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Not a whole lot to report in with this update. We have been having some unmentioned issues with Elias feeds. Primarily that he almost to the point of predictability is retching and at times vomiting toward the end of his feeds. we have watched and tried to figure out a pattern to this, i.e.; activity level, positioning, etc. but have not come up with anything that nails it. Katharine believes that it is a volume issue. That we are giving him too much at once. Sort of like overstuffing him. Since he can not communicate to us yet about these things we have to trial and error. It would make sense, if we eat too much we get sick. There are times though that he will not do it, albeit rare. Tomorrow and Thursday we are going to conduct an experiment. Feed him four times versus three for a shorter time and decreased volume. Hopefully we will no longer see the behavior and we can then address the why. If he does continue to retch and vomit then we will be heading back to GI to try and determine what the issue might be.

A Little Insight To Carry Us Through The Weekend

This afternoon we spoke with Elias' surgeon very briefly. We asked him how the conquest of the world was coming (decision on what to do with Elias) and he took a deep breath and said, "let's sit down on Monday for an informal meeting." He did mention that he was leaning towards a tracheostomy but he did not sound as though he was certain about that thought. That's OK, we understand the difficulty & challenge Elias has posed. Just knowing what some of the thoughts are helps get us through this extremely difficult and anxious waiting period.

The NICU attending doctor came in also to talk with us. He asked if we had spoken with the surgeon and orthopedics (more on that to follow). He also mentioned that one thought he has is to do a gastrostomy (also referred to as G-tube). This is a surgical opening into the stomach where a feeding tube is placed. We did not get into a lot of details about this with him, but his main reason for wanting this procedure is it will potentially allow Elias to come home sooner. He would get the feeding therapy as an outpatient. Without the g-tube he would need to be hospitalized until he masters full feeds from a bottle and that can potentially take months. We will go more into the gastrostomy when they have decided for sure if it is right for Elias.

Orthopedics was asked to be consulted...oh about a month ago. Well, yesterday a doctor from that unit came to consult Elias. Of course he his a lower body specialist, but he is the doctor that must consult first and then refer the appropriate doctor. Oh the wonders of the medical political bureaucracy!! The issue is the doctor comes from another hospital within the University's Medical system. We did not know this until yesterday. Well, to make a long story short, several emails have been exchanged between this ortho and the NICU attending. Our contact information was given to them and we are now awaiting follow-up for a hand specialist to look at Elias' hands and help occupational therapy properly splint them for optimum success.

Speaking of occupational therapy, Elias is getting great reviews from his therapist as well as physical therapy. They say he is tracking very well, both visually and audibly. Grandma O, you'll be happy to know they used the toy you brought Elias in one of his sessions and he had a great time with it. His level of engaging stimulus is extremely positive too. He really enjoys his therapy sessions, rarely getting fussy or upset. They are a really wonderful group to work with, always very patient and willing to teach. They love our level of involvement and our positive outlook. We look forward to continuing with them even after Elias comes home. We have added a few links to Elias' Helpful link section for tracheomalacia and gastrostomy. As always please do not hesitate to ask questions or tell us about concerns you have. It honestly helps to be interactive about all of these things.

We will be working on getting the photos and video from today posted a little later tonight. We also want to thank everyone for the phone calls, emails, and comments of support this week. It helped us get through this very rough week more than you'll ever realize.