Unfortunately, Luca is STILL in the hospital.... and Tuesday ended up not bringing him home to our arms as it was supposed to. He was scheduled to have a swallow study done on Tuesday at 1:45pm, and rather than taking him there myself (which would be a logistical mess with the other kids), I just had the hospital transport him to Children's Hospital in Boston to get the study done, transport him back down to our hospital, and then the plan would be that he would be discharged that evening. He hadn't had any heart rate spells or breathing issues since Thursday-when they started thickening his formula with rice cereal. So, everyone thought the problem was fixed! They just wanted to complete the swallow study to ensure there was no anatomical reason he needed thickened formula-and that it indeed was just that his throat muscles/tongue still needs time to strengthen and get coordinated for swallowing.
A swallow study entails taking a number of xray scans repeatedly while Luca is taking a bottle that happens to have some barium in it. They watch how he swallows, and watch where the milk goes. What they actually found was that with regular milk he was aspirating some of the milk almost down his lungs every time he would swallow. His swallow reflex is just a little delayed. After they saw that-they then thickened the milk with a little rice cereal and watched him swallow again. They found that it helped a little bit, but not completely. They then added more rice cereal to his milk. In fact, they added the highest recommended amount of rice cereal that is suggested to add if a premature baby has this kind of problem. When they did that, they saw that his swallowing was fine. There was no problem with any milk trying to head down to his lungs instead of his stomach.
So there we have it, Luca's swallowing muscles and swallowing coordination just need a bit more time to 'catch up' to how strong they should be at this time (there is no apparent mechanical problem or neurological problem causing it). Until then, we keep adding rice cereal to his milk and we just keep watching him a little more closely to make sure he paces himself during feedings-taking that break to breathe. They didn't let him go home on Tuesday because they want to watch him on this thickened formula for a few days, making sure that he tolerates it ok, and still gains weight, and continues to have no spells. So.... now we are looking at Friday for discharge! He did fine all night last night and has done fine so far today on this thickened formula.... so it looks good. He gained some weight again last night too. He is now 8 pounds 15.6 ounces!
They will plan to do another swallow study in about 6 weeks to see if he has improved and if we can reduce the thickness of his formula again... and get it back to 'normal'.
So hopefully our next post will include a picture of the whole family together.... (please, please, please)...
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