I'm not okay. I'm not okay. I can't smile this away. I can't be strong when every muscle in me feels weak. Don't get me wrong, I will be. I'm a mom. I have to be. But in this moment, all by myself with the laptop, closed off in our room, I will be weak and that's okay.
This morning we drove our hour and a half drive to Cleveland to see a pediatric gastroenterology specialist to evaluate Riley. After months of pushing this visit off and doing my absolute best to plump up my baby on my own, we succumbed to the inevitable. Our name was finally called, and as we undressed her for her weight check that evil hope resurfaced. She felt heavier, right? Her face looked rounder, right? "No, you fool!" The scale mocked me. Riley weighs 14.8 lbs. She lost 5oz in two weeks. Nothing new there.
The GI specialist came in a little while later and she didn't waste any time in discussing feeding tubes. The MIC-KEY button is our best option for Riley. She started crawling a couple weeks ago and since then, there's been no stopping her. She's into everything! Having the tubes stick out of her nose would just be asking for trouble. She had some more blood work today just to make sure there wouldn't be any other issues affecting her weight gain. We have a couple follow up visits before the surgery. We are putting it off until the end of August. Maybe the beginning of September. It's not a big emergency and we have a lot planned for August. It would be best if we were home and settled before she gets the button. You never know what might happen with something new like this.
I should say that both Galen and I went in there pretty determined to hear them out, but not to budge and give in to the feeding tubes. But after the specialist showed us Riley's growth chart and how now not only was her weight being affected, but also her height and head circumference, we felt their alarm too. Galen and I asked one question right after the other, and although it will be a challenge and heart wrenching, we want what's best for our Riley. The Dr also stressed how important it is for children with neuro issues to have the best nutrition in the first two years of life. Riley hasn't been getting that. On average she eats 15 to 20 oz in a 24 hr period and that's just not enough for a growing, now crawling (almost walking!) baby.
We will be seeing Riley's cardiologist this month on the 28th to have a follow up on the three tumors on her heart. While there, we will also be asking his clearance for this procedure considering she will be put under anesthesia. Riley will be getting her weight checked that same day.
I'd like to leave you with a few happy reports. Let's see. Well, I'm not sure this is a good thing but it's sweet for me. Riley has turned into this big mama's girl! Now that she crawls, she follows me everywhere! When I took a bath tonight, she sat outside the door! She is still doing great at her physical therapy each week. Cathy (PT) is so impressed. Riley is standing near the couch and it looks like walking is her main goal right now! I will admit, she has accumulated far too many bumps and bruises for my liking with all this "trial and error" moving! But how else is she to learn and she wasn't meant to be in a plastic bubble! She's on the verge of talking, but nothing I can really call a word yet!
I forgot to mention that after the GI specialist, we were seen by a dietitian to help us until she gets her tube. She gave us some great ideas to fatten her up including ice cream, pudding, cheese wiz on her puffs or frosting, extra butter in her veggies, extra sugar in her fruits, fruit pie filling, and avocados! She also increased her formula concentration a tad.
Alright, major headache from crying, so I need to drink some water and get some sleep. I don't want to sound needy, but I could really use some more love and support through all this. Those closest to me know how badly I didn't want this. But I know I did my best and now we have to accept the best help they can give her to prevent other, more major issues. I can't help but feel that sometimes people like to hear the gory details, but once they get them, they're off sharing them instead of being there till the next post. Again, I'm strong because I need to be and I know for the most part I look like I've got it together but there are plenty of days where I'm overwhelmed all alone. Many of you are far away and I know you care. Your love and prayers ARE priceless. Again, I'm not trying to sound needy, I just know it's going to get harder from here on out and I would rather bare my heart than wallow in depression all alone. As always, much love from Galen, Riley and I!
