September 20, 1997 Dear Family & Friends, We have been waiting for Amanda to reach and pass a few thresholds before we sent you another update on her condition. As some of you might have guessed, "no news" is generally "good news" and as she just passed her one month birthday this week (equivalent of 30 week gestational age), we are cautiously optimistic about her condition.

The good news about her condition is that she has started to gain "real" weight and today tips the scales at 910 grams, which is exactly 2 lbs. She was born at 790 grams (1 lb. 12 oz.) and after a some large swings in fluid weight, she has gained a steady 10-15 grams daily for the last five days. This gain is due in large measure to the fact that she is now receiving her nourishment fully via breastmilk by way of a feeding tube into her stomach. We were very heartened that in just a week's time, she went from .5 ml/hr. to a full feeding level of 5.0 ml/hr today. In addition, Annamarie's breastmilk is being fortified with extra calories and nutrients, so Amanda is now getting "super-premie" food that they will add even more calories to, if she continues to tolerate it well. She has also just finished another course of "pumping up" with steroids that are helping her respiratory system develop further. She is and will continue to be for some time intubated on a respirator that does most of her breathing for her, so she can use the precious calories she gets for growing and developing rather than on the hard work of breathing. But we have been encouraged to see the respiratory therapists continue to be able to lower the settings on the respirator in terms of pressure, rate and oxygen enrichment. She has had another head scan this week that was completely normal and an initial baseline eye exam, which showed she has big eyes (corneas) -- with no particular significance other than their endearing charm!

We can also visibly see her fill out some. She is starting to grow a nice head of hair and she seems strong enough to do premie "pushups". She has graduated to big premie diapers but she still has "chicken legs", so she still needs to send some flesh downstairs. But she has beautiful hands and feet and is getting very expressive of how she uses them. She is more awake now with eyes wide open for longer stretches of time. With eyes shut, Annamarie thinks Amanda looks a lot like Evan, but with eyes open, Evan sees a lot of Annamarie in her. The nurses all have a clear idea of her personality in that she doesn't like to be "messed with". She does best when left alone and on her stomach with legs tucked under and two beanie bears on her legs that we think remind her of when she occupied the bottom position in the womb under Noah and Melanie.

For the last three straight days, we have both got to do "kangeroo" care where Amanda (with all her tubes and wires attached) is put directly on our chest. Once she settles in, she seems to love it and we get to feel like real parents for some two hour stretches. Afterwards, she is very relaxed and the nurses are impressed with how much she tolerates after a good kangeroo session.

As good as the doctors tells us that Amanda is doing, we are unfortunately reminded almost daily of her vulnerable condition. Several times or more a day, she "de-sats", which means her the oxygen level in her blood drops to critical levels or she has "bradies" which is a type of heart-rate dropoff. Most can be corrected easily by turning up her oxygen level or by adjusting her breathing tube, but some require what appears to us to be frantic resuscitation efforts. In addition, we have had to try to remain calm as the doctors have told us about various possible and real ailments such as a partially collapsed lung, an ecoli infection, a staff infection, a heart murmur, and wet lungs. We are constantly reassured that dealing with all these things is part of the normal juggling act in the life of a premie but Melanie's sudden downturn always reminds us that any of these problems can lead very quickly to an extremely critical life or death situation.

So our life these days is very much day to day. If she has a good day, we have a good day. We are trying to "normalize" things a bit by establishing a routine. One or both of us will visit with Amanda for several hours in the afternoon and in the evening. Annamarie is putting the finishing touches on a beautiful Japanese doll quilt for her isolette. Evan brings in his Patriots Weekly Newsletter & Sports Illustrated to keep Amanda apprised on the latest gridiron events. We both sing her hymns and funny little made-up songs about Amanda-Panda. And we both read and treasure every message, card and offer of help that you send to us. We can't thank you enough for your continued healing thoughts and prayers that you send her and our way. We feel very supported by you, our community of family and friends.

Today is good day for Amanda and her parents!