We just get up a little earlier to do chest PT in the mornings, to keep her lungs as clear as they can be and prevent infection. We add thick, smelly, stain-inducing, bright orange vitamins to her first and last bottles of the day, because her tiny body has a hard time absorbing vitamins A,D,E and K. We add 1/8 tsp of table salt to her formula for the day, because she sweats out more salt than most babies do. We mix formula at even more intense concentrations, because she needs more calories to cling to the bottom of the growth curve, and hopefully to start climbing further up it. We empty capsules of pancreatic enzymes into tiny quantities of apple sauce and scrape them onto the roof of her mouth before each feeding, because her natural enzymes are stuck in the sticky mucous of her pancreas and she doesn't digest well without extra help. We give extra syringes of medicines like Zantac for reflux and antibiotics for cough when needed.
Life isn't all that much different. We have just had some extra items to add to the daily routine here recently. We are working out a system that is manageable for us, and I think it's going pretty well. Nora is a champ with all of it - we really couldn't ask much more of her. She occasionally fusses through PT or tongue-thrusts medicine right back out of her mouth (because she is still young enough to have a tongue thrust reflex!), but she takes it all without much protesting. She is gaining weight, albeit slowly, and she is a MUCH much happier baby. Sleeping through the night now, too!
This happens to also have been an extremely difficult month of work for me, working all hours of the day and night and averaging 70 or so hours a week. I finally have a few days off right now, which has allowed me to focus on snuggling my girl and being here for her. It has been so very difficult, being away from her right now. My poor son misses me (and tells me at least 5 times a day, even when I'm home), which is simultaneously heartwarming and heartbreaking as well. My poor husband has been left to figure a lot of this new stuff out on his own, to comfort our son, to take care of our daughter's extra needs, to cook and clean and mix formula and read stories and give baths... And still he somehow manages to be concerned with packing lunch food for me. Mind-blowing.
It all amounts to a difficult time of transition for our family, but also a beautiful time of perspective-shifting growth and self-sacrifice, and yet another opportunity to experience His awe-inspiring Grace. There's no other explanation for the way that we are making it through this crazy mess. This is the work He has laid before us in this season of our lives, and we are finding that, with the right perspective, we can approach it joyfully and with great anticipation for the blessings that are to come. Not because God "owes us" after all this, but because we are learning (first-hand) that His greatest blessings naturally flow out of life's struggles.
Love this! Beautifully expressed. I can testify along with you that joy comes through the trials, even if our trials are vastly different. Praying for you guys as you shine light in a new a different way for all to see! We'd love to bring you dinner sometime!
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