We are coming up on 48 hours since extubating Ren and he is going strong. Last night was a late night because despite being free of tubes (except his feeding tube that goes through his little nose) we could not seem to make him comfortable and he could not sleep. Normally, a parent has the option of scooping their fussing baby up and holding them to help comfort, but the doctors had requested that we have as little activity as possible through the weekend so that Ren has the best chance possible to avoid any setbacks before our scheduled move on Monday. The medication he is on for the secretions is undoubtedly working, but as with any medication, the list of possible side effects is long and horrifying, especially when it is a baby that can’t tell you what is going on. Eventually we were able to find a position on his belly that seems to be his favorite and after an hour of patting his back, he finally drifted off to sleep. The NICU can be a difficult place to sleep as there are constant sounds of machines and their alarms, crying babies, and of course the never ending glow of fluorescent lights. Our upcoming move to Dell Children’s Hospital will help with some of this.

The wheels were set in motion on Wednesday to move Ren to Dell where he will not only have access to all of the specialists that he needs, but will also enjoy a private room where it will be much easier to do things like read to him and have skin to skin time. Because of Ren’s suckling, we are hopeful that the doctors are going to give him the chance to try feeding as that was their initial plan when they saw him start sucking on his oral airway. By the way, once he decided to push that device out of his mouth, it has not gone back in and there have been no issues, even without it. Feeding on his own is going to come down to his ability to swallow and strength of his gag reflex. When being suctioned for secretions, he at times exhibits a gag reflex but it needs to be reliable when feeding in order to ensure that he not send milk down the wrong pipe. Once we are at Children’s, we will cross that bridge and begin looking at a surgery to put in a permanent line to his stomach unless the result is anything short of miraculous. Although a feeding tube is a frightening prospect, it is not nearly as scary as a tracheostomy. As long as Ren continues to have success without any help breathing, he should be able to avoid a trach and keep his beautiful little voice.

Today is a big day for Ren because he will be meeting his cousins Jack and Mia for the first time. We had hoped that Ren would work his way of the ventilator before this event (it can be quite shocking to see a baby on a vent, even for adults) and he did not disappoint. Ren has used every opportunity we have given him to show us that he is full of surprises and fighting spirit.