May 6, 2009

Wednesday, May 06, 2009 11:21 PM

We went to Children's Mercy hospital today to tour their Neonatal Intensive Care Unit and talk with two pediatric surgeons, 2 neonatologists, a social worker and a nurse coordinator. We were pleased that there was no contradicting information and St. Luke's seems to be in close contact with Children's Mercy. They confirmed the information we already knew and gave us some more detailed information about the surgery and hospital stay.

They gave us the best scenario first: Stabilize Lydia once she's born full-term, transfer her to Children's Mercy, take an x-ray, operate, and send her home in a week. They also gave us several other scenarios but they agreed that we should be prepared but not worry over things that may or may not happen. They reminded us how large and serious her CCAM is and the possibility of having to remove a large portion of her right lung. They think that they will most likely operate in the first week of her life. They also told us that if she is full term and they are able to operate that she has a great possibility of recovering quickly and going about life as if almost nothing ever happened. The tour of the NICU was interesting and a lot of our questions. There were so many babies on that floor. It let us know that many others have been through this or are going through it now and that everyone has such a different story.

Another news flash in the Sims' household is that Kyle's parents moved in with us last Saturday. There's hospital equipment all set up and the hospice personnel is able to come and go through the walkout basement. Kyle is able to go into work for most of the work day and sometimes come home at lunch to move his dad from the bed to the recliner or vice versa. It's an ideal situation since they are comfortable, the kids can stay on their routine, and we are able to function as normally as possible. It's an adjustment with a bit more laundry, cooking and cleaning. However we're getting used to Grandma making us a full blown breakfast every morning. Kyle and I were even able to escape last night to grab a quick hot tea at the coffee shop down the road. Kyle's coworkers have really spoiled us with bringing meals this week and that has been a huge help! Kyle's grandpa will be coming tomorrow, his sister on Sunday, and his other sister the following week. We are thankful that they will get to be here to be with his parents and us and help out at the same time.

We are trying to be as flexible as possible in this uncertain time. Overall I think we're enjoying the peace God's given us, finding laughter in the midst of craziness, and understanding that it's all going to be okay. Today I was exhausted after the appointment, fell asleep on Chloe's floor and had a 3 hour nap. I woke up, got the kids ready for Awana, got there and had a meltdown. They excused me from leading Awana and Kyle and I had a KFC dinner to regroup. I have a weekly or biweekly "ugly cry" and it's better for awhile. Kyle's holding up okay but I know that he's getting pretty worn out.

Thank you for remembering us and praying. God hears our prayers and has definitely been present. It's completely humbling to accept prayers, help, and also to know that God is using our story to minister to others. Thank you for everything.

Blessings,
Kyle and Melinda