Psalm 32:8....

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you" (NIV).......

"Don't ask GOD to direct your path if that's not what you mean....when he shows you the way to go don't ignore it... I learned that today. I hear you LORD." 

This is what I posted as my Facebook status yesterday after leaving the hospital for what we thought would be a day of pre-op appointments for Mylah. We arrived at the hospital for our 8:45 a.m. appointment. As usual she was weighed and measured. Initially, we were told that she would have another echo cardiogram but that she would have to be sedated. I was really worried because Mylah hasn't had to be sedated for anything thus far.  Right before her echo we were told that sedating her wasn't something that her cardiologist wanted to do. What a relief! Although, she tossed and turned throughout the entire procedure she was fully aware of what was going on and she made sure that we knew how upset she was!  She also had her usual EKG. During her cardiology consult we were told that her echo images were pretty much the same. No closures of the holes... so nothing would change the plan that we had for surgery. We were given a list of other things to do to prepare for her Thursday surgery; labs, pre-surgery check in, and we would meet the surgeon who would do the pulmonary artery banding (PAB). 

 

Mylah was pretty irritated the entire day. She had been poked and prodded on since that morning. Our last appointment of the day was to meet her surgeon.  Our family and friends had been paying for this person. The one who would operate on Mylah. We wanted the person to be GOD fearing, compassionate, understanding, and most of all someone who would treat Mylah like the precious baby she is. 

He entered the room where we waited; waiting to discuss what would happen during Mylah's Pulmonary Artery Banding. How would he operate? How long would it take? What was the estimated recovery period? That's what I wanted to discuss. 

 

He wanted to discuss options..... I thought "Options?" I thought we'd already made our decision. I really wasn't in the mood to discuss options. I didn't want to make anymore decisions! He began to explain... I heard the words "surgery", "banding", "o2 levels too low", "not effective", "open heart-full repair", "nothing at all"... 

 

I felt like we were back at square one.  

 

Mylah's last clinic visit showed her oxygen levels in the low 80's and it took a while to get there I remember. The surgeon explained that because she was already low and the banding was something that would make her levels lower, he felt the pulmonary artery banding wouldn't be effective for Mylah. It wouldn't help her any. So we had 2 options; do nothing... or full open heart surgery to repair all the defects.  When we decided on the PAB surgery we knew that Mylah would eventually would have to undergo open heart surgery to repair the holes in her heart, but we wanted her to have time to get stronger & gain a little more weight.  Now we needed to make another decision.  You could tell that all the energy had been sucked out of the room. It was a complete shock for everyone. Mylah's Walk With ME nurse Kim spoke up, because she knew what we were thinking. 

I cried... mentally, I prepared myself for the PAB. Although it's still a surgery, I was confident that Mylah would be able to endure it better than the full repair. Now the plans have changed. What's so funny is that as he was explaining the options  and discussing the details, all I wanted to do was say "Thank you". I wanted to thank him for being so honest and upfront. I was so confident in the fact that he seemed so confident. He acknowledged Mylah's Trisomy 18, but he didn't speak about her as if she wasn't there or wouldn't have a chance to make it. He didn't try and push a decision on us.  He spoke of her like a normal baby; that's what I've been wanting for her.  He didn't rush us to make a decision and made sure he let us know that the decision was OURS and that he would support us either way.  I thought to myself. He's who we prayed for. This is who GOD has sent to Mylah. He is so different than other doctors we've seen. It's just something about him. I'm not really sure what it is, but I don't feel apprehensive about him.  I cried because I was scared, not because I didn't know what to do or how we should proceed. As he spoke about fixing Mylah's heart I knew that we would still continue with the surgery. To come all this way and do nothing wasn't an option.  I still needed a day to collect my thoughts though, but my decision was made right there in that room.  

 

Mylah will undergo open heart surgery on Thursday, July 5, 2012 at the University of Michigan C.S. Mott Childrens Hospital in Ann Arbor. I ask that you please pray for her, & her recovery. Pray for Juwan and I. Pray for our families, pray for Dr. R. Ohye -Mylah's surgeon, pray for all the nurses, anesthesia staff, cardiologists, anyone who will have contact with Mylah. Pray for all the other families struggling to make a decision, or those whose children are at the hospital. Pray for all those dealing with a sick or disabled child. Pray for all the mother's who've been given a Trisomy diagnosis. 

 

Maybe the decision we gave for the PAB wasn't GOD's, maybe it was ours. Maybe he sent us signs and we didn't see them or didn't pay attention. But when the doctor walked in the room and said the things he said I knew immediately that this was GOD's plan & he showed me that HE is in charge so I've let go & I'll Let GOD......