Our Story
Week 10:  09/21/04 - 09/27/04
 

Day 64 -- 09/21/04

5:00 AM:  I called to check on Joshua, and he's doing well.  His feeds are going well -- he did great with his 2:30 feed.  His oxygen is between 25% and 31%, and he hasn't had any spells.  He slept well.  He weighs 5 pounds, 14.8 oz.

4:00 PM:  Met with Dr. Mirenda today to talk about Josh's hand and leg/foot.  He said that it doesn't appear that there is anything structurally wrong with Josh's foot -- he thinks that he has normal bones.  He said that we won't know for certain for several years, simply because his bones aren't completely hardened yet (they're still mostly cartilage), and we'd get incomplete information (at best) from an X-ray.  He doesn't want to do any X-rays this early anyway, simply because the potential harm caused by the radiation outweighs the potential benefit of being able to learn something useful.  Since nothing will be done regardless for quite awhile, it's not going to hurt to hold off on the X-ray.

Josh has what's called "syndactly" -- which means that his fingers are fused together.  Dr. Mirenda thinks that the bones appear to be distinct, and he thinks that he has all his bones and joints.  What I didn't realize is that more important than the bone structure is the tissue inside.  The tendons and ligaments inside will ultimately determine the level of function that Josh will have with that hand.  The best case scenario is that they will separate the fingers and all the tendons and ligaments will be distinct, and he will then do physical therapy to gain full function with that hand.  As it stands, nothing will be done any time soon.  When Josh gets to be around 5-7 years old, then we'll start thinking about separating the fingers.  The decision on when and if to separate them will be based on 2 things:  1)  is not separating them interfering with his growth? and 2)  is the asymmetry in his body (his right side is smaller right now) becoming more pronounced and should work be done before he finishes growing?  Neither question can be answered until he starts getting a little older and we've had time to monitor his growth.  The second question leads directly into thinking about his foot and leg.

Currently, part of the concern is that Josh's right leg and foot are smaller than his left.  A little bit of asymmetry is very normal, but the concern comes in when the asymmetry is more pronounced.  We won't know until Josh is older and closer to finishing his growth how much concern we should have with the asymmetry.  The problems with any kind of "pronounced" asymmetry are that it can cause the pelvis to tilt when standing and walking, which either causes the person to stand "slanted" or can cause their spine to curve.  This can throw the hips out of alignment as well, which can cause problems with the ball and socket joint.  In addition, it can also cause abnormal stresses on the knees.  Typically, boys can deal with up to about an inch of asymmetry without too much problem (they can "treat" it with a lift in the shoe on the shorter side).  Anything greater than an inch will usually be treated with more "drastic" measures.  One approach is that they can try to slow the growth in the longer leg (this takes place somewhere around ages 12-14).  The way they do this is they damage the growth plates in the longer leg to slow the growth and allow the shorter leg to catch up.  They have to use projections about growth, so it's not an exact science, nor can it be used if there are problems with growth (i.e. if the child needs growth hormone therapy or something similar).  He said that this has been a very successful treatment in the past.  If for whatever reason the growth is too difficult to predict, they can let both legs grow as they are, then surgically shorten the longer leg.  Another option is to "stretch" the shorter leg -- he's successfully stretched a leg up to about 4 inches.  If we were to do this, it would take place a little earlier (around age 10-14).  It's a more involved process, but the strength of the leg is not compromised, and the success rate is pretty high.  He seems to think, though, that if Josh were to keep all the same proportions as he grows, the difference in the lengths of his legs won't be significant enough to warrant anything more than the lift in his shoe, if even that.  I really like Dr. Mirenda, particularly because he gave us the big picture and told us all the different possible scenarios so that we'll be prepared for whatever happens.  As for Josh's foot, one of three things could be going on:  1)  all the interior structure is normal and just needs to grow and develop, 2) all the bones are the same size as the ones in his other foot, but he's just missing one (from where he's missing his pinky toe), or 3) the bones are actually smaller than the equivalent bones on the other side.  Regardless, growth is stimulated by activity, so we need to keep doing his foot exercises.  Dr. Mirenda doesn't see any benefit at this point to putting Josh in a brace or a splint to hold his foot in the "neutral" position...he thinks that the exercises alone will take care of the problem.

Bottom line, there's nothing major that will be done anytime soon.  In the meantime, we need to keep putting him through his range of motion exercises.  None of this should limit his activity or cause us to treat him any differently than we would any other baby.  When the time comes, we'll make decisions about our next steps, but for now, we're doing everything we need to be doing for him, and we just need to be patient with all this.  We'll see Dr. Mirenda every couple of months as Josh grows, and that will allow him to track Josh's growth and development and alert us when we need to do anything different.  I felt pretty good after talking with him, and from all the information I've been given, Dr. Mirenda is one of the best around.

8:00 PM:  Visited with Josh -- he's doing very well.  His oxygen is close to room air (was actually at room air earlier in the evening).  We had to turn him up a little bit while he ate, but even still, that was only into the mid 30s.  He did really well -- took the whole bottle.  He was gassy and a little fussy afterwards, but he seemed to settle back in OK.

