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.
Rachel Stohlmann said:
Your posts are beautiful even as you face such heartbreak. God bless you with His peace and comfort!
Carol Kleinhenz said:
You have made a very wise choice in planning to take her home. I wish that I could have held my children in my arms when death took them. I continue to pray for your peace and strength. May your time with your beautiful daughter
be all that you hope it will be. May our Lord continue to bless you and light your way.Your small family has touched the hearts of so many people that will remember you and Samantha Always!
Sarah Reichle said:
Stephanie, that was one of the most beautiful things I’ve ever read, it made me cry. You are an amazing person.
Amy Medeiros said:
What an amazing, beautiful post. I’m so thankful to see the way God is answering prayers and will continue to pray for peace that passes all understanding to keep washing over you as you savor each moment with Samantha, and when the time comes to say goodbye, and beyond, until you are together again with her and Jonah for eternity.
I read some of your blog and was moved by your story. I hope sharing some of my story may in some way help you.
When my son died Sept. 24, 2009 in my husbands arms at home, it was sad and yet it was wonderful. We were blessed that we were the ones that were holding him as the terror of what was happening played out. My son got sick on a Sunday and died on Thursday, it all happened so fast. Even after all this time it sometimes seems unreal at times. If it were not for the support of family and friends and our faith in God we would not have made it through this difficult time.
One thing I would suggest is that you do not let anything separate your marriage as the road ahead is a hard and difficult one. I look at my son’s life as a blessing. I was blessed to have my son in my life for 6.5 years, every evening the kids and I thank God for the son and brother that is at home in heaven waiting for us. God is selective about whom He chooses for this journey.
Know that I will keep you and your family in my thoughts and prayers. May God grant you the strength, peace and comfort in the days and weeks ahead.
bethany actually said:
Praise God for the peace that passes all understanding!
I am truly touched by your story. I just want to wrap my arms around your whole family.