Laughing, Weeping, Living

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

Moving On Back

on July 19, 2013

So on Tuesday morning before the crack of dawn, Agnes was moved from the front room of the NICU back to the fourth room, which is technically the sub-intensive care room. This evening she moved again: even further back in the unit to the TLC rooms. The TLC rooms are like private alcoves with a folding partition that you can use to either leave the room open or closed off for privacy. There are three nurses for the TLC group of rooms, six patients total, and I guess they mostly just leave the families alone unless it’s time for nursing care. It is my understanding that Agnes will be discharged from this room when she is ready.


I still don’t know exactly when she will be discharged, but the end is definitely coming near. It is looking more and more like she will come home with a feeding tube, but I think she will eventually be able to eat from a bottle. We have been offering a bottle at most feedings since Monday, and she has only taken 5 ml on average. Yesterday the day nurse had a bit more luck: Agnes ate 10 ml for the nurse a couple times, and about 10 or 11 ml for me in the early afternoon. She didn’t really eat from a bottle overnight from what the nurse told me this morning, but at her 10:30 feeding, Agnes took a whole 17 ml from a bottle when I fed her! I guess they didn’t offer a bottle at 1:30, and she only took 7 ml at 4:30, so to make a long story short, who the heck knows when Agnes will be able to eat a full feed–50 ml–from a bottle?

My thinking is, if she is ready to come home in every way except the feeding, I’ll take her with a tube. At this point, I want her home as soon as possible, even though I get kind of nervous when I think about caring for her without the medical staff around; without handy heart rate, breathing rate, oxygen saturation monitors; without emergency medical attention available in the next room. How will I know if her O2 level drops dangerously and suddenly? What if she doesn’t fuss enough and I sleep through her 1:30am feeding? I don’t know what a yeasty rash looks like, so how will I know when to use the special butt cream they have for her? What if the cat smothers Agnes while she naps? What do I do if her n/g tube falls out and I can’t bring myself to stuff 24 cm of plastic tubing back down her nose?

Seriously, that last one is a biggie because I can’t even manage to spritz saline nose spray up my own nose if I have congestion. I sit there with the tip of the sprayer up my nostril and I just can’t pull the trigger. I don’t know what it is. It really freaks me out.

Plus since Agnes has her own special kind of trisomy disorder, I have no idea what I need to be concerned about or what precautions I need to take. Is she going to be more susceptible to infections? Do I need to take extra care sanitizing surfaces and sterilizing bottles and other things she uses? How concerned about her weight will I need to be? Maybe she’s not supposed to grow at a normal rate because of her genes. Will she have lots of allergies? Do I have to worry every time she sneezes? Can I wash her clothes and bedsheets with the same laundry soap I use for the rest of the family or is her skin too sensitive?

My big hope is that Agnes will be more or less like a regular kid for me when it comes to the day-to-day activities. I know she will have lots of appointments with assorted therapists, and she will take several special medications, and I will have to be mindful of her predicted developmental delays, but I’m hoping I will be able to treat her like a regular baby for the most part.

I think it will be good for me to help care for Agnes now that she is in the TLC room at the NICU. It looks like a fair approximation of home, with less intrusion from the nursing staff. I’m even planning to take some clothes from home for Agnes to wear!

Hopefully we can get some new pictures of Agnes soon. Our real camera ran out of battery power and we can’t find the charger! We’re stuck with blurry snaps from Jeremy’s cell phone camera, but the NICU rooms are so dim because of the sleepy babies that any photos turn out quite poorly. Anyway, I’ll see what I can do to get some more current Agnes pics up on the blog!

2 responses to “Moving On Back

  1. JeneaSwainston says:

    You will do great with Agnes at home! You are not alone! I’m sure they will give you a list of things to watch for and #’s to call if you have questions. Continued prayers for her and the rest of her family!

  2. Kathy Schwager says:

    That’s pretty exciting news! Scary, too, I know. You are a great mom, and she is a lucky little girl to have you on her side. From what I saw when we were visiting, you will still have excellent support when you are home.

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