as if I was discussing what was for dinner.  Couldn't cry if you'd pay me to.  We saw the coffin, the notebook, gave her the dress and blanket and made all the arrangements which went so well thanks to Jodi and her wonderful professionalism.  We all went to lunch and after dropping Mom and Joe off at home, stopped in to the Hollon's house to see them.  When Wendy hugged me a piece of the dam broke and tears flowed.  We caught up with them and their lives as they've moved to Detroit, but are still trying to get this house ready to sell.  Lowell's mom was heading back to our house to help us put away and deal with all of Cayla's things.  Wendy came up with us for the afternoon to help too and then Mom dropped her off on the way home.  We gathered all her things and I sat and sorted it all.  I called Erin, Elise's mom (the little girl we babysat this spring) to have her come and see if Elise could use any thing.  So she came too.  It was wonderful having support so I didn't have to think.  I sat going through her clothes, most of which she never wore so there was no real attachment to them no matter how cute they were.  Organized what I would keep and what would go to Birth Care in  Ashtabula Harbor.  They are volunteers that help women who have chosen not to abort their babies and tell them about God and His love for them.  I love this.  I was given their number by a friend and look forward to putting Cayla's things to a wonderful cause.  Well, they even disassembled the crib and everything.  We will take all that back to Ann Sutch tomorrow after church.  I feel bad for wanting all this out of the house, but I can't keep looking at it day in and day out.  Confused emotions again...

Well, Lowell's brother's came up today from Columbus and when everyone had left, we went to Covered Bridge Pizza with him for dinner.  When Lowell asked if I wanted to go play a game of Frisbee golf at Lakeshore Park, I jumped at the idea.  As we were playing the course, I started feeling like this was wrong to be doing when we just lost our daughter yesterday.  What if someone saw us?  What would they think?  I then finally voiced my feeling to Lowell as I cried.  He once again said that he'd been feeling the same way, but knew he couldn't sit at home all night dwelling on Cayla and wanted to keep moving.  So some of my confusion left.  Lowell lost his concentration and threw his disc in the pond... Well, we'd all played enough after 14 holes anyways and decided to call it quits and head home.  Then we stopped at Giant Eagle to grab some groceries.  Putting off the inevitable of having to be home without Cayla.  It's been an avoidance day...

Almost didn't want to go to church tomorrow to have to face everyone, but I know it's right where we need to be and will be there no matter what.  We need the encouragement of our church family.  Mixed emotions and guilt resurfacing for even admitting that first line there.  I don't think her death has really hit me completely.  I just want all this to be over and go back to feeding Cayla and taking care of my baby. These are thoughts that run through my head.  It's almost as if at times I'm in denial.  There are times when I try to picture her laying in her crib and all I see is a blank face.  I can't picture her.  Then I get scared and cry out to God to not let ever forget that precious face.

Ok, enough of all this rambling.  I'm tired and it's totally coming through this post.  I just reread it.  Kind of weird and doesn't always make sense, but I'm too far gone to fix it.  Thanks again, seriously for the prayers.  God is good ALL the time!  He will get us through this with his joy.  I want to sing the same song I sang at my mom's funeral, at Cayla's... A Storm Now and Then.  Can I do it?  Don't know.  But the message is what I want to get across to everyone there, that God uses these times to bring us to Him if we let Him.  It's a powerful song, but I don't want anyone thinking I'd sing it for any glory of my own.  So for that reason, I might not.  We will have to see.  Pray for us as we plan a simple but completely God honoring and glorifying service for Cayla.  Thanks again and goodnight to all.  It's almost midnight, but I want to be so tired that as soon as my head hits the pillow that I will fall asleep so I don't have to lay there thinking too much.  Once again, we'll see. Till the next post.  Goodnight.

... the LORD gave, and the LORD hath taken away

"... the LORD gave, and the LORD hath taken away;
blessed be the name of the LORD."

Job 1:21

"Bless the LORD, O my soul: and all that is within me, bless his holy name.

