Our Story
Week 2:  07/27/04 - 08/02/04
 

Day 8 -- 07/27/04

6:00 AM:  Josh had a good night...no changes in the vent.  They sedated him just a little, and he slept and rested well.

Midday:  Joshua is still doing well, with no vent or oxygen level changes.  We met with the physical therapist this morning, and learned how to stretch Josh's foot and hand for range of motion and flexibility.  It felt really good to get hands-on time, and to actually be able to do something for him!

10:00 PM:  Josh was on his belly tonight.  He was curled up and resting well...he looked really comfortable.  They put him on his belly because he was working harder than usual to breathe.  Chris talked to the nurse on his way to work, and she said that the vent settings ranged from 25 breaths per minute up to 100 during the afternoon, so they tried him on his belly to see if it helped him to breathe easier.  The nurse seems to think that he was probably just stressed/tired from the physical therapy, and it was just a big change for him and he needed to rest up and recover.  He was holding pretty steady when I was there.  His phototherapy light was off again, so he wasn't wearing his sunglasses and I could see his little eyes!  He weighed 2 pounds, 5 ounces.

Day 9 -- 07/28/04

6:00 AM:  I called to check on Joshua, and the nurse said that not long after I left last night, his ET tube dislodged while they were turning him over.  They decided to go ahead and try him on the nasal CPAP (Continuous Positive Airway Pressure... it's basically a little mask that fits over his nose or prongs that fit in his nose and blows oxygen into his lungs...pretty much the same thing they put on adults when they need oxygen).  They said that his blood gas was much better after they switched him to the CPAP...his breathing was about the same as before (he's working about the same amount), and that he's not suffering or working too hard to breathe.  She said not to be surprised if he ends up back on the ventilator, but that for now he's doing OK.  They gave him a couple of puffs of Albuterol (the medicine that is in asthma puffers) to help dilate his bronchi, and that may have helped his blood gas.  They said that he may end up having what they call "spells" of apnea, where he forgets to breathe and they have to "remind" him...if the spells become too frequent, they'll put him back on the ventilator because too many spells become too stressful for him.  He's wearing a little skull cap now that holds the CPAP in place (Chris is calling him his "little thug").  His bilirubin counts are still in the low 2s (Chris asked worst case scenario with bilirubin, and they said that if it gets into the 20s or higher, it can cause brain damage, but that they fight it aggressively prior to it becoming anywhere close to that level).

11:00 AM:  Josh looks good...it's a little harder to see his face with the CPAP mask, but it's nice not to have those tubes coming out!  He's had 1-2 "spells" but is hanging in there without the vent!!  He's still on his belly, and appears to be resting comfortably.

Afternoon:  Barbara, Chris's mom, is down to visit.  She got to see him for the first time...said he's smaller than he looks in the pictures, but looks good.  I talked to the nurse...he's had 4 spells total (1 in AM, 2 around lunch, and 1 since 3).  His oxygen levels are still good, and he's holding his own.  He's back lying on his back.  The hose on the CPAP makes him look like a little elephant! :-)

10:00 PM:  I visited with Josh alone tonight.  He's still on the CPAP and doing OK with it.  He's had a couple of spells through the day, but not enough to prompt being put back on the vent.  It was a rather eventful visit for me.  Nicole, the nurse, let me take his temperature and change his diaper (he was really squirmy, and I did a terrible job with the diaper...it kept sliding off!).  She went to change over the CPAP (they change him from the mask to the prongs every 3 hours or so in order to keep from rubbing sores on his face).  His oxygen levels dropped, but she had a mask to help bring the levels back up while he was off the CPAP, and he rebounded OK.  When she weighed him, he came up as 1 pound, 15 ounces (which is almost a half pound less than last night).  We all decided that there was no way that was right, so she tried several more times, each time getting similar numbers.  She even turned off the bed and "restarted" it so that it could re-calibrate, and it still registered low.  So she unhooked Joshua from everything (alarms were going off everywhere...SCARY!), then moved him over to the portable scale.  He weighed 2 pounds, 6.2 ounces on that one...much more reasonable!  While he was off the bed, she changed out his bed, and the respiratory therapist came by and gave him another puff of Albuterol.  While they were transferring him from his bed to the scale, he cried...WOW--it was the first time I'd really heard him cry!  I never thought that I'd love the sound of a crying baby, but it was so nice to hear him do something so "normal."  Plus, I cupped my hands around him, and he calmed down a little, so that made me feel really good!  Nicole put him back in bed, got him resituated, and he started to settle in a little.  He had lots of "snotty" looking mucous in his mount (the CPAP tends to dry out their mouths and they get this cruddy mucous buildup), so I cleaned that out...they gave me a little pacifier for him, and although he didn't actually take it in his moth and suck on it, he made little sucking motions, and I was able to use it to pull some of that crud out of his mouth (who'd have thought that cleaning out a cruddy mouth would make me feel so good?!?).  I stayed almost 2 hours (I just didn't want to leave him!)...it was a really good visit!

