What do you mean, your baby won't eat??

This blog is new to me, but I think it will help explain a little more about what is going on day to day at our house for our friends and family. Each day is not only a new challenge, but also a gift. While it may seem at times to be only struggles, much progress has been made and we are excited to see how our little one (and big ones) excel in the future.

Friday, September 2, 2011

Since I haven't done this in 6 months...

I thought I would update everyone on what has been going on with our family, since it's been six months since I have updated our blog.

I cannot believe my little one is almost two years old already. Wow, time really does fly! She is doing much better with her eating as far as texture aversions and vomiting goes. She no longer gags when she doesn't like the texture of a food, and seems to be much more open to trying new things. We have come a long way with her, so far, and are looking forward to the day when this is just a distant memory! She has overcome the issues of choking, aspirating, and vomiting. We are obviously very happy about this, because it was a huge stress for us. Very messy, as well as a health concern - we were constantly fretting about aspiration pneumonia. We would like to see her appetite increase. She eats very little amounts of food at a time and is extremely picky. We bombarded her with fatty junk foods, like I swore I never would, so that she would gain weight since she was so small, and because of this she now never wants to eat "real food." We continue to work with a Speech Pathologist that comes to our home once a week to help her with her eating and swallowing. Despite eating only tablespoons of food a day, she is growing and developing very well, so I am trying to relax about the issue. Trying is the operative word. I am a work in progress.

We had a great summer. My stepchildren stayed with us for the majority of the time and we enjoyed the quality time we got to spend with them. We went on a much too short vacation to Padre Island, which everyone enjoyed. The big kids love the ocean and playing in the waves, and the little one had a great time playing in the sand and chasing seagulls (or "Birds!" as she kept yelling). We stayed in a great condo directly on the beach, and cannot wait to return next year!

The older children played summer sports for the YMCA (soccer and volleyball) and the little one took her first swimming lessons. She can kick really well and move her arms, but hasn't quite mastered going in the direction she desires. Her daddy and I took her for a night swim at home last night and she had a great time. When I turned on the purple pool lights, she says "How amazing!" She is talking more and more each day and says things that are very funny, and some that are not so funny! The big kids are back in school and we are trying to get back to our normal routine.

I will post again soon, and promise not to wait six months!

Sunday, February 20, 2011

It's so nice that some things only come around once a year...

Story Photo
San Antonio Stock Show and Rodeo Today.... It was "Family Fun Day" - we took the family and it was fun, lol, but now I am TIRED and we are BROKE!

2 All You Can Ride Wrist Bands
4 Admission Tickets
1 Parking Pass
1 Small Diet Coke
1 Large Lemonade
1 Ribbon Potato Skewer
1 Bag of Cotton Candy
1 Snow Cone
1 Candy Apple
1 Funnel Cake
2 Small Cokes
1 Large Coke
1 Lemonade Refill
3 Midway Games for the baby since she was too short to ride...
3 Rounds of the hubby trying to break bottles with baseballs
$ 130 and a car full of tired, hot, cranky people!

Tuesday, February 15, 2011

An update for those who may be unaware...

I thought I would try to write a very short and sweet summary of our little one's journey so far, just to get everyone up to speed. I'm new to the blog thing, so bear with me.

First, let me say this.. I wondered if I would ever have a baby, due to polycystic ovarian syndrome. There was a time that I tried for a long while to become pregnant and it didn't work out. Due to some personal circumstances, I decided to put that on hold for a while. And one night, on a whim, I prayed as hard as I could, asking God to give me a baby and promising that I would do my very best to "train her in the way she should go" just as I was instructed. A couple short weeks later, I was pregnant. To say this little girl is a blessing to me, would be selling her short. She is my world and my everything. I am in love with her face and her sweet little hugs.

After a complicated pregnancy, she was born seven weeks early, with seemingly no health issues. About a week later, we discovered her heart murmur (which is not entirely uncommon), but when the hole didn't close it was diagnosed as a Grade IV Ventral Septal Defect, or VSD. She progressed wonderfully, and all of a sudden, at one month old, she stopped eating and was diagnosed as "failure to thrive." After a couple of days in the NICU, she was able to come home. After putting her on a couple of medications for her heart, she began to eat normally and gained a considerable amount of weight. Until, she started vomiting all of the time. Since she was on a special preemie diet with added calories to help her grow, it was decided by her Daddy and I, along with her doctors, that we should start reflux medications. This helped a little, although after a few weeks we would have to switch to a different medication when symptoms returned. By the time she was eleven months old, we had gone through all of the reflux meds - there was nothing left. She also had extreme difficulty transitioning from formula and purees to solid foods. This is when our pediatrician referred us to the gastroenterologist, who ordered an upper GI and a modified barium swallow (or swallow study). The tests revealed several episodes of reflux and that she was a "silent aspirator." We now thicken her formula with a thickening gel that makes it easier to control and swallow properly and she sees two speech therapists for swallowing therapy - one at a pediatric outpatient rehab, and one from the Easter Seals Early Childhood Intervention Program who comes to our home. After working with the therapists for a while, they determined that she has some sensory integration issues and texture aversions, so we have introduced Occupational Therapy as well. She was put on a different formula that is extremely calorie dense to make sure she receives optimal nutrition since she will not eat solid foods. She has done very well on her current formula, after trying many, and much of the vomiting has stopped. So we now know that part of the vomiting is from reflux and part was from a milk protein intolerance. There have recently been several episodes of vomiting blood that has been diagnosed as an unknown GI bleed at this time. The GI specialist is planning to perform an endoscopy on Thursday to get a more accurate indication of where the blood is coming from - possibly a peptic ulcer, or erosion of the esophagus from the reflux, or something different altogether. Time will tell. So, that brings us up to right now...

We have come a very long way with her. She has made remarkable progress. The cardiologists recently cleared her of any need for surgery. She has a great spirit and is always happy! With a lot of love and prayer we have overcome many issues so far.

My goals for the next 60 days are twofold:
1. Specifically diagnose GI bleed and make a treatment plan; possibly getting a second opinion.
2. Wean her to 1/2 the amount of high calorie formula and replace the other half with 1/4 soy milk and 1/4 solid foods.