Update

The irrigations seem to be helping. He's still not eating very regularly or with much vigor, but at least he's eating. He was doing 30 -40 mls, but then backed down to the 20s. Hopefully it's just a matter of getting a routine established and not hitting the over-full barfing wall again. Hopefully.

He desperately needs a sleeping and eating pattern. It can be hard to develop that in a hospital setting. Everyone keeps talking about him like he's 6 months old because he's so much larger than they are used to dealing with in the NICU/NPCU. He's only 5 weeks old and never had good eating experiences. So now not only does he need to reach a reasonable volume on his feeds, he has to figure out how to eat and sleep perfectly while nurses are constantly waking him to do things to him. Sometimes I just want to unhook him and run away.

We are all finally well enough to visit him and so today we did. It's been so long since I've seen him. I think he knows me, but it might just be my imagination. He didn't respond to me like he has in the past. He was tired when we showed up and the excitement of 4 siblings rattled him into not performing on his feeding. It's hard to find a time to visit where we can time the hour drive, cooperating children, the pumping schedule, and what's best for him as far as his schedule as random as it is.

It was good to be able to see him and the children so enjoyed getting to see him and Daddy. We took the Edible Arrangement that Sam's fellow Coasties generously got for us today and had a fruit movie afternoon with Daddy and Malachi. It was a sweet time, literally.

Now we just wait and see if Daddy can work his magic and get Malachi eating well enough to get him home. At this point we know we will be continuing irrigations for him at home for the foreseeable future. All I can say is, "that's nothing, let's go already!" Unfortunately, he's got to be eating and he's just not that excited about it. He's back on TPN, and lipids which gives his body all it needs and that makes it tricky to get him to want to take anything by mouth. You figure he's used to being in the womb and getting everything he needs. Since he's been out of the womb he's never had to eat to sustain his own life, and when he has eaten it always gets to that awful place where he's vomiting and then goes days without eating and we are right back to needing to 'teach' him how to eat. Hopefully this time the irrigations keep his colon cleaned out and he can just eat like it's Thanksgiving and get home to us. We wait and hope.