Archive for the ‘ NICU/Prematurity issues ’ Category

UGH!! x 10000

Friday, May 15th, 2009

Caroline went for a weight check yesterday, which revealed that she only gained 5 oz in the past month. UGH. That puts her somewhere awfully far below her growth curve. I literally felt sick when I saw the scale. Her pediatrician was concerned about this, to which I say, hello?!? Did I not tell you that there was a problem like a month ago??

He asked me to switch to pumping so that I can add cereal to her bottles to thicken them (so that they’ll stay down better), and to start waking her every 3-4 hours at night to feed her. UGH. She usually sleeps at least 10 hours straight at night.

He sent us to the hospital to get bloodwork done, which thankfully turned out mostly normal. He also called the GI specialist to get us in right away, and warned me that they might ask me to wean her completely to put her on a very expensive hypoallergenic formula (UGH). He suspected that there might be something wrong in addition to her reflux (UGH UGH UGH).

Honestly, hearing him say “wean her completely” was like a punch to the gut. I hadn’t realized how attached I’d gotten to nursing her, now that it’s become so easy for us. (In fact, I cried in front of him after he said it. UGH.) The feeling reminded me vaguely of her birth day, when I went to the NICU and the nurses told me I couldn’t hold her.

So today we visited the GI, after many frustrating hours of trying to pump enough to feed her while she howled in her bouncy seat, and trying to bottlefeed her while she swatted the bottle aside and lunged at my boob for a mouthful of shirt. The doctor and nutritionist thought it was just severe reflux, but recommended we put formula powder and cereal in my breastmilk to increase its caloric value and keep waking her to feed, at least until she reaches a more normal weight.

Side note: by “we”, I mean “me”, because Tyler is gone yet again on a dinosaur job. He always happens to be gone when Caroline’s reflux blows up in my face. Sigh. I don’t know which one of them is planning this. Maybe they are conspiring against me.

Anyway. I am relieved that nothing other than the reflux is probably wrong. But I am sad about two things:

  1. Losing my full night of sleep. I’m worried that even once she gets up to a good weight, she will still want to wake several times a night to eat.
  2. I will definitely have to supplement with formula, because there’s no way I can pump enough for her to eat 4 oz every 3 hours around the clock.

I know that’s whiny. I know I have to do what’s best for her. But her reflux is so difficult to deal with all day alone that I need the sleep at night. And I worked so hard to exclusively breastfeed. It’s so hard to do that for a NICU baby who was unable to nurse and had tons of bottles right after birth. I beat myself into the ground for over six weeks to be able to do that for her. And after all that, she still isn’t growing, so I’m not allowed to do that anymore. I know that supplementing is going to damage my supply, probably to the point where I won’t ever be able to exclusively breastfeed her again.

And, I just don’t want to give her formula. I hope that’s not offensive to those who formula-feed. But I made that decision early on and stuck to it through a whole lot of obstacles, and I really believe in the benefits of breastfeeding, especially for a preemie who is disadvantaged from the start. I was so excited the night I finally pumped enough to replace all of her formula that I went back to bed after feeding her and couldn’t sleep.

So, life isn’t fair. We all know that. I don’t want to give her formula, but then again I didn’t want her to be born prematurely, and I didn’t want her to spend weeks in the NICU, and if you want to be really technical and cruel about it, I didn’t initially want to have a baby at all. Things just happen and it’s not always fair, and you just have to get over the parts you don’t like as best you can.

So that’s the latest. If anyone has tips on how to increase milk supply aside from the obvious fenugreek, lots of water, and frequent pumping, please post in comments below.

UGH.

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Flashback

Tuesday, May 5th, 2009

3 months ago today… before all the tubes and wires…

This is one of only two pictures I have of me holding her on her birth day. I didn’t know my dad had taken it until he showed it to me just last week… it makes me tear up every time I look at it.

I was so lucky to get to hold her right after she was born, even for just a few minutes. So many NICU mommies don’t get that chance. I’ll always be grateful that I did.

Happy 3 month birthday, Caroline!

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Hitting the Panic Button

Wednesday, April 29th, 2009

So, I don’t know if you’ve heard, but there’s this swine flu thing going around.

Are you sick of hearing about it yet?? I know I am. It is not helping that I have this paranoid freakness left over from when Caroline was in the NICU. I’m absolutely terrified of her getting sick, going back to the hospital, or worst of all, losing her. Really, I couldn’t care less if I get this stupid pig flu, except that then I wouldn’t be able to care for her. This is a terrible thing about being a mom, I am discovering. Reading the news and hearing about it nonstop just gives me this sick feeling in my stomach and makes me feel all shaky, thinking about something like that happening to my baby.

Tyler thinks I’m totally nuts. (Chances are, you do too, at this point… but hey, it’s my blog and I’ll freak out if I want to!) Our phone conversation from this morning, after I read the news about the toddler in Texas who died:

Me: We’re not taking Caroline anywhere unnecessary until this whole thing is over with.
Tyler: Okay, fine, but I think you’re going a little overboard here.
Me: I don’t care, I’d rather be safe than sorry.
Tyler: Should I also pick up a shovel on my way home, so we can dig ourselves a bunker?
Me: Yes. But wear a mask at the shovel store.

Clearly, I need to step away from the CNN. It’s scary, though, you have to admit! I definitely learned way too much in college about flu pandemics and how we’re overdue for one. I had this one particular evolution professor who was obsessed with the idea. There are also three suspected cases in CT as of right now (all people who just traveled to Mexico), one right down the road from us. Still, I almost feel ashamed posting about it, because there’s already enough propaganda about this flu out there on the internet.

