Tuesday, May 1, 2012

Surgery tomorrow

Sarah's surgery is tomorrow. We have to be at the hospital at 5:30 a.m.. If I had thought this through more carefully we would be at the Ronald McDonald house tonight. As is, we are planning to leave the house at 4. I am not excited.

I set aside important things, in these days leading up to the surgery. The house is a disaster. Instead, I pulled out my crafting skills for a few projects that felt more important than a clean house.

If Lily is going to live out of a suitcase, it is going to be her suitcase. So, I took Lily to a fabric store, where I let her pick out a few of those bundles of pre-cut quilting fabric. We needed a bunch of different prints. We cut birds and flowers and butterflies out of the various prints, and used wonder-under to adhere them to her boring suitcase. Then we decorated it with paint pens and puffy paint. It is beautiful. We made her carrying bag in the same way, for books and toys for the car, hospital room or anywhere else boring that she might find herself. She is excited about her bags.

Last time we were in the hospital, Sarah's ID bracelet chafed her skin. By the time we got home, it looked pretty bad. I had tried various things to protect her skin, while there, but none worked well. So, this time, I decided to make her a wide, snap closure, fabric bracelet, to wear snugly underneath her ID. I chose a few bright fabrics and set to work with this simple project. I was almost done when it occurred to me that I probably could have purchased something like a wrist sweat band for the job. Mine are cuter. At least that is what I am telling myself, since the job is done.

Since we are going to be in the hospital for awhile, we are going to move in. We bought a reed diffuser, so that the hospital room will not smell so hospital-like. We bought 3M hooks, so I can hang a cross in the room. I spent the day trying to decide what Sarah will want in the hospital. Definitely, her kick and play and her piano. Probably her mobile. Maybe her teddy bear. We are ready.

OK. We're not ready.

There is no way to get ready for a surgery this big. We have prayed, and solicited prayers. Lily is nervous, which means she is not sleeping well, and she is more needy than is normal. I am nervous, too, I suppose. Anyway, my temper is quicker than is normal. Josh and Sarah are both, blessedly, acting totally normal.

Dr. Keating says we should plan on being in the hospital for about ten days.

We are praying that Sarah does not need a shunt. We are praying that there are no complications. We are praying for a successful surgery and a speedy recovery. We are praying for grace, strength and peace.

Some people have asked what we need. Honestly, I do not know how to answer the question. At first I thought I should start an Amazon wish-list. I tried, but it felt disingenuous asking for the things I started listing. They are not needs. The reason I have difficulty is that we are in a fantastic hospital and taking advantage of a fantastic charity just up the road. They take very good care of us. So, if you are thinking you would like to help us out, and you are not sure how, we would be very glad if you helped the people who are helping us. Ronald McDonald House and Children's Hospital would be glad of your help.  And we do need your prayers.


  1. Our prayers you have. Godspeed. And hugs and kisses.

  2. What procedure is she having done? My little guy Aiden (4) just had his second cranial vault. He too has Apert Syndrome. We also stay at the local RMH closest to the hospital. It is such a blessing!

    Good luck to your little one! Prayers for you and yor entire family!