A verse for our lives right now

"Peace I leave with you, my peace I give unto you:

not as the world giveth, give I unto you.

Let not your heart be troubled, neither let it be afraid."

John 14:27

I read this morning John chapters 14-16 to just soak up everything it says about the Holy Spirit, our Comforter.  So encouraged!  I read John 14:27 and then kept reading.  A few verses later, I went back to 14:27.  I continued to read the chapters, but kept going back to this verse in particular.  I love the peace He promises, and I love the reference to the heart.  This verse is for Cayla too.  This peace is only from God.  I do not know what the outcome will be for Cayla, but God does.  That gives me peace whether it means she'll be here on earth growing with us, or in Heaven perfect in the presence of God.  I just had to share this verse.  It has been a great boost to my spirits today! 

I had a great hour and a half talk with a friend last night that I've known for over 30 years.  God knows I needed that talk!  She lost her first child an hour after he was born due to chromosome 13, one of the options for Cayla.  How God can use something so painful years later to help someone else is wonderful!  It was great to hear her story again of God's grace from a new perspective and for her to remember a special little one that God gave them.  Praise God for that little life that was here an hour on earth, but is still making an impact 11 years later!  

I still plan to keep going back and reminiscing about events, conversations, stories and more over the next few weeks.  I just want to remember what this time in our lives was like for the days ahead when I can't quite remember.  I'm sure some of it might be boring to read, but it already feels good to write this all out.  I will of course also be posting current news, so stay tuned.  This whole blogging thing is new to me, so bear with me.

Thanks for all the encouragement!  I've tried to respond to your posts on the blog, but nothing happens when I hit "reply".  Maybe I'll figure this out eventually. Thanks again and may God give you His peace!!

Prayer Request for this Wed. 2/8/12

Good morning!

We - me, Lowell, Samuel and my mother-in-law, will be going to Hillcrest Hospital in Cleveland at 1pm on Wednesday to meet with Dr. Rajabi again, but this time in his hospital with all his equipment.  He will do another more advanced ultrasound and more that I won't know until we do it.

My main prayer request for this Wednesday is the amniocentesis testing.  They are needing to get a sample of the amniotic fluid to do chromosomal testing. They usually do this test earlier on in the pregnancy when the baby's smaller which means there's more fluid and less baby, whereas now at 27 weeks, there's less fluid and much more baby. I am asking for prayer for Cayla's protection during this process. There are stories of problems caused from that needle hitting the baby in extremely sensitive, developing places.  Just makes me nervous. God is ultimately in control, but please pray and ask for her protection.

We are "late" in doing this because of insurance.  Lowell's insurance with his new job did not start until Jan. 5th. So all these ultrasounds and tests are going on later than normal in the pregnancy.

I have to say though, that a huge comfort to me, whether it should be or not I don't know, is that we are going to be at Cleveland Clinic.  People come from all over to see these doctors, and it gives me comfort to know that these are the doctors that are going to be taking care of our precious little Cayla Joy. We will be at Hillcrest which might be their pediatric branch.  Not sure what Hillcrest is.  Could just be a regular hospital, but I just feel such a sense of peace about being here with these doctors.

Also, my 16 year old son Samuel is taking this so well, but just remember him in your prayers too.  He struggled a bit this weekend with God finally giving him a sister, and then dealing with the thought that God might take her home.  It's all about perspective.  He is learning to develop that all encompassing trust and peace from God when we completely surrender trials to Him.  It's easier for me to trust God right now, and I don't want to forget that he is still at a crucial age to where God can become so real to him or misunderstood. 

Thanks for your prayers and support!  We serve a mighty and wonderful God!

A little background info

Thanks for the prayers and support!  We are blessed with technology available today! 

My husband Lowell and my son Samuel and I have now lived in northeast Ohio for about 4 and 1/2 years.  This where Lowell is from and his family is here.  Our son is 16 and it has been 17 years since I was pregnant.  We owned a local Christian Bookstore here in Ashtabula county and had to close the doors at the end of July 2011.  I could not imagine what God was doing at the time.  I did not realize it, but 2 weeks after we closed, I became pregnant.  I don't think pregnancy anymore... I just don't go there since it's been so long.  I've not had miscarriages that I know of and I'm 42 and my husband is 51.  I thought that I had cancer since my mom had cancer in her 40's.  I wasn't feeling all that great, was sleeping all the time, felt something hard in my abdomen, and occasionaly had pain there too.  I also have Celiac Disease which mimics pregnancy symptoms perfectly, so I just thought I'd eaten something with gluten.  It wasn't until October 20th that my husband put all the pieces together and asked me if I thought I could be pregnant... Let's just say we had a good laugh over that.  As I was laying in bed that night, I kept thinking about that and everything that was happening.  I told myself I'd look to see if I still had an old pregnancy test in my bedside drawer and take it in the morning.  So I did find one, took it and up came a big plus sign.  I looked at the experation date, and it said June of 2009. Well, after the shock wore off, I thought, I can't base a life-altering thing like this on an expired test.  Had blood work done that day and yes, I was pregnant.  What an amazing feeling!  I cried, then cried some more... tears of joy mind you.  I'd told God when we were married that 6 children would be fine, or more if He so desired and after 16 years, I only had one child. I wasn't sure how far along I was and was told maybe 6-7 weeks, but not sure.  I found an OB/GYN and set up an appointment as soon as I could, and found out that week that I was actually 13-14 weeks along.  What a shock!  Actually a good shock since I "missed" my whole first trimester. 

