Our Story
Week 5:  08/17/04 - 08/23/04
 

Day 29 -- 08/17/04

6:00 AM:  Joshua Ryan is back on the nasal cannulas!!!  Around midnight, they switched him over to them.  His nurse said that he slept really well until his 4:00 care time.  At that point, his carbon dioxide level was up a little in his blood gas, but they went from 1 to 1.5 L/m pressure on the cannulas and took another gas to see if the carbon dioxide level went down (which it did).  His nurse said that he's working a little bit harder at breathing, but that his oxygen supplement levels are staying about the same, and as long as his blood gases stay good, he'll be able to stay on the cannulas!  He's tolerating his feeds well (still peeing and pooping productively, and no regurgitation of his food).  He's up to 3 pounds, 6.2 ounces!

1:00 PM:  Chris visited with Josh and said that he's doing well.  He'd had 2 spells since this morning (his nurse, Christy, reminded Chris that the cannulas are just a "trial" right now, and if he begins having a lot of spells, he'll go back to the CPAP).  He still has 2 OG tubes in (left over from when he had the CPAP), and they won't take those out or change them over to a single OG or NG tube until they see how he does on the cannulas.

7:00 PM:  Grandma and Grandpa Layne visited and said that Josh was doing well.  He was wide awake and alert.  His eyes were wide open, and he smiled at them a bunch!

8:30 PM:  Chris and I visited with the little man, and he's doing well.  He hasn't had any new spells, so that's good news!  Chris held him for a short while (he was a little cool, so we didn't keep him out for too long).  He's still hanging in there with the cannulas.  He was fairly alert with us...seemed to get a little tired toward the end of our visit and started drifting off, but that was OK...it was bedtime for him!  He weighed 3 pounds, 6.9 ounces.

Day 30 -- 08/18/04

6:00 AM:  I called to check on Joshua, and he had a really good night.  He slept peacefully from midnight till 4.  They took a blood gas at 4:00, and his carbon dioxide was up a little (at 65), but his nurse, Sharlene, turned him over, cleaned out his nose, and basically just made him more comfortable, and when she took another gas, the levels had gone down to 55 (for him, they want his carbon dioxide levels to be in the 40s - 50s).  Sharlene said that he was alert and awake from around 4 till 5, so she held him a little while he was awake (she commented on how cute he was).  He's tolerated his feeds well, and had no spells...he desatted once, but brought himself out of it without any assistance, so that was good.

12:30 PM:  I talked with Joshua's nurse, and she said he has been doing well.  His doctor has increased his feeds from 10 ml to 10.5 ml per hour, and he's doing fine with that.  He's been awake and alert, and been laying on his back.  His oxygen level has been in the 50s, but she's put him on his belly (he sats better there), and is in the process of weaning him down on the oxygen.  His last spell was around 6:00, so that's good.  She indicated that if he continues to tolerate his feeds well, he should go back to bolus feedings (all at one time) every 3 hours instead of the continuous feeds that he's on now.  That's a step toward bottle- or breastfeeding, so hopefully that'll happen sometime soon.

8:00 PM:  Chris and I visited with Joshua.  Chris had stopped by around 5:00 and he was doing well...still doing well when we got there (he was awake and alert).  We did kangaroo care -- YEAY!!!  He sucked on my finger for part of the time (he's got a strong little tongue and mouth!)...I can't wait until he can start nursing!  He did great.  He snuggled in and got nice and comfortable, and was awake for the first part of our visit.  Once he got comfy, he settled down and slept for the rest of the visit.  His numbers stayed good, and his last spell was early this morning.  He's doing well with his feeds.  What a great visit (warm fuzzies for Mama!).

Day 31 -- 08/19/04

JOSHUA RYAN is 1 month old today!!!!

6:00 AM:  Talked with Tammy, Josh's nurse, and she said he was great through the night.  He had no spells, and tolerated his feeds well.  She said that he was sleeping now, and had slept well most of the night (he gets fussy after his respiratory treatments, but then settles back down pretty well).  he weighed 3 pounds, 7 ounces.

1:20 PM:  I talked with Joshua's nurse, Rebecca, and she said that he's doing well.  Still tolerating his feeds (they're going up from 10.5 ml / hour to 11 ml / hour), and he's had no regurgitation or residuals in his NG tube.  She did his foot exercises with him, and he did OK with those.  He hasn't had an spells (some desats because of wiggling, but nothing major).  She took a while getting to the phone because he felt that it would be appropriate to pull out his nasal cannulas...not a good option!  She's working on getting them taped in a way that will keep him from pulling them out.

