Keep on Truckin'

Greetings,

We have been a little slower on posting now that Elsa is home. With the swine flu outbreak the hospital has changed the visitation rules to protect the babies. Currently, only Dan and I are able to visit Jonas. It is not too different from before, but we are not able to bring Elsa in with us on weekends, so we end up taking shifts watching her and seeing Jonas. It is a bit hard to only see him a couple hours a day.

Jonas continues to want to eat very badly (he sucks down his allotted 20 ml in no time and loves nursing once a day), but he also continues to throw up quite a bit and we are not sure why. It looks as if there will be some more GI testing in his future. They are taking a look at the muscle at the top of his stomach to see if it needs to be tightened by surgery or not. Jonas is getting pretty big. He was 9 pounds 2 ounces on Monday, and I just accepted the fact that I need to not bring in any more of his newborn sized clothes. In these days where it feels like he is not moving forward and frustration starts to creep in there have been moments where people share insights I cling to. One of the nurses in the ICN asked how Jonas was doing the other day--I told her there was not much progress. She paused and said, "Masterpieces take time. You just need to wait for your masterpiece to be complete." What a dear thought. I also had a conversation with one of the doctors in the ICN whom I had not met, but who took care of Elsa quite a bit. He was laughing about what a mind of her own she has. All she needed to do to go home was wake up and eat and it took her eight weeks to decide she was ready to do that. This doctor was meeting Jonas for the first time and he was commenting that one of the other doctors had said that Jonas was one of the most remarkable babies he had seen, and he had seen a lot of babies. It was just five weeks ago that he was trying to recover from the first surgery and having a hard time on the ventilator, at times requiring 100% oxygen and now he is doing great on the lowest oxygen support available. Sometimes, when I want him home so badly, I start to forget how far they have come. It is good to remember and be thankful.

Elsa has her outpatient checkups with the pulmonary doctor (hopefully she will no longer need oxygen for feeding) and the GI doctor (to check on her reflux issues) tomorrow. I am hoping these appointments will go well as it will be a long day for both of us!

Love to you,

Mari, Dan, Elsa and Jonas