Day 10 -- 07/29/04

6:00 AM:  Talked with Connie, Joshua's night nurse, and she said he's doing fine...all the settings are the same, and he had a good blood gas.  I really like Connie...I met her when she came in last night, and she is very comforting and seems to be very pro-touch (I think she wanted me to be able to hold him and hug on him as much as I want it!).  She said that he had 2 spells last night (one took a little coaching to get him breathing and the second one took a little more coaching), but that he's hanging in there.  She also said that the last time she put his mask on him, it wasn't sealing properly, so she was trying to get him a new one.  She said that every time she changed him from mask to prongs or back, he "de-sats" (which I believe means that his oxygen saturation level drops), but that she doesn't count that "against" him.  He's not sedated at all, and she did his exercises with him.  She said he had a fairly restful night...he pulled out his OG tube (Oral Gastric tube -- the tube that helps keep air and bile out of his belly) several times, but that she put it back in when she needed.  She cleaned his mouth out several times -- got lots of crud around 2:00, but less at 5:00.  She suctioned off about 10-15 ccs of air and a little green stuff out of his belly, but he was pretty comfortable overall.  She said that when she cleaned out his mouth, she used this pinkish pepperminty flavored liquid, and he seemed to really like that.  He's been off the vent for over 24 hours, so I feel pretty good about that...even if he has to go back on, I think a full day off is definitely progress!

12:00 PM:  They took out Joshua's last umbilical line!  We got there around noon, and they were working on him.  He did well with the removal of it, and just looked more comfortable...one less tube stuck in him!  It's kind of a trade-off, because now to do blood gases, they'll have to stick his heel, but they also won't have to do them quite as often, so that's good.  We talked with the doctor, and he said that based on Josh's medical history over the last couple of days, he is going to hold off on feeding him until tomorrow.  Some babies can eat within an hour or so of having the UAC (Umbilical Artery Catheter...the umbilical line) removed, but since he's had some of the "spells" with the apnea, he thought it would be appropriate to give Josh a little bit of time to settle down after having the line taken out.  Hopefully, too, I'll be able to hold him sometime in the next couple of days...the nurse yesterday said that usually they have you wait about 48 hours after having the UAC removed before holding them, just to make sure that there is no bleeding.  The doctor also said that he is doing OK on the CPAP for the time being...that the spells are still happening, and if they get worse, he may end up back on the vent, but that for the time being, we'll just keep on with what we have.  They also have him on caffeine (Chris is so jealous he can't stand it :-D).  It is used to treat apnea, and is in the same family as another drug called Aminophylline, which he was on before).  Aminophylline has certain "limits" as to how much can be used and what levels it can get to in the body -- Josh was pretty close to the max dose, so they decided to try him on the caffeine...you don't have to give it as often, but it also doesn't have the limits on it that the Aminophylline does; some babies respond better to the caffeine, so they're just going to see how he does and go from there...hopefully it'll help out with his spells!  Josh looked good...still rather feisty, but that makes me feel good because he's moving around a little and just looks more "normal."  I changed his diaper again (did a little better this time), took his temperature, and cleaned the crud out of his mouth again.  Such small things, and things that under "normal" circumstances I'd probably find to be a pain in the rear to do, but it's just so nice to feel like I can do something for him!

11:00 PM:  Chris and I visited with Joshua Ryan, and he looks really good!  I changed his diaper (my first poopy diaper...yuck!), and took his temperature.  April, his nurse, said that he was doing well -- all his numbers were holding pretty steady.  She was getting ready to change out his bed and do some basic care, and asked if I wanted to hold him!!!  WOW!!!!  It was SO scary, but absolutely wonderful!  I sat in a rocker, and she laid him on my lap...he still had his CPAP on, and his IV in, but since I didn't actually have to pick him up and move him myself, I was pretty comfortable.  I got to cuddle him in a blanket on my lap.  His vitals held steady, and everything seemed very stable and calm.  April pulled the curtain and gave Chris, Josh, and I some "family time" -- about 10-15 minutes.  After that, she put him back in bed, and all his vitals stayed stable...she was even able to turn down his oxygen a little!  What a great visit!

