Quick update - Prayers needed!!

We are needing your prayers.  Grants oxygen sats have been dropping more and more lately.  He is on more oxygen, more medication and more sedation to help this from happening.  Over the last few days he has been dropping into the 40's and turning a pretty blue smurf color.  Please pray he hasn't suffered any brain damage from lack of oxygen.  My poor boy can't catch a break. 

Day 55 at LeBonheur 9-15-2011

    It's hard to believe that Grant will be 8 weeks old tomorrow.  He is still in the NICU at LeBonheur and we are not sure when he may be able to come home.  Last Friday afternoon, Grant had another TET spell and his oxygen level dropped very low.  He was able to recover without going on the ventilator, but they had to give him Morphene to "relax" his constricted vessels.  This spell was the 2nd worse one he has experienced so far.  He currently gets some oxygen through his nose cannula.  He still has his nasal feeding tube and he is up to 1oz of milk every 3 hours.  His weight continues to climb slowly and he weighs over 7 lbs now. 
   They are not having him feed from a bottle right now because they feel he will tire himself out which could lead to more TET spells.  His due date was yesterday, so he should not have many preemie related issues.
   We dream of the day Grant will come home.  We can hardly wait...
  

Day 46 (Labor Day)

   Today was a really great day.  Grant had a great weekend off the ventilator.  He  has not experienced any more of the "spells" where his oxygen saturation levels drop.  He is breathing much better on room oxygen with a nose cannula.  He was having a bit of trouble digesting the small amount of milk that he is getting, but tonight the nurse said everything looked good.  We are optimistic that everything will continue to improve as his actual due date approaches (9/14).

Grant 44 Days Old - Gestational Age (38 Wks - 3 Days)

   Grant is now off the breathing tube after 10 days...  Cathy was finally able to hold him again and they both could not be happier.  The past couple of days have been tough to watch Grant struggle with being uncomfortable and restrained because of the tube.  It seems like he was stuck in cycle of which he could not get out.  They would not remove the tube because his oxygen saturation level would drop, but his sats would drop when he gags, vomits, or gets upset.  Of course, the tube was the cause of the gags, vomit, and anger.  He would even hold his breath also causing his sats to drop.  Finally the cycle was broken Friday at 2pm and that pesky tube is out now.
   More converations with Dr. Joshi (head pedi-cardiologist) and the plan remains the same.  Surgery when Grant is 3-4 months old (should be a min of 10 lbs).  He will likely come home for a period of time before the sugery.  We will have and oxygen satuartion monitor at home to allow us to check his levels.  That part is very scary for me and Cathy.  We won't have the luxury of all those monitors and equipment, not to mention the highly trained medial staff available instantly.
   As Grant rapidly appraches his true "due date" (9/14) we are hoping that his breathing and other pree-mie related issues will begin to subside.  He has been feeding on milk (very small amounts) through his nose tube for  a while, but now that his breating tube is out, he should resume bottle feeding soon (not sure when yet).  They did indicate that he was having some trouble with digestion, but they will continue to monitor it closely.

Sketch of Grants Arteries

There should be a "Y" shaped pulmonary artery under the big arch...  but he doesn't have one.  The smaller vessels in the diagram are doing the work of a pulmonary artery for now.

Grant wakes up after Heart Cath

He looks at you with those shifty eyes as if to say...  "Get this tube out of my mouth!"

6 Weeks Old - Heart Cath Results

   This week Grant finally got his heart cath and we finally have some good news to share...  The cardiologists and cadio surgeons met on Wed afternoon to review the results of the heart cath and they claim that he has enough vessels (called collateral) to have the necessary surgery at 3-4 months old (around 10 lbs).  Keep in mind the surgery will be "complicated and risky" however, we were delighted to know that he has enough material with which to work.  We also know that he will require multiple complicated and risky surgerys throughout his young life.  They still believe that Grant will come home for a period of time before the surgery.  Cathy and I look forward to his homecoming.  For now, he still has that pesky breathing tube in, but we are hoping and praying that it will be taken out tomorrow (Fri).  He is very close, but they wanted to wait a little longer.  He has been on the ventilator for 9 days.  They originally inserted it when he was having trouble with his oxygen saturation and then he stayed on it for the heart cath.  Today Cathy reported that it was very obvious that  the tube was bothering him.
We believe if he can get his breathing consistent, get him back to feeding from the bottle, and gain some weight, he may get to come home soon.  We dream of that day.  More updates over the weekend.