Laughing, Weeping, Living

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

This is Really Hard

on August 1, 2013

I’m sure everyone who brings a newborn home can agree that it is not an easy thing to parent an infant, especially if you also have at least one toddler to care for too. Thank God Jeremy is able to be around a lot during the day because otherwise I don’t think it would be possible.

I definitely remember having a lot of trouble when we first brought Stephen home. We didn’t know what we were doing, I had a hard time getting breastfeeding off the ground, we were both exhausted, etc. When we were getting ready to bring Agnes home, we were kind of prepared with what to expect. We even had a plan worked out for covering her nighttime feedings (Jeremy does the late night one, I do the butt-crack of dawn one, we take turns doing the one in the middle of the night). Agnes is even a fairly easy newborn to care for. She sleeps a lot. However, I still find myself on the edge of holding myself together quite often. I’m sure lack of decent sleep is a contributing factor, but there are many things about parenting Agnes that I didn’t realize would be so hard on me.

1. It actually really bothers me when she doesn’t take a lot of milk from a bottle and I have to hang most of it in the tube for a gravity feeding through her n/g tube. I knew this would be happening. Jeremy and I trained for n/g care and tube feedings. I knew Agnes would be weak and tired easily and that she would probably have a transition period coming home. But every time she dribbles milk out of her mouth instead of swallowing, or coughs a little while trying to suck on the bottle, or simply refuses to eat, I flash forward in my mind to Agnes needing a surgically installed g-tube to her stomach and she can’t eat by mouth at all and she will always be like a helpless newborn no matter how old she gets because no one knows how much her development will be delayed and then she will die. It’s kind of rough. I know it’s irrational. It makes me cry.

2. Agnes is the busiest baby on the planet. The first full day home we had six or seven phone calls about Agnes’ follow up appointments, and we spent two full days trying to finish an online form for applying for Social Security Disability benefits for Agnes. Plus it takes almost an hour for her to finish each feeding. Plus we’ve already had two visits from the home care nurse. Plus she’s already been to her pediatrician’s office for a “getting to know Agnes” appointment. We had to start using a new wall calendar so we can keep track of all her stuff. It’s really stressful trying to keep all her stuff organized. When I think about the stacks of paperwork and binders of information we have already, and all the appointments we already have scheduled that we have to remember, it makes me cry.

3. The other thing I didn’t realize would be so hard is Stephen. He is actually doing really well with having Agnes in the house. He doesn’t appear to be jealous of her and he absolutely does not act out at her in any way. Mostly he just comes over to her and points and says, “Baby Agnes. Baby Agnes.” Except it sounds like he is saying “baby ass” but he’s two so we give him a break. Even before we brought Agnes home he had started to pitch more fits, just because he is two and starting to assert his independence. But since we’ve all been home, I guess the stressors building upon each other have made it really difficult for me to handle Whiny Toddler. When I open the fridge to get something or scan the contents in preparation for making a meal, I just can’t handle how Stephen magically materializes and starts whining for “milk! milk! apple juice! apple ju-u-u-uice!” and then he tries to grab the bottle as I close the fridge door and then he’s even more crazed because now his hand got shut in a door. And that’s just one example of his new trick of throwing tantrums in the kitchen. He is being unreasonable. It is because he is two. It makes me cry.

4. Being tired all the time is not something that is unfamiliar to me. I do have another child after all, and I have recently been pregnant, and I have recently been “nursing” a breast pump around the clock, and I have recently been a frequent visitor to the NICU late at night. So I know how to deal. Bigger cup of coffee, please. I think this is another case of the multiple stressors building on each other. When I’m sitting with Agnes as her crack-of-dawn feeding is running down the tube, I feel so sleepy and I start to nod off a little. I think about how I probably won’t get to take a nap, and how it’s my turn to do the mid-night feeding later. I think about how tired I am and how it’s going to be a long time before I can sleep well again and it makes me cry.

God bless Jeremy when he comes in to a room and finds me sobbing over a stupid thing and he says, “You don’t have to be upset; it’s only a [fill in the blank].” I know it’s a stupid thing not worthy of a few tears, but my capacity for dealing with even the tiniest bit of conflict is completely gone. I do try to stay positive as much as I can, and I am pleased with how Agnes is doing, overall. I know things will become easier as we get the routine established and find what our new family “normal” will be. In the meantime, it’s a matter of getting from one minute to the next.

Here is a nice image to end the post on a positive note:

Stephen wanted to hold "Baby ass"

Stephen wanted to hold “Baby ass”

Aren't they so sweet?

Aren’t they so sweet?



2 responses to “This is Really Hard

  1. woodra01 says:

    The pictures are beautiful. I am not sure if things get better. But The good news is… you get better at it.
    With Charlie, all those daily specialist appointments were exchanged for daily PT, OT, and Speech therapy appointments with specialist appointments to fill in the gaps. A year later, I am still worried about Charlie’s formula intake and am frightened of the return of the g tube.

    Hang tight. You will figure out how to juggle things in a way that works best for you. You will learn what is Agnes’ s norm and when to worry. It may not seem like it at times but you can do it. In the beginning, I used to wake up some mornings and cry with Charlie.

  2. […] a completely different note, a mom brought her little one home from the NICU this week. She wrote a post about difficult she finds things. Special needs parenting is hard and I’m not sure that it gets […]

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