Hot town summer in the city

Gabe is doing okay. We are still thinking he has dumping syndrome. We've been feeding him over an hour when he eats well and adding more volume and feeding him over an hour and 15 minutes when he doesn't eat well. This has kept his blood sugars from going over 200 and he doesn't bottom out anymore. He is still eating well by mouth. We have a GI appointment in a week and a half and I'm going to ask them if we should change formula, add more to overnight feeds, do more frequent, smaller meals, etc. to help with the stomach dumping. This week included many more smiles than last week...from both Gabe and me. Other than the frequent blood sugar monitoring, we've been going to cookouts, birthday parties, and a wedding.

Gabe is too sweet

Literally. So Gabe has always been a little sweaty after feeds. We often thought this was due to gass, discomfort from reflux, overfeeding, etc. Feedings have gone much better every since we started overnight feeds. He's been eating much better by mouth. The problem comes about 10 minutes after his tube feed is complete. He starts sweating to the point that his hair gets wet. The GI RN suggested slowing his rate down from a 30 minute feed to a 35 minute feed, but he was still sweating. I was talking to a respite nurse about this and she said it sounded like dumping syndrome. Typically, food gets broken down in your stomach and slowly empties into your intestine where nutrients are absorbed. With dumping syndrome, it empties quickly from your stomach to your intestine, so you have a ton of nutrients to absorb all at once. This causes blood sugars to go a little higher. This makes your body release a ton of insulin all at once, then causing low blood sugars. This up and down often causes sweating. So, being the diabetes RN that I am, I just happen to check Gabe's blood sugar on my expired home meter during one of these sweaty spells and it was over 200. I checked myself and I was 80. I called the pediatrician and she wrote a script for a new meter and test strips to see if I noticed any trends. Gabe's blood sugar is normal before feeds, then after a feed when he sweats it goes into the 200's, then an hour later it's in the 50's - 70's. So, I called the Endo MD I work with to get some advice. 200 is definitely not a normal blood sugar and I was afraid of diabetes. Kids with Down Syndrome have a much higher incidence of developing Type 1 diabetes than the average population. I din't want to take him to the ED since he looked great other than having sweaty hair. She gave me some instruction and I was able to get him a clinic visit today. They think it may be dumping syndrome and want to go down that route first. Endo is going to talk to GI and they are suppose to let me know a new feeding schedule to try. He may require smaller, more frequent meals. We'll see what they suggest. They also may do a gastric emptying scan to officially diagnose this. If it turns out that it is not dumping syndrome, then we will go down the diabetes route. We will have to do some testing to examine Gabe's insulin producation. In the mean time, we're taking it day by day. I've been checking Gabe's blood sugar about 8 times a day to detect these trends. It may be awful to say, but I really hope this is dumping syndrome...diabetes would be really really awful. It's one of my biggest fears since it would mean the chance of Gabe being able to live independently one day would be in question.

a week of good news

Gabe's 6 month post open heart surgery visit went well. The Cardiologist thought he looked great. They were so happy to see him sitting up and smiling and looking so big. They hadn't seen him since October....he's a different kid now. His liver is at the level it previously was (about 2 cm lower than usual). This could be due to his pulmonary hypertension that developed pre surgery. They expect it to resolve over time, or at least not get worse and they didn't seem concerned at all. Just listening to his heart, they don't anticipate he is having any major mitral valve leak. He will get an ECHO in early November to check everything out. If the leak is still minimal to none, they will take him off his Captopril. It was a very good visit.

