Sweet Little Par...

Sweet little Par is healing well. When we visited this morning his incision already looked better and he isn’t swollen at all—which is surprising to us because we expected him to be swollen all over. When we got to his bedside Dr. Kays was there with one of the reps for a piece of medical equipment he is using—they decided to try something new to monitor the intestines and the kidneys. They put the two additional monitors like the one on his forehead. One is on his back monitoring the kidney that was up in his chest and the other is on his lower abdomen monitoring his intestines. Dr. Kays admitted that he isn’t sure what he is looking for with regards to numbers from the monitoring—but if Par establishes a baseline for himself, he can then know if something changes if the numbers change drastically. These monitors aren’t harmful to him at all—and we continue to learn more and more about treating CDH—we feel honored to be part of this experiment. His other numbers aren’t where they need to be but Dr. Kays is okay just watching them—his main concern is the abdomen. It has been soft but you just never know—he’s had good urine output which is a good sign, but Dr. Kays admits that he can’t know for sure and that “he isn’t finished worrying about his abdomen quite yet.” That is fine, we hope he never quits worrying about our son, period.

When mom and I went back after lunch Par was more awake than I have ever seen him. He would open his eyes and look at me and then close them. Open them again looking somewhere else—eventually he kept them open and was moving his eyes around. He seemed to be a little “drunk” still from all the drugs from last night—plus, he is still on sedation medicine. He seemed very alert and was moving his legs and arms around. At one point he started crying really hard—it was so hard to watch—because as I have said before, no sound was coming out—but you could tell he would have been wailing if those tubes weren’t in his mouth. As his mother, this is VERY difficult to watch for a number of reasons- first, I immediately think he must be in pain—there is a 9 inch incision in his tummy and he did have major surgery last night—but then I remind myself of what Dr. Kays says—“Babies cry. It is what they do.” Knowing that my finger touching his hand calms him down reassures me he isn’t in pain or he would still be crying. The other reason is that my instinct is to pick him up and hold him to calm him down—but I can’t. Forget that he is so delicate because of his situation—but he is tangled up in the web of tubes and wires so it would be difficult to accomplish anyway. I’m sure it would be harder to resist if he were just laying there without any tubes—so I guess I can thank God for putting that barrier there so I’m not overcome with my motherly instinct. It was especially difficult to leave him this afternoon with him so awake—but of course, I had to pump and the nurse had to change some tubes and before I’d be back from pumping, there would be shift change and I would have to leave anyway. I could have pumped at his bedside but I just felt like that would be too much to do for one pump (they bring privacy screens, the pump, close curtains—it is sort of an ordeal).

I’ve been especially tired today from being up so late last night—again, I don’t know how Dr. Kays does it. When Rusty and I arrived in the NICU this morning tons of changes had been made—Ella (Par’s friend) had been moved to a more “social” part of the NICU. The little boy right next to Par had been taken off ECMO (praise God) and his parents have been told his repair surgery is in the very near future. The baby on the other side of him had been moved to a bassinet instead of the kind of bed Par is in.

Rusty and I went back to visit with him this evening—he was sound asleep. His little lamb was sitting next to him and his blue bunny was serving as a tube prop. His left hand was in mid-pat as though he fell asleep while patting the lamb. It was so cute. I think his incision looked even better—his numbers were about the same and they had to go up on the nitric oxide a bit. I pray that he’ll have an uneventful night—the more time that goes by without any “complications” the better—obviously—but with regards to his abdomen, I’m just waiting for Dr. Kays to tell us when we can breathe a sigh of relief.







Thank you for all of you prayers yesterday—I know that every one of them was heard—how amazing to think of all those prayers for our son being lifted up to heaven for the glory of the Lord! If you go to ellawest.com and see yesterday’s post there is a really powerful picture they’ve included. Thank you again for your prayers.
Liz, Rusty & The Upgraded Par