A long 48 hours..

It is amazing all the emotions that one can go through in 48 hours...

Monday Morning: I was feeling great, I always feel a little rushed to get out the door with a baby...and trying to have my stuff put together. But, I did it...My mom graciously offered to go to the appt with me on Monday morning, we really thought it was going to be nothing, but Josie always seems to require multiple outfit changes when we  go to the doctor (not sure what that is about) so I was grateful for the help.

Mid Monday Morning: Josie is a trooper, going through the first tests with no complaints, playing with Sophie the Giraffe, the Doctor comes in listens to Josie's hearts, shares that he hears the Heart Murmur that she was sent her for, but believes that it is just a minor murmur, but suggested that while we were there, we should get an ultrasound done on her heart...So we sign some more papers, and are taken into a ultrasound room, where Josie lays on a warm blanket, and I try to distract her for the next 30 minutes, while the ultrasound is completed. My mom called Andrew before his break was done at 12:30 to let him know that we are still in the midst of testing, but that we would call him at his next break. I knew in my heart that the Doctor/Tech had found something...You could just see it in the way, they acted. At 12:35, Josie had enough! She was hungry, and tired..and started crying. The Doctor understood, and called quits on the tests.  The doctor left the room, and allowed for me to dress Josie and feed her, in a matter of 15 minutes she was our happy baby again...

So when the Doctor returned to the room, he shared with us that Josie has a rare heart defect...he shared more about it, but then he says, in order to repair it, it will require open heart surgery...My my eyes flood with tears, I look over at my mom who is bouncing Josie in her arms..and I am in shock, how is my perfect baby not perfect! For the next 20 minutes, I have no idea what the Doctor is saying, I think I took Josie back into my arms, while my mom wrote some notes, and hugged her..

My mom and I had huge plans to hit up the Qdoba in the children's hospital after the appt, but when we walked out of the room, I was thankful that I was still walking...We drove home, and sat, I could not get a hold of Andrew on his cell phone until 2:30, and I was not going to have him paged from the office, because that we cause him to alarm more than he needed to, so my mom and I sat and waited..Josie slept in her room, and we stared at the walls.

2;30 came, and I called Andrew...I said, I am not sure you want to hear the news over the phone, so he left work immediately...We met at the door of our house...and fell into each others arms..It is moments like those, when you are so thankful that you know God has brought you the most perfect teammate to navigate life with..

The rest of the night was spent sharing with our family, and loving on Josie.

Monday night we really did not sleep..Josie either, and when Andrew woke at 5:00 am for work, he found me lying next to Josie's crib, wrapped in her blanket. I crawled back in our bed only to feel like I needed prayers, and that is when I wrote and shared with friends...

Tuesday the heart doctor called back to say that the ultra sound with sedation for Josie is scheduled on March 11, when I was on the phone I asked the nurse if the Doctor could call my husband and explain Josie's situation since I was too emotional to take it all in, she said the Doc would do even better, and was willing to meet with us last night.

I do not know how Andrew got through the day at work, Andrew is amazing like that...He is stronger than I can dream of being...I spent the day at Sara's (sister -in-law) thanks for the lunch, and couch to sleep/cry on... I picked Andrew up at work ,and we headed to the doctors office....Dr. Schneider met and talked with us over 40 minutes. He shared that the defect of Josie is not the rare thing, it is the location of the defect. We talked surgery options, and he really believed it was in our best interest to stay in GR. He shared that there are 8 pediatric heart surgeons in the state of Michigan, and Dr. Marcus Haw is #2 in experience. The #1 doc is in Ann Arbor, but he probably would not even perform the surgery, he would have a student do it, while he observed since this is not such a complicated surgery, it is just a rare spot. We shared with him our concerns, he heard our hearts, and both Andrew and I walked out of there feeling pretty confident.

Details:
*March 11 is Josie's ultra sound with sedation, she has to be without food for 8 hours, for my peanut, this is going to be hard! Pray for her already, that her midnight feeding that night, will allow her to last until after the appt. We need to pray for a miracle here!
*Surgery will most likely take place in late March / April. The doc did not believe that there were any advantages in waiting.
*The part of surgery of repairing the defect will take roughly 90 minutes, but the whole process of it, will take a whole morning + a bit more..
*Josie will be in the hospital for aprox. 1 week.
*Josie started her heart medication yesterday, and she took it like a trooper!
*We need to keep Josie healthy for surgery, so we probably will not be out and about much with her.

I can write this today, with only a few tears, which I believe accounts for the prayers, that are being spoken on our behalf...Thank you..

Yesterday, we received a lot of love, some of the words, that were spoken over us...

"God is stronger than all our fears and hurt"
"Josie is a warrior, she is going to live an amazing life, and be a stronger person"
"I have put Josie's picture on my desktop, to remind me to pray for her.."
"Lord, Allow Sarah and Andrew to trust you more, than fear the situation that faces them..."
"I have complete Faith that God will heal Josie"
"I am storming Heaven's gates in prayer for you!"
"My way is better than yours. Don't try to figure out what is happening. Simply trust Me and thank Me in advance for the good that will come out of it all. I know the plans I have for you, and they are good. "

_____________
**Francesca Battistelli- Strangely Dom

(a portion of the lyrics)

"I don’t know I don’t know

What tomorrow may hold
But I know, but I know
That You’re holding it all
So no matter what may come

I’m gonna fix my eyes on all that You are
‘Til every doubt I feel
Deep in my heart
Grows strangely dim
Let all my worries fade
And fall to the ground
I’m gonna seek Your face
And not look around
Til the place I’m in
Grows strangely dim


Thank you for these words, and many of the other words and prayers that you have shared, we feel them. I believe it was your prayers, that allowed for Andrew and I to sleep last night.

Please continue to pray for:
*March 11
*Wisdom of the Doctors, the doctors are going to consult on Josie's case together, I left them a picture yesterday of our little girl, I needed all the doctors to have Josie's face in front of them, when they are making big decisions, I needed them to see the face of my daughter, the warrior!
*Sleep
*Insurance dialogue...I am going to make sure to put these Social Workers to work at DeVos :) In helping me navigate the medical system which I know little about..

If you care to do so,  Josie has an e-mail address :) josiesobel@gmail.com / feel free to e-mail yours prayers to her, so that one day when she is big and strong, she will be able to read them. And know what an impact that the prayers were to her healing..

Okay, this is a really long post, but I think the writing of it, has already brought me some healing...

Love,

Sarah (Josie's proud Mama)