Our First Month at Home
10/02/04 - 11/02/04

October, 2004

Our first month home has been an adventure.  Josh has done wonderfully, and we're adjusting pretty well.  Joshua is growing leaps and bounds -- he came home from the hospital weighing 6 pounds, 13 ounces...when we went to the pediatrician today, he weighed 8 pounds, 10 ounces.  He's eating like a horse, and keeping us on our toes -- he lets us know in no uncertain terms when we're not moving quickly enough to get him fed.  He found his lungs when he came home, too!  In the NICU, he was always very quiet, did lots of looking around, taking it all in, but didn't have much to say...not so at home -- he cries when he's hungry, cries when he needs a diaper change, cries when he's gassy, cries when he's tired, and SCREAMS when he's angry!

Josh is slowly moving toward being a "normal" baby.  He came home on oxygen -- 0.1 L/minute flow at 100% oxygen, and on a cardio-respiratory monitor.  We've worked up to letting him be off the oxygen for 8 - 10 hours during the day, and he only has to be on the monitor if we're not around to keep an eye on him (which pretty much amounts to when he's sleeping, or when he's in the car with one of us alone).  He's doing very well with moving off the oxygen -- and it's just so much nicer to look at him and not see those cannulas!!  It's also very nice to be able to carry him around -- up and down the stairs, out to the car, whatever, without being attached to machines and oxygen tanks.  The first several weeks home were very frustrating, simply because he was SO "un-portable."  In order to go anywhere, we not only had to carry him, but also his portable oxygen tank and his monitor.  It's really nice now to be able to get away from those cords.  We're still not taking him out in public if we can avoid it...no restaurants, no grocery stores, no malls, etc.  His world basically consists of our house, my parents' house, and the various doctor's offices we have to go to.  Even though it's somewhat restrictive, we know that it's the right decision for him -- it will help to keep him healthy and making forward progress.

Doctor's updates: 

Joshua has been to the pediatrician once a week since he came home.  Her name is Dr. Deyerle, and she's in practice with the family doctor whom I see.  She is WONDERFUL with him...has spent at least an hour with him each time we've been, asks questions, listens to us, and really does a thorough job with him.  She tries to see us either as her first appointment in the morning or her first one after lunch so we don't have to wait, and she sets aside several appointment slots for him each time so that she can spend the time she needs with him.  She's even given us her cell phone number and told us to call that before calling the doctor on call at the hospital if we should have anything go wrong after their regular hours.  I can't say enough good things about her!

Josh has been to the eye doctor twice since we've been home.  The first was a week out -- Dr. Facciani said that Josh's eyes had made progress -- the "Stage 1, Zone 2" had changed to just "Zone 3," which means that the damage/disease associated with prematurity (the Stage 1) was gone, and the blood vessels had grown further out across the back of his eye to be pretty much "normal."  We went back this past week (3 weeks out) for one more follow-up, at which time all looked great...we don't have to go back now until Josh is a year old.  What good news!  I know that the exams are necessary, and I know that they aren't painful to him, but they just LOOK so torturous...it just makes me cringe to watch, and I feel so bad for the poor little guy...I know it's uncomfortable and scary to him!  I'm so glad that we don't have to go back again for a good while!

We've met with the pulmonologist, Dr. Tamez, once, and talked with him (actually, his nurse) on the phone several times.  He said that Josh looks great -- he downloaded his monitor data and was pleased with what he saw.  He gave us the option of beginning to wean him off his oxygen or wean him off his medicine -- we chose to start with the oxygen, since it makes him more portable to be off it.  At this point, we're up to 8 - 10 hours off the oxygen per day, and in another couple of days, we'll start reducing his diuretic dose.  Provided he does well with that, he should be off the diuretic (and the sodium that he has to take because of the effects of the diuretic...what a good thing...he HATES to take his sodium!!) within about a week and a half.  After that, we'll move to oxygen only at night, then move to take him off it completely.  I'm not certain of how taking him off the oxygen completely will work...we'll probably have to keep him on the monitor for at least a week or so after going completely off the oxygen, just to make sure that he does OK without it.  But, bottom line, I'm hoping he'll be off the oxygen and the monitor by Thanksgiving!

The only other doctor that Josh has to see is Dr. Mirenda, who is the orthopedic doctor.  We haven't had an appointment with him yet -- that's this Friday.  His little foot is doing great -- when he's relaxed, his ankle doesn't turn in nearly as much as it used to...I think that us being very diligent about doing his foot exercises has really made a difference.  He's still got come curvature to his actual foot -- we'll talk with Dr. Mirenda about that and see if he wants to splint it to help it grow out straight, or exactly what the next step is to help get it straightened out.  His fingers are looking good...he's grasping really well with them, and seems to be just as "coordinated" with his right hand as he is with his left.  I'll tell you...those little fingernails certainly are growing normally (they're SHARP!), but they sure are hard to clip without being able to separate the fingers to do it!!!

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