COMPLETELY unhooked!

Things have continued to progress in the right direction! Evan has been doing very well with the bottle. He took the majority of yesterday's feeds from the bottle and we only had to use the tube a couple of times. He has put on a little bit of weight and is up from 2.995 Kg at admit up to 3.12 Kg last night. We will see at 11:00 tonight what his new weight is!  Evan has continued to do well with his feeds today, so the doctors removed his feeding tube! He is now hooked up to NOTHING and is doing everything for himself.

His leucine, isoleucine, and valine (the amino acids his body can't break down) levels are down around the normal range.  To keep them there, Evan is taking a few bottles of breastmilk per day and the rest of his feeds are the MSUD Analog formula (a special formula for MSUD patients which does not have leucine, isoleucine, and valine, but has other vitamins and minerals needed to grow and function).  We already have some of his formula at home because the dietician here ordered it and had it sent to the house. His formula has to be specially weighed and mixed, so the dietician gave us a scale today that we can use when preparing his formula each day.  Plus we talked to the insurance today and found out that his formula will be covered by the insurance. What a blessing because it is VERY expensive.  As of right now, Evan's isoleucine and valine are being supplemented in a small amount to keep them at the normal range, but we are hoping that soon we won't even have to do that because the breastmilk will hopefully give him what he needs.  We may need to continue these supplements at home depending on the results of his amino acid tests, but we will cross that bridge when we come to it. 

This is Mommy's favorite time of day! After
a morning feeding and getting to cuddle and read!

Since Evan is doing so well with his feeds and his labwork is coming back the way we want it, the doctors are thinking they will release us tomorrow. That is, of course, as long as Evan continues to eat well tonight. We are definitely looking forward to going home, but at the same time it's a little nervewracking. Here we have the doctors and the nurses to make sure all is well. Once we go home, it's all on us. I am sure we will handle it, but it is still a little scary.  Once we do go home, we will have to make sure Evan is weighed weekly because with as quickly as babies grow we need to make sure that we are continuing to give him the right amount of good proteins so he can continue to thrive.  In addition to weekly weights, we will have to attend something called "metabolic clinic".  This will encompass us meeting with the metabolic specialists, learning about Evan's best treatment, support from others, genetic counseling, and dietary management skills.  We will attend weekly clinics for a little while, until we really get into a routine with everything and fully understand how Evan's weight will effect his feeds.  We are very comfortable and confident with the care that we have and will continue to receive from the metabolic team. We are also very pleased with the care we have received at UNM Children's Hospital. The staff here has been incredible!

 Keep saying prayers that Evan does well and hopefully we will head home tomorrow!