Bless the LORD, O my soul, and forget not all his benefits."

Psalm 103:1,2

"I cried unto the LORD with my voice;

with my voice unto the LORD did I make my supplication.

I poured out my complaint before him; I shewed before him my trouble.

When my spirit was overwhelmed within me, then thou knewest my path."

Psalm 142:1-3

"In the day when I cried thou answeredst me,

and strengthenedst me with strength in my soul."

Psalm 138:3

"Cause me to hear thy lovingkindness in the morning; for in thee do I trust:

cause me to know the way wherein I should walk; for I lift up my soul unto thee."

Psalm 143:8

"He healeth the broken in heart, and bindeth up their wounds."

Psalm 147:3

"Hearken unto the voice of my cry, my King, and my God :for unto thee will I pray.

My voice shalt thou hear in the morning, O LORD.

In the morning will I direct my prayer unto thee, and will look up."

Psalm 5:2,3

"As for God, his way is perfect: the word of the LORD is tried:

he is a buckler to all those that trust in him."
Psalms 18:30

Overwhelmed but at peace; numb but feeling God's peace and strength; weeping yet calmly resting in His hands; heartbroken but knowing God is the healer of broken hearts; struggling to understand but very willing to trust.  I so fully believe and cry out every one of these verses to my Lord and Savior Jesus Christ who is everything we need to get through something like the loss of a child.

I really don't know what to write.  I do know that I need to write this out now while I'm still kind of numb and in shock and not later.  God has chosen to take our precious Cayla Joy home with Him in heaven.  I hurt.  Deeply. We all do.  I want to trust God's plan and I do, but the tears are ever on the surface and spilling over.  I will praise Him forever for the 2 months He gave her to us!  Very labor-intensive months, but ones I will never regret or forget.  Actually we had her and enjoyed her for more than those 2 months.  I enjoyed her, for the most part, throughout the pregnancy too!

What a strange and very sad day today is.  Cayla had a very bad diaper rash that we found out is from her little bottom problem.  She had just been to the pediatrician yesterday and seemed fine, even had her immunizations and seemed to do just fine.  She woke up throughout the night and just cried with no real provocation.  She spit up 3 times after she ate at 7:30 this morning and then when I fed her again at 10, I think she spit up one more time.  I went to change her diaper again and noticed it was not looking right at all.  She was kind of making this weird crying noise.  At this point she was unresponsive and actually never did regain that responsiveness.  So, Samuel and I hooked her up to the pulse ox machine and she was around 85-97 (only supposed to be between 75 and 90).  Then I looked at her laying on the bed and realized something wasn't right.  Her eyes had now rolled up in her head, she was whitish-purple, and was breathing really hard.  I called the pediatrician back to see if she was having a reaction to her shots and she said to bring her right in.  So, I knew this was another re-admittance to the hospital, got dressed and threw some clothes in a bag and ran out the door with Samuel.  She was almost in a trance.  Her eyes hadn't moved and she was very methodically making a strange noise.  I debated whether to take her to 4th floor to her pediatrician or the ER.  The nurse said that since Dr. El Gammal had just seen her yesterday that she would think I should bring her up to see her today and go from there, so I did.  I waited, in the room and finally went to the nurse and said, if she can't see her right away, I just need to go to the ER and get her on her way to Cleveland Clinic.  Well, the doctor came running in then, took one look,  called the ER and I don't know who else and thus it all started.  Dr. El Gammal carried her to the ER herself and spent the rest of the day by her side. 

