Laughing, Weeping, Living

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

The Reasons Why

on September 5, 2013

I just realized today that my last several posts have been about everything except my infant in the hospital. Agnes has been in the hospital this time for just over three weeks, and she isn’t going to come home until early next week. We are back in the routine we established when Agnes was in the NICU: wake up and get ready for the day; go to the hospital; stay as long as we can until Stephen gets bored and loses it; come home for the afternoon; putz around the house; maybe go back to see Agnes after Stephen goes to bed; sleep; repeat.

Actually, for the past week, I haven’t even gone back at night to see Agnes for a couple hours after Stephen goes down for the night. I just can’t. I’m burnt out on hospital.

I’m sick of the hospital. I don’t remember what life was like when we didn’t have to go to the hospital every day. I don’t remember what it was like to have Agnes at home. Every time we drive somewhere, Stephen thinks we are going to visit “baby Agnes.” He has a routine when we arrive at the hospital. He pushes the button to open the automatic doors from the parking deck into the hospital building. Then he runs over the pedestrian bridge across the street. Then he has to touch three things: the giant rubber ducky art made out of gum balls, the 3-D timeline of Children’s Hospital history, and the portraits of the “doggie brigade” therapy dogs. Then he says, “horse, horse,” when we walk up to the horse sculpture. Then he gets a sticker at the information desk. Then we go up to Agnes’ room.

I don’t want my son to have a routine about going to the hospital.

Another thing that is happening to me with Agnes being in the hospital is I don’t feel connected to her anymore. She doesn’t feel like my baby, and I don’t ache to see her and hold her anymore. It gets less and less hard for me to leave her room every day. Of course I’m concerned about her, and I want her to come home, but I feel really detached from her on an emotional level. I do her care when we are with her, and I want her to be comfortable. I get irritated on her behalf when I can see that she is uncomfortable because of a dirty diaper, or her swaddle is tangled, or she has slipped into a strange position in bed. I want to fix those things. But I don’t feel a connection to Agnes like what I think of as a “normal” mother-baby connection.

It’s very hard on my family to have Agnes in the hospital and being medically fragile. I think the stress of that situation has just finally worn me down. I can’t think about it, and the more time I spend at the hospital, the more worn down I feel. I’m starting to resort to coping mechanisms more. I watch stupid T.V. programs in the evening and I let Stephen watch more T.V. during the day. I need to drink multiple cups of coffee to keep going during the day. I need to take naps more often than I used to. Instead of one beer with dinner, now I sometimes have a drink with dinner and another one later in the evening.

Finally, another reason why I haven’t been writing about Agnes is nothing is really happening. She is stable and her condition is pretty much unchanging. The amount of oxygen she gets changes every time we go there, but she usually gets around 30%. Her trach and g-tube sites look good and healed. She has the most horrible diaper rash I have ever seen ever. The doctor even prescribed a cream they use in the burn unit to heal peeling, excoriated burn wounds. Maybe her butt is looking better today. Maybe. But other than the rash, she is doing fine. Our caregiver training is nearly done. We all need to take a CPR class on Saturday, then we all get to do our 12 hour stays. My parents will do theirs 6 hours plus 6 hours over the weekend, and Jeremy and I will do 12 hours on Monday. Tuesday is Agnes’ tentative discharge date, depending on whether we can get the last two shifts covered for nursing assistance.

I will be relieved to have Agnes home. Maybe when she is home I will start to feel more connected and caring toward her again. It will be nice to not go to the hospital every day.

6 responses to “The Reasons Why

  1. Kathy Schwager says:

    I imagine that it was hard for you to write this post. I’m sure most parents in your situation have those same feelings, but don’t talk about them or even acknowledge the feelings to themselves. I sincerely hope and pray that your whole family will be able to establish a routine at home soon! The last few months have not been good for any of you in so many ways.

    That mother-child connection is a strong one, and I’m sure it will reestablish itself when you are together again. You must be so exhausted, and that doesn’t help either.

  2. Kay Becker says:

    Don’t be to hard on yourself—-you are just exhausted and Jeremy probably is too—use this time to get a little rest and don’t beat yourself up. Prayers etc. Kay Becker

  3. woodra01 says:

    I know it is hard. I suffered from burn out as well. You are brave for honestly writing about such difficult emotions and realities. Keeping you in my thoughts.

  4. roadtofertility says:

    I agree – I applaud you for writing with such blatant honesty. Being a NICU mom and a PICU mom..and STILL in the hospital even as I write this..I am also sick of hospitals. It’s really difficult to do the same thing day in and day out. It truly wears on you! For me , when I leave the hospital I feel guilty. It’s a bit easier when you see the light at the end of the tunnel. Wishing you the best!

  5. […] The Reasons Why  – I enjoy following Laughing, Living, Weeping quite a bit. In The Reasons Why, the author […]

  6. […] hospital stay next week is brief. I don’t know how I will handle another month-long stay. Last time I started to pull away and feel disconnected and detached from Agnes and I don’t want that to […]

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