Our Story
Week 6:  08/24/04 - 08/30/04
 

Day 36 -- 08/24/04

5:00 AM:  Josh is doing fine...had a couple of spells but they suctioned out his nose to clear his airway and he's done much better.  He's at around 40-50% on his oxygen, and is tolerating his feeds well.  He weighed 3 pounds, 15 ounces (she weighed him twice to make sure it was correct)...we're almost to 4 pounds!

11:00 AM:  Chris visited Josh and said that he's doing well.  He's up to 11.4 ml/hour on his food and seems to be tolerating it well.  He's retaining some fluid (probably explains the weight gain), so they're putting him back on his diuretic to help with that.

8:00 PM:  Visited with Josh...all his numbers look good.  Respiratory was there and did his treatment...suctioned his nose at the same time so he'd have nice clear airways.  We did non-nutritive nursing again...he did better this time -- he actually grabbed hold and did a little more sucking!  He didn't go long, though...got tired and slept.  He tried to have one spell after he got all settled in and comfortable, so we went ahead and put him back in his bed (he came out of the spell pretty quickly without much intervention).  We asked about his chest X-ray, and they said that it looked good...better than the one they did on 8/9.

Day 37 -- 08/25/04

5:00 AM:  Josh's feeds have gone well...no residuals, and no regurgitations.  He weighed 3 pounds, 13.6 ounces (down a little, but we expected it from the diuretic).  His vitals were good, and his oxygen levels were in the 30-40% range.  They did a blood gas, and the numbers all looked pretty much the same as they have for him.  He had one spell around 1:00, but none since.

2:30 PM:  Checked in on Josh...he had one spell around 1:00, but it's his first since this morning.  They did an eye exam today...had to dilate his eyes, so they stopped his feeds (don't want the stress to mess with him tolerating his feeds).  He did OK with the eye exam, but the nurse didn't have any results yet (couldn't read the doctor's comments).  They're going to stop the continuous feeds and go back to bolus feeds -- let him feed an hour, rest an hour, feed an hour, rest an hour, etc.  They're going to try to wean him to an open bed!

8:00 PM:  Visited with Joshua...all his numbers look good.  We held him, but didn't do the non-nutritive nursing (he's had a big day already, and we wanted to let him rest).  Chris and I both held him...he was very alert, and was just so cute!!!  I took a bunch of pictures.  He's getting so much of a personality -- he's just such a sweetie!

Day 38 -- 08/26/04

5:00 AM:  Josh is doing very well -- hasn't had any spells.  He's still in his incubator (hospital policy says they have to be in a 28 degree (room temp.) incubator for 24 hours prior to switching them to open air, so around 2:00 pm, they can switch him).  He's tolerating his feeds well...for right now, they're doing 2 hours on, one off to get him prepped for bolus feedings.  He weighed 3 pounds, 12.3 ounces.

11:00 AM:  Chris visited and found out about Josh's eye exam results.  His eyes are at a "Stage 1" (Stage 4 means that the eyes are damaged enough that they will probably need surgery).  Basically, the Stage 1 diagnosis indicates that his eyes are a little immature (because of his age), but everything should work out as he grows and develops.  He had a good night last night...his oxygen hit a low of 28% (it was in the 34-35% range while Chris was there).

8:00 PM:  Visited with Josh...did non-nutritive nursing again....  He didn't seem very "interested" (I guess since he's not hungry, and it's not helping to get his belly full, it doesn't really have much meaning to him).  We ended up just doing kangaroo care instead.  He's had a big day...they switched him from the incubator to an open bed!  He's now wearing clothes and a little hat -- he was so snuggled in, he's just as cute as a button!

Day 39 -- 08/27/04

5:00 AM:  Josh is doing great -- snoozing right now!  He was 3 pounds, 13.8 ounces.  Hasn't had any spells since 3 AM, and is holding his temperature and tolerating his feeds well.

