Laughing, Weeping, Living

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

A Hard Day

on June 29, 2013

IMAG0150Nothing really major happened today with Agnes, and maybe that was the problem.

She’s back under the photo-therapy lights for more biliruben treatment, so she’s wearing her foamy black aviator goggles. So we can’t see her eyes. And even if we could, they would be closed because the nurses have been giving her morphine as needed to cope with the massive irritation of having a breathing tube, feeding tube, scalp-installed I.V., recovering from gut reorganization surgery, and having recently endured a camera snaking up and down her throat several times to get a real good look. Agnes has been super pissed off the past day and apparently narcotic pain killers are the only way to deal with it. So now she’s addicted to narcotics. I know this because when it’s been a while since the last dose, she starts jerking and flailing her arms around, crying, foaming at the lips, and she won’t tolerate anyone touching her, not even me or Jeremy. The nurse said she’s not addicted, but I’m pretty sure I heard one of the other nurses earlier this week say Agnes is touchy because of withdrawal. If you’re not addicted, you can’t suffer withdrawal. Amiright? So I’m definitely not crazy about the fact that she’s getting more doses, but what can they do? She freaks out so hard the monitors stop working, her oxygen saturations suffer, and her heart and respiration rates hit the roof. They have to do something to calm her, and soothing touch isn’t going to cut it with little miss Agnes the addict.

Not to mention I can’t stop dwelling on the fact that I’ve only held her in my arms for a total of three or four hours the whole twelve days she’s been born. So I can’t hold her, and I can’t even touch her, I can’t look into her eyes, and she’s not even really eating the breast milk I’m slaving away at pumping for her. Her guts are still sleepy from the surgery combined with spending more than a week doped up on narcotics. She is now receiving a measly 1 ml of milk per hour. The nurse said that’s 10 drops per hour. I guess she wasn’t digesting the full 3 ml they gave at one time, so they’re trying this slow drip approach. It’s going to take a long time to work through the collection of milk jars in the NICU freezer at this rate. What am I even supposed to do? All I can do is sit by the bed like a lump on a log. Maybe it helps. Agnes even seems to get mad when I talk to her, so I don’t even know about that.

Plus I talked to the lactation consultant today and apparently milk supply suffers when you’re tired. Or stressed. Or not getting enough to eat and drink. Great. So I have to pump every two hours to build up my supply, which means I have time for precious little besides the endless cycle of pumping, cleaning up my pump, using the little girls’ room, resting for 20 or 30 minutes, then repeat.

So at this point I’m feeling pretty useless as a parent to both my children, with no awesome news today to bolster my resolve to persevere. Hopefully tomorrow will be a better day, and on Monday Agnes will hopefully have the breathing tube removed. If we can both make it that long.

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7 responses to “A Hard Day

  1. Daphne says:

    I know your pain having had a child in the hospital and not knowing why or if he would.survive. But try to remember St Theresa of Avila saying our whole life on this earth is like one night in a bad hotel compared to Eternity!

  2. Kathy Schwager says:

    I’m pretty sure that most parents feel “pretty useless” sometimes. You certainly have had more than your share of “hard days.” Even though you feel that way today, I know that you are a wonderful parent to my two dearly beloved grandchildren. They are lucky to have you as their mother!

  3. Kay Becker says:

    Hang in there Judy—my heart is with you and Jeremy—-we are all with you—Love and Prayers

  4. Penny says:

    Mom, I am truly sick and tired of being sick and tired! Because I don’t have a CLUE what is going on, that Morphine really helps dull all the negative stuff my body is feeling and I can tell when I need some dulling! But don’t worry. I’m not totally hooked. See, I am not hooked on it psychologically since, well, I’m too young to have psychology! My body likes the morphine, but they can wean me slowly and I’ll be OK. Can you just imagine how other babies in pioneer days or poor countries suffered when they didn’t have the care I am getting? Anyway, heres the deal. God has pretty much tied your hand,s right now and all you can do is wait while all I seem to be able to do is lie here just out of your reach. I have a bunch of people taking care of me, but you are started to crack, Mommy. I can hear it in your voice. So listen, I will be fine here if you could just go get some sunshine, nap, cry, sleep, play with my awesome brother with some bubbles. Get the heck outta here for a little while. You and Dad have already shouldered so much this year. But I need you to be strong for me in the future, so go take care of yourself today so we can be ready for each other tomorrow! Or the next day. I yearn to be all yours. Your job today is to stay ready for me. Kinda like when I was still inside you. Our day is coming Mommy. Love , Your Agnes

  5. Kathy Schwager says:

    Penny, that is so sweet! Judy, I hope all of the love coming your way helps in some small way!

  6. Adrienne La Favre says:

    Hi Judy, your description of Agnes’ reactions to touch and sound remind of our son – immediatley after being born and for a while thereafter. He was 7 week premature. He winced at every touch, disliked the light and noise. The nurses said that premies have a difficult time with sensory overload. They just can not cope with it. She told me to imagine that all his nerve endings are at the surface of his skin, ears, eyes. All the sensations are amplified and are just too strong. I realize Agnes is not a premie but in some ways maybe she is like one. SHe is small, had a hard time devleoping in the womb. Maybe she to is suffering from sensory overload as Karl had. I wonder if the morphine may also help with this overload as well as with pain. Thinking of you a lot, Adrienne

  7. Penny says:

    Thinking about the two of you today. Agnes is well cared for. Please care for yourself. Post partum blues are a real thing……….especially when all the things that would normally rescue you from the blues are just out of reach………..within the walls of her incubator and the limits of all her equipment. Redefine what it means to “mother.” When she was inside you, you did whatever it took to bring health to the “nest” that was you at that time: food, rest, etc. Well, in many ways, she isn’t quite ready for the world yet, is she? So she is still relying on you to take care of her …by taking care of YOURSELF. Please revisit wtih that lactation consultant about a realistic plan because the one you describe isn’t if it is exhausting you. Its self-defeating. And before you label yourself as a bump on a log……….read Matthew 25: 35-36. You are all that Christ describes in that chapter to Agnes. Hardly a bump at all.

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