Today was heartbreaking...sitting in the NICU (again) holding Kayla as she cried in pain from the reflux was the hardest thing I've had to do. It took everything I had not to cry with her. They have run a few tests this weekend, which confirm that she does in fact have reflux (the tests at the other hospital weren't able to conclude this, but they say timing has a lot to do with it). She also has some problems with her suck/swallow coordination. They ran an MRI this morning to make sure she didn't have any damage to her brain from her previous bleeds and that came back normal which was reassuring. So what to do with the reflux. She is unable to completely finish a bottle right now without writhing and screaming in pain. They are trying various combinations of medications and formulas with thickener and extra calories to help her. I'm not sure what the next steps are though...I think one of them may be surgery to put a g-tube directly into her belly to eat...this won't fix the reflux, but it will ensure that she gets her nutrition and not burn extra calories fighting with the bottle. Hopefully they can get the medications to work to control the reflux pains. Another option is to send her home with an NG tube, but she has mastered the art of pulling that out...something she did three times today alone, so I don't think they will go this route. I have a feeling we are in for a long road with our baby...they hope that she will grow out of this in 6 months to a year. I pray they are right.
Kamryn also is having some problems with her digestion. She's unable to poop on her own without some intervention on our part (either suppository or now we are giving her milk of magnesia). She's very uncomfortable most of the time and cries out a lot in pain from gas/constipation. She only sleeps in spurts of about an hour or two at most. I think we'll need to keep a night nanny for a little while till she can grow out of it...
Other than that, things are going well...Kiko continues to be wonderful and watch Kamryn while I visit Kayla (and do the laundry and the lawn and clean). I'm very lucky to have him as a husband!
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2 comments:
Kristen,
I want to first tell you how sorry I am that you are going through this, however at the same time congrats on your baby girls, with all you have been through, It's got to be soon that you get a break!
I got your blog from the forum and recently was diagnosised with APS I would love to ask you a few questions.
I know right now you are really busy taking care of your little ones, as you should be, but when you get a little bit of time will you please e-mail me, your support would be greatly appreciated.
Dre
I'll send you my e-mail on the forum.... I assume that you're still a member?
Hi Kristen,
Just wanted to wish you the best of luck with the surgery. My son had a g-tube from 8 months to 3 years, and it was the BEST decision we ever made. He hated his NG tube and was always pulling it out. No fun to reinsert that at home with him screaming and crying, plus worrying we had it in the lungs instead of the stomach. He was so much happier with his g-tube, and used to play with it while watching his little videos. I think once it is done, it will be a huge relief for you all. My prayers continue to be with you!
Your Passion Sister,
Jackie JacksonDaley
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