Monday, March 12, 2012

Last day at Cleveland Clinic until delivery!

Another long day, but so thankful for the great care from all the doctors, nurses and staff  at CC!  Thankful my mother-in-law has been there to take me and sit through almost all of my long appointments.  Dr. Lorber said this would be my last couple of appointments today for any pre-delivery info needed.  Yay!  I now only have my OB appointments every 2 weeks with Dr. Rajabi at Hillcrest.  I do have to go in Monday, April 23rd for blood work the day before I deliver Cayla, but was told I could do that in Willoughby, about 20 minutes or so closer to home than CC.  That is good news for me.  Only 6 weeks left!  Amazing really.  Lowell thinks it will drag slowly, and I can't see getting everything done in such a short time with it flying by so quickly.  We'll see.  I'm dozing off here as I'm typing, so this might start sounding weird... :o)

Well, Dr. Lorber had me as his captive today from 11:30-1:15 on that echo cardiogram table.  As the appointment progressed, he mentioned something about the changes they've noticed in her heart over the last couple of weeks studying her last echo.  I had to say that God may not have changed anything since last time, but has been working all along in showing us what's there, so that her prognosis keeps changing for the better.  He kind of maybe nodded, but didn't say anything and definitely didn't encourage any conversation about God.  I didn't feel like pushing it with him was really that wise, but God knows and can work on his heart. So we'll keep praying for him.  So, being on the table that long, I kept dozing off, waking myself up with quiet snores. Hey, I was on my back, I can't help it.  Cayla was laying spine up again, and he finally had to give me some grape juice to wake her up and have me do toe touches, walk, wiggle and try to work her into a different position.  I remembered when being in labor with Samuel and his heart rate dropped, they flipped me over onto all fours even though I'd already had an epidural from the waist down.  That was fun, let me tell you.  So, I thought I'd get up on the bed  thing and try it with a little shake to get her moving and it actually worked.  When Dr. Lorber came in 5 minutes later, he was pleased with her new position.  He saw something else he had not seen before on today's test.  This is what he wrote on the paper he gave us, "Truncus arteriosus communis with an RV dominant AVC defect."  This is how he talks at times too.  :o)  You just have to smile at him and hope the other doctor will explain.  What he tried to explain to us was that she has a valve that leaks.  Now, that wasn't hard to say, was it?  :o)  I've got to stop giving him a hard time.  He's a really nice doctor, he just can't think outside of medical terms at times.  The translation came from the other doctor. I'm not exactly sure where this valve is, maybe the one at the base of the aortic arch?  Don't know and I guess it really doesn't matter.  What matters is that this will definitely need to be fixed, but at the latest possible surgery.  He thinks it can wait until the 2nd surgery at 3-6 months.  He thinks the leak is mild to moderate, leaning more to mild.  Not major surgery, but something that can be done during another surgery.  So, that didn't seem to be bad news since it's apparently easily corrected. He'd been taking pictures for well over an hour, and I'm thinking he should be done anytime now.  Then there's a knock at the door and it's another doctor.  She comes in and starts looking over his shoulder and pointing and talking about things on the screen.  He starts getting excited and animated and talking in his "foreign" language with her.  He told her that she should see the pictures he got a little while ago when Cayla was in a better position.  So after looking another while, he decides to flip back to those pictures from earlier and off they go discussing and talking in "code" again.  Then, Dr. Lorber gets up, the other doctor sits down and continues taking pictures.  He comes over to talk to us and explain what all is going on.  He had 2 papers with different heart pictures on them and showed us what's going on with Cayla's heart.  Don't ask me to pass on what he said.  :o)  She still has a defective heart.  She can live with it for an unknown length of time.  The long term prognosis is uncertain since the oldest survivors with Hypo-plastic left heart syndrome are only in their late 20's.  Many of which have had complete heart transplants, and he said that that could very well have to eventually happen to Cayla.  They just don't know how long you can live with half a heart and especially only the right side.  Time will tell, and we'll take it one day at a time.  Dr. Lorber said too, that when Cayla's born, all 12 doctors in his department will review her echo cardiogram taken right after birth, discuss it, and together decide on what needs to be done.  I don't know why, but that kind of amazes me that they would go to all that "trouble" to really be able to give Dr. Stewart the best info before surgery so he can be more prepared.  I just thought that was pretty cool.  :o)  He asked if we had any other questions and then asked if Dr.S...... (can't remember her long name) could stay another 10 minutes or so taking some pictures.  So, 20 minutes later at 1:15, we were finally done.  She talked to us the whole time, re-explaining things to us and answering any questions.  Very nice doctors.

