Thursday, March 8, 2012

Dr. Stewart the surgeon

What a day!!! We went to Cleveland Clinic this morning, well we left around 10:45.  We got there easily enough and had lunch at their cafeteria.  While we were eating, I got a call from Dr. Lorber.  He said that he was able to hear from the doctor in New York with his 2nd opinion on what was going on with Cayla's heart. He said that it was good news, Cayla's heart seemed to have a strong aorta which means less or no reconstructive surgery during the first operation.  Yay! I told him I was meeting with Dr. Stewart at 2pm and he said that's great and he would go run through all his findings with him before we saw him.  I started feeling better about all this, but I was talking to Dr. Lorber and not completely sure what all he was saying.  But it was great he called! 

At 1pm we saw the genetic counselor.  She explained some things I never knew about genetics, but I don't really think my family history meant too much to her. It was maybe good for her research, but don't know if it will help Cayla.  At one point she asked Lowell if both his parents were still living and he told her no...  I had just introduced her to my mother-in-law which threw her off into a quick state of confusion before he and his mom started laughing.  She thought he was going to be in trouble with his mom, but she laughed and said she thinks he's mad at her if he's not picking on her.  It was cute, in a Lowell sort of way.  :o)  Anyways, we did the whole family tree thing with her.  It's amazing what you find out when you start asking relatives about your family's medical history.

Well, we were out by 2pm and off to see Dr. Stewart the pediatric surgeon.  This man is amazing... We walked in there and he had a picture of a regular heart drawn on a white board and then a picture of Cayla's heart next to it.  He said she has a very unusual heart.  She has a right atrium and right ventricle, but not much going on on the left side.  Well, we knew that, but he said it's odd that her right heart is pretty much like one big heart.  The valve between the right sides covers almost the whole distance of the heart.  And the best news is that her aorta is there, completely functional and will be able to work without needing any reconstructive surgery that first week of life!  They weren't sure at first about the aorta or not because it normally has an arch that comes out and hooks to the left, and Dr. Lorber couldn't see that aortic arch.  Well, it's because her aortic arch comes out the other side of her heart and arches to the right instead.  It kind of threw them off, but it's all still there and seems to be completely functional.  He said that's the big majority of the first surgery, but she still has some other possibilities. The main artery to the lungs could either be too small, too large or just right.  Sounds like Goldilocks... 1.) If it's too small, he'll have to put a stint in to add more blood flow to that artery.  He felt like this was the least likely of the 3 options.  2.) If it's too big, he'll have to "tape" it or put a band around it to tighten it up to slow the blood flow.  He felt like this was the most likely possibility.  3.) If it's just the right size, he'll do nothing.  No surgery that 1st week. :o)  He said the first 2 options are very simple surgery with little risk.  The news just kept getting better!  :o)  Yay!  The 1st surgery is the biggest risk to get through!  What great news.  He did continually add that we won't know for sure until she's born and has an ecocardiogram all by herself as to how things are completely.  This is what he's seeing so far.  I understand that, but am still rejoicing at the possibility of no surgery that 1st week!   She will still need the 2nd and 3rd surgeries that are a more permanent fix to separating the oxygenated and non-oxygenated blood in her heart.  But those are not as severe as that 1st surgery can be.  I really hope I'm explaining this right.  It was a little overwhelming today.  He was so thorough, had just talked over it all with Dr. Lorber, and was so easy to understand.   Anyways, he got paged and had to leave on call somewhere, but was so encouraging.  

I guess I've been keeping up walls to prepare myself for the worst. I've not really allowed myself to envision Cayla making it through the 1st surgery and not ever really getting a chance to be a momma to her.  To love on her, hold her, rock her, nurse her, take care of her and watch her grow up.  I guess I felt that to think that she would come through ok and then lose her, would be hard to deal with if I wasn't prepared. So that's where I let my mind go. On the way home tonight, I felt like some of those walls came down and for the first time feel like this is real.  I really am going to have a baby girl that I really can love, hold, rock, nurse and take care of and even beyond her first year, Lord-willing! It's quite an amazing feeling.  I feel like I really might get to see her grow up after all, and now I'm even more excited than ever to have her and hold her!  It's an exhilarating thought!  Just makes me want to laugh, cry, jump up and down (better not) and rejoice at God's goodness!  I didn't really get a chance to talk much to Dr. Lorber on his quick phone call, but can't wait for Monday's appointment with him to make sure he knows that God's hand is at work and has been along the way! :o)  God did answer prayer and it looks like God did do a miracle in her heart.  It was there all along, we just couldn't see it. :o) 

Nurse Mary Lou, the most wonderful person despite what I felt after her 1st phone call, was so helpful today!  After taking us to our 1st two appointments, she then took us on a tour.  We saw where Cayla would be in the PICU after surgery, if she even needs it... :o).  We met the nurse practitioner who was wonderfully sweet and so reassuring!  Such great people working here. She explained alot about what will happen right after Cayla is born.  We will get to say Hi to her and then not be able to see her for a while.  Knowing that ahead of time is good.  I want them to do whatever is necessary for her survival.  She'll be examined, have her ecocardiogram, poked and prodded and have tests run to determine what really is going on. We were taken to the Ronald McDonald Family Room on 3rd floor.  They have internet hook ups on desks, recliners, snacks, showers, free laundry rooms and all, right there.  So nice.  She took us to 2nd floor to the brand new Special Delivery Unit.  Showed us the Operating Room, the Recovery room for me and introduced me to the nurses there.  She then gave us a folder of information to peruse at our own time.  She gave us delivery valet parking passes.  Very nice.  And she was just overall so helpful and willing to answer any and all questions we threw at her!  What a special lady!

Well, I'm sure I'm missing something, and I'll think of it tonight in bed, but this is it for now.  Going to go take it easy.  Can't go to bed yet since it's only 8:30.  My heart is overflowing with joy and praise to a great God!  He knows the beginning and the end!  What more can I ask for!?!?  Pray with us that God would choose for her to not have to have that 1st surgery.  Wouldn't that be awesome?? :o)  I'm so glad I have a God I can put my trust in and just plain and simple... rest in Him.  I am so thankful for all the people praying for us and especially our precious Cayla Joy!  I think I might actually sleep well tonight! :o)  Here's some of my all-time favorite verses in God's Word! 

Ephesians 3:16-21
That he would grant you, according to the riches of his glory,
to be strengthened with might by his Spirit in the inner man;
That Christ may dwell in your hearts by faith;
that ye, being rooted and grounded in love,
May be able to comprehend with all saints
what is the breadth, and length, and depth, and height;
and to know the love of Christ, which passeth knowledge,
that ye might be filled with all the fulness of God.
Now unto him that is able to do exceeding abundantly above all that we ask or think,
according to the power that worketh in us,
Unto him be glory in the church by Christ Jesus throughout all ages, world without end.