Our Story
Week 8:  09/07/04 - 09/13/04
 

Day 50 -- 09/07/04

5:00 AM:  Josh was sleeping well.  He was awake but quiet around 2:00 (he gets fed at 2:30)...the nurse said he woke up but didn't make a peep.  He hasn't had any spells, and is satting around 97-98% with his oxygen in the low 30s.  He's done well with his feeds...no spit ups, no residuals.

1:00 PM:  Talked with Sarah from speech therapy.  He took 16 ml from the bottle and did very well.  They turned him up to 1 L/min. while feeding him...she said he desatted once, but brought himself back up without assistance.  She's going to come back tomorrow for his 2:30 feed and see how things go.  She also wants us to make it a priority for him to be sucking on something when he gets his NG feeds, so he begins to make the association between sucking and a full belly.

8:00 PM:  Josh is doing well.  My sister, Sarah, visited with me at 7:00, then Chris came at 8:00 and did kangaroo care.  Josh sucked away on his pacifier, and Chris slept.  It was a pretty uneventful visit -- Josh satted around 100 most of the time, with his oxygen levels in the low 40s.  No real changes.

Day 51 -- 09/08/04

5:00 AM:  Josh's oxygen has been in the 30 - 35% range and his flow is at 0.5 L/min.  He weighed 4 pounds, 11.8 ounces.  He's peeing and pooping well, and his feedings have been going well.  His nurse fed him a little early so that he could get as much as possible before his eye exam (he's not allowed any food after 6:00 for his 8:00 eye exam).

11:00 AM:  Josh's eye exam went well -- there were no real changes in his eyes, so they'll just do a routine follow-up in two weeks.  He had one spell in the morning, probably associated with the eye exam.

3:00 PM:  Chris went for Josh's PO feed.  It went well, but not as good as yesterday.  I got there right at the end -- he took 6 ml, and kept falling asleep (probably worn out from the eye exam).  He didn't have any spells...desatted once or twice, but brought himself back up.  Speech will try again with him tomorrow and see how the feeding goes (Chris will try to be there, if possible).

8:00 PM:  Good visit!  I did kangaroo care with Joshua -- it took a couple of tries to get him settled comfortably, but once I did, he snoozed and sucked on his pacifier.  All his numbers looked good, and he did well while I held him.

Day 52 -- 09/09/04

5:00 AM:  Joshua Ryan is doing fine...sleeping well.  His oxygen is at 36%, and he hasn't had any spells (a few desats, but he brought himself back up on his own).  He weighed 5 pounds exactly!!!  He's tolerating his feeds well, and had a good night.

3:00 PM:  Chris went for Josh's 2:30 PO feed.  He did well...took 15 ml, and Sarah said he's showing a lot of improvement -- he'll actually suck, then stop to breathe, then suck some more, all on his own!! :-) :-)  Chris talked with Andrea (from physical therapy), and she said that when we do his stretches, we should hold them a little longer...Josh's muscles are getting tighter, which is good, but it means that we need to work his foot a little "harder" to make sure that it ends up straightening back out (she wants to avoid splinting it if at all possible).  Chris asked about his hand (maybe getting it "included" in his next chest X-ray -- she said that she'd talk to Dr. Mirenda and see what he wants to do...he may do an ultrasound if he doesn't want to do the X-ray.  Andrea thinks that Josh may have some issue with the joint(s) in his middle finger, but said that Dr. Mirenda could better evaluate that situation.

8:00 PM:  We had a good visit with Joshua.  Took his temp and changed his diaper, then did kangaroo care while he "ate."  He settled in and sucked on his pacifier until he fell asleep.  Sats were between 95 and 100%.  It was a good visit.  He's up on his volume to 43 ml of milk per feed.

Day 53 -- 09/10/04

5:00 AM:  Josh is doing great.  He weighs 5 pounds, 2.2 ounces, and has done fine with his feedings.  He's been in the mid 30s on his oxygen.

2:00 PM:  Josh took 27 ml on his PO feed...Sarah was pleased!

8:00 PM:  We visited with Joshua...Chris did kangaroo care -- he did great!  His oxygen was down to 30%, and he was satting between 98 and 100%.  He sucked on his pacifier at first, then slept.  He weighed 5 pounds, 2.8 ounces.  The nurses will start PO feeding him tomorrow -- I'll try to be there for his 11:30 feed.