They tried to life-flight her to CC, but couldn't get a chopper here right away.  Then when they arrived, she wasn't stable and never made the trip.  This all started around 10:30-11am this morning at home and she died at 3:05pm this afternoon.  They did everything they possibly could.  I didn't realize she was that serious the whole time until they asked us to go the family waiting room and a doctor would come talk to us.  Then I knew and couldn't believe it.  I was just so sure this was going to be another visit to the hospital, maybe even a long one, but then we'd come home.  That's when it hit me and I lost it.  While we were waiting for the doctor, Pastor and Mrs. Emery walked through the door!  They had heard we were here and decided to turn around and stop by to see us before we went.  A few minutes later the doctor came in and told us she was gone.  I'm not exactly even sure what the actual cause of death was.  Her bottom had become infected and got in her blood stream I believe.  The doctor said at one point she was septic, but I had no idea what that meant and asked her, but still didn't realize how serious it was.  I believe from what I've picked up, that her body didn't have a good way to fight that infection and so with little resistance it spread quickly right through her and to her heart and her little heart couldn't take it. 

Everything has happened so fast.  I am obviously still in shock or numb or something.  I'm sitting here writing after weeping for my baby girl that is now gone even though I'm not crying as I type and will probably cry again when I'm done.  But I'm kind of in a stupor as I type.  No, you know what... it's not a stupor.  It's answers to your prayers.  Underlying throughout this whole day has been a peace.  I honestly can only explain it as that peace that passes all understanding coming only from God.  He is everything in this situation.  He knows the beginning from the end, and I WILL trust Him no matter what comes my way.  He gave us this precious girl and has taken her back.  He can do that and we will give her back to Him and thank Him for the wonderful time He gave her to us.  I am not just saying words, I feel this truth deep into my soul.  God is in control.  To God be the glory for this beautiful little baby girl He shared with us!

It will be hard getting back into life after being so consumed 24/7 with Cayla and her needs.  God will give us all the strength to get through each day though.  I don't look forward to readjusting to life without her.  Samuel was really coming around and losing his inhibitions with her.  He was really feeling comfortable holding and handling her without feeling like he was hurting her or something.  He feels he should have spent more time with her, and Lowell and I keep second-guessing every decision we've made in the last week that maybe could have prevented it.  Please pray for us to not go down these destructive paths of "What if I'd..." or "Why didn't I...".   We know so many of you are praying for us and we thank you for that so, so much.  It's those prayers that have got us through this day already.  Samuel went ahead and went on the bike ride with the teens and others down the Greenway Trail this evening, and is down at the church cooking hotdogs at the bonfire.  I'm glad that was tonight.  It was good for him to get away and do that today. 

I am done talking/typing.  God is still God in our lives and will never change or alter in any way.  It's that steadfastness, faithfulness and compassion of God that is our strength.  If He's not been part of your life, don't wait any longer.  He's lovingly waiting for each of us to respond to Him and realize our need for Him.   He is a comfort that is unexplainable.  Thanks again for the prayers and support.  Love to you all.

She found her thumb for the first time. 



Samuel and Cayla bonding



Daddy getting Cayla to laugh.  The only time we were able to catch it on camera.



Dr. Magnuson, pediatric surgeon

I wasn't sure what to expect at the appointment with Dr. Magnuson last Thursday, June 14th.  He pretty much explained what all is going on with her bottom.  I had no idea, just that she'd need surgery, as Dr. Stewart said... "to move butt".  That's all we'd been told jokingly by him and nothing said by anyone else.  We weren't even sure what he meant by that.  So, a visit with Dr. Magnuson was very enlightening. 

Like I said, I had no idea what was wrong.  He said that the connecting piece between the bowel and anus was not in the right place and was most likely causing pressure to build in her bowel causing bacteria to grow.  So, when I told him about her diaper rash that is causing her to bleed and look bruised, he said it's all related to the problem he will need to fix in surgery.  The bacteria build up is apparently causing the problems with her skin.  If we can't get it under control in the next couple of weeks, he will have to put a colostomy bag on her until surgery.  Part of the problem is that connecting tube is being stretched since it's not in the right spot, making it smaller.  There is no muscle at the opening to control it, so this explains why we get sprayed when we lift her legs while changing her diaper.  The pressure is too much especially if she coughs, cries, sneezes, or hiccups.   There's more details I could go into, but I've probably said more than I should. 

