Saturday, January 9, 2010

Nuts, I say

I have to thank you all, once again, for assisting me in sorting out my madness. Thinking about what I'll write helps me enormously in the let's get it all sorted out process.

Wee Hannah has been in her crib and out of our bedroom now for eight nights, all nights in which she lived until the morning, so I am delighted. Four of those nights she slept from the time we gave her the midnight milk snack until I woke her or she woke on her own at the time we get up. So I am now officially delighted but slightly wiggy, especially when I walk past her old bassinet and see it empty, which is unnerving. At Hannah's current weight, she can now go eight hours of fasting before she should burn up all her glycogen and have a metabolic crisis. But I am paralyzed by fear: what if I sleep in? What if she is having a growth spurt and has extra caloric needs? What if a fever comes upon her and that amps her rate up but the grogginess keeps her from waking herself up as she normally would if hungry?

Imagine you are Keanu Reeves in Speed, and Dennis Hopper narrates your situation and says WHAT DO YOU DO?? WHAT DO YOU DO?? You have a sleeping baby with a weird metabolic disorder. She is sleeping. You think she should eat. What do you do? This has weighed on my mind since we brought her home from the hospital and started setting the alarm for three hour feedings. She is at the day care. A new person is in the nursery today. She doesn't understand the MCADD diagnosis. What do you do? And it colors my view of the future. She goes to school having refused to eat much because she has to do her hair. She skips lunch because that is what skinny girls do. The dinner I make disappoints her. What do you do? You want her to sleep all night without dying so you pump milk right before bed and have the bottle handy, because breast milk can sit out for a while and be served room temp when the baby squawks. Now the nutritionists and docs want her on more calories because her growth has bottomed out. What do you do?? Do you take away the food source she is familiar with and hope she takes to liver and onions?

I am quite certain I have often said "don't borrow trouble" to my friends and family when they want to worry themselves into a state. I've said it to myself. I've said it many times since we had Hannah. I'm not very good at following this advice.

I've now been pumping milk for her for seventeen months. I loved it when she still breastfed but she is a smart cookie and knew bottles were easier. Devastated by her choice, I nonetheless continued to make milk. I am winding down and planning to stop fairly soon, but I am loaded with guilt over my choice to stop. Loads of breast milk is not enough for a person of her age, so she is now anemic and needs supplements. Iron based formula would help out here, but if I have a personal belief that Nestle scientists can't possibly do a better job than me in making Hannah designed milk, should I really switch her over when I have months worth of milk stored in my my extra large freezer? And yet I am so excited to throw away the last remaining milk stained nursing bras, the hands free pumping bras, and get that time back in my days. I'm tired of how much it hurts to have largish sensitive body parts pulled on for hours a day. I'm ready to be done. I feel no small amount of joy in believing I've suffered the pumping to give her something Enfamil can't. And a normally developing breastfed baby would at this age be just at the low end of normal in not falling in love with food, and many toddlers are said to exist on two noodles and a kiss. We are not alone in this, we just also have CP kicking up the burn rate and MCADD telling us to have a bottle of milk handy for whenever we might slip some in. I can't really have a waffle and two strips of bacon on the bedside table for midnight snack. Well, I could, but that would be for me.

Or, perhaps, nuts.


  1. If you sleep in, you sleep in. You get up - dash to her room to check on her - and you will deal with whatever happens. I don’t say that easily but I say do say it from experience. Twenty hour days that start and end with feeding pumps, a delicate schedule of medicines between feedings, and medicines between medicines (to avoid a drug interaction), OTs, PTs, and errands of all sorts, take their toll on mom and dad. You need sleep. Sometimes your body takes it for you whether or not you planned on it. The rest of the time you set your alarm and live your life.

    As for the future…

    Ours changed in ways we could not imagine, as did our daughter’s physical development. Many of our fears never came to fruition. Some have. As for the ones that did not, worrying about them was wasted stress in our lives. So, while your reactions are perfectly normal, I encourage you not to waste your precious energy on worry about those things that you can neither predict nor control.

    Let go of the pump. No one misses those days in this household, least of all my wife. You have nothing to feel guilty about.

    As always, laugh when you can, cry when you have to, and live your life.

  2. I have a lot of these worries about my off-the-top of the chart in height babies. I would be going crazy in your case. I think you will instinctively know what is right, and if sleeping in another room is what's needed, then it is. And you've obviously done your part with the breastfeeding. Good luck with all the changes!

  3. Is there a rule against adding the formula to the breastmilk? (ie powdered + breastmilk instead of water)


  4. Arby and Mwa, thank you for your kind support. Barbara, yes, there is a rule against it, per the dietician it would be too many calories for her system to give powedered formula in breastmilk. When there are too many calories the digestion system can't break it all down and you get nasty results on the back end.