Just so everyone can put their minds at ease, Brynn's MRI results came back normal. Which is good, but it also begs the question--what else could be causing Brynn's delays?
We know she has pretty bad reflux, which I haven't mentioned in previous posts because so many babies do it's almost not worth calling it to anyone's attention. She actually also has something called Sandifer's Reflux, which is her way of coping with the baby version of heartburn. However, the pain from reflux may or may not be the reason she's not eating. We'll try a little Zantac just to see. Although Zantac isn't necessarily helpful for all (or even most) babies, it's nice to feel like we're doing all we can do.
We've also switched her eating schedule from every 3 hours to anytime between 3-4 hours. This way, we're hoping she'll actually have a chance to get hungry and be motivated to eat. If/when she does, it's imperitave that I be there to feed her. So that means instead of being able to go to the hospital for a morning and evening scheduled feeding, and getting all sorts of other things done in between, I will now be camping out in my little curtained room from about 6 AM to 8 PM every day. I suppose this will be a good time to do some reading . . .
Lucky for me, the Neonatologist I have for the next two weeks is not opposed to Brynn going home on an NG tube. She says before she wants her going home, though, she'd much prefer that she at least be making some progress forward on her oral feeds. Given that she has made zero progress on her eating for over a month now, that doesn't give me much hope we'll be going home in the immediate future.
She has done really well with spells, however. So now that she's keeping her blood oxygen levels up, when she does decide to improve a tiny bit in her eating, it'll mean we can immediately go home.
Well, tomorrow is a new day . . .
We've also switched her eating schedule from every 3 hours to anytime between 3-4 hours. This way, we're hoping she'll actually have a chance to get hungry and be motivated to eat. If/when she does, it's imperitave that I be there to feed her. So that means instead of being able to go to the hospital for a morning and evening scheduled feeding, and getting all sorts of other things done in between, I will now be camping out in my little curtained room from about 6 AM to 8 PM every day. I suppose this will be a good time to do some reading . . .
Lucky for me, the Neonatologist I have for the next two weeks is not opposed to Brynn going home on an NG tube. She says before she wants her going home, though, she'd much prefer that she at least be making some progress forward on her oral feeds. Given that she has made zero progress on her eating for over a month now, that doesn't give me much hope we'll be going home in the immediate future.
She has done really well with spells, however. So now that she's keeping her blood oxygen levels up, when she does decide to improve a tiny bit in her eating, it'll mean we can immediately go home.
Well, tomorrow is a new day . . .
2 comments:
What a test of patience, I'm always so very impressed with you Natalie, and we're keeping your family in our prayers, and wish for her progress to continue. Brynn is such an adorable little girl and I think she looks very much like her Mommy!
Hello Natalie,
We don't know each other, but I came across your blog on the blog of someone in my ward. As I was reading your story, I couldn't help but feel your pain. I am a mother of 2 preemie boys, both born because of PROM. (We have a March for Babies website if you want to know more about our story. The video isn't new for this year yet...anyway, it's www.marchforbabies.org/millsmiraclemunchkins). Your story really touched me and we're rooting for you and Brynn to make it home soon. I know how hard it is to wait for everything to come into play before you can leave. I know how horrible it is to lose the dream of a perfect pregnancy. It's okay to grieve the loss of that. I still am...3 years after the 1st and 1 year after the 2nd. I know about the pumping...oh the pumping! I know how hard it is to come home without your baby every night. I think I cried every night when I left. Waiting for them to learn to eat can be so hard. I want you to know you're not alone. You seem incredibly strong and are doing great at staying positive. No easy task in your situation. Keep taking advantage of that priesthood. I know it seemed to work wonders with our boys.
I wanted to share a website with you that has helped me. It is through the March of Dimes and is a network of women who have been through similar situations (and worse) that we have. The first time I found the website, I cried because things people had written summed up exactly how I felt (www.shareyourstory.org). I hope this wasn't too weird to do. I just wanted you to know you're not the only one who's been there in the "trenches". Sometimes that's how I felt (sometimes still do), especially after coming home with my boys. Anyway, keep taking great care of that beautiful girl and know that our thoughts and prayers are with you and your family.
Jenalyn
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