Day 54 -- 09/11/04

5:00 AM:  Josh had a good night.  No spells, and he tolerated his feeds well.  His oxygen was in the 30-40% range.

11:30 AM:  I visited with Joshua -- he's doing well.  His nurse, Bev, did the PO feed.  I was a little concerned because she completely ignored the instructions that Sarah (from speech) had posted by his bed -- I think most of the milk ran out the other side of his mouth.  I tried to tell her (nicely) that I thought he was sucking and then it was running out the other side of his moth rather than him swallowing it, but she said that the cloth that she puts under his chin "wasn't too wet" so she thought he got most of it.  I think she was rather careless and in a hurry to get it done.  I'll talk with Sarah on Monday and see if she can't make a note on his chart or something that might encourage the nurses to be a little more careful with his feeds since he's just now learning.  He took the whole bottle (45 ml), but I think he only swallowed maybe half of it.  I'm glad he's still got his NG tube for other feeds!

8:00 PM:  I visited with Josh again.  My mom came and got to hold him.  He's doing well -- 98.7 on his temp.  Chris came after he got off work and took over Mom's place.  I pumped and then did non-nutritive nursing with Josh.  He did pretty well -- he'd suck for a few minutes, then seemed "agitated" -- rolling around, pushing off with his hands, shaking his head around -- very active.  After awhile, I stopped trying the nursing and just let him rest with his pacifier...he calmed down and slept...I rested with him.  I just love cuddling!!!  It was a good visit.

Day 55 -- 09/12/04

5:00 AM:  Joshua's oxygen was just above 30%, and he's doing well.  He rested well over night, and has been nice and quiet.  He hasn't had any residuals on his feeds, and they've gone pretty well.  He weighed 5 pounds, 3 ounces.

11:30 AM:  I visited for Josh's PO feed -- he did GREAT!  His nurse, Dee, was wonderful...really careful that he got pacing and support, and she explained everything to me as she went.  I held him afterwards...he was wide awake and alert.  It was a good visit.  Dee recommended to the doctor that Josh go to 2 times a day on his PO feed, and he wrote the orders while I was there -- and I can do one of the feeds!!! :-)

8:00 PM:  I got to feed Josh!!!!!  Yeay!!!!  He did well -- he kept trying to fall asleep, but finally took the whole bottle.  His nurse kept having to rub his little head with a cool wet washcloth in order to wake him up.  He desatted once, but I think it was he was falling asleep and not swallowing what was in his mouth.  She turned him up a little, and he was fine.  He was wide awake and alert after his bottle...the little stinker!  What a great visit!

Day 56 -- 09/13/04

5:00 AM:  Josh has been doing fine...no real changes since last night.  His oxygen has been anywhere between 35 and 60%, but mostly has been in the 35-40% range.  He had 2 brief "spells" where he desatted down into the 60s...his color changed a little, but he came back up pretty quickly.  He is tolerating his feeds well, and has slept very well (she had to wake him to change his diaper).  He weighed 5 pounds, 4 ounces.

3:00 PM:  Chris visited and talked with Sarah (from speech) and Andrea (from PT).  His feeds are going well.  The doctor wrote to allow 3 PO feeds per day, provided Josh does well with them (the orders are to not push the 3rd one if he doesn't seem up to it).  Sarah is pleased with his progress.  Andrea said that Josh's hand and foot are doing well.  She thinks the bone in his right leg is elongating, which is good.  She wants us to keep working with his foot and be patient (since it's a little tighter, we may have to work a little more slowly with his exercises).  She thinks that his right hand has the first set of knuckles (closest to his fingertips), and the 3rd set (closest to his palm), but that he might be missing one or more of the second ones.  She also said that his thumb is set back slightly, creating a "lobster claw."  She's not sure about separating his fingers...she suggested making a list of questions and calling Dr. Mirenda to discuss everything.  I talked with Sarah, and she is pleased with Josh's progress -- she wants to meet with me at 5:30 on Wednesday afternoon to feed and touch base on his progress.

8:00 PM: Visited with Little Man.  He was wearing his train outfit...such a little cutie!!!  We got him up to feed him -- Chris started, but wasn't 100% comfortable with it all, so I finished with him.  He wasn't as sleepy as before, but did try drifting off about half way through.  We finally got him to finish the bottle...we cuddled some after that, and of course he was wide awake and alert.  It was a good visit overall.

Back to NICU Page