Rae was doing SO well. She had gained almost 10 ounces in 2 weeks on Puramino. I thought we had found the answer: she was allergic to milk, including mine (apparently that's a thing). So I was dealing with my own interal mom-guilt that I was poisoning her that entire time I was nursing her, then she had another weight check.
And then she lost again.
Only about an ounce and a half, but considering her weight check was at the end of the day instead of the beginning, and she had just downed a 3 ounce bottle, it was probably more in all honesty.
Next weight check a week later she was up 2 ounces and hit 16 pounds finally. Which is great, but she was gaining 2 ounces a week when I was nursing her and they weren't happy with that then. So I didn't count this week as a huge victory weight wise.
Then Little S came down with something completely horrifying that made his eyes swell and his nose run like Niagra Falls. I just knew he was going to give it to Rae. And he did, which surprises me because he's really not all that great at sharing (unless it involves disgusting illnesses apparently).
If you don't have a medical background and your kid suddenly gets a 104 fever, you freak out. Now, usually I'd just give the kid tylenol and wait it out, but with all of Rae's issues we called it in. Since this of course happened on a weekend when I couldn't just go in to see the pediatrician, the on call doctor sent us up to Fairfax Hospital for a fun 2 hours in the hospital and some special $200 dose of tylenol (I may be exaggerating).
Her fever persisted until we got to our weight check Monday morning and found that she lost 7 ounces and is now at 15 pounds 10 ounces. In just a few days of being sick, almost all the weight she had gained in a month was gone.
I am absolutely devestated. I know that this would happen with any kid, any kid who gets sick and won't eat is going to lose weight. But why my kid?! Why now? Would it even make a difference if she hadn't gotten sick? Probably not. Even in the past month on Puramino, her GI issues are still awful. Most kids on Puramino have the opposite problem as Rae. This formula should be the easiest thing for her to digest, but she still can't.
Oh, and apparently I misheard my GI. Her red blood count is low, not high, meaning 1 of 2 things. Either, a) they've taken so much blood from all her bloodwork that all her counts are low since she doesn't have enough blood, or b) she has internal bleeding in her gut somewhere (as communicated to me by Rae's pediatrician).
And because she can't just have a few things wrong with her, now Rae is walking weird. She won't stand up flat on her feet, she stands with her ankle rolled out and walks on the outside of her foot (I say walk, but I mean walking assisted, while she holds my hands) or on her tip toes. And the moment my pediatrican saw that she wanted to get her in with Neurology ASAP.
Have you ever had a feeling that something was really, really wrong? Like the gut wrenching, filled with worry and paralzing anxiety feeling that consumes every second of everyday with your worst fears? That's been defining me every single day for over 3 months now. Every. Single. Day.
Every. Single. Minute.
I don't know what's wrong with my baby girl.
And I don't know how to help her. What if I can't help her? What if after all the testing is done, there's nothing we can do? What if it's my fault? What if even after the blood work, echos, ekg, elimination diet, Puramino, Duocal, and appointment after appointment and scheduling a barium enema, colonoscopy, considering a feeding tube, seeing a geneticist and a neurologist and none if it helps? Or what if I've passed down some genetic disorder and made her this way? I can't deal with the mom guilt anymore. I can't help feeling like I'm not doing enough for her, but what else can I possibly do? So far, I have 11 appointments in my calendar for this month. ELEVEN.
When we first found out Rae was failure to thrive, a woman told me "Do not let this make you lose this precious time with Rae" and I am. I am totally consumed with every movement she makes and every sneeze and every bottle and writing down every thing she eats, every dirty diaper she has and everything she does that I just can't really enjoy her and how wonderful she is.
It breaks my heart because she deserves more.
I know that God's in this. He has some plan in this somewhere, but if I'm being honest, I can't see that right now. I'm just blindly trusting that in His time, this will turn out okay.
M
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