Our Story - Week 4

Our Story
Week 4: 08/10/04 - 08/16/04

Day 22 -- 08/10/04

6:00 AM: Called to check on Joshua, and he's been fine overnight. He had one episode where he desatted, but other than that, he's done pretty well. He had 2 ml of residuals at his 5:00 feeding, but since he's getting 26 ml, that's not too bad. His temperature has been good, so he's able to maintain pretty well "on his own" so far. His nurse, Sharlene, was going to do hand and footprints for us, but didn't want to get him back out of his isolette just to do them, so she's going to try again next time she's in.

12:00 PM: Joshua is doing well. I got to hold him while he "ate." He had spit up earlier, so they took out his OG tube (Amy, his nurse, thought that he might be gagging on the tube), and put in an NG tube (nasal-gastric...it goes in through his nose instead of his mouth). It's a much smaller tube, and once she got it in, he seemed to be more comfortable (when she put it in, he got mad...turned bright red, immediately wet his diaper, and then pooped in it to let her know that he wasn't happy with her sticking the tube in through his nose!). I talked with the doctor who is working with him this week...she said that everything looks good, and that she's not making any changes in his care or medications. She said that the chest X-ray that they did on Monday looked a little hazy (but that if it didn't he wouldn't be in the NICU), but that it looks as good as it can for a NICU baby. That made me feel really good! He only had one spell earlier in the day, and it was associated with him spitting up, so that also made me feel better knowing that there was a "cause" for it. I got him dressed in one of the little "onesies" that Grandma bought for him (we finally found a couple for preemies). It was still a little big on him, but not too bad...he looks SO CUTE in it!!! He got mad at me when I tried to pull it over his head, but once we got it on him, he settled back down and was OK with things.

7:00 PM: Chris stopped in to see Josh on his way to work. He said that all looked good (he didn't get to talk to the nurses much because it was shift change). He did find out that Josh had spit up some, but was otherwise behaving. His temperature was somewhat elevated, but they had turned his bed down a little, and were monitoring to make sure that it came back down to where it belongs.

10:00 PM: I visited with Joshua tonight and did kangaroo care...he was so cuddled in and seemed so content! Sharlene, his nurse, said he had 3 ml of nasty residuals, so she suctioned that off and disposed of it. Because of that and his little spit-up earlier, they didn't give him any food at 8:00. She fed him again while I was there, and he seemed to do OK with it. She said that because of his elevated temperature and the spit-up incidents, they went ahead and checked him for infection...everything came back looking OK. They did blood tests (one number they look at was a little high, but not significantly) and an X-ray to check for air in his stomach, and that was OK, too. They're going to continue to watch him and make sure that he's not trying to fight some kind of infection, so we just need to be patient. He weighed 2 pounds, 14.9 oz.

Day 23 -- 08/11/04

6:00 AM: I talked with Sharlene this morning, and Josh was doing well. He hasn't had any major desats, and his temperature is holding pretty well, and is back down where it belongs. He hasn't had any more spitting up, and has had very little residuals with his feedings (they cut back on his calories a little yesterday, from 24/oz. per feeding to 22/oz. per feeding, to see if that helped, so hopefully it did). They did a blood gas earlier, and the numbers weren't great, so they'll do another one a little later and see if it's any better.

8:30 AM: Chris stopped by to see Josh and visited with him for awhile. Held him for awhile and both started falling asleep, so he went back to bed and Chris came home to bed. He'd had one pretty big desat before Chris got there, but came back up pretty quickly.

2:00 PM: I visited with Joshua for awhile this afternoon. Martha is his nurse again, and she said he had pretty much been behaving since Chris left. She said that he likes his oxygen levels to be around 32%, but then every couple of hours, he seems to realize that it's that low and desats to get some extra. Not the best method of getting attention or oxygen, but I guess since he can't communicate exactly what he needs, that's the best he can do. She said his numbers have all looked good, and that he seems to be doing well. He had one desat spell while I was there, but again came back up pretty quickly. I had words with him when he desatted, and called him Joshua Ryan, so now the nurses know his middle name and can use it when he needs a stern "talking to." :-) His numbers had all stabilized pretty well by the time I left. He's maintaining his temperature pretty well.

6:30 PM: My mom and dad visited with Joshua. Their main comment was "he's SO cute!!!" He smiled, worked his mouth around, stuck out his tongue, did an "Elvis sneer" and generally put on a good show for them. He had his eyes open and was very alert, and basically had a really good evening.