11:00 AM:  Chris stopped by to visit.  Josh is doing well -- they moved him back to Pod C because of staffing issues (has nothing to do with his health).  Chris was told that if the NICU gets another admit, Josh will be moved downstairs to the Intermediate Care nursery (he's on deck)! :-)  Chris talked with Andrea, Josh's physical therapist, and she said that the range of motion in his hand and foot are both OK.  His foot is a little stiffer (indicating that his muscle tone is improving), and he's still doing well.  She's going to talk with Dr. Mirenda, but she doesn't think that they will end up splinting his foot...we're just going to keep on with his exercises.  She did several neuromuscular tests, and said that he looks great -- his muscle tone is definitely improving.  Joshua is holding his temperature well (97.9 when Chris visited) -- he's in a little fleece Pooh sleeper (Chris said it's CUTE!).  They've lowered his oxygen flow to 0.9 L/min (that's good).

8:00 PM:  Visited with Josh again.  My sister and her boyfriend visited -- both thought he was a cutie!  (Mom visited him earlier, and got to hold him and help with his care...being in an open bed allows him to be held more often.).  I tried the non-nutritive nursing, but couldn't seem to get Josh into a position where he looked comfortable.  His nose sounded congested, so I decided not to try to get him to do the non-nutritive nursing any more.  I just held him for a bit instead...he sneezed, and then milk started coming out of his nose...I sat him up to help clear out his airway, and his NG tube came out.  No wonder his sats were low and he seemed congested -- he was trying to breathe milk!  His nurse, Melinda, cleared out his nose, cleaned him up, and inserted a new NG tube (he was NOT happy with that!), but then he settled down and seemed much more comfortable.  We took some pictures, and Chris took some video.  Josh was wide-eyed, but looked tired (he was trying to fight the sleepiness).  We put him back to bed, and within a couple of minutes, he was snuggled in and sleeping.

Day 40 -- 08/28/04

5:00 AM:  Joshua had a good night -- no spells!  He behaved well, and he weighed 3 pounds, 15 ounces.

7:00 AM:  Chris and I visited Joshua on our way up to Northern VA.  We're going up to the VT football game at FedEx field.  I hate to leave him, even just for a short overnight, but everyone I've talked to (including his nurses) think that it would be good for me to get away.  We had the nurse put Josh's "VT Hokie Fan" sleeper when she dressed him last night -- he was SO cute!!!  I got some good pictures of him in it!  His nurse said that he's done well -- tried to have one spell right before we came, but brought himself back up without intervention.  He's tolerating his feeds well.  We gave his day nurse, Rita, all our contact information, and let her know that my parents would be coming to visit with him and cuddle.

2:30 PM:  I called to check on Josh, and they've moved him downstairs to the Intermediate Care nursery (Preemie nursery).  Beverly is his nurse -- I talked with her, and she seemed very nonchalant about everything (maybe just a different attitude in the new nursery, but I want to know all the details and feel like I'm on top of everything).  She did say that he's doing well, and continuing to tolerate his feeds.  He's at around 50% on his oxygen (still at 0.9 L/min on the flow), and hasn't had any spells.

9:00 PM:  Mom visited from around 6:15 till 8:30.  She held Josh and said that he's doing very well.  His evening nurse is really nice, and all is well.

Day 41 -- 08/29/04

2:00 AM:  I talked with Josh's nurse, Paige.  She said that Joshua is doing fine, and that he is sleeping well.  His oxygen flow is the same, and he hasn't had any spells.  He weighs 3 pounds, 15.4 ounces.

8:00 AM:  I talked with Josh's nurse Karen, and he had a good night.  No spells, and he's back to gravity feeds and tolerating them well.  His temperature is holding well, and his oxygen is good.

2:00 PM:  Stopped in to see Josh.  I don't particularly care for the new nursery -- it just seems too loud and crowded, and very lacking in privacy.  Josh looked good, though -- he was snuggled in wearing one of his outfits.  Karen said that he's been a little warm today, so she took his hat off him, but when we took his temperature, he'd cooled down to 97.5 (a little low), so the hat went back on.  She was getting ready to feed him...he's up to 35 ml (up one ml from before), but there haven't been any other changes.  Chris changed his diaper, and he woke up a little while we were there, but when we swaddled him back in before we left, he immediately went back to sleep.

