Keeping perspective

Things seemed to be looking up for Mr. Joshua yesterday morning.  He slept well during the night, managed to sleep right through a heel prick to test his hemoglobin levels, and - most importantly - had multiple significant poopy diapers (this is especially important for gastroschisis babies since it signals that things are making their way through the GI tract)!  Then came the afternoon and things started going downhill from there.  When I returned from lunch with my parents, the nurses told me Joshua's hematocrit level was low and he required a blood transfusion.  This means he had to have an IV inserted in his left hand and it is now taped up with a splint.  He doesn't like this one bit because he enjoys putting his fingers in his mouth.  The plan had been to remove his stomach tube again today because the output had been much less and light, almost clear, in color.  Then between 6-7 last evening, I noticed a large amount of dark green liquid coming out of the tube and alerted the nurse.  I could tell our nurse was really disappointed with this turn of events since it could mean Joshua has a blockage or some other issue in his upper GI.  Josh's stomach tube was put back on suction.  So just like the doctor's have told us from the beginning, recovery from gastroschisis is tricky and we can expect multiple setbacks along the way.  The doctor explained to me this morning that the poopy diapers mean the lower GI tract is working, but the green bile being pulled from his stomach means the upper GI tract has not caught up yet.  He will not be able to start on feeds until both parts of the GI tract are working in conjunction with one another.

I have met two remarkable women the last few days that have really helped me keep things in perspective.  I was feeling down and discouraged about Josh's lack of progress, but these ladies who happened to cross my path have me thinking about things in a new light.  I ran into a mother in the laundry room who was nice enough to throw my clothes in the dryer two nights ago.  We struck up a conversation after I thanked her for this courtesy and she told me about how her 4 year old son has been at Egleston since June waiting for his second heart transplant.  The first transplant only lasted a few months and now they are here waiting an unknown amount of time for a second suitable heart to appear.  I can't even imagine!  The second lady passed me in the NICU hall last night and asked if my last name was Folden.  She apparently had read my blog and was in NICU A with her son when Joshua was admitted.  Her son was born at 25 weeks in April and has had 11 surgeries with more still to come.  She is planning on being here until October or December.  Again, I was speechless and thought about how fortunate we are to be dealing with a treatable condition that will not affect Joshua for the rest of his life.  I know he will get better and it is just a matter of time.  It's time to count my blessings and quit feeling sorry for our situation.  I still feel heartbroken when I know Joshua is hurting and I can't do anything to help him feel better, but things could be so much worse. 

He does open his eyes every now and then

Our little fighter flexing his muscles