Progressing Par

We woke up a little late this morning not only due to my typical night-time pumping, but also due to the fact that our little girl (dog) Tiffany decided she HAD to go out at 4:00am. We called the NICU when we woke up to find out how Par was doing and the daytime nurse reported that Par had a good night and that he was doing well. His blood gas was good (not exceptional but good) and that was basically all the information we had at that point.

When we got to the NICU we were still a little apprehensive because when we left Par last night we let him know that he may have to “fend for himself” during the night and once again reminded him that we were at Homewood Suites in room 311 if he needed to get in touch with us. When we got to his bedside we were happy to see not only that Dr. Kays had been there, but that he had also ordered a gradual weaning of his oxygen and breaths per minute (provided by the ventilator). The instructions were to wean his oxygen down gradually (2 points for every favorable blood gas) and to wean his breaths per minute down 4 breaths per minute each time his CO2 levels were below 56. Par’s most recent blood gas was taken at 4:00am and Dr. Kays had ordered that they would be taken every 8 hours (a very gradual weaning process), so his next one would be at noon. We also were told that a “babygram” was ordered, which is a more extensive x-ray of the full body and abdomen to determine whether or not the area of concern in his intestines is an area of infection or just nothing.



His blood gas at noon was good, so they weaned his oxygen down to 44 (room air is 20) and his breaths per minute were at 52. During our morning visit with Par he was pretty much asleep until I had to go pump at a little after noon (after the blood gas). While I pumped Rusty sat at his bedside and played his music for him (he was awake but not very responsive). About the time I came back from pumping he was starting to become wide awake and was intent to listen to his music and take turns looking at me, then Rusty, then his blue bear (dangling from above), and then back to me. He definitely can tell the difference between his mom and dad and also likes looking around to see what else is there. Rusty was planning on leaving to go work when I got back from pumping but since Par was awake and obviously taking enjoyment in having his mom and dad (and blue bear) there Rusty didn’t end up leaving for another hour or so.



During this time, we also got to speak to the nurse practitioner about Par’s x-rays and she told us that his antibiotics had been discontinued and that the “area of concern” was either nothing or had been knocked out by the antibiotics. Nevertheless, they will continue to monitor it in the upcoming days. Although I had hoped Par might be able to start feeding today or tomorrow (with small amounts of breast milk delivered directly to the stomach via tubes), we were told that they would hold off for a few more days to make sure the incident in his intestines wasn’t an infection or bacteria. In any case, although feeding is delayed, we are still encouraged because Par has still had some poops indicating that his intestines are performing normally.

Rusty and I noticed that Par's hands were sort of sticky from all the tape he's had on him so we decided to clean his hand. You would have thought we were sticking him with needles--he was so upset. As soon as we stopped (we each had a hand) it was as if nothing had happened.





When Rusty left mom came to sit with me while I worked on Rusty's stocking. Dr. Kays came by and seemed encouraging about Par's progress. He checked on Par and looked at the ventilator and said, "Looks good. We'll see how he does!" and then left. It was good to see him after a few days--I just hope Par continues to do well on the ventilator.

When we went back tonight, Par was on his tummy in what looked like a somewhat uncomfortable position. Although we wanted to move him around in an attempt to make him more comfortable, he was sleeping well and continued to do so during our visit, so we left him to the care of his nurse. I don't think I could bare to leave him awake like I had to last night. During our visit we learned that his oxygen levels were good, but that his CO2 level was at 59 (above 56). So, per Dr. Kays’ orders, his oxygen levels were weaned down 2 points to 42 and his breaths per minute remained at 52. We were also told during our daytime visit that Dr. Kays nearly always weans things (except for things weaned in extremely small amounts) in even numbers because he seems to have an aversion to odd numbers. Being that I also have an aversionj to odd numbers, I feel even more comfortable about putting my child's life in this man's hands! Before we left, we read him his bedtime prayer as usual (with his music in the background) and said our goodbyes to him and told him we’d be back to see him in the morning.

We spoke to Jonathan's mom earlier today and learned that his kidneys are not functioning properly--please pray that God will heal his kidneys so he may continue on his journey of fighting his CDH so he may have his repair surgery. Also, Ella's rough night was due to her left lung collasping--pray that her lung will be strong and able to take the next steps for her recovery. We also ask that you will pray for their parents so they may be refreshed each day so they can be 100% there for their baby and enjoy each day with them, while being able to make critical decisions about their care.



We thank you for all of your prayers--we feel them constantly and we give all the glory to God for the miracles of the friendships we've made and the progress of Par. We thank you for being a part of our journey.

Much Love, Liz, Rusty & Par