6 week old in the hospital with multiple feeding/stomach problems

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My 6 week old was recently sent into the hospital from his feeding and stomach issues. Ever since the day he was born, I noticed that he spit up way more than the usual spit up, and eventually it led to vomiting then projectile vomiting. He rejected every formula we tried, and we tried 5 different ones, finally settling on the 6th one. It got so bad, that he would go on screaming fits for hours, and not just 2 or 3 hours but like 6 or 7. He wasn't making any bowel movements anymore and I was worried about him getting dehydrated. We had been in and out of the doctor's to try and find out what the problem was, and eventually after some ultrasounds to check for Pyloric Stenosis, it led us to a children's hospital. This is the blog from my myspace that I kept up while I was in the hospital with him, he is now a little over 8 weeks old: ------------------------- Ever since Aiden was born, I knew there was something wrong with his stomach and a spitting up problem. Since the day he was born, he was spitting up unnormally in the hospital even. He had a problem accepting any formulas, and eventually we went through 5 different ones. All of them made him spit up/vomit and some made him really constipated and some made him have diarrhea. Eventually, the excessive spit up led to vomiting, then projectile vomiting. About 2 weeks ago, he was put on Zantac for reflux, and it only seemed to get worse from there. He spent a little over a weekend screaming for hours on end and there was nothing you could do to stop him. At this point, he wasn't making any bowel movements anymore. The doctor then thought he had Pyloric Stenosis, which is a growth over the tube leading into the stomach, which would cause the vomiting, because it was blocked. He went in for an ultrasound on Wednesday morning and that eventually led us into Strong Hospital that morning. On Wednesday, May 14, we were admitted into the Children's ER at Strong. We were there from about 11:00 am to midnight. He first had to have an IV put in and a feeding tube put in. I didn't realize it, but he was already dehydrated by that time. About a week before, I had seen tears in his eyes for the first time, since babies don't produce tears for the first month or so. Then I never saw them again. When we got to the hospital and after all the times he was poked for needles and iv's, he was obviously crying and he started to have tears again after he had fluids running through him. So they sent us down for an upper GI at first. We had the ultrasound disc from Thompson with the ultrasound results from earlier. The doctors at Strong weren't convinced it was Pyloric Stenosis, so they did the upper GI. He passed that test, and that ruled out Pyloric Stenonis and also the possibility of his intestines being wrapped around the wrong way. From this test, they were also about to find out that he had Gastroparesis, or Delayed Gastric Emptying (DGE). It's where the food takes a really long time to get to the stomach and then sits in the stomach for a really long period of time. His stomach muscles are not strong enough and cannot push the food down fast enough either. So they decided then that they wanted to keep us at Strong, so we were transferred up to the Children's Unit sometime after midnight. On Thursday, May 15, around 5am, Aiden developed a high fever and had a low pulse. In babies less than 2 months of age, the doctors said that this was very serious and it meant a brain, blood, or urine infection, since he was only 6 weeks old. So he spent most of the day getting blood and urine tests done. One of the options they were going to try but thankfully never had to, was doing a spinal tap for meningitis. He had no rash at the moment, so he didn't have to take the test. From the blood tests, they were able to notice that his electrolytes were "different," and he had acid in his blood, which they mentioned would mean he might have a kidney problem. We were already signed up for a lower GI that early afternoon, so we went to that first. He passed the test and would found to again have nothing physically wrong with him, except for the Gastroparesis still. Also at this time, he was still not making any bowel movements on his own, it has been about 4 or 5 days now. Right after the lower GI, they transported us over to ultrasound to do an emergency ultrasound on his kidneys and bladder. Those results showed that he now had Hydronephrosis, which is the kidneys are swelled with excess fluid and urine instead of draining out normally like they should. They scheduled him for an ultrasound at 8 weeks to check on the problem. So by this point, he has 3 seperate issues, and none of them are related to each other! On Friday, May 16, they took him off his feeding tube and put him on a special medical formula called Neocate. This was his last option for formulas, to try and rule out any