Day 11 -- 07/30/04

6:00 AM:  I called to check on Joshua, and the nurse said that he is doing well.  He hasn't had any spells.  His blood gas wasn't great, but was still within parameters, so no changes were made in any of his settings.  He weighed 2 pounds, 8 ounces when they weighed him last night.

12:00 PM:  I visited with Josh, and things were doing pretty well.  His bilirubin count is still good...they'll check it tomorrow, but it doesn't seem to be going up significantly.  They upped his caffeine a little to try to help with the apnea spells.  Joshua will start on breast milk today...I'm so excited!  At this point, he'll keep his IV to supplement the breast milk, and they'll be very careful about how much breast milk they give him because they need to make sure that it doesn't "shock" his system too much.  They'll monitor it very carefully, and make sure that he's tolerating it well, then change/add as necessary.  At this point, we can't expect significant weight gains from the milk, but once he starts feeding on breast milk only, they say that we can expect his cheeks to start filling out a little, and he'll start gaining around 1/2 oz. daily.  For now, they'll feed him through the OG tube, and he'll get 3 ml of milk for his first meal.  It seems like such a little bit (around 1/2 teaspoon), but I guess when you think about the size of his little stomach, it'll probably fill him up pretty well.  He has a little bit of skin breakdown under his right arm, but the nurses are watching it and keeping an antibiotic ointment on it, and skin breakdown is actually a pretty common occurrence, so they're not really worried about it.  We talked to the physical therapist, Andrea, and she said that his foot is doing great!  He's got more range of motion, and the exercises seem to be helping.  She said that Dr. Mirenda will be by in the next several days to re-evaluate his hand and foot and see if there are any changes in his PT, or if we should just keep on keeping on for the time being.

2:00 PM:  We went back for Josh's first feeding.  He got 3 ml of breast milk through his OG tube.  They give  a little pressure to it to get it started going down, then let gravity feed it down to his belly.  After that, they stop off the OG tube to give him time to digest it.  They'll check before feeding him again to see how much he digested, then add to it accordingly.

6:00 PM:  Chris called to check on Joshua and see how his second feeding went.  They pulled 2 ml back up (meaning he digested 1 ml), so they gave him those 2 ml back, plus one additional ml.  We asked about being able to hold him, as well as be there for his next feeding, and they suggested coming back between 10:00 and 11:30, so we'll head over there then.

10:15 PM:  Chris and I visited with Joshua Ryan.  We changed his diaper and took his temperature, then Chris got to hold him -- they both did great!  Chris was afraid of "breaking" him, but Josh snuggled right in and settled comfortably.  We switched off after about 10-15 minutes, and I got to hold him, too.  He did very well...all his vitals stayed stable, and his oxygen concentration got turned down a little.  We got him settled back in bed (weighed him when we put him back in...he was 2 pounds, 7 ounces), and was resting comfortably.  We asked his nurse, Maggie, about kangaroo care (in kangaroo care, you wear a button-down shirt that gets opened and the baby gets snuggled up against your chest and you close the shirt around him to keep in heat.  The skin-to-skin contact has been shown to help with breathing and respiration, and it helps the parents to bond with the baby.).  She said that when you do kangaroo care, you should come about 1 hour prior to regular care time...plan on about 10-15 minutes to get everything together and get situated, 30 minutes of "hold time" and 10-15 more minutes to get him back in the bed and resituated.  She said they pull the curtain around you, and you just settle in and snuggle.  We're going to try to do it tomorrow or Sunday.  Also, they did another cranial sonogram today to check on the bleed (to make sure it's not continuing to bleed or getting bigger).  The results aren't back yet, so we'll check with the nurse either tomorrow or the next day to check on the results.

Day 12 -- 07/31/04

6:00 AM:  I called to check on Joshua Ryan, and things are going pretty well.  His blood gas wasn't great, but wasn't bad either.  It was within parameters, so they're not making any changes to the setting on the CPAP.  He hasn't had any residuals in his feedings, which means that he's digesting it all -- YEAY!  He had a couple of spells (3 this morning), but since the number of spells hasn't really increased, they're going to just wait and see how things go.

10:30 AM:  Stopped by briefly to see Joshua.  All his numbers look good.  Chris's dad is coming in today, as are Christine and Laurie (the mom and wife of the Josh that he's named for, respectively), and they're all going to visit with him, so I only stayed for a few minutes so as not to overwhelm him.

