May 24, 2009

Day 105

Current weight: 6lbs 12oz (3065 grams)

There has been a few changes with Ambrose over the last week. He was having difficulty feeding and it was determined that the nipple on the bottle was the problem. The doctor wrote an order for him to only use a cross-cut nipple, instead of a high-flow single hole nipple. Well, he didn't like it at all. In fact, he only would take 5-10cc of milk and he is supposed to take 70cc. The nurses all week would have to throw out milk and use new milk in the feeding tube. The reason the milk was thrown out is because it was mixed with Simply Thick to help Ambrose from aspirating. This weekend he was switched back to the high-flow nipple and he started to take larger amounts of milk...between 25-35cc a feed. The problem is that he began to cough, gag, and, sometimes, brady (where his heart rate would drop to the lower teens!) So the thought is that he may not be able to tolerate the honey-thick consistency either.

Today the doctor wrote an order to discharge all bottle feedings and return to the NG tube feedings. Ambrose will rest his lungs for two weeks or so and then will have another Barium Swallow test to see if he is aspirating when he is bottle-fed. We think this is good for him at this time. He needs time to rest and let his lungs grow. He's working too hard right now while he bottle feeds. Maybe in the next couple of weeks his oxygen will be weaned and he'll be in a better position to feed with the bottle again. If the feedings don't go well for him and he goes down on his O2, then he may be discharged with oxygen and a feeding pump, but with a gastric tube. We prefer he comes home with no feeding issues, but he needs to stop inhaling all his feeds first and grow his lungs.

Ambrose also had an Echocardiogram last week. After reading the results, a doctor determined that there was a mass near Ambrose's heart. He called for a lateral x-ray for clarity. After this was performed, the doctors were able to see that it was not a mass, but his thymus, which is larger in infants. We were a little scared at first, but extremely relieved with the final results.

Charlie is doing well at home. He is growing quickly! Today he made an appearance at his brother's bedside. Gina took him in to see Ambrose and for their weekend nurse, Terri, to see him. They weighed Charles and he is 7lbs 12 oz (3530 grams) and his length is 18 1/2 inches. He's a full pound bigger than Ambrose right now.

Please keep Ambrose in your prayers. The nurse today said he could really use a miracle.


  1. My prayers and thoughts are with you all.

  2. Thanks for posting. Praying for Ambrose!