Making Great Strides in Michigan

I apologize for the long break in posts-- we've been busy visiting family in Michigan and I just haven't made time to type. However, I've posted some pictures of Madeleine today-- see the July album. We'll post additional pictures on Sunday or early next week-- I don't have the disk with me right now and the internet connection at my parent's condo isn't very fast.


As you can probably see from some of the photos, Madeleine continues to progress and we feel like she's making major progress. Our primary focus remains on her weight gain and we think she's starting to take off. On this past Monday, we took her to the hospital in Flint (our friend Kelly is a NICU nurse at Hurley Hospital) to weigh her and she was up to 6 lbs 14 oz. Based on her previous weight when she was last admitted to the hospital (6 lbs 4 oz), she had put on over 1/2 ounce/day. Our goal is to get her to gain up to 1 oz per day, so we're fairly pleased with the progress. Since weighing her, Kirsten and I are convinced that she has continued to grow-- we don't have any empirical evidence as we haven't weighed her again but she just looks bigger and her clothes are fitting tighter.

In addition to getting bigger, Madeleine is much more alert and has improved her muscle coordination a great deal in the past two weeks. I was away for four days on a baseball trip and I was amazed by Madeleine's progress in that short timeframe. Before I left, she didn't really react to outside stimuli but now she is reaching out for toys, she is reacting when the dogs walk by, and she has even followed a Baby Einstein show that Kirsten and my mom purchased. In short, she's making great progress and we couldn't be happier.

Next week promises to be a big week for Madeleine. She has a follow-up appointment with the pulmonologist and they will download data from her apnea monitor. We have had some bradycardia events (low heartrate) and we're interested to get the pulmonologist's reaction. The episodes have greatly decreased in frequency and duration and we're hopeful that the data will agree with our belief that Madeleine is slowly resolving this issue. Kirsten and Madeleine will also continue working with home nursing care as well as with physical and occupational therapists as we continue to push Madeleine's development as we push her to gain weight. IN short-- we feel like we're on the road to recovery and hope that we can begin making up ground.

In terms of future goals, we've backed off our timeframes on resolving Madeleine's medical issues. We're still confident that Madeleine will overcome all of her medical challenges including: reflux, bradycardia, dependence on oxygen, and her ileostomy. Instead of placing aggressive goals, we've just said that we hope to get her instestines reattached some time this fall (shooting for October) and we hope that by the New Year, she is "cord free" meaning she'll be off of oxygen support, will be feeding on her own, and will no longer need the apnea monitor. The important factor is that all of her major medical issues should be resolved-- we're just going to need a bit more patience.

That's all for now. Again-- I will post a ton more pictures in the next few days. Thanks again for everyone's support and interest.