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.
I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience.
First, a brief CaringBridge post from my sister from May 25 (I did skip over one where she gave her address in case someone wanted to send something; they no longer live there and it isn’t relevant to this):
Today we met with a whole bunch of doctors in a meeting to discuss all the test results, prognosis and options. Stephanie will update more fully and in greater detail later this evening. The decision was made to transition Samantha to come home on hospice care and to keep her comfortable. The doctors were unable to answer how long her life might be, but the goal is that she is able to have as full, wonderful life at home with her family as possible. The blessing is that there is hospice care available in Huntsville that can meet her needs. Thank you for your continued prayers.
This is the post I shared on both this blog and CaringBridge later that day:
I’m posting the same thing to both my blog and caring bridge today, because there is so much to share. Just so you know, in case you follow both.
Peace is washing over us, by the bucketful. Is that a word? I guess since spell check didn’t underline it we’re good. We knew this afternoon we had a meeting with Samantha’s entire team of doctors (specialists from various disciplines), so we were preparing ourselves for it last night and this morning, writing down our questions and goals to help determine what is most important to us. Then this morning, as a preview to that meeting, we met with a neonatal specialist and a palliative care nurse. They helped us to talk through our expectations of the meeting and what our priorities are for Samantha at this point. Then they mentioned taking her home, and for me, it was the most hope I had felt in the past two days. Actually, it was probably the most hope I’ve had for a very long time with this process. The thing is, last night I was crying thinking about going home after she dies and seeing all of her stuff, like the crib that she’s never slept in (we were using a cradle bedside before she got sick). And now we can take her home, let her sleep in her crib, spend time just holding her and enjoying every moment we can with her.
That won’t happen immediately. Right now we’re working on transitioning towards home, including figuring out some things about feeding her. She had a swallowing test today that went well, but she’s been spitting up most of her feeds in the last couple of days. So we will have to figure some of that out still. In the meantime she’s still on an IV for fluids. We did elect to stop the antibiotic treatment – the MRI showed that there are no areas of active infection any more, so it’s not necessary given what her prognosis is.
The doctors aren’t going to place a time frame on her life, because there are too many unknowns. She isn’t going to die immediately, assuming nothing changes, but her brain is mostly gone. We got to see the MRI pictures today during the meeting, and despite what we had been told about the scan, it was still shocking to see. They put her two MRI’s side by side on the screen, one from May 5 and one from yesterday (May 24). The change in 19 days is dramatic. The May 5th scan looks like a brain. The one from yesterday just looks like a cloudy mass. They told us that there is a thin outer later of brain matter left and also her brain stem is intact and essentially unaffected. The weight of the fluid in her head is pressing down on the brain stem, but so far all of the bodily functions, the life functions she has, continue as normal. She is breathing on her own. Her heart is strong. Digestion, her liver and kidneys, all of the things we call signs of life are still working. I keep thinking about that Psalm, where it praises God because “I am fearfully and wonderfully made.” That might not be an exact quote, but you know the meaning behind it. Wow, such a tiny part of our brain takes care of something so huge – keeping us alive! And besides that, she can still feel (some of it is pain, but she responds to touch and being swaddled and held. She also got irritated by Travis’ facial hair the other day). She had a vision test Monday that showed she can still see light and shadow. We think she still has some element of hearing, even if it is small. And while we don’t know what kinds of thinking or recognition might be left, we do know that she feels safe when she is still, be that in bed or in our arms.
It occurred to me today that although we don’t know if Samantha can really know who we are, or see or hear or smell, and we know her brain is reduced to the basic life functions and reflexes, she is still our daughter and is much the same as having her as our daughter ten months ago. When she was developing in the womb, we counted her as our child. We loved her and talked to her. I chose the things I put into my body carefully because I was feeding her. Now, although she is bigger, we are in some ways dealing with a baby who has returned to more of a fetal state. And the more we can keep her comfortable, the safer and better she will feel as her life comes to a close.
During the meeting, one of the things we talked about with the doctors were our concerns for Samantha’s life and where we go from here. One of my biggest fears was having her stop breathing while we are gone and then returning to find she is on a ventilator again, with little hope of her coming off of it. One of Travis’ biggest concerns was making sure that we don’t cause her to suffer by the choices we make, whether in giving treatments or withholding them. The palliative care team helped us to make some decisions about that. We have instructed the medical staff through them to not perform CPR, intubate, or use chemical/electrical means to restart Samantha’s heart if it stops. Basically, we want to limit the medical care she receives to comfort measures. We can change our minds at any time and ask them to do things for her if we decide to. But we are comfortable with that, knowing that it is only a matter of time before even her life functions are compromised. How long that will be is unknown.
In fact, we tried to ask that question – how long does she have? None of the medical team was willing to give an answer to it. And as much as I want to know what our timeline is, I appreciate them not trying to tell me. Because the truth is, no doctor actually knows the answer to that. We have been so blessed by the medical team here – the doctors who met with us were all compassionate, answering our every question, listening to our concerns, taking turns explaining what their particular specialty gave them an angle of understanding towards, and some even cried with us.
One of the phrases that made me initially bristle yesterday or the day before was when one of the neurologists said “quality of life.” It’s a term I’ve always had a knee-jerk reaction to, where it feels like we’re talking about euthanasia types of things, essentially letting someone die who has years to live. But today I learned what is meant by that phrase. We made choices to take Samantha home based on her quality of life. No matter what we do, unless God decides to perform a miracle and restore her brain, Samantha cannot live a long, “normal” life. So we can choose to spend the rest of her days with her in a medical care setting, being a patient, with tests and treatments and eventually machines taking over a lot of her bodily functions. Or we can choose to take her home, take her to church, get her out to meet some of the people who have been fervently praying for her. We can help her to live the life she has, in a way that has quality but maybe not as much quantity of days that we could get out of aggressive medical intervention.
It’s funny that we’ve come full circle on that. When we thought it was just her thalamus affected, we wanted to be as aggressive as possible with therapy and give her the best chance at physical abilities. Now we want to enjoy Samantha as a person, as our daughter, instead of spend our days with her as a patient. That was something one of the doctors pointed out to us, that by making the choice to go home we no longer need to be making decisions based primarily on her medical needs, that she can be our baby once again. No, it won’t be normal, and we know that there is a sad ending to this story. But we can set aside the tests, treatments, and procedures for walks, cuddles, and visits with friends. Her cousins can see her. Our dog can see her. All of these things have gained so much in importance.
I told Travis this earlier, but I want to share it with all of you, too. One of the things that has been floating in my head for most of today is a piece from the book Little Women. I’ve been thinking about that scene where Beth dies, and I couldn’t remember the exact wording so I looked it up online: “As Beth had hoped, the ‘tide went out easily,’ and in the dark hour before dawn, on the bosom where she had drawn her first breath, she quietly drew her last, with no farewell but one loving look, one little sigh.” I want to be holding our little Samantha when she breaths her last. I didn’t get to hold her as she drew her first breath, being that it was a c-section, but God willing I can hold her for her last. It seems silly and small but it is what I most want. And I want to be in our home if at all possible when it happens, either with just Travis wrapping his arms around us or with family and close friends in our midst. I know that you can’t always prepare for death to come, but if we get that opportunity it is my wish.
How strange it is that my dreams have changed so much. Just yesterday I was praying that doctors would be wrong, that the MRI would show her brain intact. Now I just pray for the gift of a peaceful end to this life for Samantha, where we can carry her to the threshold of heaven and watch Jesus carry her through it.
Next post coming this afternoon.