Dear Lucia,
Today was a trying day! You are convinced you don't need the tube. You pull it out constantly. We had thought we'd never be able to change your tube and here we are re-inserting it as much as 4x a day! Curious baby fingers that are really into grasping lately do not work well with tubes on faces! You get upset when you are set up for a tube feed after a bottle, like why are we feeding you with that stupid thing. You hate it. You get so fussy and start angrily scratching at your face. It is so hard to watch. We hate that tube too!! I know you will do better with your swallow - you are interested in taking a bottle. You love it. It's just the thickened milk that tires you and bogs you down. I am trying to get a follow up appointment with a feeding team to see if you are still aspirating into your lungs. I am sure you are making strides. I hope this means the tube will be a distant memory soon. Today was torturous having to re-insert it so many times. You are a very calm baby for the most part, so seeing you get so worked up is painful for me. It makes me cry. We've been through so much - I just want to see things become easier for you.
That said, I love doing the average mom things. It's hard because people want to help me but I WANT to do it. I will be going back to work eventually and I won't be home as much. I want to do all of the mom stuff - spit up, diapers, feeding, burping, cradling, bathing. I won't have as much free time, and I'll need more help, but for now, since I'm home, I love taking care of you. It is tiring, and we have extra steps that other moms/babies don't have, but I LOVE being the one to do these things for you. I look at your face and I'm amazed by you. I am still in awe that you're here, six weeks later, that you're home. You seem to be doing so well. We had someone come by to do a developmental assessment and you seem on target. I can't wait to see all the things you will accomplish and all of the milestones you'll reach. I know you will be a rock star. You already are.
I love you.
Love, Mama
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