This whole experience was so hard, scary, exciting, fun, blessed, etc. It was so great to be able to have those four days with Eden without any of the other kids around but the circumstances didn't allow for it to be relaxing. I wish I could have just enjoyed it! I got released to go home on Friday since I had Eden on Wed. The room Eden was in originally was really small and had only a curtain for privacy, but that is where I planned to stay on a cot. And then that evening she just happened to get moved to a different bay in the NICU where a family was just leaving. The room was very large, had a TV, a window to the outdoors and a bed. What a blessing! Every morning we got to see at least a doctor with his residents. They always asked questions and told us a plan. It was nice to know that even if we didn't see any doctors all day we could rely on at least seeing one on rounds in the morning. At one point, after doing a scan on Eden's eyes they thought she might have a viral infection so they sent out bloodwork for something called the TORCH tests. This caused Eden to be on isolation which required everyone that came in contact with her to wear a gown and gloves. After being examined by infectious disease doctors, it was completely ruled out but since the tests hadn't come back negative, the isolation order couldn't be removed per hospital policy. The reason they ordered these tests was because of a finding on the back of her eye that looked like scars. Now that they don't think it's infection, they are thinking the 'scars' (raised images) look more like lesions (indents). They think this fits well with the fluid in her ventricles and that she may have Aicardi Syndrome. We are just praying that whatever the outcome that Eden is happy and that God's will be done. He has a plan for her life and who are we to get in the way of it! She is going to be precious and wonderful no matter what! Just look at her...she's a doll! God made her just the way he wants her!
When the kids arrived on Sunday we were just going to do a trial run to see how everyone did, but it worked out so well we decided to keep them until it was time to go home (which ended up being Tuesday the 20th). Originally I thought I would be able to stay at the RMH with the kids and Brian but then realized it would be a little drive for me to come over in the night to feed Eden. So I just stayed with her. On Sunday night Brian just took the kids over when it was time for bed. Adah slept on a cot at the foot of Keziah's bed and Austin slept on the pull out couch. There were two queen sized beds so Brian slept on the other. Adah apparently got woken up by Keziah coming in for bed so that was rough, Brian said. Otherwise the night went smooth. On Monday there was a craft hour for the girls but only Keziah wanted to stay. She made a cute reindeer! After some lunch in the hospital cafeteria which consisted of several trips to the bathroom with various children, Brian took the girls back to the RMH for naps and then came back over to the hospital when they got up. We tried to go to the hospital library but it was closed when we got there. There was a book rack outside the door with free VHS movies on it for kids. We picked one out and took it back to our room to watch. We hung out a little while and then after I fed Eden I took the kids back to the RMH to eat supper and put them to bed. I was so overwhelmed by how that place operates. There was a calendar completely filled out with names of families that were coming in to cook meals for the people staying. I was able to feed my kids and not have the burden of finding unhealthy fast food to feed them or the cost! The meal was healthy and there was a ton of it. There was even dessert! Then the kids played in one of the huge play rooms where the kids played with a little boy about 6 years old. I gathered that his mom was in the hospital and he was there staying with his dad. The little boy cried when we told him we had to go to our room to go to bed. We gave him a big hug. I took the kids up to the room and got them ready for bed. There was a library there and I had them pick out several books. I got a few things in place for Brian in the morning and then left Austin with the girls sleeping and went back to the hospital to trade places with Brian. I guess Adah woke up in the night and thought I should still be there since I was when she went to bed. It took a while to get her back to sleep, but otherwise another good night. We were told we were going to get to go home by Wed. so we planned to stick it out one more night but then we got the great news that we were being released on Tuesday (yesterday) instead! Austin and I went to work loading the van and rearranging car seats so we could bring our precious Eden home finally! I think we were out in the parking ramp for almost an hour while Brian stayed with the three girls in the hospital room. He survived it though! We got released but still had to go back to the RMH to clean. The weather was less than favorable as it was raining and then turned to snow by the time we were headed home. We arrived home just in time for supper. To our surprise, Brian's mom was there and had supper prepared for us. What a treat! We are so blessed by so many people. Thank-you everyone for all that you did. Even if you didn't physically do anything but just prayed for us daily...you are amazing and I am so thankful for you!
We had a few visitors (it helps that we used to live in Marion and work in Cedar Rapids)...on Wed. Kristin Linnell and Jami Modracek came in the evening. On Friday afternoon Angie Harkin and her daughter Abbi came to visit (right as Brian was leaving). On Friday evening (right as we were about to switch rooms) Emily, Adam and my mom came. So they got to help us move into our new room! By saturday I was feeling lonely and really looking forward to Sunday when Brian and the kids arrived!
Here is a video of the girls meeting Eden for the first time:
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