Our little tight rope walker!

We know why Par has such long toes—it makes for better tight rope walking! For the past 18 hours Baby Par has been walking the ECMO tight rope—but he has managed to avoid it as of right now. They put him on nitric oxide at about 11:00 p.m. last night. This is one of the “tricks” they like to save as long as they can, as some babies don’t respond well to it, but little Par did give a reassuring response with his blood gases and other measurements which have allowed us to avoid ECMO. The thing with nitric oxide is that it is a very temporary fix, but we pray it bought Par a little time so his body was able to catch up.
We’ve been VERY quiet around him—he really does not like being disturbed. Although we are so proud of our baby and we know our family has come a long way to see him, we have had to limit visits with him—only Rusty and I can go back there for now—otherwise, there is just too much commotion. The picture below is the central line I mentioned in the last post. He has a lot of beautiful hair—but he hasn’t had a bath yet—so it just sticks to his head.



Rusty sat with him for most of the morning and watched Dr. Kays do his thing. We thank God for Dr. Kays’ patience with our son and his “flirting” with the ECMO machine—we know a lot of doctors would have given in by now—it takes a lot of work to just “wait it out”—but the discernment that Dr. Kays has is unbelievable and as of now, our son is not on ECMO. Praise God.



Rusty left at lunch time and I decided to go sit back there with him for about 45 minutes—being near him is really good for pumping incentive. I was just sitting there looking at my baby and thanking God for this miracle. His numbers were looking stable and the nurse came over and told me that Dr. Kays had to replace his breathing tube with a larger one so they had to paralyze him and sedate him for the procedure. She told me if I wanted to touch his head then this would be a good time because it probably wouldn’t make his numbers go down. So I got to stand at his bed with my hand gently touching his precious head for about 2 minutes—he felt so good!!!! After that I just sat and watched him—then I asked the nurse if she’d call me the next time they needed to change his diaper because I wanted to watch. She said sometimes they go days because he has a catheter and he probably won’t poop for a while—and they are so sensitive to being moved it just isn’t worth the risk. Then she decided to check his diaper and wouldn’t you know it—lots of poop!!!! So I got to watch her change the most precious, yet disgusting poopy diaper—good timing because of the sedation and paralytic drugs—and wouldn’t you know it—his numbers didn’t drop—they even went up a little bit! It felt really good being Par’s mama—no one likes sitting in a poopy diaper all day!



Being that Dr. Kays has been at or near Par's bedside for most of his life at this point, he has finally gone home to eat and probably try and sleep some—so that is reassuring that he feels comfortable leaving at this point. This level of care and attention to detail is why we are here. Rusty and I pray that God will give Dr. Kays the clarity to continue making the best decisions for our son. We continue to ask for patience and we thank Him for the gifts he has already given us today—our son, stable numbers, touching his precious head and getting to watch them change his poopy diaper—we won’t take anything for granted! We thank everyone for the continued love and support. Love, Liz, Rusty & Poopy Par