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.
The following post is from May 10, 2011, one that I wrote for my blog and copied to our CaringBridge (or maybe vice-versa?). This was the start of the hardest time period for me during her illness. You would think that having her on hospice would be worse, knowing she would die, but actually, the stay at HealthBridge was harder for me. I felt completely isolated there, and it was extremely painful. Hospice allowed us to be home, surrounded by family and friends.
We have officially left the hospital. Well, kind of. Now we’re at a place called HealthBridge Children’s Hospital. It’s kind of like a nursing home for kids. This place is designed for longer term health issues for pediatrics, like physical therapy, or respiratory therapy (for older kids who are intubated), or in our case, IV antibiotics. She gets PT, OT, and speech therapy here as well. Funny to think about speech therapy on a 2-month-old, but we’re dealing with swallowing and sucking reflexes at this point which will in turn lead to talking down the road, we hope. So much of this brain damage is a big unknown at this point. We know she has many hurdles ahead of her, that she might not ever be able to walk or talk or… I can’t even imagine. But we know that the more therapy she has now, the better her chances of doing everything. There’s no guarantees, of course, but if we just left her alone her muscles will almost certainly tighten up and be unusable down the road. And her neural pathways won’t have much of a chance to reroute. They might not, but they may. Who knows for sure?
The process of switching health facilities was as smooth as they could possibly make it – the ambulance transport team was amazing with her, let me ride in the back so I could see her. She’s so tiny compared to the stretcher they put her on! But she slept the whole way here, and then we were brought back to our room. Because she is still needing to be monitored for blood oxygen levels, we are actually in a wing with some of the sickest patients here, lots of older kids with breathing tubes. But between the fact that she is actually not that sick and also they’ve made accommodations for us to both stay with her (normally only one parent is allowed to stay), we ended up with a pretty good deal for her room. We think it’s normally an isolation room, because there is an anteroom just outside with cupboards and a sink for hand washing. The room is bigger than some others, which allows for two of these super-uncomfortable fold-out sleeping chairs, and we also have a private bath. Most of the other rooms share a bath and the parents have to use the showers in the hall.
Everyone at the hospital said this place would be more homey. I guess it is – hard to tell when there are still beeps and metal cribs and the rolling adjustable tables that fit over hospital beds. But they do try to paint home-like colors in the rooms and the shelving looks built-in with crown molding. We no longer have a hospital cafeteria, which is good and bad. Good in that we don’t have to shell out $20 a pop for meals, plus they provide meals for one parent. Bad in that to get food we either have to bring it in and microwave or leave the place entirely to eat. And the meals they provide are not your average hospital fare. Only one hot meal a day, at lunch – today it was spaghetti with garlic bread and salad. Then dinner is brown bag (literally) with a sandwich and chips, and breakfast was cereal, juice, and a biscuit. But we have pop tarts and granola bars, and we’ve had some generous folks give us cash, and THANK GOD the parking is free here. Plus unlike the medical center, which is a downtown all by itself with very little in the way of restaurants that are open after 5, we are actually right in the midst of an older suburban-ish (or urban? I can’t tell how to describe it) neighborhood with lots of restaurants and stores within a mile or two.
We lost out on having laundry available to us here, but it’s ok because now that Samantha is stable Travis is going home twice a week, once for services on the weekend and once mid-week for an adult class and chapel at the school. So he will take our laundry home and wash it while he’s there. He had a hard time leaving today, mostly because we’re still so new to this place and learning to trust the staff here. It’s scary because we had figured out the system at the hospital, and now we’re learning a new system. And I didn’t tell him when he left, but it’s hard for me to see him go, too. It’s lonely to sit here in the room with her. She sleeps most of the day, which is a combination of being a baby, being on medicine that zonks her, and the healing that is still going on in her tiny body. So I hold her for a while, but then I need to eat or go to the bathroom so I lay her down. And then she’s sleeping so soundly that I don’t want to disturb her, and then what do I have to do with myself until her next feeding? Napping is always an option but in order to do that I need to unfold one of these chairs and then inevitably a nurse or therapist will come in to work with us. So I guess blogging is what I’m doing right now to fill the time. Thank you notes will probably be another task on the horizon.
Ever since I went into the hospital before she was born, way back in February (and maybe even before that) I keep thinking, “how do the single moms do this?” Whenever Travis has to be away, I feel so lonely and helpless. I miss having a partner to share the load with. I can’t imagine how I’d be able to make all of the decisions that need to be made for her. And getting around? Forget it! I would have had to put my baby in an ambulance and then watch them drive her away while I get the car.
So many of the kids here have only one parent with them at night. If Travis wasn’t staying with us, we’d never get to see him. Visiting hours are over at 8pm here, so how do working parents ever spend time with their kids? It’s amazing to me that people who aren’t blessed with our circumstances can survive this journey.
Saturday night, I was holding her after a feeding and thinking about all of the people who have been praying for Samantha and who love her already. And suddenly I was overwhelmed with the realization that God loves her more than all of the love all of us have for her combined. It’s so hard right now to trust Him with her future when things seem so bleak, but I know that’s how much He loves her. This whole process is an exercise in trust – trusting God, trusting the medical team, trusting ourselves and each other, trusting our congregation to care for us. And we’re definitely not perfect at any of it.
On top of everything else, today Samantha is two months old. This is not how I envisioned us spending this day. But then again, none of the days over the past three weeks have been anything like I imagined. We’re told unless something changes, she will need six weeks total of IV antibiotics, and today is day 19 out of those 42 days. So God willing, we will go home around June 2. That seems like a long way from now, but I think that’s partly because I can’t figure out how it’s already May. I missed most of February being in the hospital myself, then March and April flew by in life with a new baby, and now May will disappear into this hospital. Someone said something about how we can start to enjoy our summer when we go home. I hope so.
Next post coming tomorrow.