allergies to the formulas. It has no amino acids in it and it is milk protein free. He took the first bottle fine without any vomiting at all for the first time, so we though that it was going to work finally! But for the rest of the day, he vomited up normally and also projectile vomited again. He was also able to make 3 bowel movements for the first time in many days, after the doctor checked him and manually made him go. At this point, they signed him up for an Endoscopy for Monday morning, and gave him the weekend to rest free of tests. They also started him on Reglan, which is a strong medicine that makes the stomach muscles contract and move more so that the food can get into the stomach quicker. On Saturday, May 17, he spent most of the day vomiting and projectile vomiting a lot. So they took him off the Neocate formula and put him onto Pedialyte for the rest of the day and night to hydrate him again, and also to rule out any allergies. He still vomited the first 1 or 2 times on Pedialyte, which meant the problem is not an allergy one. He then made it 2 feedings in a row after that without vomiting, which had been a record so far. On Sunday, May 18, they switched him back to Neocate after hearing that he went 2 recent feedings without vomiting, thinking that the Reglan was finally starting to work. Not 5 minutes after the GI specialists had left the room, he threw up all his formula. So we had to backtrack again! They decided to keep him on the formula anyways, because he had to eat something obviously, and he was signed up for his Endoscopy the next morning. He spent most of the day vomiting up his feedings, and never made it past 2 feedings without vomiting and projectile vomiting. On Monday, May 19, he went in for his Endoscopy at 1:00 pm. The last time he could eat was 6:00 am. Before he went in, they were doing his vitals and they heard an extra heart rhythm, so we had to be sent down to Cardiology for an echo/EKG. They were checking for a heart murmur, hole in the heart, or sloppy valve, and he ended up having a heart murmur thankfully. He did ok with the Endoscopy and passed the test. There is no inflammation along the esophagus or anything else physically wrong. They decided to put in a pH probe, which is like a feeding tube that goes into his stomach and measures the pH levels in his stomach. It is attached to a box that I have to switch to if he's eating/not eating, and sitting up/laying down. I also have to keep a record of everytime he vomits. He was taken off Zantac and all iv's to be put on it. He will be monitored for 24 hours on it. The anesethia took a long time to wear off, and he didn't even eat until 7:30 pm that night. He kept choking and coughing and making these squeaking noises from the tube. He would hardly eat anything and would only eat a few drops at a time, so it took forever to feed him. He vomited once about an hour and a half after he ate when the nurse was doing vitals, and he vomited again during a bottle later on. On Tuesday, May 20, he still has the pH probe in and will be monitored throughout the day. He is still really out of it, and just wants to sleep all day long, doesn't eat much, and has a low pulse again. After today, they can see how much reflux he really has, if he has any at all. For the moment, they are just working mainly on his stomach problem and the fact this it is not strong enough and that he's not strong enough to pass bowels by himself either. The next options will be lots of meds or a major stomach surgery where they pinch a valve off and open his stomach wider. ------------------------------- After that last post, we left the hospital a few days later. The results from the pH probe showed that he has Acid Reflux (severe), and they also took biopsies of his stomach. The whole time we were there he was maintaining his weight, not losing, but not gaining either. Eventually, he ended up losing an ounce overall. These are his diagnoses and his medications that he is on: Diagnoses: Gastroparesis/ Delayed Gastric Emptying (DGE) Hydronephrosis Acid reflux (severe) Medications: Metoclopramide/Reglan Omeprazole/Prilosec Ranitidine/Zantac Gaviscon Glycerin suppositories Miralax Prune juice Formula: Neocate At the moment, he has defintely improved in the amount of spit up that he normally showed, and hardly ever vomits anymore. He also spits up excessively at every feeding, but it is improving. He still screams however still, for hours on end. Also, since the Endoscopy, he has this horrible cough, very raspy and loud. At his doctor checkup a few days ago, they said his lungs sounded clear, but they are rechecking it in a week, and is probably just a complication from the Endoscopy. To me, it sounds more than just that, it's really loud and he's constantly coughing and choking and he breathes/snores very loud now. If anyone out there has a baby with any of these problems or are on any of these medications or can help with anything above, I would be very grateful!