8:00 PM:  I had a great visit with Little Man!  He was sleeping on his belly when I got there, but the respiratory therapist came around to do his treatment so we got him up for that.  I actually got to do the treatment (the therapist told me that some babies go home needing respiratory treatments, so it's good to learn how to do it).  All you do is put the little mask over his nose and mouth, and spray with the puffer, wait a few seconds so that he gets the chance to inhale the medicine.  I also changed his diaper and took his temperature (it was up to 100, but probably because he had been snuggled under a blanket...I got him out of the bed and his nurse turned the temperature on the isolette down a little, and by the time I left, it was down to 98.6).  Chris stopped by after work for a visit (I was going to let Chris hold him since it was his birthday, but he said that he felt grimy from work, so I got to hold him...not that I was upset about that or anything :-D).  Joshua was wide awake and alert, looking around and making faces at Chris and me.  What a little cutie!!!  He got the hiccups (poor little thing, they shake his whole body), so I turned him around in my lap so I could sit him up and rub his back and try to get rid of them (no luck)...he looked so cute sitting up!  We got a few pictures, so hopefully, some of them will come out good.  Overall, it was a really good visit -- his vitals were good, he seemed comfortable, his feeds have been going well.  He had one small spell while we were getting him settled, but came back up quickly and was fine.

Day 32 -- 08/20/04

6:00 AM:  Josh is doing well.  He's done fine with his feedings, and only had 1 spell.  His oxygen levels are in the 40 - 50% range, and he weighed 3 pounds, 9.1 ounces.

3:00 PM:  I visited with Josh after I got off work.  Chris visited around 1:00, and my mom visited around 2:00, so it was a busy afternoon for him.  Rebecca, his nurse, had him all snuggled in (all I could see was his head).  She asked if I wanted to do kangaroo care...who am I to turn it down?!?  So we snuggled for awhile -- he settled in and slept comfortably on my chest for about a half hour.  It was a good visit.  I had just pumped before I came in, so Rebecca got that milk to give Joshua at his next feeding (I've read that if possible, it's better to give babies fresh rather than previously frozen milk...it makes sense...so I was glad that it worked out with the timing of the visit!).

Medical information from the day:  Chris had asked about a follow-up on his cranial sonogram, but the doctor wasn't able to talk with him before he left.  She left information with Rebecca to pass along to us...they will do a follow-up sonogram in several weeks, mainly to verify that the original bleed has been absorbed and no additional bleeding occurred (mainly, it's just a "peace of mind" test to verify that nothing has changed).  As for the PDA, no murmur has been heard recently, so there is no talk of another echocardiogram because there is no evidence of the PDA's return.  His feeds are going well, with no regurgitation, so that indicates that his reflux is getting under control.

8:30 PM:  Chris held Joshua tonight.  He was fairly alert and awake.  He'd had several spells over the course of the day, but none since 7:00 when Andrea, his night nurse, came on.  He tried to have one while Chris held him, but came out of it quickly.  They have turned his oxygen pressure down from 1.5 to 1.25...we'll see how he does.  If he begins having more spells, they'll take it back up to 1.5.  We had a pretty good visit -- Daddy got to have some hands-on time, and they did well together.

Day 33 -- 08/21/04

6:00 AM:  Called to check on Joshua this morning.  Andrea was working with him in his bed, so she couldn't talk, but passed along that he'd had a good night, and that he weighs 3 pounds 10.3 ounces!  He's getting big!! :-)

2:00 PM:  Chris and I visited with Josh...he was snuggled in and sleeping.  His vitals looked good -- he tried to have a spell while we were there, but came out of it quickly pretty much on his own.  Since he was sleeping, we left him alone and will go back later to visit.

8:30 PM:  I visited with Joshua -- didn't hold him because he was snuggled in and sleeping.  I cradled his head and just watched him -- what a sweet little boy!  Andrea had dressed him in this little blue and white sailor outfit (she thought we'd brought it, but I think it was actually one belonging to the NICU).  She'd taken a couple of pictures of him for us because she thought he looked so cute -- their printer is out of ink right now, but once it's working again, she's going to print them out for us.  His vitals and saturation levels all looked good.  Andrea commented on how much better his saturation levels seem at night (because he's resting well) -- I hope that the good sleeping overnight will continue once he comes home!  I asked her about bottle and breastfeeding, and she said that usually happens around 36 weeks adjusted age (he's almost 33), but he'll have to be back on bolus feeds and tolerating it well before they'll try him with a bottle or with nursing.  Hopefully that'll come together soon!

