Dr. Lorber, the echocardiogram and Nurse Mary Lou

Well, I'm really tired, but feel like I need to write while things are still fresh on my mind. 

JoAnn Ward, a friend from church, was willing to take me to Cleveland Clinic (CC) today since Lowell and my mother-in-law had to work.  I went for the echo cardiogram with Dr. Lorber.  My appointment was at 9:30am and with traffic and weather we felt we wanted extra time to get there.  Neither were an issue and we arrived at CC at 9am to check in.  The doctor was with another patient, so we waited.  About 9:15, nurse Mary Lou came in and introduced herself.  I was a little harsh with describing her from her initial phone call since she really was helpful.  I look forward to working with her and figuring all this out.  She gave me so much info that was really good news.  So, sorry Mary Lou for my bad first impression on the phone... I pretty much associated her with having to admit that this is serious and we are not going to have a normal baby and will need lots of help, including help from Ronald McDonald House whether I want it or not.

One thing she said was that CC will provide me gluten-free, low carb meals for free if I pump and try to nurse while staying there!  I thought there was no way I'd be able to nurse with everything going on, but she said they really want Cayla to nurse as much as possible since it will help her so much more.  I thought that was great that they actually pushed nursing since it seems so many times formula is just handier and seems to be the norm anymore.  So...  yay for nursing AND free meals!  God is providing! 

She also said that Ronald McDonald House (RMH) has a family room on the floor below the PICU where Samuel can come and stay at the hospital with a laptop and do his classes there with me, see Cayla and be part of things if he wants.    He would also be able to sleep at RMH too.  That was good news since that is the end of the semester with exams and all. Not that he'd need to be there all the time, but could come and stay a couple of days and go home for a couple of days.  Very nice. Thanks to RMH.

She also set up some more appointments for me... Cayla's MRI is next Thursday, March 1st.  Then we see the genetics counselor at 1pm on March 8th, Dr. Stewart, the pediatric heart surgeon, at 2pm to hear what he thinks about Cayla's condition and what he plans on doing, and then a grand tour of where we'll be in CC.  She's going to introduce us to the nurses that will train us on how to care for Cayla when we bring her home.  We'll go to the RMH and so on.  It's an adventure really.

It wasn't until 10:20 that we were called back. Dr Lorber's "fellow" as they call the doctors that are studying under the specialists, Dr. Rao, spent a good hour trying to get the best pictures of Cayla's heart. She was curled up with her back up not allowing them a chance to see exactly what they wanted.  She did move a little and they were able to get a few more pictures.  Eventually Dr. Lorber came in and did some looking too.  He kept saying things to Dr. Rao like, "I don't know what that is," or "I've never seen anything like that before."  I wanted to interrupt and ask if that was a good or bad thing, but didn't want to distract them. After all their talk and pictures, he started trying to explain things to us.  Good luck with that.  :o) He kept throwing in big medical words and phrases that we couldn't understand.  He did draw a picture and explain that Cayla's lower left chamber of her heart was too small to be functional at all.  The lower chambers do the pumping.  He went through what has to be done to the right side of the heart for it to do all the pumping.  I really shouldn't even try to explain what he said, so I won't.  I did finally ask him what her prognosis and survival chances were in his opinion at this point.  He said that Dr. Stewart is one of the best pediatric heart surgeons in the nation which is a great thing.  Yay!  He said that the whole cardiology branch at CC is the top in the nation.  As a whole, they have a higher survival percentage than anyone else.  Dr. Stewart is a big part of that success.  Dr. Lorber said that surgery is definitely an option for her and feels that Dr. Stewart can do the surgery needed to get her through the first crucial week. He said her chances for that surgery are around 80%. Then he said the chance of surviving the next 2 surgeries is about 95%.  He will still need to know more though.  He called that afternoon to tell me that he will send the pictures of her heart to a colleague of his in New York to get his opinion on some things he had never seen.  Then he wants me to come back in 2 weeks again and see it all again.  (So blessed to have insurance...)

Here's what I want everyone to pray about.  Dr. Lorber is one of the 12 cardiologists here.  Out of the blue, he made special note to tell me that when I come back in 2 weeks, nothing will have changed, nothing miraculous will have happened to make her heart any different than it is now.  I don't know if he saw my "Jesus" necklace or heard us talking about church and such, but I almost felt that he was purposefully saying that miracles do not exist and don't expect one.  He reiterated this a couple of times to make a point.  I do not know what God's will is with Cayla, but wouldn't it be awesome to have God "change" something in her heart before the next meeting?  If it's not what God has planned for her, that's fine, but I can still pray and ask others to pray for Dr. Lorber and Cayla's heart.  I just ask to pray for God's will and that it be His will to not even have to heal that lower, left chamber, but just to show some obvious improvement that would make him sit back and be forced to know there is a God.  I do want to repeat myself that it's God will above all.  He may not choose this right now, but all I could think about as he was repeatedly denying the fact that there is a miracle-working God, was that this man needs to see the hand of God work in an undeniably miraculous way! So, will you pray with me?  I see him again on Monday, March 12th at 10:30am.  :o)  It's in God's hands either way!

So, it's now Saturday night the 25th and I've just typed the last paragraph.  I know there's more that was said and done... Let me think.  He said they would do her surgery a couple of days after birth to run tests on her and let her catch her breath which will also give me some time to heal and be more ready to be there when she comes out of surgery.  She'll have to stay around 2-4 weeks at the hospital, could be more depending on her reaction to surgery.  They'll send her home and we'll have to monitor a 100 things while there.  She will be brought back between 3-6 months for her 2nd surgery.  We do hope that her second operation falls before the end of 2012 so insurance will still cover 100% of it then before it all starts over for 2013.

There's more, I'm sure, to tell, but once again, I'm exhausted and will post more later.  God is so good with how He takes care of His children!  We are blessed.  Thank you Lord!  I have a feeling that these next 2 months will actually go faster than a normal pregnancy.  Oh and my planned delivery date is April 24th, on Mrs. Emery's birthday!  :o)  I also must, must say a huge thank you to my mother-in-law for her willingness to drive us to Cleveland for most of these trips.  Our one car is barely hanging on, but money to fix it or buy a newer one is too scarce right now.  We're not sure how Lowell will make all the trips to CC when she's born either, but so many people have stepped and offered to take us, especially Lowell's mom that right now we can't worry about it.  Thanks to her and JoAnn and other's willingness to be a blessing to us!  Goodnight!