Pacifier Duty

Par was not a happy camper today. He was awake for about 6 hours straight—it was shocking. I asked the nurse if he was on any sort of speed—she said no. One minute he would be content and sucking (loudly) on his pacifier and the next minute he would be air-boxing with his little hands trying to take his CPAP off and pull his replogle tube out of his mouth. Most of the time he succeeded—not because we can be over powered by a 3 ½ week old baby—but because when he starts flailing his arms he sometimes catches on other lines (the ones going into his body, like his central line) and we’re trying to keep him from hurting himself—the CPAP we can put back on—the central line or UA line can have devastating effects if he snags them just right—anyway, he just HATES his CPAP (most babies do) and he just wants it off of him. I don’t blame him—how comfortable would it be to sleep in scuba gear—that is basically what he is doing—it would drive anyone insane!

Mom was with me all day—we took turns on pacifier duty. During one of his “content” spells the nurse asked me if I wanted to hold him—so of course, I jumped in the chair. He was only content for about 20 minutes—he actually seemed uncomfortable—like something might be hurting him, so we opted to put him back in his bed and he seemed to calm down.



As I have mentioned before, it is difficult when he cries because I can’t do the natural soothing things one might do for a crying baby. Even when I’m holding him, I’m only able to hold him in that same position. The good news is—he does seem to be relatively consolable—I guess he just had a lot of “personal issues” today and each one needed addressing!

Dr. Kays came by about 6:45—right before I was leaving for shift change. He had been tending to the other 2 CDH babes for most of the day. He asked me how Par seemed and I said he was sick and tired of the CPAP get up. Dr. Kays said, “Well okay—let’s just get rid of it then—how about tomorrow?” I asked if he was serious—he said yep. He said he would do it tonight but he didn’t want something to go wrong and be called to come in at 1 AM—I don’t blame him.



When we arrived tonight (Rusty worked today so tonight’s visit was his first for the day) his blood gas had not been very good. I have no idea how that will impact his change from CPAP to a nasal cannula—but I have to think it might. We’re praying that his 4AM blood gas will be good so Dr. Kays can move on with his plan. Also, his replogle was removed and replaced with an OG tube. This tube is used to naturally vent the stomach (the replogle is suctioning the stomach) so it doesn’t fill with air. This tube is also used to feed—but we are not doing that yet—but at least now we’re ready! The other good thing about the OG is that it is much smaller than the replogle tube—in fact, the nurse said Par did not even seem to notice when she put it in and he hasn’t been pulling on it like the other one.



Ella has been feeling better—she fell asleep while admiring herself in a mirror on one of her toys tonight while I was talking with Tina. She is so precious! Please pray for her lungs—pray for clean films so she may take the next steps in her recovery. Also, pray for toleration of her feeding tube as they continue to increase her feeds. Please keep her parents in your prayers as they continue to be strength for their daughter and each other. Jonathan’s surgery is tentatively planned for Wednesday (finally—remember, he hasn’t yet had his repair). We ask that you will continue to pray for healing in Jonathan’s kidneys and liver and for Jasmine.

We thank God for the progress Par has made in his short life—we continue to be in awe of the love we’ve been given with this precious baby boy and we give all of the glory to our Lord. Liz, Rusty and Par