Thursday night (January 25th) we got back home after a long week in Milwaukee at Children’s Hospital of Wisconsin (chw) and Ronald McDonald house (rmh). It was such a relief to be home. The girls were THRILLED to see Aila again.

During our Milwaukee stay we tried to do some fun things in between appointments and Avelines surgery. Friday we had Avelines upper gi, which was about 2.5 hours, 120ml of barium through a nasal tube and a lot of xrays. Afterward we took the girls to the zoo and lunch. It was a beautiful day (mid 40s). We had a really nice time and got to see a lot of animals in their indoor enclosures. Saturday I went with a friend to a place called Katy’s Kloset, and we got medical supplies stocked up in preparation for Avelines tube placement. In the afternoon Ryan and I took the girls to the children’s museum, it was pure chaos and not as much fun as we would have hoped, but the girls enjoyed some aspects of it when they weren’t being trampled by bigger kiddos. Sunday we took the girls to target and toys r us, they each got a new toy, and we had brunch at the rmh, naps and then movies and play with friends.

Monday morning we got up and headed into chw. She had her preop, where she cried the whole time, she was tired and hungry. They gave her a little bit of “happy medicine” and by the time it kicked in she was smiling, waving and blowing kisses to all of the nurses and doctors. They got her back early, and her procedure only took about 40 minutes. We got to go back to recovery, I held her and we headed up to our room. Aveline slept the majority of the day. Our friends Stacy and Caroline came and brought each girl a balloon (doc mcstuffins and my little pony of course) and new stuffie.

Ryan and Novella brought me supper, and Aveline and I had an overnight at the hospital. It was a very long and sleepless night, nurses and doctors in and out, starting feeds through her gtube, stomach contents from her tube, and mouth. Overall a very interesting, long night. However, we did find laughter as we played silly games with stuffed animals, and Aveline even did a fun dance while on morphine that had even the nurse in stitches during the middle of the night.

The following day was feeds, trying to figure out our insurance and supplies and getting discharged. We finally got her unhooked from her iv drip and pulse ox, and she was so happy to be able to walk around and have some more freedom. We walked the halls, went to the play room on our floor and drove push cars around. Finally we got discharged and headed back “home” to the rmh. The evening consisted of supply delivery, supper, nurse visit a lot of upset tummy, and finally sleep for me while Ryan walked around with Aveline asleep in the ergo.

Wednesday was a day of rest, we played, watched movies and just had an overall lazy day, it was much needed! Thursday we got up and headed back to chw. We saw neurology first, Aveline will be scheduled for a sedated MRI in the coming weeks, and we will be working to get braces ordered for her ankles as her in-toeing has gotten worse. Next we had feeding team, the dietician and speech language pathologist worked with us to make a better feeding schedule for Aveline and her tummy has been much happier since! We ate lunch at the rmh, packed and headed home.

Once again the rmh didn’t fail to impress us and care for us. We got to go to the magic room the day we arrived, Aveline picked out a new My Litte Pony toy, and Novella picked out a doc mcstuffins Dr kit backpack, and a new book each. The night before Avelines surgery they delivered a sibling bag to Novella for being a supportive brave big sister. When we got back from being discharged each girl was given another magic room coin to pick a new toy and book. The meals each night were delicious, healthy and filling. The lunches to go made life a little easier as well. The community of people and the connectiona you make. The staff us phenomenal and they pour love into us and our Children. I took Novella to movie night one evening while Ryan cuddled with Aveline. We watched one of the tinker bell movies and they provided popcorn, new blankets, and new stuffed animals for the kiddos. We had such a lovely escape from our stresses while we were staying there and not across the street.

We are truly blessed to have the care for our daughter that we have there, and the support and community of the Ronald McDonald House.

Aveline and Novella are courageous, brave and strong little girls. The week had its share of challenges and obstacles and both of the girls did remarkable!!