Daniels Twin Update - Tue, Jan 24, 2017 at 10:50 PM

Hey Everyone,

1 - Kristine is getting better, even if it taking longer than what we are used to. 

2 - James is eating well and consistently, (EXCELLENT).  A followup with the pediatrician shows his bilirubin count is at 12 (GOOD) only up a 2 points since we left the hospital on Sunday morning. Now I just have to adjust to getting up at 4:30 in the morning for feedings ;) ...argh! I must be getting old, I don't remember it being this hard. 

3 - Joseph - 

    In short, they attempted to remove the ventilator but something was blocking his breathing (NOT GOOD) and after 2 hours of hard breathing they intubated him again (3 time).   Putting him back on the ventilator  resolved the problems, he is resting quietly, he is breathing 50-70 times a minute - mostly on his own (GOOD), Oxygen levels are good.   

    The big question is what is blocking his breathing?  Doing an endoscope the Doctor saw inflamed vocal cords. The throat could simply be swollen from the tube being there or there could be some other blockage that prevent the breathing..maybe the root cause of all the problems.  With this being the second time the extibation has failed and a specialized Ear Nose and Throat doctor needs to consulted and probably  do a “rigid bronchoscopy” (see: http://www.hopkinsmedicine.org/healthlibrary/test_procedures/pulmonary/bronchoscopy_92,p07743/).   In order to do this would he need to be transported to primary children’s (GOOD/ NOT GOOD).  The sad part is that he would have to endure a transport (Ambulance or Helicopter).  However, a good, thing because he would have access to the most advanced medical/specialist in the state.  

    Overall, Joseph is now up to ~8 lbs and is a fighter and one strong little dude.  Having spoken to several people that have had kids in the NICU say there are good and bad days.  So far we have had more good days than bad days so we will take that as a win.  We have faith and hope that he will come home soon.  

Thanks to each of you for your love, support, and thoughts.

Jason and Kristine

NOTE: Feel free to forward to anyone that would like to know what is going on. I have attempted to include everyone that might be interested, but I am sure I have missed someone, please let me know if you or someone else should be added to the list.  Or if I am bugging you too much let me know and I can take you off the list.