Long overdue...

I'm a very goal oriented person and throughout Reid's NICU stay, my main goal was to bring him home (and stay sane throughout the process)!  After this goal was attained, it took some time to settle into life at home and I completely forgot that people may still be interested in following his progress.  So, for those of you still interested in Reid's journey, here are some highlights:)

The first week home was quite an adjustment for all of us (Reid, me, Bryan, my parents, my grandfather, and of course, George Michael).  Bryan was able to take off a few days to help out, but reality quickly set in once he returned to work.  After the first week, I remember thinking, "Oh my god, how am I ever going to do this?!"  I felt so constricted already...we are pretty much on house arrest until the end of flu season and even within the house, it's not the easiest to transport the little guy.  To bring Reid from his room to the first floor, I have to unhook him from his pulse ox monitor, take the monitor downstairs, fill his portable oxygen tank, unhook him from his primary tank and hook him to his portable tank...something I now have the hang of and can do pretty effortlessly.  Needless to say, I can't just pick him up to run downstairs and throw a load of laundry in or put him in his carseat to run a quick errand or pick up my favorite cup of WaWa coffee.  At the end of the day, Bryan would come home from work and I would be changed into my gym clothes ready to hightail it out of the house to get the golden sixty minutes to myself with my headphones and the eliptical.  Luckily, now that we have a routine down, I feel much more in control.  Reid settled into a great schedule of taking three naps throughout the day (although they're pretty short) and going down for the night between 6-7, which I obviously can't complain about.  His naps coincide with his feedings which works out well because it's easiest to do his feeds in his room with his feeding pump so that we don't have to use the portable pump too much.  In between naps, we play and read books on the floor of his room, play on his playmat downstairs, go for walks (the recent warm weather has been a godsend), and take baths every other night.  He's such a content boy and is becoming more and more animated and verbal each day.  He talks up a storm (sometimes it's more like yelling), especially right before bed....apparently he has lots of stories to tell!

Reading on his favorite cow pillow

Smiley boy

Playing with dad

We've been back to CHOP two times since we've been home and it felt a little strange to go there for appointments and not to spend the day in the NICU (although we definitely squeezed in a NICU visit to see some favorites).  The days were jam-packed with specialist appointments and it was nice to see all of his doctors on the same day so that we don't have to make numerous trips into the city.  The overall consensus is that he is gaining weight pretty darn good at home...he most recently weighed in at 14 lbs. 6 oz (two weeks ago)!  Not too shabby for starting out around 3 lbs.!  The Pulmonologist was happy with how clear his lungs sound, but no clear plan to wean the oxygen just yet.  No rush, right?!  His surgeon looked at his scar (which is fading quite nicely) and did a physical check for scoliosis, which is commonly associated with CDH.  Just from feeling his spine, she said that he doesn't have obvious signs of scoliosis at this point, but he will continue to be monitored.  In the area of nutrition, he's still being fed exclusively through his NG tube, which he developed the skill of pulling out on an every other day basis until we finagled a tape job that keeps it secure.  We were debating wrapping duct tape around his head...last resort:)  Ugh...sticking a tube down your child's throat doesn't get easier with practice, but Bryan and I work pretty good as a team and we are becoming more efficient at it (even if I end up in tears).  Reid is still experiencing some pretty severe reflux, so his dietitian tweaked his formula concoction and added microlipids.  So far, the new formula recipe has alleviated some of his vomiting, but hasn't eliminated it altogether. I don't know who's happier, Reid or George Michael (unfortunately, George Michael's back was sometimes the target of Reid's spit-up).  The dog has definitely become stinkier since Reid's homecoming:)  

GM in the line of fire!

Finally got the NG tube secured...thank you white tape:)

Developmentally, we are working hard to make up lost ground...being a preemie and spending 6 1/2 months in the hospital isn't the most ideal way to start out, but we accept the challenge:)  I had heard accolades about Chester County's Early Intervention Program before Reid was born and so far, they have lived up to their name.  I had Reid assessed the week we were discharged from the hospital and he qualified for weekly physical therapy and monthly speech therapy.  Physical Therapy services have been provided for three weeks and he has made noticeable progress already.  I look forward to our sessions and the therapist is great about giving us a variety of exercises to work on throughout the week...think baby boot camp:)  We've recently introduced a yoga ball and baby surf board into the mix which is fun for mom and Reid.  At this point, Speech Therapy is working on preventing oral aversions which requires me to play in Reid's mouth with my fingers...luckily, he doesn't have teeth yet because he has a strong bite!  Although sometimes I feel like progress is slow, every little gain amazes me when I think back to Reid's rocky beginning.  One thing I've learned is to never doubt this little guy.  For now, we persevere...

Working on sitting

Tummy time on the bed...change of scenery