Monday, August 22, 2005


Happy Birthday Maxwell! Thanks to everyone who sent cards, called and visited....your thoughtfulness is greatly appreciated! (David, Max said he REALLY appreciated your card most of all!!! You definitely win the award for most e-greetings ever!) Max had several fun visitors today and we really enjoyed the company! Thanks again everyone!

Several of you noticed I didn't write much last week....sorry, it was a rough few days. But thank you for being so diligent about checking Max's blog. Wonderful to know that so many people care about Max and are interested in his daily updates! :) Actually tonight I wasn't going to write either, but he had a massive "poop explosion" on his new gorgeous white blanket and I needed to take some time to do laundry!

The pulmonary specialist joined Max's "team" last week and the news wasn't so wonderful. They are concerned about his lung disease due to early arrival and about the combination of other factors leading him to labored breathing. We are having a Care Conference on Tuesday afternoon with the many specialists involved to review everything with Maxwell and make sure everyone is on the same page and put together a plan that is agreeable to everyone.

Max is not gaining weight as well as he was and he vomited twice today (Ruthie - one episode was on your adorable duckie blanket!) there is a slight concern there. The nutritionist and doctor are discussing that this evening. I get very worried about the vomiting because he has such serious reflux issues. As soon as he is big enough (they want to wait another month or so), he will have surgery for the "belly plug." Basically the food will be put directly into his stomach versus using a feeding tube. The tube is problematic as they get older because they explore their face and pull on the tube...exactly what Max did tonight! I knew it would be anyday, and actually I was kind of proud of him for finally finding it. The tube is also bad for oral aversion and reflux issues. We are not sure if he will ever be able to breast feed (I am pumping and he gets my milk - plus extra calories through added formula powder) and that is incredibly disappointing and frustrating. If he was able to breastfeed in the future, he will still need the belly plug as well to make sure he maintains his very high calorie diet. A lot of his eating outcome will depend on his heart surgery, strength, and tests on his swallow ability, etc. This is an issue that only "time will tell."

We did a test today to determine his level of oxygen needs and the doctors were pleased. The need is slightly lower than originally thought. They used a square plastic tent covering his face, but with him, it pretty much covered his whole body. Max "the boy in the bubble" was not happy with it!

To make him happy after the oxygen experiment, we tried something new...our first nap together! It was wonderful to just lay beside him and gaze at his gorgeous face and enjoy cuddling. However, I think I got high on all the extra oxygen blowing at our face!

I have been talking with the chaplains at the hospital...amazingly supportive and helpful. We get together regularly and pray with Maxwell. We are planning his baptism for sometime in the coming weeks and are hoping that we can actually take him to the chapel for a more "official" baptism, or it may be at his bedside. My sister, Elizabeth, and her husband, Jim, are the godparents and will be with us for this special moment. Our original plan was to have a joint baptism (with cousin Thomas) at St. Matthew's Church in Wheeling but Max will not be traveling anytime soon and I didn't want to wait. I'll be sure to take lots of photos!