Sunday, May 20, 2012

Our last night (for now) at Cleveland Clinic

It's our last night here.  My time warp bubble is about to pop, and I can get back into my former life again.  Although it will be strictly dictated and scheduled by a little girl I got to know recently...  For the last 3 days, I have done all the tasks associated with feeding and and taking care of the Little Miss Cayla Joy.  I have not done it through the night, but do so look forward to adding that to my repertoire... 

We are so blessed and have so much to be thankful for!  We have a beautiful baby that God has blessed us with.  She is such a trooper and has pretty much just learned to deal with all the monitors poking and digging into her arms and legs as she sleeps.  She won't know what happened when she sleeps tomorrow with them all gone!  She likes to lay still and study her surroundings before she falls asleep.  She wakes up stretching and cooing with an occasional cry, but overall, despite everything, is a very content little baby.  She just loves to stare at us while we talk to her.  I almost forget sometimes she even has problems, she seems so content and normal.  She will just have her little NG tube in her nose until her next heart surgery in September.  She just doesn't have the strength or stamina to suck and swallow the amount she needs to eat.  So pumping her milk in the little nose tube directly to her stomach is what she needs to stay strong and gain weight to be ready for surgery.  I will only have to put her pulse ox machine on her once a day to get a reading of her heartbeat and level of oxygen in her blood for the doctors, but it will not have to stay on 24/7 anymore! 

We are so thankful that she did not have to have the Norwood surgery, just simply a complete miracle of God!  Her aorta is misplaced right where God intended it to be!  That is just amazing!  We would still be at the hospital a couple more weeks or worse if she'd had that surgery instead of just having her pulmonary arteries banded. So, so thankful to what God has already done in her life! 

We are so thankful for Cleveland Clinic and all the wonderful care we've had while here.  You know, I don't think I ever really went into what happened during Cayla's delivery.  The problem was that the spinal anesthetic thing, can't think what it's called at the moment, was not working on me, and they did it twice and neither one worked.  So... when the knife went in, I still felt it.  A freak kind of thing.  Everything was reviewed and done by the textbook, but for some unknown reason, they didn't work.  Within minutes Lowell had no knuckles from me squeezing his hand, and he was telling them to "Just knock the woman out!"  Which they did.  I had so many narcotics and drugs pumped into me in such a short amount of time that I was unable to eat or drink anything for 18 hours after the surgery.  None of it went to Cayla.  I guess I should say that feeling the knife didn't seem as bad after the second dose they gave me, so I thought I could just endure it... trying not to complain or cause trouble... But by the second incision, I thought I was dying and couldn't really talk, yet for some reason they knew I how I was feeling by just looking at my face... OH WELL, all that to say that they have no explanation as to why it didn't take and should in the future.  The nice thing is that the $1,750 anesthetic charge on our bill for that day said, amount insurance pays = $0.  Amount you pay = $0.  So they removed the charges for all that mess of stuff they did.  The 2 doctors came to visit me in the NICU, I guess they want to make sure we don't sue them or something.  All's well. Cayla came out fine, so that's all that matters!  :o) 

We have really felt so well cared for!  Every single day we've been here, a team of doctors, anywhere from 5 to 15, have come by her bed and discussed her stats and what to do for her for that day.  When you have doctors from cardiology, respiratory, immunology, endocrinology, surgery, pediatrics, neonatal, nutrition, and nurse practitioners and nurses all discussing her care, you get way more than a second opinion, you get them all balancing each other out in all their different departments and expertise.  I have felt such confidence in all the care she's had while here.  So, so thankful for that.

We are so thankful for the many, many family and friends that have prayed us through this first step in Cayla's life.  God has done miraculous things because of those prayers.  The social workers and lactation nurses and our case worker have all been asking how we're handling all this.  I love when they ask because I get to talk about my support system of family, of church family, of prayer warriors on fb, and prayer warriors on the blog.  I get to talk about Jesus Christ.  We are so blessed!  Five to ten years ago, there wasn't such a presence of people online with something like fb.  What an amazing thing that is.

I am so, so, so very thankful for my family. Lowell and Samuel mean everything to me and we are all so excited to start this whole new journey together with Cayla joining our family.  God is so good.  I used to tell people that of course I wasn't going to have only one child.  I loved having siblings and wanted Samuel to have them too. I just didn't think it would be so much later that they're both going to almost be raised as only children.  :o)  God's ways are perfect!!!  I wouldn't have chose this, but God did, so I'm ok with it all!  Plus, we live up here where my in-laws are and what a HUGE blessing they are to us!  I am so thankful for extended family!!  They've all been taking care of us.  Can't say enough for my mother-in-law who took me to all appointments and visits but one, out to Hillcrest and Main Campus.  Such amazingly great family that loves us!  :o)

Well, I could keep going, and will at another time, but it's late and there's much to do the next few days.  So, thanks for the prayers and love and encouragement!  :o)