Needless to say, the last few days have been pretty much downhill from where our thoughts were on Monday and Tuesday. We spent from 4:00 until 11:00 at PCMC today. Everyone had a turn to hold Carter though he chose to sleep through most of it. We talked with Dr. Hewes (pronounced Hughes) who is Carter's pediatrician at PCMC to go over some details. Carter did have a fever yesterday morning but they are watching him carefully. If newborns get fevers within the first 2 months, they draw blood and urine samples and also a lumbar puncture (spinal tap) to make sure of the bacteria or virus and provide provide proper treatment. The spinal tap occurs because the blood/brain barrier isn't fully developed until 2 months of age meaning blood borne illnesses can cross into the brain and cause damage. It appears the fever isn't anything but him being warmly wrapped or in a warmer room. If he has another fever, a spinal tap will occur.
He is still losing weight (he is back to 8 lbs 6 oz today and his birth weight 6 weeks ago was 8 lbs 0 oz. He has ranged from 7 lbs something to 9 lbs 2 oz in his stay. The goal is getting him to gain weight and keep the fluid out of the lungs. If they feed him too much, he gets fluid in the lungs. They give a diuretic to get the fluid out and he loses weight. They are looking for a good mix. The heart issue is the underlying factor. If the heart could work efficiently, it would be easier to do things you'd expect with a baby. The docs went to a 50-50 mix of milk and formula and are giving him the maximum calories they can per ounce so the diuretic can do what is needs to do to help the heart and Carter can hopefully gain weight. They can give him up to 10cc more per hour in feeds and then they are at maximum feeding capacity for someone his size. If he can't gain weight at that point, he'll need his heart surgery sooner rather than later.
His bilirubin climbed again this week but is not too high. The GI doc felt that the heart issue is not letting the blood clean out the liver like it should so his bilirubin will rise and fall with how well the heart is working. Carter has gone back to a NJ tube with continuous feeds and that is likely where we will remain until heart surgery time. I don't see any change with his feeds in the foreseeable future.
If he can gain weight with what was mentioned above with feeds, they'll let him come home and we'll have him on O2 and continuous feeds until we return for his heart surgery. He is being prescribed several diuretics, vitamins, heart conditioning medicine, and others to keep reflux down, and bowels movin'.
The cardiologist would prefer him to be at least 2 months old before scheduling heart surgery so we're probably in a 2 to 6 week window. They would really like him to be 10 lbs but they have successfully performed this surgery on kids smaller than Carter. Therefore, I expect his heart surgery to occur between Memorial Day and July 4th. In summary, if he cannot gain weight under maximum caloric feeds, heart surgery is the only way for him to come home.
Thanks for your continued prayers and support. Carter will be 6 weeks old on Monday. Happy Mother's Day to all...
Love,
Alan & Kristi
Carter's blog: http://andersons6175.blogspot
Carter's PCMC page: http://www.carepages.com
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