10:00 PM: Chris and I visited with Joshua Ryan. Chris did kangaroo care, and Josh snuggled right in and looked very comfortable. He opened his eyes a lot, and smiled for me, too. I got some pictures...I hope they're good! Daddy and Josh both fell asleep, so I think they were definitely comfortable and content!

Day 24 -- 08/12/04

6:00 AM: I called this AM to check on Joshua. He had a good night and rested well. He spit up a little on his last two feeds, but not a whole lot, and didn't have any residuals. His blood gases have been fine, and his vitals have been stable -- the highest his oxygen has been is around 40%. He was sleeping when I called. He weighed 3 pounds, 0.7 ounces last night, completely naked!!!! YEAY -- we finally reached the 3 pound mark!!!

11:00 AM: Chris stopped by for a quick visit after going to the gym. He's doing well -- his temperature was a little low from where his nurse, Kim, was in the bed changing him and doing his care. She said he's had 2 spells, but both were associated with him spitting up -- she thinks that he may have reflux. She said that a lot of premature babies have it because their esophagus isn't fully developed. She said that he is exhibiting the "classic signs" -- scrunching his face up, arching his back, stretching, then having a spell. She said she will talk with the doctor about it and see what (s)he says. She said that the treatment is usually Reglan (which I'm on for increased milk production, so it makes me feel good that if some of it is excreted in my breast milk, it's not something they wouldn't give him anyway).

6:00 PM: Well, we've had our first "down" of the ups and downs of the NICU. Chris's mom, Barbara, is down to visit, and we went in with her to see him...he was back on the CPAP. We talked with the doctor, and she said that he's been trying to communicate with them all week with the reflux and the spells, and they finally figured out what it was that he needed. He apparently had a bunch of spells this afternoon, plus still had the vomiting with his feeds. They're treating him for reflux with Zantac and Reglan (the Zantac to help the acid and the Reglan to help empty his stomach) -- it should take 1 - 2 days for it to start working and see some improvement. They've also put him on a continuous feed pump that delivers a little bit of milk at a time rather than all at once -- hopefully that'll help with the reflux (he's still getting the same amount over the course of 3 hours, it's just spread out now). As for the CPAP, the doctor said that "he'll let us know when he's ready to come back off it." It is set at a pressure of 4 this time instead of 6, so that's a good sign (I think they usually will move them over to cannulas when the pressure drops to 2 or 3, but I'm not sure, and I know it depends on other factors as well). Hopefully once the reflux gets under control, his spells will get under control, he'll grow a little more, and he'll be able to move back off the CPAP. I'm disappointed, but if that's what he needs, I can't be upset. On the "bright" side, I think this will help keep his oxygen from having to fluctuate so much (as it can if he's having lots of spells), so that's better in the long run for his eyes (frequent large changes in pressure can potentially damage babies' eyes). Also, they've moved his feeding tube back to his mouth. He seems a little less comfortable, but I guess that in the grand scheme of things, it's better overall.

10:00 PM: We visited with Josh tonight...it was not a good visit for Mama. He was on his belly, facing out of the incubator. He looked a little agitated and uncomfortable -- his mouth was all gunky from being dried out by the CPAP (the same thing happened before, but I think it was just a big change from how good he'd looked on the cannulas), and he had his hand threaded up through is OG tube like he was trying to pull it out. They'd put a second tube in to vent his belly (more air gets into his belly from the CPAP, and since he is on the continuous feed, the feeding tube can't function as a vent, so they need a second tube). He pulled it out twice while we were there. He kept trying to turn his head over and get comfortable, but couldn't because of the CPAP. He just looked miserable and uncomfortable. His nurse, Judy, suggested that we close up his incubator because he was getting angry and agitated. I understand that she was trying to help remove stimulation from him and ultimately help him to calm down, but I think he was already upset before we got there, and the agitation was due to the discomfort of the tubes and the CPAP, not us being there. She also said that he shouldn't be out more than 1/2 hour twice a day because it's too stressful on him and keeps him from growing (she showed us that he'd lost weight from last night). I know she didn't mean it this way, but I really felt like she was criticizing us for having let his Grandmom hold him for almost an hour earlier in the day (during which time, he calmed down and relaxed considerably, and slept most of the time)...but the bottom line is that if he shouldn't have been held for that long earlier, the nurse should have told us that then, not this other nurse giving us a hard time later for it. She also tried to tell us that the CPAP is basically the same thing as the cannulas only with a little higher pressure...nice try, but it didn't work. Maybe it is, mechanically (they both provide additional oxygen through the nose...the cannulas at a max of 1.5 L/min and the CPAP at up to 6 or 7 L/min), but the reality of it is that the CPAP is more bulky and uncomfortable, it's harder to move around with, and it forces him to have an OG tube (which he seemed to be gagging on), and it's just not the same! When I indicated to the nurse that I thought he looked miserable and uncomfortable, she said that she'd take care of him and that if he does appear uncomfortable, there are things they can do for him to make him more comfortable (I'd really prefer if they don't have to medicate him, but at this point, whatever they need to do to make him comfortable, I want done an hour ago!). Basically, his nurse just rubbed me the wrong way, and the fact that I wasn't having a good night didn't sit well with that. She wasn't doing anything intentional, and I know she was just doing her job, but I wish she had been more sensitive to the fact that I'm his Mama and I want him to be comfortable and I want to feel good about how he's doing! I just felt like she thought I didn't/don't know how to care for my baby...granted, medically, she knows a lot more than I do, but I'm still his Mama, and I still feel like I have something to offer him, too! Hopefully tomorrow will be better!!!!!!