And on that note, I will quit writing about it and try to stop obsessing! Luckily I have America’s Next Top Model to distract me! Love this show…

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Whose Leg Do I Have to Hump to Get a Referral Around Here?

Tuesday, April 21st, 2009

I took Caroline in to the pediatrician yesterday to discuss her recent flare-up of le reflux. It did not go especially well. First I put her on the scale and discovered that she had lost three ounces since Friday. (In case you were unclear on this, the only person who’s supposed to be losing weight around here is me.) I silently panicked until the doctor came in, but when I pointed it out to him, he said “oh, well, that isn’t that much weight.” I ignored this nonsense and told him about the airway issues she’s been having. His response, in a nutshell: “Sometimes that happens with kids who have reflux.”

I’ll take “Bitches I’d Like to Slap” for 800, Alex.

Seriously, what in the hell? I tell you that my two-month-old, who has previously been hospitalized in intensive care for this very reason, cannot breathe and is losing weight and you think it’s no big deal?! (This was a different doctor from the one we saw last week.) I fixed him with my Death Stare (which I have been perfecting in preparation for Caroline’s first boyfriend) and told him I’d like a referral to a pediatric GI specialist, thanks very much. He gave it to me. The Death Stare cannot be denied.

So we will be going to a specialist, hopefully ASAP. I’m really not looking forward to the process– I know they will be running lots of tests and she may even be admitted to the hospital for them– but with any luck they will have some kind of solution.

Although if they ask me to switch to exclusively pumping or formula-feeding (so that we can thicken her feeds to help them stay down), I will flip my shit. I’ll do whatever they ask, of course. But wouldn’t that be ironic, after all our struggles to ditch the bottle? I’m just warning you guys, be prepared for a very whiny post if that is their solution. (You can skip it. I’d never know.)

So now we play the waiting game… hopefully it doesn’t take too long to get an appointment. Fingers crossed!

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Reflux: 1 Billion. Me: Zero.

Monday, April 20th, 2009

Okay, this will teach me to brag about how well things are going! I think that’s just how life goes with a baby, though– you get the hang of one thing and another thing pops up.

Poor Caroline’s reflux is totally out of control. If you remember, her reflux was the reason she was in the NICU for so long, because she got aspiration pneumonia from it. Well, it’s been sort of up and down ever since, but lately I feel like it’s taken over our lives! She spits up multiple times at every feeding. We go through at least 8 outfits per day. Often I can’t even get her from my boob to my shoulder to burp her before she’s spewed at least half an ounce all over herself, me, the couch, and the dog. Her medications (Prevacid and Zantac) have made her more comfortable with the spitting up– it doesn’t burn her little esophagus anymore– but they don’t reduce the sheer volume of it. I would be okay with it… I mean, I can do more laundry without a problem, and she seems comfortable… but she went in for her 2-month appointment on Friday and this is how it went:

Doctor: Is she nursing well?
Me: Yes, she nurses really well, but she does spit up a huge amount.
Doctor: Well, she’s in the 5th percentile for weight, but that might just be her growth curve.
Me: …I’m sorry, the what?
Doctor: The 5th percentile.
Me: WHATINTHEFUCKINGFUCK?!?!?!?

Okay, no, I didn’t drop an F-bomb on the pediatrician. But I wanted to. Because AARRGHH!! I worked so hard to breastfeed exclusively, and don’t get me wrong, I’m glad I do it– but it’s so hard not to feel like it’s your fault when you’re the sole source of nutrition and your child isn’t gaining weight. (When she was born, she was somewhere around the 40th percentile. A drop to the 5th is no bueno.) The pediatrician didn’t seem that concerned at the time since she had gained over a pound since her last visit, but then later in the day she called me back and interrupted my obsessing to tell me that she wanted Caroline back on weight checks to “make sure she’s on the right track”.

It’s never what you expect it to be, you know? I used to be afraid of losing my supply or some other common problem, but my supply is super-awesome– she just can’t keep any of it down.

And as if that wasn’t enough…

The very next morning, I was holding Caroline in bed and passed her to Tyler to reach for my Boppy. This was maybe 2 hours after a feeding. Suddenly, I heard Tyler say in a terrified voice “what’s wrong with her??” I looked over and spit-up was coming out her nose and mouth and she had such a scared look in her eyes, and she wasn’t breathing, and she had a bluish tinge around her lips. I FREAKED OUT. I flew out of bed and down the hall to get her booger sucker and suctioned her little nose and mouth like crazy until she was breathing again, while Tyler whacked her on the back.

There is nothing more terrifying than having your child not be able to breathe. I swear. Nothing can possibly compare to it. You can’t breathe, you can barely see, you can’t think, you feel like you’re drowning. It seemed like it took hours to get her airway clear… I’m sure it was under a minute. I’m certified in infant CPR but that does not matter in that situation because you are too petrified to even remember your own name, let alone the sequence of CPR.

So now I am afraid to go to sleep because I’m scared that she will choke on spit-up and I’ll wake up to the unthinkable. And of course Tyler is in Canada this week– awesome. I’m taking her to the doctor today and demanding a referral to a pediatric GI specialist because clearly this reflux is not under control. I’m also contemplating demanding a monitor, even though I hated the monitor in the NICU. I suspect they will put her on one even if I don’t ask, because airway issues are so serious.

I just want my little girl to be safe and feel better. Oh, and reflux? I hate you.

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