8:00 PM:  Visited with Josh -- it was a good visit.  Maggie was is nurse, and Raquel was also there (we know both of them from the upstairs nursery)...it was good to see familiar faces.  Talked with the nurses, and also talked with a doctor and got lots of questions answered/addressed.  We were somewhat concerned about him being moved downstairs (was it because they were out of space upstairs and he was the least critical, or was he really ready?), and the doctor helped us to feel much better about the move.  She said that his medicines (for reflux, apnea, etc.) are all "long-term" and didn't play a part in the decision to move him.  The qualification for the move is that the baby must be on nasal cannulas with a flow of 1.0 L/min or less.  She said that some babies (younger than him) are downstairs after only a day or so in the NICU upstairs.  They do have a NICU on the same floor that Josh is on, so even if they ran out of room upstairs, if he wasn't ready for the Intermediate Care nursery, they would have put him in the NICU downstairs (same care and setup as upstairs).  The nurses in both nurseries have the same qualifications (only 2 babies per nurse in NICU, but 4 babies per nurse in Intermediate Care).  Bottom line, they didn't just rush Josh out of the NICU because they ran out of room.

We asked about his eyes (a more in-depth explanation)...he is what's considered a "Stage 1, Zone 2."  The eye is broken into several zones, kind of like a bulls-eye.  Zone 1 is right in the center, Zone 2 is the surrounding 1/2 to 2/3 of the eye, and Zone 3 is the outer area.  Zone 2 indicates that the blood vessels in Josh's eyes have grown into the 1/2 - 2/3 region around his retina.  Zone 3 is where they should eventually reach, but because of his prematurity, we can't expect them to be there yet (so he's on target for his age).  The Stage 1 indicates that there are some small abnormalities in the growth of the blood vessels (probably due in part to the oxygen that he received), which means that he has a little bit of "eye disease," but the damage is very mild and shouldn't cause long-term damage.  He is at higher risk for myopia in the future, but with his genetics (both Chris and I were legally blind without correction prior to our corrective surgeries), he was already at risk.  We asked about the noise and lights in the new nursery (it is just louder, brighter, much more stimuli present), and his doctor said that at his developmental age, they present no problem for the development of his eyes and ears.  We asked about circumcision, and she said that usually they'll do it several days to several weeks before the baby goes home, but with Josh's hand, they would call the hand surgeon in to consult, and that doctor might recommend not circumcising him yet because the foreskin could be used when they separate his fingers (rather than having to graft from somewhere else).  If that's the case, they would do his hand surgery and circumcision at the same time (probably after he comes home).

She said that they would probably have speech therapy come in sometime during the week to assess Josh's readiness for bottle feeding.  If that goes well and the therapist thinks that he's ready, they could possibly start bottle feeding him for at least one feeding per day sometime this week.  We asked about what would send Josh back upstairs (if anything), and the doctor felt that he was moved down for the long term...the only way they'd send him back upstairs was if he got sick (statistically, they have maybe 1 in 30 kids go back upstairs in any given month)...so that was good news...they feel that he's developed and healthy enough that he'll stay downstairs.

Once we were done asking questions, I did some non-nutritive nursing with Josh -- he did really well!  He sucked some and rested some.  He got a little drip of milk on his chin and in his mouth, and once he got a taste, he just went to town with sucking!  Hopefully he's beginning to coordinate the suck-swallow-breathe reflex and can start feeding soon...once he gets good with the bottle, I think he'll be on target to start trying to nurse!

Day 42 -- 08/30/04

5:00 AM:  I talked with Maggie this morning and she said that Josh had a "really good night."  His temperature has been holding well, and he hasn't had any residuals with is feeds.  No spells, either.  He weighed 4 pounds, 3 ounces!!  She weighed him 4 times to make sure that it wasn't just reading wrong, and sure enough, got 4 pounds, 3 ounces each time (and she even commented that he doesn't look puffy, so she doesn't think that it is because he's retaining fluids).

3:00 PM:  Josh is doing well...he's behaving, and his feeds are going well.

8:30 PM:  Visited with Joshua...he's doing well.  Looked great!  I tried non-nutritive nursing...he has been doing so well with his numbers that we were able to take him off the monitors and take him into the "breastfeeding room" (a small room where we could spend time with him privately).  He wasn't as awake and alert as he has been previously -- he didn't seem all that interested in trying to nurse, and mostly slept.  I switched up with Chris and he held Josh for awhile...some good Daddy/son bonding.  He's just such a cute little baby -- I could just sit and gaze at him for hours!  It was a good visit.

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