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.