Category Archives: Update

Over the past few days since the surgery the reality of having a child that is going to be fed through a tube at home has been slowly dawning on us.  Everybody keeps assuring us that this isn’t a big deal but it feels like a very significant impediment to normal baby stuff to alwaysContinue reading “How to eat, Day 147”

Surgery went well.  Yesterday was another long day at the hospital. We got a surgery time slot the night before and started the cycle of worry and stress leading up to the dreaded stroller ride over the bridge to children’s hospital.  If anything positive has come out of this bonus time in the NICU waitingContinue reading “GJ tube placed, Day 143”

On Wednesday we set up about eight folding chairs in a circle in Barnaby’s little corner of the GDU for yet another meeting  with GI specialists from  children’s hospital. The discussion was long and left us better informed but also more frustrated at past communications. The end result is that we have made the extremelyContinue reading “Another Surgery Upcoming, Day 139”

It has been over a month since I wrote anything here. No good reason for that besides just getting into a little bit more rhythm with life in the NICU at Bringham and Women’s Hospital and deciding to focus on the tasks at hand. We have reached the point in our stay when we justContinue reading “We are still here, Day 132”

As I write about our experiences and Barnaby’s journey something that has been very difficult is finding the right tone to portray the reality of the situation. Sometimes I find myself spinning things very positively because that’s how I need to be thinking in that moment, other times I am able to write more realisticallyContinue reading “Finding the right tone”

Barnaby is around three months old. There is a lot written about early childhood development in these precious first months and it’s confusing to know how it all applies to a baby who was born almost three months early. In some ways he has been in this world for three months learning and growing andContinue reading “Day 90”

Barnaby has had a feeding tube ever since he stopped getting TPN (iv nutrition). That feeding tube puts milk right into his stomach and has allowed him to get to six and a half pounds with two impressive chins, but has been not without its problems. Most babies have reflux of some sort but oftenContinue reading “Beginning to Bottle, Day 75”

The big news is that Barnaby is big. He has officially doubled his birth weight and is creeping up on 6 pounds. He is two months old now and just about two weeks away from his full term due date. The road from here is all about milestones. There is a list of things thatContinue reading “Milestones, Day 61”

Barnaby is 5 lbs 6oz today and about 18 inches tall. He has a sizable second chin and huge cheeks.

Barnaby is in the GDU (growth and development unit) now. On saturday he got put in a real crib and rolled down the hall to a whole other neighborhood where he shares a big room with two other babies. This is a graduation from the solo rooms that are reserved for younger and less stableContinue reading “To The Growth and Development Unit for Mother’s Day, Day 50”