Endoscopy Results

The GI doc called today with the news that the biopsy results were normal. There are no signs of damage or allergies. This of course is good news, but puts us back to not having any clue what is wrong. More to come after we see her new pediatrician on the 5th...

Riley's endoscopy

Riley had her upper endoscopy with biopsy this morning. She did great. She had to get an IV and general anesthesia, but the procedure was only about 15 minutes long. We were home by 10:45am and she is eating, drinking, smiling and watching Dora the Explorer. The doctor saw no abnormalities during the procedure, but the lab results on the biopsy will take a few days. She did weigh in under 18 lbs, which means she lost some weight again. That's not great news, but we weren't surprised since she has been a little sick for the past week or two. (That makes her cough, gag, vomit more frequently)

Scrunch

Riley makes the funniest face when she needs her nose wiped. When I say, "Do you need a kleenex?" She scrunches up her nose in preparation.

She gained 8 ounces!

Half of a pound is a big deal around here. Yesterday, Riley weighed in at 18 pounds 5.5 ounces. It felt so good to see it! I was not optimistic on our way in as she has still been throwing up. We also scheduled her endoscopy for Dec. 22nd. She will go in the morning and the whole procedure should only take about 15 minutes. I feel calm about the whole thing now, but come that Monday morning and I think I will be a stressed mess of a mommy. Does that sentence make sense?
She will be put under general anesthesia and that makes me a bit nervous as well. Our insurance will be changing January 1st so we thought we might as well pay only 20$ at Kaiser to have the procedure done. We will start with a fabulous pediatrician (so I have heard) on Jan 2nd. Jaron has already consulted with him a few times over the phone and he has been great and given us so much information. He is not taking new patients, but immediately said he would take her. We feel very good about the decision.
Overall, Riley seems to be doing better. Today is day #2 with no throw up, which is always so nice for me. :) Se did have fall into the brick fireplace on Wednesday and suffered a fat lip and bloody mouth. I mean, really, can I get a break???
I am always in awe that she is ALWAYS happy. Her smile and goofy faces always keep us laughing and when I think of how tired, irritated, and frustrated I am with the whole situation I look at her beautiful sparkling face and realize if she can have all this going in inside of her and be so joyful then I should be just as joyful. She really has something about her that draws you to her. So many people have told us this. God has given us a precious gift in our Riley Elizabeth.

Walking...finally!

Sorry it is sideways. I forgot I cannot take video this way.

1 ounce

Back to the doctor today and the number on the scale was 17 lbs 13 oz, a weight gain of 1 ounce. Riley is in the 1st percentile. I should be happy for a weight gain, but it really is not enough. Her meds do seem to be doing their job, so we will continue this regimen for another 2 weeks in hopes of a greater weight gain. If we do not see it on the scale, our next step is an endoscopy. I have stopped breastfeeding her, which has seemed to cause an improvement in her so maybe she was allergic to me.

Update

We took Riley to se the GI doctor again today for a weight check and to discuss her meds. We felt armed with information and questions after consulting with another doctor outside of Kaiser (thank you, Steve!!!). Unfortunately, Riley's weight has dropped further, 17 pounds 12 oz, her exact weight at 6 months old. (she is now 13 1/2 months) After much discussion we are down to a few options. We are starting her on 2 meds today. One is prevacid, an acid blocker which will help protect her esophagus from getting damaged by the stomach acid. The other, Reglan, is a med to help move food through her stomach at a faster rate so that hopefully if she does throw up, the food has already moved through and into the intestines.We are also mixing a calorie supplement into her food. We will try this for 2 weeks then return for another weight check.
At that point if the reglan is not working there is another med we can try for 2 more weeks. After 1 month if things have not improved she will have a scope to biopsy her intestines to check for allergies or other conditions that could not be picked up in a blood test.
These are our last options before a feeding tube would be necessary. Please pray for weight gain. Riley is definitely not getting the calories she needs and it is very noticeable in her daily activites. Please also pray for Jaron and I to be strong advocates for Riley.
Through this I have felt enormous peace that can only come from Jesus. I know He loves this little girl and we will continue to trust in him for her care.

The beginning of walking

Riley has slowly been working toward further independence as she has started to walk. She is very good at cruising and in the last few days has started taking more and more steps on her own. She has done 5-6 at a time, but is still pretty lazy. :) I am ready for this phase of development and ready to use less stain remover on the knees of her pants.

Rib Eater

Diagnosis

The results of Riley's GI test came back today and showed severe reflux. Her reflux is significant and the acid refluxes from stomach to the mid-thoracic area causing esophagitis. The results of the GI test gave us enough information that we will not have to do the PH probe test tomorrow!!! Now that we know she has GERD, we need to keep her on pepcid for 1 month and if she is improving, we will continue with that med. If it does not seem to be alleviating the acid reflux, we will need to put her on a stronger med.

I feel so relieved at finally knowing what has been giving her so much discomfort for the past few months, that it is treatable, and that she will eventually outgrow it.

Thank you for all your prayers, loving thoughts, comments, phone calls, etc.. We are so grateful to have amazing family and friends.

GI Test

Horrible.
That about sums it up.
She had to be strapped down and fed contrast through a syringe for about 45 minutes, crying the entire time.
The GI doc said she thinks she got all she needed, but did not give any information out today. Hopefully I will know more when we see her doctor on Thursday for the PH Probe.
As a mother, it was probably the hardest thing I have had to do.

