Littlest Blessing: Eating problems

Showing posts with label Eating problems. Show all posts

November Progress Report

One of Eric's therapists, Nickie came today. She sees him about every 3 months for evaluation.

Height: 31 inches

Weight: 24.9 pounds

Nickie feels that Eric has caught up for his actual age, not just the adjusted age. He has even advanced in some areas such as fine motor skills. The only concerns now are feeding and speech. Eric should be up to at least 6 words right now. While Eric had learned some words, he has forgotten them. Nickie wasn't too concerned since this is common as a child becomes focused on other tasks. We will have a speech therapist working with us starting soon.

Still not much luck on getting Eric to eat. Doing research, I have discovered that many infants and small children can acquire a feeding tube dependency. Originally, Eric needed the tube for medical reasons, he has GERD and loose stomach muscles. He learned that eating hurt and took a lot of work. (For more information, regarding feeding tube dependency click here.) The more he is on it, the more difficult it becomes to get him off of it. Most adults and older children, who need feeding tubes, do not become dependent because most of them have already established a normal relationship with eating and food. They merely have to relearn to eat, not start back at day one.

So what does Eric eat? A blend of things and probably healthier than most toddlers. A typical schedule looks like this:

Upon waking: 3 oz. Ginger-Chamomile Tea

Half an hour later: 3 oz. Ginger-Chamomile Tea

Wait another 30 minutes: Meal #1 - 5 ounces of goat milk with baby cereal (120 cal)

2 hours later: Meal #2 - 5 ounces BeneVeggie, a combination of BeneCalorie with a pureed veggie (180 cal)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #3 - 5 oz Pediatric's Compleat - or a real food blended formula (150 cal)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #4 - 5 ounces of a home-blended meal that adds in new foods to test for allergies (varied)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #5 - 5 oz BeneVeggie (180 cal)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #6 - Usually a blend of evaporated milk, formula and cereal. It takes a long time to digest, but is very high in calories at 300 cal for 5 ounces.

Each meal takes about 15 to 30 minutes. Depending on the day, timing of naps, how quickly Eric's stomach digests, and vomiting, we will get most of the calories in. Eric cannot take in too much at a time. Most children his age would be at 8 ounces at a meal. Sometime even a 5 ounce meal can make Eric vomit. If a meal is too high in calories and/or fat, Eric does not digest it well enough. If we go off schedule too much, we skip the water before the meal and add a an ounce or two with the feed. It depends if there is too much residual left over from previous meals. On good days, we can get all of the1000 calories and up to 40 ounces of liquid total. The schedule changes from day to day but the above captures the gist of it.

Cris and I write it on a white board to keep ourselves on track and then he inputs it in the computer later. I blend the formulas right before I go to bed so that they are ready in the morning. It is a team effort and we both do our best to keep it balanced.

Oh, and yes he is officially walking and getting ready to run.

Health Updates

The Good News:
Eric is currently at 18.5 lbs and is 27 inches long. He is hitting his milestones pretty regularly and is on track for his adjusted age.

The Bad News:
He is still gagging. The constant gagging has not allowed us to start him on solids. It has also loosened up the nissen fundoplication. The nissen is what keeps him from throwing up. He has thrown up three times since the MIC-KEY was put in. It was building up to it before that time. We have an appointment with the surgeon in 2 weeks. Somehow, we need to get the gagging under control, otherwise this will keep happening.

Eric is also back on the Prevacid for the acid reflux. With the opening in the esophagus back open, it has come back as well. We will also need to keep him slanted again.

Other than the eating issues, there are no other problems. It is just this last hurdle that we have to overcome.

Surgery Updates

The good news: Eric is slowly gaining weight and is now past the weight that he was when we first got to the hospital. He now weighs 13lbs 2 oz. When we got to the hospital, he was 13lbs 1oz.

There has been some confusion on whether or not Eric needs the Nissen fundoplication surgery along with the g-rube. The upper GI test and endoscopy/biopsy did not show any damage. A person at the high end of reflux should show damage. Eric also had a stomach bug and we found out today that it causes additional reflux. The pH probe may have been inaccurate.