5:00 PM:  Chris called to check on Josh.  His temperature was a little low, so they turned his bed up a little.  Is oxygen percentage is varying between 26 and 38, and the CPAP setting is still at 6.  He hasn't had any spells since noon, so that's a good thing.  His oxygen saturation drops when they work on him (change him, etc.), but once they finish up, it goes right back up, so they're not too concerned.  They got 1 ml of residual when they went to feed him, so they gave that back and added 3 more, for a total of 4 ml.  They'll up that to 5 ml total tonight, so that'll be good!

9:30 PM:  Joshua is doing well.  His oxygen concentration is really low, which is good.  I did kangaroo care with him.  We snuggled together -- it was WONDERFUL!!!  He nestled right in and seemed very content...the skin-to-skin contact was so nice!!!  It really made me feel like his Mama!!! :-)

Day 13 -- 08/01/04

6:00 AM:  Called to check on Joshua, and Martha, his nurse said he's doing great!  He had a good blood gas, and is at 33% oxygen.  He weighed 2 pounds, 11 ounces last night (I think that's a little high, but I'm not arguing!).  He's doing well with the 5 ml of milk...he's peeing and pooping just like he should.  He had one spell earlier in the night that she had to get in and remind him to breathe, but hasn't had any others.

11:00 AM:  Joshua is doing well.  He's had one spell since the morning, but is resting well now.  He opened his eyes and "looked" at us...what a little cutie!  We asked about the cranial ultrasound -- the bleed is being absorbed, and there was no further bleeding found...good news!  He got lots of visits this morning...Grandmom and Grandpop visited before they left to go back to Northern VA, then my cousins all came by and visited.  We didn't do much hands-on so as not to overwhelm him, but everyone got to see him, and he stretched and wiggled around some for everyone to see.

7:00 PM:  Chris visited Josh on his way to work.  Reported back that all is well...his numbers are good, and he's resting comfortably.

10:00 PM:  I visited with Joshua by myself since Chris was working.  He's been resting well, and is going up to 7 ml of milk at his 11:00 feeding.  I did kangaroo care again with him, for about 20-30 minutes.  It took him a few minutes to get settled, but once he settled in, he snuggled up to me and fell asleep.  We "bonded" for awhile, then I put him back in bed.  I guess he got a little too content, because he had a spell when I put him back in bed, but we got him going again, and things went pretty well from there on out.  When she went to feed him, she got very little residual, so that indicates that he's digesting everything pretty well.  Martha is with him tonight, and I really like her, so that helps make me feel good (I like pretty much all of his nurses, but Martha has just been really sweet to both me and him, which really means a lot!).

Day 14 -- 08/02/04

6:00 AM:  I called to check on Joshua, and he's been doing well.  He's been a little warm, so they turned his bed down a little.  He hasn't had any spells since midnight, and is tolerating his feedings well.  He had a good night!

1:00 PM:  I went to visit Josh, and did kangaroo care again.  I spent almost an hour with him, which was wonderful!  He wasn't as content this time...more active.  He cried some, but did settle in for awhile.  At one point, he got restless and wiggly...pushed himself up off my chest with his little arms, leaned his head back, and looked around.  My little strong man!  I put him back in his bed, and his nurse, Cindy, helped get him snuggled back in.  I think the "out of bed" time wore him out a little, because he had a spell when we put him back in bed again.  Cindy had to give him a good thump on his little behind to get him going again, but his numbers came back up pretty quickly, and looked good by the time I left.

7:30 PM:  Chris called to check on the little man.  He's up to 9 ml of milk, and has been digesting everything he's been given!  She said that he slept pretty hard after I left (I think all the moving around and the kangaroo care must have worn him out).

10:15 PM:  Chris and I visited with Joshua.  His temperature was a little low, so we didn't take him out of the bed.  We changed his diaper (he almost peed on Chris...he got out of the way just in time :-P).  He did pretty well while we were there.  He'd had 3 spells since earlier (one around 8, then 2 in a row right before we got there).  They're going to change him over to a different incubator tonight...he's "graduating"!  Debra, his nurse, said that they usually leave the kind of bed he's in for the brand new and really early preemies, and since he's a little older and more stable now, they can move him to another bed.  She also pointed out (and it makes good sense to me) that they try to change out the incubators every couple of weeks because germs, infections, etc. can grow in them (they're not called incubators for nothing!), and it's healthier for the babies to get a fresh, clean environment.  So, he'll have a new home when we visit tomorrow...it's not quite as fancy, but as long as it does the job, we're in business.

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