"Look Ma, no tube!"

October 20, 1997

Dear Friends & Family,

On Saturday, Amanda marked her two month birthday and as of today, she has spent exactly 9 weeks in the Mass General NICU. Tonight, we will string together her ninth string of cranes to hang over her isolette. She has upped her weight now to 1170 grams, or 2 lbs. 9 oz. from her starting birth at 1 lb. 12 oz. She has not gained weight as fast as the doctors would like but they say that every baby's progress is different. In some ways, she was set back in her weight gain by an enormous achievement last week. A week ago Sunday, she decided she didn't want her breathing tube in anymore and so she pulled it out! The doctors and nurses were amazed to see her breathing normally and seemingly comfortably with only the help of a nasal canula that flows a stream of oxygen enriched air to her nose. After a day of doing so well on her own, her lead nurse, Debbie, even wheeled the respirator away from Amanda's station to show what confidence she felt in Amanda's big step forward. We started to feel more elated when she lasted through the second day and night and even managed to gain 10 grams that second day. Unfortunately, on the afternoon of the third day, she started laboring and her heart rate dropped alarmingly, so the doctors felt they had to re-intubate her and let the respirator take over the work of her breathing for her. Nurse Susan who helped with the procedure told us that she felt Amanda looking pleadingly at her with her big eyes as if to say, "How can you do this to me again!" A subsequent X-ray indicated that the top part of her right lung had perhaps collapsed leading to her distress. While we were naturally very disappointed that she had to take a step backwards, the doctors told us that they were very encouraged and impressed that at her little size, she was able to breathe on her own for so long. We are hopeful that the next time she decides to extubate herself, it will be for good.

One good thing about those 3 days is that we got a much better look at our little girl. Before then, she was a lot like that character, Wilson, on the TV show Home Improvement, in that you never get to see his whole face. In the same way for Amanda, with the tube taped in place around her mouth, we could only imagine what her whole face looked like. So, if we thought she was beautiful before, we really have fallen completely head over heals for her sweet face now. We did manage to take a few cute pictures that we are printing here, or if you are reading this by e-mail and have web-surfing ability, you can take a look at yourself by going to a private web page at http://world.std.com/~eshu/amanda.htm. Her other big achievement during this time is that she now is able to regulate her own body temperature rather than depend so much on the isolette heating regulators. This development means that she can now wear clothes, although the smallest premie sizes still seem to swallow her up, so she looks rather like Yoda from Star Wars. But Annamarie is already making plans for Amanda Panda's Halloween costume that will only need to be 3 1/2" from shoulder to shoulder and 8", from shoulder to knee.

The bad news in her pulling out the tube is that she spent so much energy in the process that she didn't gain very much weight in the last week plus and now she spends so much energy trying to remove the darn tube again that she is still struggling to gain weight. So it is a bit of a Catch-22 because she can't get rid of the tube without being bigger and stronger and she can't get bigger and stronger while she fights the tube. But we hope that once she gets well above 1200 grams, the doctors will once again consider letting her try to breathe on her own. Other than that big concern, the rest of her care is just a big juggling act of balancing her fluids, her electrolytes, her iron and potassium, along with being ever vigilant against a host (or "colony") of other bacterial threats. The good news is that she is drinking up her fortified breastmilk (through a gavage tube that goes through her nose into her stomach) at a good steady clip -- and pooping it out the other end at an equally good clip -- sometimes in an astoundingly powerful barrage that has caught both her Mom and Dad unprepared as we tried to change her diaper and wound up with . . . ahh, a certain amount of "egg on our face" you might say. We also do get to hold her on a regular basis for 1 to 2 hour stretches and as she looks up contentedly at us, that's when we get a dose of parental fulfillment that makes our daily hospital visits to this beeping alarm environment worth every second.

The doctors have also cautioned us that Amanda's stay might be longer rather than shorter as we hoped. We are still wishing and hoping that she might be home with us in Melrose by Christmas but if need be, we will postpone our own Christmas celebration until she does come home. Till then, we are still trying to take things one day at a time and we are still ever grateful for your many messages and cards of support and prayers for her health.

P.S. 10/21 Hot News Flash: "Hey Mom & Dad, I gained an all-time Manda record of 55 grams yesterday! Now, I'm a 1200+ gram premie and weigh 2lbs. 11 oz.!"

"My genes come from you guys??"

"Mom, you shoulda put a window in this quilt for me to see out."