Yesterday, the nd-tube was moved into the stomach and is now a ng-tube. G for gastric or stomach area. The group of doctors assigned to him think that the new meds he is now on will help with the reflux so Eric will not have to have the nissen surgery. The surgeons however, still think he needs the surgery. BUT, they also have has some incorrect data and Cris and I are wondering if they are also unaware of the stomach bug. This may be skewing their data. Cris only had the bug for 48 hours, but I had it for four days. When Eric was throwing up at night during sleep, he also had a slight fever each time. Eric also has a very low immune system and we are surrounded by sick people. He also did not have the stomach bug until he was in the hospital.

Eric did throw up this morning, but not at night. He did not throw up yesterday at all. Right now, it seems he mostly throws up in the mornings during the first feeds, which are combined with his meds, and then has another bottle and keeps it down. We may just have to play with his morning routine to get things under control.

I am not feeling good about the nissen surgery and after talking it over with Cris, we have both agreed that we want other opinions and more research done to make sure this is a necessary surgery. It may mean we spend another week or two in the hospital to find out for sure. This is a lifelong procedure so we want to make absolutely sure that Eric does need it. Eric still needs the G-Tube.

We will find out more on Monday after talking about it with the GI specialist and the surgeon who will be doing the procedure. Another night of tubal feedings will let us know more as well. It may just have been the stomach bug getting out of his system rather than the reflux.

More Feeding Issues - New Pediatrician

Eric is still having problems eating and it is getting worse. Eric went down from 20 oz of breast milk a day to 15 oz. This situation is considered critical. Eric should be eating at least 30 oz a day. When he was weighed, he had only gained 1.5 oz in 25 days. Cris and I have tried everything possible, but Eric refuses to eat and will throw up if we try to force him.

We took him to see another pediatrician (Dr. D) today that has a great deal of experience with preemies and was recommended by our developmental nurse. We will still need to stay with our old pediatrician (Dr. M) because the RSV shots are really hard to set up. So we will wait until after the shots are done with to say goodbye to the Dr. M. Dr. M is a good doctor, but he is just not experienced enough with preemies and Eric needs to see someone who is more specialized.

Dr. D believes Eric may not be digesting his food quickly enough. This is why we never know if Eric is hungry and partly why Eric has reflux. The food is staying in his stomach too long and not being digested. Therefore, Eric still thinks he is full. Dr. D has started Eric on 2 new medicationsThe first medication will help Eric digest faster. It will take about 2 days before we see results. The second will help with the reflux and results will take about 2 weeks.

If this does not work, Dr. D will send us to a Gastro-Intestinal specialist. Worst case scenario, Eric will get a G-tube that connects directly to his stomach. It is an invasive procedure and we would like to avoid it as much as possible.

Time for shots again

A few days ago, it was time for Eric's flu and Synagys shots. Anyone who says that babies do not have memories, did not see Eric's face as soon as we walked into the building. His eyes welled up with tears and he cried when he saw his nurse. Poor little guy was just not happy.

Eric was weighed at 12lbs 5oz. He seems to only eat 20 oz a day. He has an overactive gag reflex which we will have looked into so that he is able to eat more and gain weight more quickly. His development nurse comes on the 20th and we will talk to her about it then. The pediatrician was not too concerned about his weight since he is still progressing nicely. He reminded us that it usually takes 2 years until a preemie catches up to his full-term contemporaries. We have to keep reminding ourselves that, especially when we have a friend with an 18lb six-month old. (seriously woman! what do you feed that child. lol)

However, the gagging needs to be looked at and taken care of. Eric is almost six months adjusted and it will be time to start solids soon. The last time we tried yogurt and cereal it was a dismal failure. Hopefully the development nurse can give us some pointers as well as start a new therapist that works specifically with eating problems. It is not all uncommon in preemies that have had tubes stuck down their throats since birth.

Besides the eating problems, Eric is doing quite well with his developmental milestones. He is rolling over, sticking out his tongue, walking with assistance, and holding his posture better. He can also scoot along the floor very quickly. He even scooted off his activity mat and tried to scoot under the couch! Or the couch just stopped him. Either way, it is best not to take your eyes off him for a moment.

Here's Eric in his Around We Go play center that Cris and I got him for Christmas. His feet do not yet touch the ground so we will have to wait a bit longer for him to use it.

This picture is better than the first time we put him into it, about a month ago. His little arms would not even reach the edge, much less the toys. He also bored with it and seemed more interested in gnawing the seat.