I've been dragging my feet on writing this post and now I feel guilty for how long it's been since Gemma's last swallow study. So, an update on her situation.
About 3 weeks ago, we got a letter from a company that manufactures the thickener we use in her bottles. They were investigating a possible correlation between the thickener and Necrotizing Enterocolits (basically, a really bad bowel disease) in babies born before 37 weeks. Gemma was born at 39.5 weeks so she didn't fit the concern group but I was still a bit unsettled about piling all this stuff in to her after there were some questions about its safety in any people group. So, I contacted our speech clinician to schedule another swallow study- letting her know that I was concerned about continuing use of the thickener and was hoping that Gemma would pass the study. While we waited for our appointment, the thickener was recalled, the FDA contacted us to make sure that the manufacturer had given us adequate information and we stopped using it in Gemma's bottles. After talking with our ped, I decided to try thin liquids in Gemma's bottles. I had slowly been thinning her bottles but decided to just give her thin liquids for a week and a half before the swallow study. In theory, if she was still aspirating, we would know because she would get some sort of respiratory infection. So, we started thin liquids up to 3 times a day and she seemed just fine. I put a slower flow nipple on the bottle and she guzzled them down beautifully. Now, by this I couldn't assume she was healed/cured/over the aspiration because she was a silent aspirator to begin with, meaning she never cleared her lungs when she got liquids in them. So, in theory, she might look like she's doing fine but be taking liquids in to her lungs. I just didn't know.
I had great hope as we went to the swallow study and for the first time, I fed her the Barium. I usually like the nurse to do it so that they can get the best possible results but the clinician said it would be best for her to watch and me to feed. That way she could keep an eye on her swallow on the xray and not worry about the feeding. She took the Barium just fine, tired and starving. She didn't aspirate but the liquids went into her airway. The speech clinician said it was shallow to moderate penetration- definitely not down to her vocal cords, but deep enough that she said, 84% of kids who take liquids into their airway that far, will aspirate. So, Gemma did not pass the study but she did show improvement from the last time where she had liquids draining down to her vocal cords before she would push them into her esophagus. So, the recommendation was to continue thickening with oatmeal or rice cereal and see an ENT. The ENT will scope her throat, airway etc and will put her under sedation for this. We have seen a GI for her reflux and they said that if the ENT scoped her, they wanted to do an endoscopy (I believe) at the same time to check for reflux complications and look at the sphincter at the top of her stomach. I am really going to be adamant that they do it at the same time because I don't want her put out twice. It might take some coordination but hopefully people will be on board.
Immediately, I was very disappointed, frustrated, and discouraged. I felt defeated and sad. I had really thought that she would pass... no, I had just deeply hoped that she would pass. It's hard to play this waiting game for someone to say, "she's just fine, normal, no concerns" or "this is why she is aspirating, and this is how we can treat it, therapies we can do etc". It's the not knowing that's hard.
I'm trying not to get wrapped up in discouragement. Today at church, we sang "Great is your Faithfulness" and I looked down at Gemma and realized that I was holding tangible proof of God's faithfulness. When we lost our first baby, I begged for this child and God faithfully provided. Here she is! Here she is! She was asleep while we sang (she is lulled and energized by music). I clutched her tightly, tears burned my eyes and I cried in gratitude for God's immense faithfulness. All around me, people are being blessed with children that they have waited for, prayed for, struggled for, and now await patiently. Adoption, IVF, natural conception- however it's happening, God's faithfulness knows no bounds. As a dear friend joins the awful club of miscarriage, I can only tell her to clutch on to that promise of faithfulness. God is good- the ultimate Provider- the healer of all hurts, and the restorer of our souls. I know what it feels like to be there and oh, how I wish you didn't know this pain but great, yes, Great is His Faithfulness. Cling to that. How I wish I always had that song playing in my head.
Bottom line is, she's healthy. She's perfect! She's doing well and we are not on house arrest anymore. I can't keep her in a bubble and there's too much to explore and too much living to do! Since school has been out, Gemma has been in her first swimming pool, gone shopping, and played with friends. I am really enjoying this age. She makes all sorts of silly noises, says Hi Dada (I don't know if she knows what she's saying but it sure is cute) and DADADADADADA! I'm still waiting for Mama. :) She crawls everywhere and is starting to try to pull herself up. She cracks me up and I'm head over heels in love with her.
Thank you for your prayers- please keep them coming. We'll continue to seek out answers and best options for our girl. In the meantime, I'm pledging to love the living daylights out of her this summer... watch for us on our many adventures... Pictures to come!
Here are just a couple from my phone. She's playing with the dog kennel door in one and crawling in the other.