Day 65 -- 09/22/04

5:00 AM:  Josh is doing "wonderful!"  His oxygen is around 28% and he hasn't had any spells.  He weighs 5 pounds, 15.8 ounces, and took his whole bottle.

3:00 PM:  I called to check on how Josh's eye exam went.  Things went well, and there haven't been any changes in his eyes.  He's scheduled for another follow-up in two weeks.  He took his bottle at 2:00 and desatted some (had to get blow-by at one point).  They turned up his oxygen some, but he was just pooped out, so they gave him the rest of his food through his NG tube.

8:00 PM:  Visited with Joshua.  He was very awake and alert (had big eyes!).  He took his whole bottle, and had several good burps.  We snuggled afterwards, and he sucked on his pacifier some.  His eyes still seemed a little dilated, but he didn't seem agitated or upset/stressed.  It was a good visit!  He weighed 6 pounds, 0.8 ounces!!

Day 66 -- 09/23/04

5:00 AM:  Joshua is "eating beautifully."  He had a good night...got a bath, and his oxygen was in the 30% range with no spells.

8:00 PM:  What a good visit!  I tried nursing Joshua again, and he did pretty well.  He did well on the left side, then I burped him and switched him over to the other side.  It took a little to get him latched on, but he did even better once he did.  He had a couple of desats, but nothing major.  He took 5 ml of the bottle after, so hopefully that means he got something worthwhile from me.  I tried holding him after he ate, but he couldn't seem to get comfortable and seemed fussy.  Finally offered him the bottle again, and he took 5 more ml.  I think he was just tired and fussy, so we got him ready to go back to bed.  We weighed him (6 pounds, 0.4 ounces), changed his outfit, then snuggled him in.  The doctor had left a note to have us set up a time to "room in" (where we stay at the hospital and assume total care of Josh over a day or so...gets us ready to take him home).  We're going to try for October 1.  I need to find out more details...I'll talk to the doctor to find out what's next and how this all works (does he come home the next day?).

Day 67 -- 09/24/04

5:00 AM:  Joshua did great overnight.  He didn't have any spells, and his oxygen is at 27% (and they've lowered the flow to 0.8 L/min).

3:30 PM:  Talked with Dr. Allen today to find out more about our next steps.  He said that we will spend this week preparing Joshua to go home, then we'll room in (one or more nights), then we'll take him home.  He said that Josh is eating better (maybe because his lungs are becoming more developed), but that it looks like he'll probably go home on Albuterol, diuretics, low-flow oxygen (we need to call and order it), and a cardio-respiratory monitor.  Sounds like a lot, but really, the medicines aren't a big deal, and the monitor is basically just protocol whenever a baby goes home on oxygen.  He said that Dr. Tamez, who is a pediatric pulmonologist, will meet with us every 3-4 weeks once we take Josh home, and he will determine how long Josh needs to have the oxygen at home.  Dr. Allen suggested bringing Josh's car seat in sometime next week for a car-seat study (to make sure that once Josh gets in the seat, he's not squished down cutting off his airway).  He suggested booking the room-in room for several nights, and plan on staying as long as needed to feel comfortable caring for him.  For the time being, we've put our names down on the books for October 1-3, and will go from there.  Dr. Allen also had me talk with Tracey Zadell, who is one of the nurses there (she did our CPR and bath classes).  She will help get everything organized for us, and will help answer any questions we might have.  She's also a lactation consultant, so she helped me out with nursing Josh, as well (gave me tips about how to help him do what he needs to do).

8:00 PM:  It took some coaxing, but we finally got Josh to take 45 ml of his bottle (it's fortified to 27 calories/ounce now).  Tried breastfeeding him at 5:30 with Tracey, but he wouldn't even open his eyes, much less latch on and suck.  I think he looks pale, and just seems tired.  His nurse said that his hematocrit is at 32, so he's OK (although she thought he looked pale, too).  It could just be residual effects of his immunizations.  [His nurse said that she tried feeding him earlier, and he only took part of it -- she had to put the rest down his tube.  Then Sarah, from speech, came and he only took 10 ml for her.  Then he didn't nurse for me, so we didn't even try bottle feeding him the supplement -- we just put it straight down the tube.]  I'm glad he did better this feed!  We took a fairly long break in the middle before he finally finished, but he did end up eating 45 ml.  He seemed restless and agitated...he had terrible gas, so maybe he was working on a big poop (he hasn't had a "worthwhile" one in several days...which could explain his eating issues).  Hopefully everything will work itself out.

Day 68 -- 09/25/04

5:00 AM:  Joshua did really well at his 2:30 feed -- he took 48 ml, and didn't need additional oxygen (his nurse turned him up to start with, but had to keep turning him down the whole feed because he was satting 100%).  He was on room air most of the night, except when he was feeding.  Jane was his nurse (she had him at one point last week, too), and she said that he seemed much more relaxed about eating than he was last week -- she could see definite progress (what a good report after his rough day yesterday!).  He was resting quietly when I called.  Weighed 6 pounds, 2.4 ounces.