Day 25 -- 08/13/04

6:00 AM: I called to check on Joshua, and the nurse told me that he had a pretty good night -- that he gets riled up when she gets in the bed for his care, but then calms back down...he's not inconsolable like he was last night. She said he had one spell, and "when he spells, he spells BAD," but that they got him back up and he's doing fine. His oxygen went up and down overnight, but was round 42% when I called and she was in the process of weaning him back down. He weighed 2 pounds, 12.8 oz. last night.

10:30 AM: Chris stopped by to visit Joshua, and met his nurse Angela, whom he really liked. She said that other than the one spell around 5 AM, he's doing well. He explained the situation from last night, and she said that she didn't know who was supposed to have him tonight, but she'd try to make sure that it was someone different. I thought that was really nice of her!

11:45 AM: Mom and Barbara visited with Josh...they both liked Angela as well -- they both commented on how she talked with them for quite awhile and answered all their questions. She said that the fact that he is doing the things he is doing (was on the cannulas, is feeding and tolerating it well, etc.) is "remarkable" -- that he's so young and is doing great for his age! She indicated that typically in most preemies, the apnea spells tend to taper off by around week 35 -- hopefully he'll be ahead of that mark as well, or at least be in the group of "most preemies" who quit having the spells! She was very positive, and Mom and Barbara both felt reassured after talking with her.

7:00 PM: Chris visited with Joshua and said that he's doing well. He looked good, and all his numbers were stable. His nurse was really nice (Jocelyn or Jacqueline, maybe?). He asked her about me doing kangaroo care with him later, and she said that should be fine.

10:15 PM: I had a really good visit with Joshua Ryan -- MUCH BETTER than last night!!! He looked 1000 times better and more comfortable!! His face was cleaned up (his cheeks looked chubby, but I think it's because of the CPAP), his OG tubes were going straight down the center and were taped to his chin (his nurse said they don't gag on them as much that way). [Her name starts with a G and looks to be Swedish or Scandinavian...it sounds like Jocelyn, but I don't know exactly what it is.] I did kangaroo care with him -- he settled in pretty well, and his numbers stayed pretty stable. She also did hand and foot prints for me -- YEAY! We did left sides...for one it was easier to get to his left hand and foot the way he was laying, and also because he has all 5 fingers and toes on that side. She made the comment that we should do the right hand, too, so that if he has plastic surgery later to fix his hand, there's something to show how it was before...but I can do that when he comes home if I really want to -- I just want a record of how small he is right now! Christy is his nurse overnight (she had him several weeks ago when he was in the other room, and I really liked her).

As for the medical specifics, Josh has done well -- no major spells, and he seems to be doing OK with his feedings. He's on Zantac and Reglan for his reflux, and it seems to be helping -- no spitting up, and no major residuals. They're going up from 22 calories to 24 calories per ounce of food tomorrow -- it makes the milk thicker and harder to bring back up with the reflux, but can also be richer and harder to digest, so they will have to work to find a good balance. They changed out his incubator (she didn't know that it had just been changed out) -- I like this one better because it has the portals again to get in (it's not the same as his original bed, but is similar), and it's much easier to get to him (and it's quieter and less invasive when you do). He's in the process of "graduating" to the next size up in diapers. The new ones are still WAY too big, but the old ones were getting too small and leaking, so they've moved him up to the next size. They're also moving his care times to a "Q4" schedule -- 12:00, 4:00, and 8:00 throughout the day. He's on the continuous pump food, and is getting approximately 8.6 ml per hour (which comes to approximately the 26 ml every three hours that he was getting). All in all, it was a really good visit!

