Oh, Your Baby Eats From A BOTTLE?

*WARNING: This post contains words like boob, breast and nipple. I wouldn't blame you for skipping it, I would have just 12 months ago. Lactation is scary until you've tried it!*

If she thinks her thumb goes
in her nose, will she ever learn
to eat?

I am good at eating. Maybe a little too good. I am competent at all the components-I can chew and swallow and suck liquid through a straw. I have no recollection of being taught these skills, do you? Aren't humans (and even animals) generally born just knowing how to eat?
I remember when Clara's heart defect was first diagnosed and one of the longer term effects of OHS in infants they talked about was slow development, including weight gain and growth. And oh how we giggled with family about that-no baby of mine would struggle with eating, we love food in this family! And we haven't been too far from wrong, Clara has grown and is strong and healthy, even being in just the 3rd percentile for weight-we know lots of family babies that were in the same range at this age and they are doing just fine now.
And yet, there is nothing that haunts my days and nights more right now. We're early in this process still, but we keep seeing Clara move a tiny bit forward, then a few steps back. When we had to limit her oral feeds before she passed her swallow study, it seemed she was going to just yell and yell until she got more food. And once we were cleared to feed her by bottle during the day, she started strong, taking almost an ounce by mouth. We had the NG tube to ensure she got enough calories, and hooked her up to a pump at night. And then she got the sternal infection and we were re-admitted to the hospital. The first few days she was fed entirely by pump, but by the time she was discharged, she had (one time) eaten two full ounces by mouth! We thought she would quickly progress and we'd soon have to only use the pump at night. But the opposite happened, she now eats less and less by bottle each day-less than 1/3 of an ounce. Way less.

Some of the bottles and nipples and eating
implements we've tried.

So we are constantly trying to figure out what she needs-we've tried several bottles and nipples, waiting until she is really hungry instead of eating on schedule, thinning out the formula (we thicken it with high ratios of powder to water, to give her additional calories), feeding sitting up, in my arms, in Genevieve, having others try to feed her. We've changed her to a thinner NG tube to help her sore little throat, we tried adding fruit-flavored vitamin drops to the formula. She isn't falling for any of it. And to add insult to injury, she throws up every day, and sometimes several times a day.
Since she was born, I have been attempting to pump enough breast milk for her and it has been such a struggle. It seems it just isn't in the cards for me to produce enough naturally, and I've added fenugreek and domperidone and even more water than I normally drink, which I never thought was possible. Clara and I have tried nursing, but neither of us knows what we are doing and it often ends in tears for one or both of us. I feel like I'm just smothering her in my boob and she occasionally latches on by accident and then, after sucking a bit, just starts either laughing at me or crying. I kind of hurts my feelings.

Not quite the bottles you
imagine when you're
a little girl.

I see pictures all over Facebook of friends' babies eating from bottles. Even though for many years I didn't want children, I still was a normal little girl at one point, playing with baby dolls, feeding them with those little bottles that have 'milk' in them. When the instinct to have a baby kicks in, so (hopefully!) does the instinct to feed them. And in every scenario I could imagine, that meant a bottle or breast feeding. Seeing those pictures of other babies eating from bottles-sometimes I'm sad and sometimes I can laugh and think "how quaint, feeding a baby that way!" But always I am jealous. We've never just cuddled on the couch with a calming bottle before bed. It's less personal to pinch a tube, pop it open, syringe in water to flush the tube, hook up a giant syringe, poor formula in the syringe, hold it up and stare at it for 20 minutes while it empties in to her stomach, push another water flush in the tube, and close the tube port. Feels very motherly and nurturing-y and bonding-y, doesn't it? Our other option is to put a bottle in her mouth and, after a suck, she pushes it out and gags and coughs and chokes. That also makes a mom feel really good.

Clara is strong and growing well for a heart baby-her cardiologist, if not her pediatrician, was very pleased. And this tube is a blessing in many ways. It has given us many full nights of sleep and a way to administer even the worst tasting medicines with no resistance. But once again I am reminded of the difference between Italy and Holland. Here in Holland, we don't get to eat like everyone else, it's a different diet and different style and not quite what we had pictured. I'm already never going to get back the things we missed like getting to see her right after she was born, holding and touching and cuddling her when she was so fresh, and being the first to change her diaper or give her a pacifier. Today, I think it's not fair that I may never get to just sit and feed her a bottle. I'm thankful we have a way to feed and nourish our little tulip, but I don't have to like it.

How Clara eats-with her favorite binkie keeping her
safe from having food in her mouth and her
feeding tube doing all the work.