Miss K Memories - Part 2

We spent the next few days waiting, waiting for her stomach to heal so we could feed her and take her home. Wednesday was day 6 after the surgery and we went in for our morning visit. The NICU has visiting hours in the morning and evening. All the parents would line up outside the doors waiting for them to open. Then we put on a scrub top and washed our hands and went in. We were known by our child's number so for most of the time we were PI "ling liu" which is PI06. We went in that Wednesday morning and the doctors said they wanted to check her heart. They had already done a test and so we went to the B1 to met with the doctor. He told us a bit about her heart and said they wanted to do a heart cath the next day. We did ask if this could be related to Down Syndrome and were told "I saw that baby she doesn't have Down Syndrome." Wednesday evening I went to the hospital with a friend. Stuart stayed home to read (he was in the middle of writing a paper for a class on suffering). Barb and I visited and took lots of pictures.

She looks so peaceful in my arms. That night was peaceful. Thursday, 6 years ago today, we again sat in those plastic aqua chairs but this time we invited Elinda, Nai nai, to come with us. We sat and sat waiting. Around 2:00 Elinda left to attend the weekly prayer meeting and we waited some more. I was tired and so I left around 4:00 or so. We still had not heard anything. I got home and got a text message from Stuart saying it was not good and I needed to come back to the hospital. I arrived around 6:00. It wasn't visiting hours but they allowed us to come in. As soon as we walked in and looked at her, we knew it was not good. She was white and had weighted blankets or so it appeared on her. The tubes that had been out were back in. We sat in the treatment room off the NICU and cried. The Christian nurse we had met came in and prayed with us. We called my dad and work and actually was able to talk to him. We asked if he could please send my mom. That began their day of working to get tickets, pack, and come. Then we called Ron & Elinda to come get us. As we were in the NICU the doctor looked at us and told us to "go home and get ready she is not going to make it". I told her that Miss K was in ShangDi's hands and ShangDi would take care of her. I remember sitting in our living room at 11:00 that night with Ron, Elinda and our Pastor and praying. We went to bed and we did sleep that night. We were up early and called the hospital around 6:00am. She was still living.

We got ready to go to the hospital Friday morning and we got the call from the doctor telling us that the chromosome study was back and confirmed that she has Trisomy 21. We went to the hospital to meet with the heart surgeon. The doctor spoke English and prepared the documents for us to review and sign giving all the risks of the surgery. He knew about the problem she had the day before and was willing to operate. The best we could figure from what we were being told was she had a bleeding problem. I did later read the report and she had a heart failure during the cath procedure.

Saturday evening my parents arrived. They thought they were coming for a funeral but instead were able to be with us for her heart surgery and spend a few days after that.

Monday was heart surgery and after all the other times of sitting in the plastic aqua chairs on the 2nd floor this was not near as long. At one point I heard them call for us and went to the counter while Stuart and my dad were walking. She wasn't supposed to be done yet at least in my mind. I figured they were going to tell me that something bad had happened but they told me she was done. We could go up 2 floors to the 5th floor (if you are reading and doing the math you are probably wondering what happened but four sounds like death and so the hospital does not have a 4th floor). As we went up we saw her being wheeled back into the NICU and the doctor said those wonderful words, "everything is ok".

She spent 12 more days in the hospital. She was covered under my health insurance for the first 30 days so most of her stay was covered, the hospital charity fund paid some and we paid about $330 USD. God provided.

I took comfort in the fact that I know that God is in control. This was not a surprise to him. I know that God is good not by looking at the things around that happen but by looking at the cross.