On Friday, Gabe was sedated and the ENT doctor took a look in his ears. They cleaned out lots of wax and fluid and put in tubes. After the tubes were placed and he was still sedated, the Audiologist did a check and he passed the hearing test. This was a major relief that it wasn't permanent hearing loss and he does not need hearing aids. The ENT doc then did a laryngoscopy/bronchoscopy to look at Gabe's airway. Since he had a difficult extubation back in Oct., he wanted to make sure everything looked good and get an idea of the size of his airway for future reference. When it was all done, they called us to PACU. Poor Gabe was waking up and just sobbing. I snuggled him and rocked him and he eventually calmed down and woke up from the sedation. We took it easy that afternoon and evening and the weekend has gone well. It may just be my imagination, but we have noticed that Gabe is making alot more noise since getting his tubes. He's saying lots of dada's and doing this yelling thing to get our attention. It's cute for about a minute and then you just want to start telling him to use his words...oh wait, he's a baby.

Feeding is improving. He's still doing lots of tongue thrusting, but he's tolerating the feed more. We started doing overnight feeds from 10pm - 6am to make everyone's life easier and then we feed him with babyfood and thru the tube 3 times a day. This new schedule has helped with the eating by mouth and he's back up to 5-8TBSP/day.

Happy Mother's Day!

I had a great one.

exhausting week

Gabe has had a good week with physical milestones and a bad week with feeding. The good news is Gabe is sitting independently and holding and playing with toys. Now for the bad news. We went to GI clinic last week. Gabe's weight had dropped from the 60th to 40th percentile and I thought GI should really be involved at this point with his feeds instead of the Gtube surgeon and cardiac dietitian. So we get there and come to find out Gabe is getting way too little calories and fluid and we need to add a fifth feed daily. I understand this and I really don't want his weight to drop anymore...problem is, Gabe does not like a fifth feed. His reflux came back, he was extremely fussy after his feed, and very sweaty. It was hard to make it thru last weekend with such an uncomfortable baby. I felt like I was stuffing him to the max. The amount he was taking by mouth had drastically gone down. It's so hard when you work so much on feeding, to feel like all your hard work is lost. I called the GI nurse on Tuesday to see if we could try anything else to help with feeding. She suggested extending the 10pm feed over most of the night. So, we are feeding him at 6am, 10am, 2pm, 6pm, and then a slow feed from 10pm-4am. He woke up alot at night this week...I guess b/c we disrupted his schedule some. I'm not really sure how the longer feed is making him less full during the day, but he is doing much better. Maybe his stomach just needed to stretch a little and get use to it. He has actually eaten a little better the past couple days. His technique is very good as he is finally figuring out that his lips can move seperate from his jaw. He is still a little fussy after his feed and he still gets a little sweaty. I'm going to keep with this schedule till Wed and see if he keeps making progress. I just keep trying to think of ways to make him continue to be motivated to take babyfood while incorporating that extra feed.
We have a Cardiology visit on Wed. This will be our 6 month post surgery follow up. I'm a little nervous. They say he is repaired and should be just fine, but the sweating with feeds and the fact that docs say his liver is on the larger side of normal makes me nervous. Sometimes being a nurse makes you worry way too much...or maybe it's just in my nature.
I'll post pictures later.

One year ago

Sorry it has been so long. We've been super busy with weddings, baby showers, wedding showers, and outside fun. Gabe has been doing well. He was Baptized last Sunday. He was actually Baptized in August in the hospital, but last week was the official stuff. We've been doing lots of therapy. Gabe's pecs are incredibly weak, so we are really working on him moving objects to midline and activating his upper body. You really need your pecs to get into any type of crawling position. Poor Gabe just hates being on his belly and using those chest muscles. Hopefully he'll realize that using these muscles will help him. We have also gone to the Down Syndrome clinic at Cincinnati Children's Hosp. to get some extra therapy from the speech therapist on feeding. Gabe did great with a vibrating spoon. Who new that spoon would make such a difference. He still doesn't like the cup, but he's averaging a good 4-5 Tbsp a day with the spoon now. One step closer....

One year ago today, I found out I was going to have a child with Down Syndrome. After all the tears and struggles, look at the cute little guy I've been blessed with. He makes me smile everyday.

Busy Weekend

Swim class

Playing outside

Happy Easter!