The bottom line (pun intended) is that he will close up the current hole, move the tube over to where the muscle and everything else is set for it to be, open a hole there and we're good to go (pun intended).  I don't know, this is not the nicest subject to discuss publicly, so I'm throwing in some light-heartedness to balance it out.  Not trying to offend anyone.  :o) 

We will have to go back every 2 weeks now to see Dr. Magnuson so he can observe how things are progressing and determine what needs to happen while waiting for surgery.  He said he would have to talk to Dr. Stewart, her heart surgeon, as to when to do this surgery.  She has to be fully recovered from her heart surgery since she will be leaning and propped up on her chest cavity for a minimum of 3 hours.  I don't know when any of this will be now.  Initially we'd been told this surgery would be at 6 months old, and so Dr. Stewart said that he would put at least 6 weeks between surgeries for adequate healing.  That meant her heart surgery was to be in mid September and the bottom surgery would be in November.  All we are hoping for and praying for is that they can both somehow still be during 2012 to both be under this same deductible. 

Our last bill from CC said we needed to pay $62,000 by the end of June.  The bill only had insurance accepting to pay $22,000.  This isn't correct I hope, and Lowell is trying to sort out why it says insurance isn't paying for many of these things.  Just more ways to trust God.  The whole financial part of this process is stressful for Lowell especially and causing more dependency on God to take care of us and provide a way for us to pay whatever we have to pay.  God's been so faithful so far, I don't see Him stopping now.  :o)

We have a beautiful baby girl.  I still can't believe it at times.  God has been so good to us!  Thanks again for the prayers and support.  Oh, and by the way, could you pray for Cayla tomorrow, Thursday the 21st, as we take Cayla in to her pediatrician for her 2 month immunizations/vaccinations.  Not anticipating this to be a happy day.  We'll see.  I'm not even sure how many shots she'll need tomorrow.  Thanks again!  Gotta run... it's time to feed Cayla again!!  :o)

Pictures

Sweet dreams...  Still only been able to get her to smile maybe twice outside of sleeping. 
Neither of which I was there to see.  She smiled for Daddy and Samuel.  The day will come.  :o)
OK, I have to now add that this afternoon she gave me 2 big smiles!  The day has come.  :o)

Thinking about going home tomorrow for the first time... ;o)  This was on Sunday, May 20th.

Nurse Mary Lou came by to say goodbye before we were discharged Monday, May 21st.  She's so tiny and petite and so helpful, sweet and caring. 

Cathy, a wonderful lactation nurse came by to make sure I was set for going home to pump my heart out!  She even called me at home later that week to check up on me.  Such great people. 

Rosanna, my Amish friend came by to say goodbye.  Her husband gave me such a clear testimony of being saved and born again and wants to reach other Amish who don't really know Jesus Christ personally. 
She said she had no problem with getting her picture taken.  :o)

 

Daddy bought her a little going home present... she's so excited about it...



Little Cayla just had all the sticky monitors peeled off her belly and is not happy
even though it's a great thing to have them gone.  She'll appreciate it all later, I'm sure. 




Grandma with a ready-for-home Cayla Joy    :o)



First time outside in the fresh air waiting to get in the car to go home! 
May 21, 2012



First time in her car seat.   Didn't really work well with the cast on her leg, so we had to "jerry-rig" it. 

Arriving at home.

Enjoying her bouncy, vibrating, musical seat from Aunt Cathie! 




First bath at home.   Didn't really care for the washcloth scrub-down... Can't win them all.



She is such a Daddy's girl.  He can calm her down way better than I can. 
She will respond to his voice more than mine at times, but  I'm not bitter or anything.......  ;o)




Two sleepy-heads.  We're all a little on the exhausted side.  :o}




Little dress that jumped in my cart at Wally World... She's so cute.  :o)   All ready for her 1st Sunday at church (had to try it on after her bath on Saturday).  We never made it that Sunday though as she ended up in the hospital by that night, May 27th.



The little peanut... looking like my mom a little in this picture.





