Tuesday, August 09, 2005


Yep, Max has finally reached the whopping 5 pound marker...we are thrilled! He is on a VERY high calorie diet (which sometimes gives him stinky gas!) and his medical team is working very hard to get him bigger and stronger. While I am excited about the 5 pound marker, his docs and nurses say he really should have gained more than that by now. According to some various tests, he is not digesting his food too well...and of course he is burning a lot of calories with his labored breathing.

Regarding his heart, the doctors increased his meds again today. However, if this does not work, they are talking about moving up the heart surgery. That would be a temporary fix until they perform the complete open heart surgery.

On another issue (and to end this update on a positive note), oral aversion is very common among children with prolonged stays in the hospital. Feeding tubes, intubation, etc. often cause babies to not want items near their mouth. I have been working nearly daily with an occupational therapist to prevent this problem. And finally today, he took the binky...and sucked away and away! He has taken it before but only for short periods of time. Today he sucked on the binky for over 15 minutes! I was overjoyed and very teary! Very exciting little milestone for us! Little Max is growing up!!!!

Here in the photo, his cuddly friends are congratulating Max for reaching 5 pounds AND for his successful binky sucking! Way to go Max! (The mask in front of him is how he gets his oxygen.)

Monday, August 08, 2005


I remember visiting Maxwell in the NICU that first day and being told by the nurses, as well as fellow parents, that life in the NICU was very much like a roller coaster. Nothing could be a better description! There are many up and down days...you will be coasting along for awhile...feeling very good about your baby's stability... and then suddenly the bottom drops out, you receive a horrible update and you are speeding downwards. Then gradually you start climbing up the hill and experience some welcome relief...but then sure enough you go back down again. Some hills are gradual, some dropoffs are VERY steep. Such is life in the ICU.

And unfortunately today is one of the downhill days. Max had a period of several good days and they were hoping that he would soon be able to transfer to the lower level unit. However, today his heart failure is rearing its ugly head. They are increasing his meds and hoping that can help. What happens is that his large (everyone always says, wow, that is a very large VSD...listen to that murmur!) VSD (hole in the heart) moves blood around to the wrong places and therefore the lungs have to work extra hard to move around the oxygen. Sure enough today he is breathing extremely hard and his chest xray shows that his lungs are extra "wet". I'll keep you posted.

On a lighter note, Max is looking super cute today...one of the nurses put a little pug stuffed animal in his arms and they are swaddled together looking adorable!