One Step Forward... Two Steps Back 8/26/2011

   Another tough week for little Grant.  Last Tuesday night his oxygen saturation dropped and stayed down for several minutes.  They had to put him on a ventilator to get it back up.  He has experienced occasional small "spells" like this before, however, the nurses were always able to get the numbers back up quickly.  This has caused some concern that his heart surgery may have to come sooner rather than later.  They are planning to do a heart cath next Tuesday to determine what is possible surgically to improve blood flow to his lungs.  Xrays of Grant's lungs have been very cloudy which typically means infection, pneumonia, or partially collapsed lung(s).  They do not think its infection or pneumonia since he has been on an antibiotic for several days (for his stomache infection).  We have to wait for his lungs to clear before they will do the heart cath.  They have started to turn/reposition him on more frequent intervals and a respiratory therapist comes by every 4 hours for PT (they smack him on the back and sides several times to loosen things up in his lungs.
   No way to know what the next steps are other than continued focus on his breathing, ween him off the ventilator, resuming his bottle feeding (after the breathing tube is out), and the heart cath on Tuesday.  They have a big Cardio team meeting on Wednesday to discuss each patient and Grant's results will be on the agenda.  Hopefully we will know something by the end of next week regarding when his surgery might take place.  Everyone believes it will ultimately take several surgeries to fix his condition and they would like to wait as long as possible.  If he continues to have problems with his oxygen saturation level, they will have to do something surgically now.
   There is some good news...  He is up to 6.3 lbs and at his last feeding, he was up to 35 ml which is just about the amount he should eat for his age.  We hope the breathing tube comes out tomorrow and he resumes bottle feeding.

More to come...

Big sisters get to hold Grant for the 1st time...

Day 27 at Lebonheur

   In the past week Grant had a 2nd blood transfusion which has greatly improved his coloring and his ability to maintain his body heat.  He has been on IV nutrition (no Milk) and antibiotics for the past week due to a bowel infection.  He will start back feeding tomorrow (8/17) and they will gradually increase his consumption over the next several days.  Overall he is doing pretty well.  They are giving him some oxygen to help with his stats (they occasionally drop).  He is still gaining weight (5.1 lbs today).  We are hoping he will feed well and continue to grow.
   Sarah and Lily got to hold their little brother for the first time Sunday.  They were both very excited and nervous to hold him.  Sarah was very quiet and still while holding him, while Lily kept kissing him on the head.  I think Lily is going to really love being a big sister for a change.
   Cathy and I now have a fairly regular routine.  In the morning after the kids get on the bus for school, I go to work and Cathy goes to the hospital until after lunch.  She then returns home to get the kids off the bus, begin homework, dinner, and the night routine.  Although it is tough to constantly juggle schedules, it is still managable at this time.
   Thanks to everyone that is following us on this crazy journey.  We very much want Grant home soon, but he is just not ready yet.

Grant - I love his hairdo

Grant - 19 days old

   It seems like it has been much longer than 19 days since Grant was born, but it's true.  A week ago they were beginning to talk about when Grant may come home, but that conversation was short lived.  Unfortunately, Grant is not feeding very well from the bottle so he has a feeding tube to make sure he eats the volume they want him to.  In additiona, he has trouble maintaining his body temp, so he stays under the heat lamps (I think he kinda likes it).  He was gaining a little weight each day, but he has lost over the past couple of days.  He weighs about 4 1/2 lbs. (slightly more than his birth weight) He also had a blood transfusion yesterday (which is not uncommon for premies) because he was pale and his stats had dropped over the past few days.  So far the transfusion seems to have helped.  It's easy to get discouraged, but we have to remind ourselves that he is still a premie and was not due until 9/14.  It's easy to get caught up in the "set backs" and overlook the successes.  Overall, he's doing well.  At this point nothing is life threatening and we expect that he will come home one day soon..
   What's next...  Grant will continue to try to bottle feed at every other feeding and then tube feed the balance when he tires out.  A speach therapist will examine his mouth to see if there is something physically hindering or complicating his feeding.  No new updates from the Cardiac team.  I predict we will not hear much for several weeks from them until he gets bigger.  For now, we continue to be patient and grateful for the small wins.  Grant will not be able to leave Le Bonheur until he is feeding well, gaining weight, and his stats are stable.  More to come...