3:00 PM:  I stopped in to see Joshua today -- planned to breastfeed for his 2:30 feed, but when I got there, the doctor had changed the orders so that Josh would get 2 PO feeds, followed by 1 NG feed around the clock, so the new schedule made his 2:30 feed an NG feed.  Needless to say, I was disappointed, particularly since I had planned my day around being there to feed him at 2:30...I guess I'll deal with it, though, seeing as how I'll be in charge of his feedings soon enough.  He was doing well -- did fine with his last 2 PO feeds, and his sats are looking good (he's been in room air except for his feedings).  Still no poop (it's been almost 3 days), so the nurse gave him a glycerin to try to help things along.

8:00 PM:  Visited Josh and tried to nurse him -- he had no interest whatsoever. :-(  His nurse, April, said he had a HUGE blowout (he managed to get poop in her gloves, down her sleeve, everywhere!, then got it all over his bed as well).  He also slurped down 60 ml at his last feed (this was his 2nd in a row).  Snuggled in with Daddy for awhile -- such a sweet little guy!  Oxygen was at 25% (and going down) when we left.

Day 69 -- 09/26/04

5:00 AM:  Called to check on Josh -- he's doing well and was sleeping when I called.  His oxygen has been between 21 and 22% at 0.6 L/min flow.  At his 2:30 feed, he took 60 ml of his bottle.  Weighed 6 pounds, 4 ounces.

11:00 AM:  Visited Josh and tried to nurse him -- he didn't want to wake up to even try.  We had a little "talk" and he made a halfhearted effort to suck for about a minute, then decided that he really didn't want to.  Finished with the bottle...took 30 ml.  I'm getting frustrated with this breastfeeding thing...I know I just need to be patient, but it's discouraging when he just doesn't even seem interested.

PM:  We visited Josh late, in between feeds.  He was all snuggled in -- I picked him up and held him for about 15-20 minutes.  He opened his eyes once or twice, but pretty much slept through.  I'm a little concerned with his sleeping...I know babies sleep a lot, but this past week, that's ALL he seems to do -- he doesn't seem to be having his "alert times" like before, and he will barely wake up to eat.  I'm going to talk with the doctor tomorrow to see if that is a normal thing.  He weighed 6 pounds, 4.8 ounces.

Day 70 -- 09/27/04

5:00 AM:  Talked to Josh's nurse...he's doing well.  He has taken all his feeds and done well (50 - 60 ml each time).  They turn his oxygen up a little when he feeds, but otherwise, he's been on room air at 0.6 L/min most of the night.  He hasn't had any spells, and he's actually woken up somewhat to eat when the nurse has done his care.

2:00 PM:  Chris and his mom visited Josh (she's in town for a day or so).  He talked with Dr. Heerens and asked a bunch of questions.  His hematocrit was at 31 (they like for boys to be between 35 and 45, but since it was 32 last time and only 31 this past time, they're not concerned since it's not dropping drastically).  They are taking Joshua's NG tube out today!!!  She thinks that it could be contributing to his reflux for one of 2 reasons:  1) it irritates the lining of his stomach and esophagus, or 2) it causes a valve in the back of the throat/windpipe to remain open rather than closing off like it's supposed to.  She took him off his Reglan and Zantac, in the hopes that he'll do OK without it (and then we'd know that the reflux was caused, at least in part, by the NG tube).  They also just dropped his flow from 0.6 to 0.4 L/min, and they've taken him off his Aldactone, too.  Dr. Heerens is hoping to send him home on Diuril and sodium only -- for the chronic lung disease.  She also thinks that there's a good chance he'll go home on blow-by oxygen for feeds only, rather than on the cannulas (good news, but scary!!).

Josh has done well with his feeds (took 50 ml at his 11:30 feed).  Both Dr. Heerens and the nurse think that he's so tired because he's having to work harder and more often to eat, and his oxygen has been decreased (causing him to work harder to breathe).  Hopefully, as he gets used to having to "eat," he'll be a little more alert.  We asked Dr. Heerens about his circumcision, and she said that he'll feel "pain" for about 24 hours (mostly when he urinates, because of the ammonia in it).  They will give him Tylenol for the first 24 hours to help offset that, adn at the time of the circumcision, they'll give him a sugar pacifier and they'll numb the genital area.  The most common "problem" that could occur is bleeding, which would then require them to put in a single stitch to repair it.  She said that about 1 in 200 babies need a stitch, and that she's never had to do one.  The other risks involved are infection and cutting either too much or too little (all of which are very uncommon).  They're going to go ahead and do it either tomorrow or Wednesday.  It all sounds awful, but I know it's just routine to them.  I'd also rather them do it while he's still in the hospital so they can keep an eye on things and be responsible for the majority of the recovery time care (they say that the total recovery time is about 1 week).

8:00 PM:  We visited with Josh tonight.  He woke up a little, but not much.  I tried nursing him again, but once again, he gave a couple of little sucks and then tried to sleep.  He only took 15 ml from the bottle, so maybe he's just not hungry.  I guess he'll eat well next time...he'll probably be hungry by then.

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