Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Time to Eat

on July 17, 2013

Agnes has been doing well the past couple days. On Monday we pinned down the doctor and got her to say Agnes would be coming home in “one to two weeks.” Late Monday night/early Tuesday morning Agnes was moved back in the NICU to the sub-intensive care section, which means everyone thinks she is stable and getting closer to going home. Also on Monday we started trying to feed her from a bottle. She did really well the very first time, but every time after that she has not done well at all. She sucks a couple times, dribbles almost all of the milk out, spits up a lot, then gives up and won’t take the bottle any more. She is starting to do okay with a pacifier, so maybe she just needs a lot of practice with sucking. Babies need a lot of coordination to get the sucking and swallowing together well enough to actually eat. Plus Agnes was in a drug-induced stupor for the first two weeks of her life, so she really is like a newly born infant learning to eat. Plus we know Agnes is going to have developmental delays, and this is probably our first real observable delay.

She is also back in the isolette. She only stayed in the crib for a day before the docs put her back. She couldn’t hold her temperature. They are gradually turning down the heat in her bed, so maybe they are thinking to try her in a crib again soon.

There are really no more medical interventions they can do to get Agnes home sooner. It’s all up to her. She needs to hold her temperature and eat from a bottle. The docs have talked about sending her home with a feeding tube just to get her home sooner, and I am pretty sure I don’t want to fuss with that! But after watching Agnes struggle for three days to get hardly anything from a bottle, I think it might be a reality for her to come home with a feeding tube. She may still get the bottle thing–the last feeding I was around to see today went a bit better with Agnes drinking about 10 ml from the bottle before she quit. That’s up from the usual 3 or 5 ml that she was doing before.

In other news, I have decided to quit pumping for breast milk. Honestly, it is the main thing that stresses me out and makes me break down crying. I also worked out that I spend about 5 hours a day on pumping and pumping-related activities. That adds up to be equivalent to a full-time job. I feel like the pumping is stealing time away from Agnes, time away from Stephen, and time away from my other duties as a housewife. Sometimes I think I go to the hospital to pump my breasts, not to see Agnes. I usually only have a few hours at a time to spend at the hospital, and by the time I get there and get down to the NICU, it’s almost time to pump so there’s no point in getting Agnes out to hold since I have to leave so soon. Then whenever I do have time to visit Agnes, the nurses need to do stuff to her, or the physical therapist wants to work with her, or whatever. I can’t keep pumping when it causes me so much stress and heartache. I know “breast is best” and the milk is much better for Agnes than formula, but she may not be able to nurse for months, if ever. I can’t keep pumping for months just to be ready for her when she is ready. I don’t have that kind of time to spend with a machine that takes me away from my children.

The NICU operation really pushes moms to pump breast milk for their sick babies, which is fine. I get that they want to set babies up for nursing. But for long term patients, it is so hard on the moms to sustain pumping. I was talking with some other NICU moms who are having the same experience. We all feel pressured to keep pumping at the expense of time spent with our babies. Except there are folks talking to us from the other side saying we need to be doing “kangaroo care” every day for as long as possible. I’m sorry, but how exactly am I supposed to hold my baby for at least 90 minutes and still pump every two hours? Not possible. Not possible. No wonder I feel like crying all the time. So I’m going to quit and Agnes will just have to get used to the taste of formula when the breast milk runs out.

So, in case you missed it amidst my rambling, what I really hope and pray for right now is for Agnes to start being successful at eating from a bottle. That’s the most important thing right now.

stephen at hospitalAnd in conclusion, here is a picture of Stephen, lest he be forgotten. Isn’t he adorable? He is a little parrot these days, mimicking everything we say including tone of voice. He knows some colors which is apparently very precocious. His animal sounds are the cutest ever. He also has recently learned a very advanced concept. To illustrate, he will walk up to me and point at my face and say “no glasses” even if there are no glasses-wearing people around for comparison. He also pointed to my wrist and said “no clock” because I wear my watch on the other arm, which he couldn’t see at the time. He’s a genius, adorable child!

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2 responses to “Time to Eat

  1. woodra01 says:

    Pumping was a difficult issue for me when Charlie was in the NICU. I wrote a lengthy post on it. You are doing an amazing job! Yay Agnes’ s mom!

  2. Kathy Schwager says:

    I know has been a difficult issue for you. You have to do what works for your entire family.

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