"Look Mom, No Hands!"

Par has been a bad little boy today. When we visited Par this morning we found out that he had pulled his ET tube out (endotracheal, the one that is breathing for him)—they had to replace it (obviously) which isn’t a very comfortable thing because it is his biggest tube. I’m so glad we weren’t here when that happened—it would have been scary for us to watch them bag him while they changed it out.

During my stay with him from mid-morning to the late afternoon he managed to pull his red rubber out about 8 times. The first 7 times he was using his hands, first pulling off the tape and then pulling out the tube. Not to be redundant, but my kid is a genius to understand such a complicated task of needing to “first do this, then you can do this”—not to mention that he obviously has unbelievable coordination. But I digress.



So…I asked the nurse what we could do to prevent him from pulling it out again and she got some really strong tape (I have no idea why they wouldn’t have used this before). It definitely works and he hasn’t been able to get it loose…so he’s moved on to his ET tube and started pulling on it…and then I remembered my little NICU kit that I made before we got here—it has mittens in it. So we put these little mittens on Par’s hands—he didn’t get upset or anything but he looks like a little light-weight boxer. He was throwing punches at the air for a little while and then he calmed down. I saw him reach up to his red rubber a few times and pull his mittened hand back down. Then his little face scrunched up and he was silently “wailing” so I jumped up and asked him what was wrong—he stopped crying and just kind of looked at me with his big eyes and the red rubber started uncoiling out of his mouth. His little look said it all, “Look mom, no hands!”—he had “gummed” the red rubber up—this thing is 24 cm long—quite impressive. We’re bringing the cherry stems in for him tomorrow to see if he can tie knots in them with his tongue.





Rusty and I saw Par’s x-ray from this morning—it is a full torso x-ray (I think there is some special name for it). We saw that his right lung looks much clearer today than it did yesterday—so that is good news. We also saw that the left lung has sprouted even more—an untrained eye (ie- Rusty and me) might think at a glance that the lungs were about the same size—but keep in mind, the right lung isn’t normal size either, it is just the least compromised of the two—but we are blessed because they both seem to be a decent size---how well they will work is another story. The nurse practitioner is the one who showed us the films today and I started asking her questions about changing over to the conventional ventilator—I was sort of taken back when she said “because Par is critically ill..”—I sort of wanted to correct her. He seems so “social” now that he’s been awake and he has taken to our cupping his head and holding his hands and feet so well…he seems so perfect to me—I guess I sort of forget how long this road is… If you are following Ella’s story, her mom touched on this last night in their update and I hadn’t really thought about it…but we do/have become desensitized to stuff because this becomes all we know. Tina and I are both first time moms—although everyone knows that what we are going through isn’t typical—it is all we know and we are surrounded by the same type situations throughout the NICU. Anyway, it sounds so negative to say Par is “critically ill”—I prefer “high-maintenance life-liver.”

Rusty went to the hospital after dinner and I stayed home for yet another pumping session—it was actually pretty good timing because that way Par’s GiGi (Rusty’s mom) could spend some good quality time with him before she leaves tomorrow. When I arrived about and hour later I found that Par’s nurse had spoken to Dr. Kays and we got some exciting news—THE RED RUBBER CAN GO! There was my precious baby free from that bad red tube—I had told him I would get rid of it for him—I’m glad I could keep my promise. Also, Dr. Kays ordered them to go down on the Nitric Oxide—it was on 17 when I was there and they are weaning it to 15 by morning. Every step counts—I count these as victories! Praise God for healing our little boy—even if it is with baby steps!!!

I haven’t seen Dr. Kays today, but I’m interested to see what he thinks about Par’s recent blood gases and pre/post sat numbers—his sats have been 100/100 for most of the day today and his blood gases have been “better” than before—not great, but definitely improved. Please keep praying for precious Jonathan and Ella as they continue to heal. We ask that God will continue to heal them and give Dr. Kays and the nurses discernment in the proper treatment for each of them. God is so good with what he has given us—We look forward to each day seeing and loving on our precious baby.