April 18, 2013 Take 2:

Oh boy!!!! Lots of things are in the works!! We are starting discharge planning for first of next week!!! We just have to pray lil RJ continues to gain ounces from now till then and continues taking his PO feeds. They were able to wean his oxygen down to 0.03 liters last evening and he tolerated it great through the night and today. He didn't take as much of his bottles last night, but they were still ok w/ it. He did pretty good w/ his breast feedings today as well. We are planning on taking him home w/ the oxygen and NG tube for any bottle feeds he doesn't finish so he will still get the proper nutrients and gain weight. They started teaching me how to measure and place on a lil baby. It's supposed to be much easier than an adult, thank goodness. This afternoon they put drops in his eyes to dilate them in preparation for his eye exam. That should have taken place by now. Hopefully it's the same as last time and just need to follow up in 1-2 wks. The discharge planner sent over the paper work to get the oxygen stuff in order. They called this afternoon and will meet me at the NICU tomorrow at 10am to do teaching there and then come by the house about 4pm tomorrow afternoon to get the home part set up. That way things don't get pushed till next wk and delay discharge!! Let's see... oh RJ did gain 2 ounces last night and is up to 5 lb 7 oz again.

I can't believe the time is already arrived for the possible take home of our lil boy.... It's been such a loooonnnngggg process and very touch and go at times. He truly is a miracle baby. Multiple people, including myself, didn't think he would survive. He's beat all the odds and is a true fighter. We are so very proud of him and all he's accomplished!!

So here's what our primary PA talked w/ me today about discharge:

F/U in 1-2 wks for eye check
F/U 1 month w/ grad clinic (follows growth, oxygen/apnea monitor need, nutrition, development)
F/U 2-3 days w/ pediatrician
F/U 6 months w/ peds surgery for circumcision

Avoid crowds for multiple weeks- use good judgement. Have people wash hands and stay away if sick. Don't pass around a lot. Avoid grocery store, church, Walmart, mall, etc. for awhile

Nutritionist will make feeding plan to add more breastfeeding to the regime. Will have to add fortifier to milk bottles. May go home on benaprotein for growth.

Probably go home on oxygen and apnea monitor. F/U at grad clinic in 1 month for read out of monitor and see if ok to d/c

This is as much of a journal for me as it is to keep all the fam and friends informed. It's going to be more complicated than a typical baby, but nothing a nurse and doctor can't handle. :) We are just super excited that we will be at home and can get into our own routine.

Love to all!!!