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.

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.

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