This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

We were still struggling with feeding. Looking back, I wonder if it was from the brain damage taking hold, limiting her ability to handle basic things like swallowing. Not that I’m a doctor or understand fully what happened in my daughter’s body. But I was on my own on May 18, waiting for Travis to return from one of his twice-weekly trips home.

From CaringBridge:

Samantha came through her vaccines yesterday like a champ – the nurse said she only cried a little. And then she had a pretty extended awake/alert period last evening. After all of the discussion with nurses, dietitian, etc., about her feeds, she threw up again last night during the midnight feeding. So I talked to the doctors this morning and they said that 2 ounces is plenty for her to eat at any one time. One suggestion the doctors had was to push her feedings a bit closer together and start watching for Samantha to cue us for when she’s hungry, as long as we feed her at least every three hours. 

A child left here today already, and another is about to. It always brings tears to my eyes. They announce over the loudspeaker for all available staff to come to the front for a discharge, and they all sing “Nah Nah Hey Hey Goodbye” to the kid that is leaving. It’s something small but at the same time a huge thing for these children. I don’t know if they do it for babies, it might just be for the benefit of older kids and not the parents, but we’ll see.

On another note, we’ve been so blessed by healthcare professionals. I complained on facebook about last night’s nurse, but she didn’t really do anything wrong. She’s newer and I wouldn’t expect her to be able to set up the medicine pump properly without turning on some lights. It’s just annoying when I had only been asleep for an hour when she came in. Samantha waking me up doesn’t bother me the way someone else waking me up can.

We are looking forward to Travis rejoining us this afternoon. He is gone over the weekends and also Tuesday night through Wednesday morning to take care of church business. And while I’m thankful for the impending rain, I hope it holds off until he can get inside.

From my blog, titled, “To be needed”:

Everyone keeps telling me to take breaks, but I don’t know how to do it. I have no clue how to find balance in my life with a baby. They say to rest/sleep when she’s sleeping. They say to get away when I can. They say to play with her when she’s awake and alert. They say to hold her upright after feedings for 30 minutes. They say to hold her as much as possible, sing to her, do her exercises with her. And all I can think is, what about the other stuff I need/want to get done? Like eating, showering, going to the bathroom. And those are the bare minimum. I also would like to write posts for all of you to read, write those thank-you notes I mentioned yesterday, and maybe take a walk or read a devotion. But THERE IS ONLY SO MUCH TIME IN THE DAY!

And when we go home with her, it will be harder. Here they will bring me meals, not great ones but at least I don’t have to do anything to have food set in front of me. And Travis takes the laundry home to do it. But when we go home, I will start doing the laundry again and there will be more of it – towels and blankets, for instance, that here belong to the hospital and I don’t have to wash. And at some point, I want to start cooking again. It’s been months since I cooked anything, and I miss it. But how do I do that and keep an eye on her, especially if the time to prepare a meal happens to intersect with one of those alert times for her?

This morning I talked to the doctors about her feeds. She threw up again last night, and I’m fairly certain it’s because we’ve been pushing her to take more than 2 ounces at a time. The doctor said there is no reason for that, but we can start feeding her every 2 to 2 ½ hours. And something inside me just wants to panic thinking “that’s even more time out of the day.” Instead of feeding her 8 times a day, we could be doing it 12 times.

The worst thing in the back of my mind is that all of this is your basic new parent, adjusting to life with a baby stuff. Couple that with the fact that she has special needs, that we need to start helping her reroute her neural pathways for movement, and it seems downright impossible. When we first brought her home, I was spending 8 hours a day just devoted to feeding her, between nursing and pumping. So 4-6 hours is better, by far. And I don’t have to do it all. But I also know my husband and how he is already feeling the burden of not being at church much lately. He will need to spend some extra time just trying to catch up. And at some point, I would like to get back to working at church too. When is the time for that?

I try to not think about this stuff very often because it is too heavy for me. Just like I try not to think about the immensity of her diagnosis and the damage that has been done to her brain, or the fact that we very nearly lost her. However, not thinking about it doesn’t seem to make it any better. If we could schedule every moment, would it be easier? Maybe, but it doesn’t matter because some of the stuff is dictated purely by Samantha. I wish I felt comfortable enough with the nursing staff to leave her here for a few hours or even overnight to take a break, but when I leave for just a meal I think about the fact that the only signal they have is her pulse ox – and it isn’t very reliable. Will they hear her crying? The downside of having this somewhat isolated room is that it isn’t visible from the nurses’ station, and that makes me nervous too. Will someone notice if she is awake or alert and play with her? I just don’t know. And right now it feels good knowing that Travis and I pretty much have handled all of her feeds since she started getting better (my mom fed her once). It’s one of the ways she knows we’re her parents. The physical therapist this morning said that she knows I’m her mom. I wish I could believe that, but it’s so hard to tell. Am I able to comfort her just because of that, or because I’ve simply learned a few tricks along the way? And if I am able to comfort her because I’m her mom, how can I leave her for even a short time – what if she needs me? And the flip side is just as scary to me – what if she doesn’t need me after all?

All of this is a control issue for me. I know it is. I know it’s a form of idolatry, needing to be the most important person in her life. I just don’t know how to turn away from it.

Next post coming tomorrow.

Advertisements