The paramedics had just put an IV in her foot and were ready to take her out and to Cleveland Clinic.



I could've just held her in my lap... it would've been so much lighter and easier to lift her into the ambulance... 
but they wouldn't listen to me... :o}

 

My accommodations in the PICU in her room.  The bench worked fine and wasn't too bad to sleep on.  Free lodging and meals provided since I was pumping.  We checked in around 11pm Sunday night and Monday morning, a gluten-free breakfast was delivered to our room.  God is so great to work out a "small" thing like that, but for gluten-free and on a budget, it was a huge thing!

  

On antibiotics because her white blood cell count was really high, but every test they took came back negative.  So  if it was an infection, they couldn't trace it and had no idea how it got there.  Lots of unexplained events that week.  This was her 3rd unexplainable "episode". 

 

Tuesday night Lowell, Samuel and my mother-in-law came up,
 and Lowell took this picture of the sun setting on Lake Erie from the roof top pavilion. 

 

Home again and loving life in the bouncy seat! 



Grandma Pat made Cayla this beautiful cocoon! 

Our family of 4!  We're all a little tired...

Some of the beautiful dresses Cayla has been given!  The yellow one is from our Pastor and his wife.  So delicate and soft!  The next one is from Ginny Klein from church who really did find a most beautiful dress complete with shoes!  The middle one is from Terena and Janice, my sisters in Canada.  So, so pretty with all the layers underneath too!   :o) The little pink jacket and flowers is from Tom Hayhurst, one of my favorite people at church!  He did a smashing job picking this out, it's beautiful Tom!  The little green one is a dress I found in my Grandma Brooks knitted baby things.  It's a dress she smocked herself and Cayla will get to wear it.  She put a big hem on it to make it last!  There's been more sent, but when my dad and Pat dropped in Monday night, these were the closest ones.  I hope I don't offend anyone by missing a dress.  They are all so beautiful and I so appreciate all the gifts people have sent and dropped by!  We are blessed indeed!  :o)

Cayla in one of her favorite positions. 

Big bro... Lil sis      Love it!

 

The little snuggle bunny.

 

Two peas in a pod.



Mommy time while feeding through the NG tube.

 

Her ultimate favorite position.  She turns over and curls up on her side, head back and hands curled in front of her. 
She's such a cutie.  :o)  Yes, I'm quite a bit biased. 

 

Heading down to her first Sunday at church. 



Got to see my brother John and his family

My brother John and Lisa and their 4 children, Ashlyn, Caiden, Collin, and Colten all got to come vistit last week!  Have never seen the 2 youngest, so what a treat!  I miss living near them in Pensacola.  Sigh.  Lisa, even though she has 4 to keep up with, pretty much waited on me hand and foot!  She never stopped the whole time she was here.  She did dishes, was constantly bringing me things I needed with Cayla before I even realized I needed them, washed and rewashed all my bottles and syringes and parafanalia all day, did laundry, helped with all meals to the point where I felt like I wasn't even needed.  She was such a blessing to me!  She nursed Colten while I pumped and we had great talk times.  :o)  She's such a great listener as I cried through the good and bad emotions, feelings and struggles going on inside me.  God knows what and who is needed at just the right time.  I am blessed to have her as my sister-in-law.  Thanks to all of them for such a fun refreshing time together albeit it was short, but maybe that's all for the best.  I don't think Lisa and John could have kept that pace up for long on their "vacation".   Samuel had a blast playing with all his cousins!  They followed him around like the Pied Piper.  He will miss them greatly!  He was so good with them, setting up and playing cars with Collin who couldn't get enough of the cars, and playing legos with Ashlyn and Caiden and then racing MarioKart on the Wii.  :o)



Samuel, Ashlyn and Caiden




The whole gang   :o)




Lisa and Colten

 

Samuel, Ashlyn and Caiden with the Legos





Colten

  

Lowell trying hard to beat Ashlyn and Caiden in MarioKart

 

John and his boys