Our apologies for not posting sooner - we have been busy catching up with life after letting things go for the last 3 months.  The good news is we are almost there, so updates should come more often in the coming weeks.  Now on to our update (which is really long, an indicator that we needed to update sooner).

Josh continues to do well at home.  At his doctors appointment on Monday he weighed in at a whooping 5lbs 12oz!  That is a 7oz increase in 5 days!!  It is common for babies with reflux to over eat because it makes their throats feel better from the reflux, but of course leads to more reflux.  Since our goal is for Josh to be 100% breastfeed we have started weaning his formula while encouraging him to breastfeed longer.  We will begin tracking his weight closely at home (thanks to a loaner scale) during this process to make sure he continues to gain weight.  Josh was also changed to a new reflux medication, Prevacid because he refused to take his Prilosec, which tastes like soap (we taste all his medications).  As this blog is being written, our little guy is sleeping on Mommy's chest having episodes of reflux after eating too much.

Our doctor (who is a friend of Mommy's from Shands during her residency) said that he was doing very well.  She gave us some suggestions for dealing with Josh's constipation (which were very effective later that afternoon).  She also said his heart murmur is a little quieter then last time, so we will continue to follow it for the next several months and if needed, we will follow up with a pediatric cardiologist in a few months.  There was one area of concern for little Josh and that was with his hemangioma on his back.  Because his hemangioma is located over his spine, he will need an MRI to make sure that it does not have spinal involvement.  We are not sure yet when the MRI will be, but we will keep you updated.  It is possible that the hemangioma is a sign that that Josh might have a tethered cord, which would require him to have surgery to correct this and prevent any neurological damage.  Our doctor said that the odds for this are lower given the placement of his hemangioma, but just to be safe we will do the MRI at some point.

Mommy and Daddy have been slowly weaning down the thickener in his formula. We have been using the thickener to help Josh as he transitions to a mature suck, swallow, breathe reflex. He is doing well with this and is now only requiring a little bit of thickener. We are hoping to have him completely off of the thickener and transitioned back to breast milk only by bottle in the next few days.


Josh has not had another appointment with his eye doctor yet, so we don't have any updates on his eyes.  He has numerous appointments next week.  He will see his pediatrician, eye doctor and follow up in Neonatology clinic.  The appointment with neonatology promises to be lengthy as we will see a variety of people while we are there.  They will also check his monitor to see if he is having real events and determine if he will continue with the monitor for a bit longer.  When we had the training for the monitor we were told that it would go off frequently and have lots of false alarms.  We are grateful that this had not been the case with us at all.  It has gone off about 6 times since we got home and although we won't know for sure until they read it on Monday, but only 2 of them seemed to be real. 

Mommy, Daddy and Josh are very much enjoying being home.  Josh is developing a rhythm to his days.  He has two good awake periods, one in the morning and one at night.  He sleeps well the rest of the time, waking up for his feedings during they day and sometimes at night.  Josh is becoming quite the snuggler and loves to sleep on your chest with his head tucked next to or under you chin.  He has grown so much that he transitioned to newborn sized clothes this week.  They are a bit big, but he was not able to straighten his legs in his preemie clothes any more.  We are very proud of our little guy and how fast he is growing.

Prayer Request:

• Josh would do well with his new reflux medication and not have reflux
• Josh would continue to wean well from his thickener and be able to get back to being breast milk only
• Josh's eyes would continue to mature and his retinopathy of prematurity (ROP) would heal up
• Josh's heart murmur would completely disappear.
• Josh's hemangioma would not have any spinal involvement and his MRI would be negative
• Josh would do well with being transitioned to being fully breastfed

Praises:

• Josh is up to 5lbs 12 oz!!!!
• Josh is doing well with the weaning of the thickener
• Josh is now wearing newborn size clothes!
• Josh's constipation is doing much better

(Josh and Daddy enjoying some nap time together)

(Josh looking super handsome in his newborn clothes)

(Josh's first time in the swing - note his space heaters keeping him warm)

(I like this...I think)

(Josh taking a nap in his crib for the first time...his bed make him look so small!)