First tooth

After many days of chewing on everything and lots of drooling, Brie's first tooth broke through yesterday. She has been pretty pleasant through the entire thing and I did not even expect to find anything in there. It seems like she has been teething forever, but she never really complains about her teeth.

Maybe it was a combination of her teething and her cold that made her eat poorly the past week. She has been eating better the last 2 days. Yesterday she took 25 oz, which is great for her. We have increased the calories to 22 per oz, but I am hesitant to go any higher. Looking back at our feeding diary when we went to the 24 cal on the nutramigen that is when the vomiting began again. So far she has not vomited the Elecare. I may call the nutritionist on Monday to see if there is anything else we can add to the formula to make it more calories that is not so rough on her little tummy. We also started adding probiotics to her bottle to see if it helps.

She has also been doing a little better on her solids. Today she had some squash for breakfast and some chicken noodle dinner for supper. She loves to chew on baby toast and puffs. I found some baby dried apples and she loves them. Yesterday she actually took a portion of 3 of her bottles awake. A real accomplishment. Today she took a few sucks awake and then was done. I have been letting her play with her bottle for as long as she wants before every feeding to get her used to it again. Also we have been giving her a pacifier to suck on during the day. She mostly plays with it, but occasionally she will suck on it. Next week we go to the feeding center in NJ. I spoke to the therapist on the phone a few times and she really seems to know what she is doing. She is the first one who has actually been willing to help and not to dismiss us. Both feeding clinics we went to were of no help. St. Josephs kept throwing different medications at us and chop just told us that there must be something medically wrong and we need to find it. This therapist we are seeing on Wednesday wanted to make sure there was nothing medically wrong before we see her and now that Brie has had her endoscopy she is willing to start therapy. I think that the reason she does not eat is that in the beginning she was in pain from the reflux and we were to persistent with her and forced her to eat. That made for a negative experience. Then when we got the reflux under control she was still uncomfortable because of the milk and continued to refuse. Now that she is comfortable it has been so long since she had to eat awake she does not know how. Hopefully with some help from feeding therapy we can get our little peanut eating better again and get her growing. Incidentally her weight yesterday was 15 lbs 1.5 oz so she is back up the where she was before she got sick.

Early intervention evaluation

Gabrielle had her evaluation today and the speech therapist thinks she has a problem with her suck and swallow. They think she does not use her tongue, but just her jaw. She seems to not have feeling on the back of her tongue and so she does not know when food is there and it causes her to choke. The therapist does not think it is behavioral, but that it is coordination thing. They think that it is something that with some work we can make better. We are going to get a therapist that comes to our home a few times per week to help.

With her other skills she is right in target for her age. She is sitting up, crawling and even pulling to a stand. Her speech is also a little delayed, but that goes along with the feeding issue and can all be worked on.

I am also waiting for a speech therapist in NJ to call me back about an evaluation. Hopefully we can see her next week and get things started.

Endoscopy

Well today Brie finally was able to get her endoscopy. Her cold is much better and she has been in good spirits. After a week on the Elecare we have not seen any improvements in her eating so we proceed with the test. She was given general anesthesia and they looked at her esophagus, stomach and small intestine with a camera. Everything looks normal. They also took some biopsies to look for infection, inflammation, milk protein allergy and celiac ds. Those tests will take about a week to come back. Hopefully they will show us something. If all is normal I am not sure what the next step is. Something has to change because we are barely getting 20 oz into her a day and she is no longer growing. We went to the pediatrician yesterday so they could check her prior to the procedure and in one month she has gained no weight. She was 14 lbs 10 oz last month and yesterday she was 14 lbs 12 oz, and that is with her just eating 3 oz in the car on the way to the doctor. So she actually has lost an oz. At her age weight gain does slow down to about a pound a month, but not gaining is not acceptable. The pediatrician yesterday said that normally he would have had us wait another week to have the test done, but with what is going on he felt it was best to proceed even with some residual cold symptoms. We will keep you all updated on her progress.

Well Gabrielle was not able to get her endoscopy yesterday. She started with a cough and wheezing on tuesday night. After a really rough night we talked to the GI doctor and the pediatrician and made some changes in Gabrielle's feeding. We changed her to an elemental amino acid formula that is suppose to be very easy to digest and has no milk protein in it. If she has a milk allergy this should help. She has tolerated it the last 2 days. It actually smells better then the nutramigen formula we were using. The GI also gave us another medication to help with gastic emptying. We are going to give the new formula a chance to work before trying it. Hopefully her feeding will improve and she will not need the endoscopy, but if she does we can do it any wednesday. I would like to see her completely healthy for a week before we proceed with anesthesia.

As for the cold, Brie is doing a little better today. Yesterday she was wheezing after only 2-3 hours with the breathing treatment. Today she is able to go 4 hours and is not coughing nearly as much. She has been in good spirits and is crawling everywhere. She loves to stand up and "walk" everywhere. She is able to pull herself up and stand in her crib and on her exasauser.

Well after a week of no vomiting on the formula, Gabrielle started it back again. At least once a day she will throw up a good portion of one of her bottles. She has taken a few oz awake which is a start, but it is not consistent. Mom and dad were really hoping she would be better so that she would not need the endoscopy. No luck. She is scheduled to have it done Wednesday, Dec 5th. Hopefully it will give us some answers so we can get Brie eating better.

On a positive note, Brie is making forward motion. It is more like an army crawl, but she is getting better at moving forward every day. Of course just in time for the christmas tree. Looks like I am going to have my hands full keeping her away!

Visit at Chop's feeding clinic

Well today we went to chop. After evaluations with the nurse practitioner, speech therapist, occupational therapist, and nutritionist they all agree that there is some medical reason why she is not eating. The think an endoscopy is the way to go. This is a test where they put Brie to sleep and look at her stomach with a camera. They can take biopsies to see if she has an allergy to milk or if there is any inflammation. After talking to the GI doctor on Monday she is scheduled for the test Dec 1st. We also switched her to a hypoallergenic formula. Since we have made the switch she has not vomited and seems pretty happy. I think the taste is quite different then breast milk, but she seems to be getting used to it. Yesterday for the first time in a week she actually took 24 oz. Prior to that we were averaging about 16 oz. I also weighed her last night and she was 14 lbs 10.5 oz so she is back where she was a week ago. Hopefully this new formula does the trick and we can get our little girl feeling better. We are going to progressively make it 24 calories per oz rather then 20 so hopefully that will help with weight gain.

Well after many weeks of slow weight gain, Gabrielle lost weight this week. She was 14 lbs 6.5 oz yesterday. Maybe the doctors will start listening now. Every doctor we see says she is gaining weight so she is doing okay. The last few days have been really bad. She has not been sucking on the bottle at all. She has also been vomiting at least once per day. The vomiting is an entire bottle at time. All day since Wednesday she has been gagging and trying to make herself vomit. It is so frustrating. Otherwise she seems well and is playing with her toys and has completely perfected sitting independently. She loves to sit and pull all of her toys out of the basket.

We did try to give her a new formula, alimentum at the GI doctors suggestion. She would only drink 2 oz at a time and that is when this gagging started. It smelled horrible so I can understand why she did not like it. We abandoned it after one day. On Wednesday we go to CHOP to their feeding clinic. Hopefully they will have some help for us. I am afraid if we keep going like this she is going to get a feeding tube.