Day 26 -- 08/14/04

6:00 AM: I called to check on Joshua this morning, and he had a good night. His oxygen has been in the upper 20s to low 30s throughout the night. Christy weighed him at around 4 AM, and he weighed 2 pounds, 12 oz. He's tolerating his food well -- no regurgitation and no residuals. He had one little spell, but other than that, did fine.

8:00 AM: Chris visited on his way home from work, and everything looks good. He has Angela for his nurse again today.

12:30 PM: I visited this afternoon with his Aunt Sarah. Josh looks a little puffy (Angela said that he's probably retaining a little water, and that he'll probably go back on the diuretic soon for it). His temperature was a little low because Angela got in his bed and did his assessment and care, then the doctor came in and got in to do an assessment, and then the respiratory therapist came in and did his treatment, so he'd been "out" for awhile. She turned the temperature up on his bed a little, and his temperature had come back up by the time we left. She said that he had some big poops...that he went through 5 diapers during all the different people coming through (so we shouldn't be surprised if he loses a little weight tonight). He had a really good blood gas -- the doctor was thrilled with it! He's on the new "Q4" care rotation of every 4 hours instead of every 3 like before (since they don't have to plan his care around his feedings). They've also moved his respiratory therapy from a Q6 (every 6 hours) schedule to a Q4 so it coincides with his care times (she assured me that it's not because he's doing worse with his respiratory progress, it's simply so that in between care times, they can leave him alone as much as possible to let him rest and grow, but that an every 8 hour schedule, Q8, is not quite often enough).

7:00 PM: Chris visited on his way to work. He got to hold Joshua for 15 - 20 minutes, and he did well. His numbers have been good all day, and he's been satting well. His nurse didn't mention any spells, so hopefully that's a good sign! His temperature has been up and down all day (probably the new bed and the care schedule), but his nurse, Mandy, is going to turn his bed up a little so that he's nice and warm and ready for kangaroo care later tonight.

Day 27 -- 08/15/04

6:00 AM: Josh had a good night -- no spells! :-) He's tolerating his feeds well. His nurse weighed him 3 times last night because she thought it was a mistake, but got the same thing each time...he's 3 pounds, 3 ounces!!! She said he did have quite a few desats overnight, but they were due to him squirming around and weren't followed by any spells, so we shouldn't worry. He got a little cool, so she turned up his isolette a little and covered him with a blanket. Overall, he had a pretty good night.

1:00 PM: I visited with Josh. He looked good, but seemed to be a little bit squirmy and uncomfortable. He had a little bit of milk backed up in his OG vent tube, so maybe he was uncomfortable because he was gassy? He settled down pretty quickly, though, and was sleeping comfortably by the time I left, so I felt OK with things. I talked with his doctor, and she said that his sodium levels were back up where they belonged, so she's cutting his supplement back a little and will see how he does (if he can maintain on his own). She said that he's doing very well (he's doing exactly what they want to see him doing), so she wasn't making any major changes in his care or his medicines. I talked with his nurse about visits once I go back to work -- decided on a quick visit (if I can get it together and get in there) in the morning, just to check on things, and then the option to hold him or do kangaroo care around 8:00 PM would be good because we'd get to see him around his care times and he'd be awake and up for visits.

10:00 PM: I visited with Joshua and did kangaroo care. He did very well -- seemed very comfortable and settled. After about 1/2 hour, I went to put him back in his isolette and he had a small spell (I'm choosing to believe that he just didn't want to leave his Mama)...I'm guessing he either got too comfortable, or he was just ready to go back to bed. It wasn't a big spell -- I just gave him a little bit of "bouncing" while I held him and patted his little bottom, and he came right back up.

Day 28 -- 08/16/04

6:00 AM: Talked with Joshua's nurse, Christine. She said he's doing well and is all tucked in. He's at 9 ml of food per hour (continuous feeds, still) and is tolerating it well. His oxygen has been around 30%, and he had one "almost" spell -- he flirted with it, but brought himself back up without assistance, so she didn't count it against him. He weighed 3 pounds, 5 ounces without his CPAP hat!! The pressure on his CPAP is down to 3, so we're moving back towards the nasal cannulas! YEAY!

6:00 PM: We visited briefly with Joshua Ryan...took our friends Sara and Brad to meet him. He looked good. His oxygen level was up a little, but his nurse had just worked with him and turned it up some, and was in the process of weaning him back down.

8:00 PM: Chris and I visited with Josh for awhile. We both held him...he was a little squirmy, but his numbers all stayed good. He was fairly active and alert -- he opened his eyes, smiled, etc. While we were there, his oxygen needs decreased and she was able to turn is oxygen down a little. It was a good visit.

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