Gwen went in for an Upper GI a few weeks ago. It broke my heart to see someone so small wear a hospital gown and my heart breaks for all of the Mommas out there who see their little ones living in hospital gowns.
Still sporting her bow of course
They were looking for possibly an obstruction anywhere along her gastrointestinal tract that may be the reason for her GERD (Gastroesophageal Reflux Disease) or possibly a blockage. They didn't find anything of that nature but they did find that she has significantly slowed emptying from her stomach to her intestines. Although this test isn't designed to diagnose this - the doctors seemed concerned about it.
When we returned to the specialists office to discuss the results, we got bad news. The drugs previously used in cases of slowed emptying have been taken off the market due to negative side effects. The new course of action would be a prolonged course of azithromycin. However, it is not safe for patients who have a family medical history of heart arrhythmia. Unfortunately for Gwen, that is very prevalent in her family history. Stefan was diagnosed with Wolff Parkinson White Syndrome, a type of SVT (Supraventricular Tachycardia). And her grandpa also suffers from heart arrhythmia. So, the specialist suggested we rule out heart arrhythmia in Gwen and then maybe she could be deemed a candidate for the azithromycin.
Now, even though the upper GI turned back some results. They still are not the reason she is "failing to thrive".
We took Gwen back to her pediatrician on Friday for a weigh-in. They put Gwen on the scale and my heart sunk when I saw that in 4 weeks not only had she not gained an ounce but she had in fact lost weight. Despite eating more than any other 8 month old on the planet - she had lost 200 grams. Half a pound. It may not seem like much but on an emaciated infant - it is significant.
After that, the tests began. Gwen's pediatrician ordered several blood tests, an EKG and urine samples. Since Gwen only weighs 5 kg they can only take 5 cc's of blood every couple of days. Gwen also has very tiny superficial veins which are very hard to draw blood from. They had to poke her twice the first day and they fished around in her arm for what seemed like hours and they were only able to get 4 cc's. She was exhausted and very upset. I was having a hard time watching them hold her down and listening to her scream. Though I'm trying to remind myself to be strong for Gwen.
Being a good sport
It'll be a long couple weeks trying to get all this blood drawn for tests, but we are anxious to start ruling out serious conditions and hopefully find the reason our sweet baby is staying so tiny. I can't help but worry about her. I don't know how to stop scary thoughts from entering my mind but deep down I know that it's all in the Lord's hands and he will take care of all of us. Right now I am just snuggling her extra tight and even breaking the rules and rocking her to sleep sometimes. We're praying that whatever they find can be easily treated/managed and if not we pray for the strength to handle any diagnosis we may receive.
