Friday, May 4, 2012

1st surgery day

We're back in the RMH room and I am finally ready to write at 10:30.  Sorry it's late in coming with an update. 

She came out of surgery looking just like she went in which is a good thing.  I expected her to look worse, but she didn't.  Her nurse said that she also came out of surgery with exactly the same meds and calcium and all she went in with.  She said that is very rare.  They usually come back from surgery with more stuff, but she is doing so well that she didn't need anything more after than what she went in with.  That kind of tells me just how sedated she was these last days if the same meds are strong enough to support her after heart surgery.  That is sad to me to think about.  But, she has her surgery behind her and we are on the road to moving on and moving home.  :o) 

Dr. Stewart came down after he was done to talk to us about everything.  Let's see how I do in my tired, somewhat comatose state, in remembering it all...  He said plan A of just banding the pulmonary artery could not work.  Two reasons... First, the part he had to work with was only 6mm in length.  He possibly could have done it in that small space, except for reason two which is that her coronary artery is coming out at almost the exact same place as this pulmonary one.  So close that if he banded the pulmonary and it moved any, which they can do, it might touch or affect the coronary which would be deadly.  He didn't even want to try it.

So, plan B went into affect.  That pulmonary artery, the artery that takes blood to the lungs, branches off at the end of that 6mm.  One branch goes to the right lung and the other to the left lung.  Since he couldn't band it before it branched, he had to do bilateral banding, band each branch individually.  He said the hardest part of that is to make the banding equal to send the same amount of blood to each lung.  He said it took the longest part of the surgery trying to go back and forth and run tests each time to test the blood flow and get them as even as possible.  Difficult to find the exact spot, he said, but even more time consuming.  He said he felt he got a good feel for where and how tight they were placed.  He said she should be more blue in color now instead of her nice, healthy looking pink she has now.  That means the surgery was successful.

He also said she had little to no thymus gland.  Bottom line on what that means... weakened immune system.  It is really used by the body only in the womb.  But he said if he were a betting man, he is sure she has DiGeorge syndrome which has a broad spectrum from very mild, not knowing you have it, to very severe, life-threatening.  It can cause all sorts of problems across the spectrum.  It is also very common to have a calcium deficiency with this.  Cayla has been on calcium supplements for over a week now and it's being depleted as fast as they can give her more.  This is also what could be causing many of her other problems and deformities like the club foot, the curved spine, the fused ribs, the shortened ribs, the anus, and whatever else I've forgotten or they haven't discovered yet.  So, now we can add a weakened immune system to her list.  It's not like she'll have to be in a bubble, but we will have to watch her and they will tell us more about all this with the genetic doctor after the tests come back in a week.  So, more to be said about this later.

He said he will probably do her second heart surgery, the Glenn, when she's 4 and a half months old to give a six week healing time before they do her surgery on the anus at 6 months old.

So, it's late, her surgery went well, we were able to tell most of the team that went into surgery that there were a lot of people praying for them.  :o)  They all said a huge thank you!  I also found out that since this morning was the Ashtabula County Concerts of Prayer Breakfast at Spire Institute, that the 500 or so Christians there this morning prayed for her!  That is just so awesome.  So many prayers were offered to the throne of God today for our baby girl all over the world that I have to say, God was definitely working!  She went in and came out looking and doing so well.  They are pretty sure they can remove her breathing tube tomorrow!  YAY!!!!  That was Cayla talking. ;o)  They might even be able to remove her central and local IV lines.  The one is crammed on her jugular on her neck.  If you haven't already,  take a look back at some of the pictures of her... She has no neck.  :o)  But they were able by using an ultrasound to anchor and sew down the line into her jugular... talented people. 

Anyways, she is resting well tonight and still pretty sedated although she opened her eyes for a good while tonight and let us look at those beautiful eyes God gave her!  She really is so precious.  I'll close for now even though there's so much more I want to say, but don't have the energy to do so.  I'll try to add some pictures before I go.  But please know that God has heard and answered so many prayers today.  We will pray and keep updating on her progress of recovery.  Love to all who've prayed and encouraged us!

The 15 doctors discussing Cayla yesterday when I arrived.

Cayla Joy her first morning back in the PICU, Thursday.

Doctor Stewart drawing Cayla's heart and explaining the surgery to us yesterday, Thursday.

Grandma brought Lowell and Samuel up Thursday afternoon and got a little Cayla time and loving.

Dr. Stewart preparing me to sign my little Cayla over to him for surgery Friday.

Big brother Samuel and his little sister.  :o)

Samuel and Cayla's hands.  :o)  Makes me want to cry.

Grandma Pat and Grandpa with Cayla before surgery this morning.

Our little family before surgery this morning.

The surgical team taking her away to the OR.

The OR parade en route.

Waiting in the RMH family room for surgery results.

Cayla, right after surgery this morning!  :o)  Our little trooper!

Had a great visit with Pastor and Mrs. Emery!!!  :o)

Lowell saying goodnight to Cayla after a long and rough day!  Good night to all!


  1. Crying, praising and praying! Love you Linda! Talk with you soon! Praying for sweet, peaceful sleep! ((HUGS))

  2. I'm following your blog (old Barcroft friends) and I am shocked at how well you are handling all this and they let you get so close to her! God is good, you are blessed, she is your little sunshine! Andrea (Patterson) Verwys

  3. Cayla, even with all of the tubes and things, is so adorable! I just want to kiss her forehead and talk to her! God is doing great things for and with her. Also, our faith is being strengthened as we watch and hear along with you.

  4. My eyes filled with tears reading your post this afternoon. My heart was touched that our Great Physician over-shadowed the doctor and guided his hands as he worked in Cayla's tiny pulmonary arteries. So thankful for our Loving Heavenly Father who is taking such good care of Cayla Joy. May His peace reign in your hearts every step of the future. Praying you are getting some good rest. Hugs!!!