I needed to eat next before I could go see the neonatologist.  So we finally got to her about 2:15 or later.  She was in a conference.  I had no idea what she did and why I needed to see her.  But she pretty much told me that all pediatric heart patients, no matter their age up to 21, were taken to the PICU (Pediatric Intensive Care Unit) and not to the NICU (Neonatal Intensive Care Unit) since that's where all the heart equipment and doctors are located.  And her job was to be extra alert to a newborn's needs on the PICU.  Not that they are not capable on that floor, she's just more specialized about newborns and their particular needs with feeding tubes, meds and all.  She said once Cayla has been done with all their testing and even possible surgery, they step in to religiously keep her on a 3 hour schedule and make sure no one interrupts or wakes her while sleeping so she can heal faster.  She will only be fed breast milk even if I'm struggling, they will use donated milk.  Formula is not an option for her.  So pray I will be able to nurse and pump without too many problems.  I could only nurse Samuel for 2 months.  I don't want to worry and add stress since that hinders the process, but I must admit, it does make me somewhat nervous.  I am just going to have to trust God in this too.  I can say and type that pretty easily, but not letting the pressure to nurse stress me out is going to be harder to do than say.  One day at a time, Linda....... I have 6 weeks to work on this. :o)

So, Nurse Mary Lou then took me back to meet her boss and partner at work, Donna.  Such a down to earth, sweet, sensitive lady, who laughed with me, cried with me in that short time, knew everything that was going on with me, encouraged me, and left me with a big hug!  Everyone I've met has read up on me and knows everything about what's going on before I get there.  I love that.  You just feel like these people really do care about you and your baby.  Makes me want to cry again now.  I feel blessed.

I just have to constantly remind myself that God is in control, and nothing I or the doctors, or the nurses can do will change that.  It was a good day.  I do hope that this is the last trip until delivery, we'll see.  Lowell just brought me a paper that was overnighted to me by UPS.  It's another CC appointment schedule... It has today's appointments on it... Dr. Rajabi's next Thursday... then says I have 4 appointments on Monday, April 2nd at 10:10 with Healthquest, 10:45 with Dr. Velez for pre-op impact, 12:45 for an admittance interview, and 1:00 for a formal anesthesia consult... I don't know what any of these things are.  I'm going to have to email this to Mary Lou since she's the one making all my appointments and told me I was done today, and see what light she can shed on this... Just when I thought I was safe.  At least it has my "procedure" listed as well for April 24th. :o)  Can't wait for that one!  I'm tired again just reading this...  Well, there's more to talk about, but maybe in another post later tonight or tomorrow. 

"I have set the Lord always before me:
because he is at my right hand, I shall not be moved.
Therefore my heart is glad, and my glory rejoiceth:
my flesh also shall rest in hope."
Psalm 16:8-9


  1. It's always wonderful to see an update. Thanks for being faithful for your friends and family far away. Praying for you.

  2. I check your blog daily. Thanks for letting us know how to pray. It seems to me that the more specific info you get, the more encouraging it is! God is so good!!!

  3. Love getting your updates so that I can be praying for all of you. She is already one amazing little miracle. I can't wait to cuddle with her. :) Love you!

  4. Now the blog won't let me reply again to comments, but thanks Kim and Amy. I would probably update it more, but feel like it would be full of boring info... We'll see. I really do enjoy just writing this all out. It's very helpful to me. God is making all this actually seem like she really can get through this and I am encouraged everytime I find out more! Thanks for praying and I will try to be more faithful in writing, knowing you all willing to read and pray! Amy, I didn't know anyone checked this regularly. That's cool and makes me want to share more of what God's doing. Thanks.

    1. I check every single day and I bet lots of friends do!

  5. Thanks Erin! I can't wait to cuddle with her either! :D