A date has been set ...Friday- June 21

Last week went fairly well, many of our prayers were answered...

1. We felt comfortable with the surgeon...Dr. Ohye  ( I have included his bio here so that you can all get a peak into him)...http://med.umich.edu/cardiac-surgery/patient/team/ohye.shtml

2. Josie travelled quite well...

3. We have decided to move forward with open heart surgery, and as of this morning, we have decided the date of Friday, June 21, 2013...

We appreciate your prayers, as we move forward in our month of waiting...

Love,

Sarah

Headed to Ann Arbor...

I will try to write more later, but as for write now, I am just writing for prayers for a clear direction for our family. When we met with U of M, for a second opinion they do not believe that a heart cath is the way to go, they believe open heart surgery is the best for Josie. To get a better feel for the team at U of M, we are headed to Ann Arbor today to meet with the surgeon.

I ask ( rather I beg of you) to please pray for the following as we start today...

1. May it be black and white to all of us what path we should take...(ie: what procedure and when?)
2. May it be very clear to us when we should be doing this procedure.
3. Safe Travels
4. That Josie is a great traveler today, she did well on our trip to Chicago a couple of weeks ago, but I pray that she can be that great traveler again.
5. And please just pray for peace of our hearts....

Thank you advanced from all of us, including our little feisty Josie!

And we are ....cautiously optimistic

We spent a few hours again at DeVos on Tuesday. This time we took Grandpa and Grandma Sobel along. There is another new doctor at Spectrum that is also from England, this new doctor, Dr. Joseph specializes with Interventional Cardiac Catheterizations, (it is a procedure to treat the heart defect with using a catheter (small plastic tube) that goes to the heart from blood vessels in the legs or the neck.) Dr. Joseph reviewed Josie's pictures, and believes that quite possibly her defect might be able to be fixed through this procedure! Which would be excellent, recovery time is just 1 night in the hospital, and that would be about it! Which would be amazing. The only situation is that they will not know for sure if the they will be able to work using the heart catharization until they are actually performing the procedure...And because this Doctor is new to DeVos, he needs some time for his team to be up and running. Which means that we would have to wait until June or July for the procedure...So it would be a lot more waiting, but the waiting would be all worth it, if this would fix Josie.

As I posted we are cautiously optimistic, but because of this sudden turn in direction, we have been thinking we would for sure be facing open heart surgery since Feb. 27, we feel that it would be in our best interest to get a second opinion, we are heading to meet with a U of M doctor (Dr. Ron Grifka), in a GR clinic, on Wednesday, April 24th

Please pray for us that it is clear decision about the direction we should go...I am thankful for this hopeful news, and I beg for prayers in advance that the Interventional  Heart Catheterization wherever we have it performed is successful!

In the mean time, since we are not sure of the exact procedure date, I am no longer house bound :)! AMEN!  We are just enjoying the joys of Josie being almost 6 months old! She is just a joy, and as her little personality is growing, we are just loving the smiles that she brings us daily!

Newer equipment...

Josie will NOT be having her the heart catharization on Wednesday, it has once again been moved to a date that has not been determined yet....We are still meeting with the doctor that is going to be preforming the heart catharization on Tuesday to hear about his plan for the heart cath...but, he wants to wait to schedule the appt until the new equipment is in...

I think our robust Josie is moving the powers at DeVos to get the most up to date equipment :) Way to go Jose!

So please continue to pray for the team of surgeons, doctors, and nurses as they continue to study J's case, and make the best plan for her..

More tests..more sedation...more waiting...

Doctors would like to have more pictures, so Josie will have more tests (sorry I am blanking on the name of the tests they are going to be doing) they initially scheduled the tests for the 3rd, but we just got a call this morning that the tests are going to be on the 10th now...The test requires sedation for Josie (via IV) and fasting for Josie...BOO! But, both Andrew and I say that it is better that the surgeon goes in with the most information He can..so we understand the reason for the pictures.

So we wait for the 10th...

The warmer weather has helped us, we have been able to get out for some walks, and to see some sunshine! A little of Vitamin D, can go a long way...

Josie is ROBUST!

" Your daughter is absolutely darling...and clearly very robust!"

I had to google the definition of robust, when we got home from our appt. yesterday...but I think it is good that Dr. Haw sees our little Miss Josie as robust :)!

Definition of  ro·bust : (of a person, animal, or plant) Strong and healthy; vigorous.

So the appt. with Dr. Haw went pretty well.
Points from the appt.
1. Dr. Haw was not satisfied with the pics, so we need to do some more pics of Little Miss Josie's heart...The Nurse Practitioners that we are working with was going to be off today, so she will call us on Monday to schedule that appt.  Since, Josie is doing so well that there is no current rush on surgery, it is just easier to do now, since she will not remember it when she is older, and hopefully her heart will go back to normal size....
2. Dr. Haw has only seen the location of Josie's heart defect, one other time, but He did share that how you fix it, is the same as the other locations...He said that if we went to U of M, he would be quite certian that the  Doctor has probably seen it only  1 or maybe 2 times as well...Our Baby girl is that unique and special :)
3. Dr. Haw has done over 7,000 heart surgeries! He eased us with confidence that because Josie is so healthy and robust, that he believes that she will do great!!!!! I have never been so proud of my daughters chubby little legs :)
4. It was incrediably hard to hear the facts about the surgery, the fact that they will have to stop Josie's heart from beating on her own for about an 1 hour, I instantly started shedding tears, How I wish that I could put myself in Josie's shoes....


So the next steps from here....If all goes as planned....
1. More pics ( hopefully we can get these done in the next 2 weeks)
2. We schedulue surgery
3. We have a pre-op visit with the social worker, tour the PICU, and get aquainted with DeVos facitlities.
4. Surgery...
5. Hospital stay of hopefully 5-7 days
6. Josie is on strict recovery for 2 weeks..
7. Josie is on modified recovery for 4 weeks...
and then...hopefully after all those steps, Josie will be on her way to enjoying her first summer, with lots of time in the pool and at the lake....

and so we continue...one day at a time....

Thursday is getting closer...

and as Thursday approaches, my anxiety increases....

please continue to pray that we know if this is the surgeon, also please pray that we hear the confidence in his voice, should he be "the one"...

and just pray for us...pray for peace.....