Day 34 -- 08/22/04

6:00 AM:  Spoke with Andrea this morning, and Joshua is doing well.  He's done well with his feedings, and only had one spell, which he came back out of himself without assistance.  He weighed 3 pounds, 11.2 ounces!

12:00 PM:  Chris and I visited with Josh for a few minutes.  Our friends Jack and Misty came down to see him, and were surprised at how much he's changed since when they first saw him (he was only a couple of days old).  He did really well...I held him while they visited, and he was awake and alert.  I actually got him out of the isolette and then back in all by myself (which is no small feat with all the wires and tubes that have to move with him!). :-)  Chris talked with the respiratory therapist, who commented that if Joshua keeps doing as well as he has been, he'll be moving to the Intermediate Care nursery soon (of course soon is relative...we're thinking in weeks rather than days at this point....).  Overall it was a good visit.

8:00 PM:  Chris and I visited again with Josh.  He was wide awake, and Chris held him.  He had a lot of desats into the mid 80s, but always came right back up into the 90s where he belongs.  We talked with his nurse, Kristi, about how the doctors might handle his feeds.  She said that some doctors are more aggressive than others, and it just depends on who the doctor is this week...provided he continues to do well with his feedings, they may switch him back to bolus feeds and see how he does.  I hope that will happen, because that's one more step toward regular feeding!  He started drifting off while his Daddy was holding him, so we put him to bed and came home to bed ourselves.

Day 35 -- 08/23/04

6:00 AM:  Talked with Kristi, Josh's night nurse.  He did well overnight...had one spell around 5:00 that she had to actually go over and open his isolette (that's all it took to bring him out of it, though), and flirted a couple of other times, but brought himself out of them without assistance.  His oxygen supplementation dropped to 27% at one time over night (that's good...we want him to get down to 21%, which is room air), but that was right before his spell, so she turned him up a little...he's in the 35% range now (which is still fairly low).  He dropped down to 1 L of flow (from 1.25) on the cannulas, and seems to be doing well with that.  As long as he doesn't have too many spells, that should hopefully be able to continue to come down more and more.  He's doing well with his feeds (slight residuals, but nothing major), so hopefully we're continuing toward the option of bolus feeds, which will eventually get us to bottle and breastfeeding.

1:00 PM:  Joshua has had one spell so far today, but is doing OK otherwise.  Chris talked with his nurse, and she said that the doctor had written orders saying that provided his respiratory rate stays high enough, we can try some non-nutritive nursing with him.  Non-nutritive nursing is when I pump to express my milk, then let Josh “nurse.  He doesn’t get any milk, so he doesn’t have to coordinate the suck-swallow-breathe reflex, but he gets to “practice” sucking so that when he begins to bottle- or breastfeed, he is familiar with the process.  I’m really excited about it!!  They are also going to do another chest X-ray to see how his lungs are progressing.

3:30 PM:  I visited with Josh.  He was doing well and behaving himself.  His nurse told me about the non-nutritive nursing, and we made arrangements so that I could come back around 7:30, pump, and then do the nursing with him while he gets his food (hopefully, he’ll start to associate getting full with the nursing).

8:00 PM:  I got to the hospital early and pumped, then helped get Josh’s diaper changed and took his temperature.  Chris got there right around 8:00, and about that time, we got him out of his bed to try the non-nutritive nursing.  I got Josh all settled, and let him give it a try.  He wasn’t quite sure what to do, but managed a little bit of sucking…he’s suck, then sleep.  He never really latched on and did anything that would have been productive had I not pumped, but it was his first time, and I think he did pretty well.  All his numbers looked great while we were doing it…at one point, he tried to spell, but I think he may have gotten a drip of milk and managed the suck and breathe part, but didn’t quite manage the swallow and got himself “choked.”  He recovered quickly and did fine afterwards.  All in all, it was a good visit…if nothing else, we got great skin-to-skin contact!  I get to try it with him once a day as long as he’s up to it, so I’m very exited about that!

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