It's amazing the difference a few days can make. Last Friday everyone was concerned because Corrigan couldnt eat from a bottle without gagging and throwing up. The doctors had Occupational Therapists come down to find out if he was having difficulties swallowing and find out what the problem might be.
The OT , Joan, was so sweet and took time to try and feed Cor and see what might be the problem. She watched as he struggled to figure out how to breathe and swallow at the same time and observed that he was losing a lot of the formula around the nipple, down his neck, instead of getting the majority in his mouth. She recommended a "swallow study" for Monday to determine if he had a physical problem closing off his airway in order to properly swallow. The doctors kept in his NG tube and fed him what he was unable to consume by bottle for the rest of the day.
Late Friday evening, around 2am, I gave him a bottle and it was if a light had switched on in his brain. He took the entire 75cc of formula in 7 minutes without spilling a single drop. The night nurses were thrilled but cautious in their excitement for the baby. At his 4am feeding ( he was still on a 2 hour feed) he didnt do as well but managed to eat about 40cc of formula before getting sleepy and passing out comfortably. Mark and I told the nurses and doctors that we thought that he wasnt motivated enough to eat because he was getting a continuous feed through his NG tube. We wouldnt feel like eating a big meal every two hours if our stomachs were already full would we?
Finally, someone took our suggestions and moved Corrigan to a three hour feed and stopping the NG tube feed. The idea was that he would be given 75cc every three hours. He had 20 minutes to eat it by bottle. What he did not finish would be put in his NG tube, slowly, over the following 40 minutes. At first, I wondered why they wouldnt just give me an hour to feed it ALL by bottle but they explained that he was still not fully recovered from his ordeal and that because he was working so hard to feed he was burning too many calories. They didnt want to wear him out too quickly. After the bottle/tube he would get nothing by mouth or tube for the next two hours. We hoped that the two hours off would motivate him on the third hour to eat from his bottle.
It took ONE three hour cycle for Corrigan to realize that he didnt like the idea of hunger very much at all. His screams for food tore up the floor and made the nurses smile. By lunchtime the next day he was taking ALL of his formula by bottle, without a single gag or vomit, and was hungry for even more. The NG tube came out on Monday and he is now wire/tube free.
Also, because he is so very hungry all of the time ( which is a great thing) they had to make him a special batch of non-protein formula to supplement his regular formula. He gets, based on his weight, 600cc of medicated formula a day. They mix up his next formula batch, based on any new weight gain, at midnight each day. With Cor's condition every bit of gain has to be noted so that his protein can be adjusted in order for his body and brain to grow. While his disorder renders protein toxic he NEEDS protein in order to grow bigger and smarter. Banning all protein from his diet would not work because the body would then begin "eating" his muscles/brain in order to get protein. The nutritionists have spent hours calculating (and then adjusting) the minimum amount of protein that he needs…based on his weight…and then adding the "special sauce/lettuce/cheese" medicine cocktail to the formula in just the right amounts to prevent his body from taking that protein and turning it into toxic ammonia. Right now, he is eating protein amounts equivalent to 20oz of straight-off-of-the-shelf regular baby formula with very little medicinal intervention. He is doing extraordinarily well.
In fact, he is eating so well that he is eating all of his 600cc of medicated formula by 4pm and eating the supplemented protein-free stuff the rest of the evening. He is gaining 60-70grams a day and has far surpassed his birth weight after taking a huge hit with the onset of his disorder..losing a pound or more that first week. Our Little C is a piggy and we love it.
The genetcist told us that babies have a "honeymoon" period with this disorder…when they are growing rapidly they do not seem to get sick as quickly and we are also fortunate because he was born in the Spring/Summer and not in the middle of cold/flu season. We plan on enjoying this time with Corrigan because we are well aware, now, of the nightmare that winter 2008/2009 could become.