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.
Warning: long post ahead. I’m trying to include everything from a given day into one post, and on May 12 there were long posts on my blog and on CaringBridge. I think maybe Travis wrote the first one? Not sure anymore, it was definitely one of us though.
Today marks the halfway point of our hospital journey, unless something else comes up. The doctors want Samantha on antibiotics for a total of six weeks, and we started exactly three weeks ago. There isn’t much to report in the way of changes at this point, and God willing, that will continue to be the case. Right now she spends most of her day like any
other baby – eating, sleeping, pooping. She sleeps more than most, due to the fact that she is still adjusting to the amount of anti-seizure medication in her system. We are settling into a routine at the new hospital. She eats at 3, 6, 9, and 12 (am/pm). She gets her phenobarbital at 9 am/pm, which she has to take by mouth so we can continue to give it to her after she leaves the hospital. Then at 6 and 12 (am/pm) she receives IV antibiotics through the line in her chest. So those eight times a day mark the rhythm of our lives.
In the meantime we are being cared for in many ways. Two different members of our church stopped by today at different times, one to visit and one to take us to lunch. Tonight someone is bringing us dinner who is a friend of a friend, and tomorrow we have another lunch set up. The visits and meals help us to keep in touch with the rest of the world, especially since Samantha’s sleeping habits mean her room is pretty quiet most of the time. Travis will be traveling home twice a week for worship and chapel so that ministry can continue at church, and Stephanie tries to take advantage of his presence the nights before and after he is gone to get a little extra sleep. The nursing staff here is
wonderful – we overheard them singing goodbye to a patient heading home this afternoon! Every couple of hours someone comes in to take care of something (medicine, cleaning, taking out the trash, or just to check on Samantha) and they always ask if we need anything.
Samantha gets a bath every day shortly after lunch time, too, and for a brief window she smells like a baby again instead of like antibiotics. We are thankful for the way the medicine is working though, and know that smelling it on her breath, in her diapers, and even in her skin means it is working on her entire system. She is gaining weight steadily
and looks more healthy every day. We have begun to work with three different therapists – speech (for sucking/swallowing), physical (for range of motion) and occupational (not sure what this one is for at her age, to be honest, we’ve only seen her once). They are giving us tips for what to do with her during the times when she is awake and alert, from stretching exercises to giving her a pacifier briefly before meals. Samantha is stretching out her legs on her own and will occasionally relax her hands, all of which are good signs. We continue to pray that God will heal her and redirect the neural pathways for her future physical abilities.
Thank you all for your kind words on facebook, through emails, and in the guestbook on this site. We are uplifted by your thoughts and prayers and appreciate those messages so much. God bless you all.
My blog post from that day:
Thunderstorms today. As a girl who grew up in farm country, I can’t help but be thankful for the rain after such a long time without it. And it’s not just here, where according to the gps we are 72 miles from home. Up in Huntsville it’s raining too.
In a lot of ways, it feels like it’s been raining for a month. Today is day 21 of her 42 day antibiotic treatment. That’s a minimum. It’s been three weeks since Travis baptized her in the icu with me holding two cell phones so the godparents could listen in on speakerphone. I haven’t been home in that amount of time – the only time I left the city of Houston was for my doctor’s appointment. And I’m beyond exhausted. I hardly sleep, between the round-the-clock feeding schedule that is true with any baby and the constant worrying that I do. Every beep of her monitor, every noise she makes, I find myself awake and checking. Or I sleep through some activity and wake in the middle of it feeling guilty that I didn’t wake up sooner. I thought I would sleep better last night because Travis was here, but for some reason I just couldn’t. We’ve talked about me going home for a night, but I’m not ready to do that yet. And it feels selfish to me to leave just so I can sleep. Travis wouldn’t leave if he weren’t trying to also take care of things at church. At least he has a reason to go, and then he doesn’t sleep well being away from us anyway.
Sleep, I have realized, is a luxury when you are a parent. I realized it when we first took her home and all of her feedings were up to me. I couldn’t just stay in bed and let someone else handle it. Now we can share the feedings but it’s still hard to sleep. And with each passing day I grow more and more thankful that we will have family around us as a support system when we go home. How else can anyone do this? It’s so funny because I was always fine with being away from family, away from home. When I went to college, I gradually spent less time at home and more time with friends. By the time I got to my last year of school, I went home for a total of two days during Christmas break, essentially for Christmas eve and day, so that I could spend the 23rd with a friend whose birthday falls on that date and then fly out to see my then-fiance now-husband in Michigan for a week. Transitioning from childhood to adulthood was relatively smooth for me (perhaps not so much for my parents) in that regard. And for the past ten years I have lived with several states in between me and my family of origin. Now they will all live within a few miles (or in the case of my sister and her family, a few blocks). I am so thankful for that.
In addition, I am thankful for the network of people reaching out to us. We’ve had visitors both here and at the medical center, and meals are being provided for us in numerous ways. For example, lunch today was courtesy of a member who took us out. Tomorrow for lunch we are meeting with Travis’ spiritual director, a deaconess in the Catholic church who he meets with occasionally for guidance in his devotional and prayer life (something even pastors need!). And tonight’s dinner is being provided in a way that is probably my favorite story to tell:
When we lived in the Buffalo area, maybe a year or two before we moved away, a DCE and his wife came to one of the area churches. We got to know them through a mutual friend and then we moved to Ohio. Thanks to facebook we’ve stayed in touch, and since then we moved to Texas. The funny thing is, we reversed the route they took – they started in the Houston area, then moved to Ohio, and then to Buffalo. And they have a lot of people here that they stay in touch with. So some members of their former church here are bringing us dinner on their behalf! I love it when God helps us see all of these connections within the Church.
In the meantime, we keep caring for Samantha as best we can. I’m trying to not panic about things, although that’s harder and harder to do. When we left the hospital, they did a hearing test on her and she failed. The doctors remind us that this is not conclusive evidence that she can’t hear, it just means we need more testing. Fluid in the ears can affect the kind of test they did. So she will need another test after we leave here, and if she fails that one, then we will see an ENT to dig further. So they are trying to remind us to not panic, especially since even the neurologists said there is nothing on the MRI to indicate hearing loss. But in the middle of the night when all reason is gone, I find myself thinking about Mr. Holland’s Opus and praying that my daughter can enjoy God’s gift of music. I can handle the idea of sign language but it’s the absence of music that I find so sad. Why is this one of the hardest thoughts for me? I sing to her and pray she can hear it. Lord, help me remember that we can praise You in many ways, not just song.
Next post coming tomorrow.