Another Test

Riley is now scheduled for her upper GI test which will be on Tuesday. We will take her in at 9 am and she will have to drink yummy contrast so they can xray her insides. I'm sure it will be a hard day. It better be worth it.

Testing

We took Riley in today to see the GI specialist. After reviewing her history, we were given a few ideas on what may be going on, but no real answers. We started off by doing many blood tests and stool samples. Since her stool was positive for blood last time we are re-testing and if it is positive again, she will have to have an upper and lower probe test to determine where the blood is coming from. We also scheduled a PH test in which a tube is placed down her nose and throat and left there for 24 hours. She comes home for those 24 hours and we have to constantly make sure she does not pull the tube out. Sounds like fun. We then take her back the next morning and they download all of the information from the machine to determine if she has reflux. This test will be next Thursday. We are also in the process of setting up her upper GI test in which she will drink contrast and they will xray to see if there are any abnormalities.

She is being testing for absorption issues as well as structural issues so hopefully we are on our way to some real answers.

She is such a trooper and has remained pretty happy throughout this whole process so we are very thankful for that. She also continues to be super stubborn especially when it comes to walking. She has taken a few steps, but knows she can get where she wants to go faster if she simply crawls. She can say mama and doggie, but not much else. She loves to tickle everyone, climb on everything, and nods her head yes when you ask if she wants something. She continues to thrive developmentally, but our peanut just may not quite make the basketball team like we originally thought!

Sisters

Riley learned how to push her big sis down the slide. The pic below is her reaction after. :)

I think we have a winner

We have finished our 4th day of being throw-up free! Hopefully the infection has run its course and Riley will begin to fatten up. She will be eating a good amount of cake and sherbert this week since we have a few birthday celebrations for the little peanut. Here are a few pics from her pre-birthday celebration with Grams and Papa.

Blood Test Results

We received all of Riley's blood test results today and most everything was within the normal range. Her allergy test (IGE) was normal, which means no allergy. So why has the throw up stopped? The white blood cell test results were not normal. Her lymphocyte count was very high, 90%. The normal range is 20-70%. Her neutrophil count was 5%. Normal range is 16-60%. Of course when I read this I started thinking of leukemia, but I was trying to not do any research or thinking until I talked with the doctor. When she called, she said these results make her think Riley has some sort of virus. Dairy products can definitely irritate the body further so maybe that is why taking the dairy out has made a difference? I really do not know. At this point, she has not thrown up for 2 days! Yahoo! We are going to keep dairy out for the next few weeks and keep an eye on her and if everything looks good and she gains weight, I guess there is nothing more to research. If she worsens, then we will re-order the upper GI test (we can skip this for now!) and talk again.

I still feel like I am constantly watching her and am still a very over-protective mommy, but I did feel myself relax a bit today. She even had some coughing episodes that produced nothing so I am hopeful we are closer to the end of this nightmare.

Thank you for all your thoughts and prayers. We are thankful for wonderful family and friends!

A throw-up free day and a dairy-free life

After a terrible day for Riley yesterday, I felt like I really needed to be a bit more pro-active in discovering why she is constantly throwing up everything she puts in her little body. We saw another pediatrician today, her ped is out of town, and talked about what to do. Her weight had dropped 2 ounces from one week ago, which is now even more of a cause for concern. She decided that we should do blood work, order an upper GI test, and after consulting with a GI specialist, decided we should start by taking dairy out of not only Riley's diet, but mine as well since I am still breastfeeding. The GI specialist thought it sounded like a food allergy so we are on the road to discovering what that allergy might be. After a full day without dairy we have had a day without throwing up! I cannot remember when the last throw-up free day was, but it is quite lovely to not have that smell hovering around. I am continuing my food journal and waiting on the blood test results, which should show if there is an allergy present. We will keep you posted.

Should I just hook her up to an I.V. full of cream???

I took Riley in for her 1 year appointment today. I have been a bit concerned about her weight for a few months now. She is not a picky eater and eats well, but she chokes and coughs during meals and 3 out of 4 times she throws up her entire meal. In March, she was in the 70th percentile for weight. In June, she was in the 45th, and today she fell down into the 14th. She has gained 1 pound in 3 months. I feel like I am constantly thinking about her intake of calories and offer her a ton of food. This is SO unlike Avery who has always been in the 95th percentile. (Riley weighs what Avery did at 6 1/2 months!) This has been so mentally exhausting for me. I do feel that because she is so happy all the time, sleeps through the night, and nurses well nothing too serious can be wrong. Her pediatrician is not all that concerned, but wants another weight check in a month. There is a possibility of reflux, which can be helped with medication so I need to do some reading and watch her for the next week or so. We will keep you updated. Here are some pics of the "starved" peanut. :)

This is a pic I took right after I cleaned up her throw up. Pizza does not smell nice coming back up. I already have a hard time with the smell of pizza since it was a food that grossed me out when I was pregnant. Obviously, it does not bother her that much!

I can't stand it!

I thought of this pic by my friend Mel when I was making this playdough today. Doesn't it look beautiful? It was so hard for me to give it over to Avery though. I am a bit obsessive compulsive and the thought of this beautiful playdough becoming one big clump of yuck unnerved me a little. No, I am not nearly as bad as Kate (from John and Kate plus 8) and I have actually gotten better now that I have kids. I still love the smell of fresh laundry, the dishwasher running, vaccuum lines on the carpet, and a clean playroom every night, but I have learned how to let things go and relax. It is still hard for me to sit still, but I have come to truly enjoy the chaos my lively and beautiful children bring to my life.

10 months

Self-Feeding at 9 months