Well, after we had closed our store, my husband had found a job in customer service at Ken Forging in Jefferson, OH. He didn't start that job until Oct. 3rd which meant we had no insurance until January 3rd. So after my initial visit, I waited until January to go back to see the doctor.  I had my blood work done and went for my ultrasound the next week and saw the doctor the next week.  At the ultrasound, I was on the table for an hour and 15 minutes while she took close to 90 pictures.  I thought that was a little odd, but I am older, and I have no idea what they do now-a-days.  Apparently she found a problem with her heart then but of course was unable to say anything.  I went to see my doctor and she was very evasive and told me that she'd like me to see the specialist that comes here every other week from Cleveland.  Well, I had the wrong Friday in my mind and missed that appointment and had to wait 2 weeks and was able to go this past Friday, Feb. 3rd.  This series of ultrasounds led to a talk with Dr. Rajabi afterwards where he told us the news about Cayla Joy.

Well, I'll have to pick this up later.  It's late and I'm tired.  Stay tuned. :o)

Welcome

Here's 2 pictures of our precious Cayla from this past Friday's ultrasound with Dr. Rajabi.

I was going to buy a journal and write the story of Cayla Joy, but then thought I'd set up a blog instead.  So, here we are.  I'm ready for a nap after trying to figure out how to set this up.  But onward we go.

I am just going to start where we're at now and back track the past months at a later time. 

We found out this past Friday that Cayla has a pretty severe heart defect.  It's called Hypoplastic Left Heart Syndrome.  The left, and primary pumping side, is extremely underdeveloped.  The specialist, Dr. Rajabi from Cleveland Clinic, needs me to have an amniocentesis test done this Wednesday the 8th in Cleveland to determine the cause of this heart defect.  It could be caused by a chromosome imbalance, (not good) or it could just be a congenital heart defect all on its own (much better). The sample of amniotic fluid will determine the cause.  It takes 10 days to complete the chromosome test.  There are 3 chromosomes that could cause this problem, #13, #18, or #21.  He said the 13 and 18 usually result in death either before delivery or shortly thereafter.  There are babies that have lived with the 18, such as Rick Santorum's little 3 and 1/2 year old, but that is extremely rare. The 21 is Downs Syndrome, which would be ok, just adding another problem to her heart problem, but still ok.  So... we wait to find out in 2 and 1/2 weeks.  The importance of the cause determines what happens these next 3 months.  If it is a chromosome problem, they will see me at delivery.  There is nothing they can do.  If it is not, they will run an intensive series of tests and ultrasounds to gain as much information about the heart as possible before birth to determine who and what needs to be present at birth.  She will need surgery within the first week of her little life and then again at 3 months and at 2 or 3 years old, I think.  She also has a club foot, on the left side and there might be other problems on her left side.  This is apparently easily corrected with today's technology. 

Here is a link to a website that explains more if you're interested to find out more. http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome

There's so much more to say, but the most important thing of all is that we have a precious gift from God that we never planned on, but He has seen fit to give her to us at this stage of our lives.  I don't even pretend to understand this, which would be trying to understand the mind of God, but I can accept it whole-heartedly because I know the Creator.  She is fearfully and wonderfully made by God, just as He planned.  Who am I to argue with His purposes?  God will get all the glory for this precious little life He has chosen to create.  If He decides to take her back after a short time with her, that will be a hard pill to swallow, but it will be for His glory.  I am obviously praying that He decides to let her live even though it will be a tough life. God is in control of it all and knows what His purpose for Cayla's life is. I actually feel honored that God is trusting us with this precious little life who will obviously need much care over the years.  You know, He could have the doctors see all this and then choose to heal her. Who knows.  We just get to wait, trust, and rest in Him and His promises!  To God be the glory!