Day 11 & 376 of J's life: Here I raise my ebenezer

A year ago today I wrote the following on our care page for Jonathan:

July 28, 2012
The good: It looks like J will be able to complete the drug therapy [to close the PDA] today.  A look at his heart tomorrow will tell us if it worked. If all goes well, he will be able to resume feedings tomorrow.

The not so good: He's depending more and more on the machine to breath for him.  His forced breaths per minute is up (from 30 to 45), he's "riding the vent" too often -- which means too much of the time he relies entirely on forced breaths from the vent to sustain him and he's not breathing much on his own. Over the last few days his oxygen level on the vent has steadily gone up (from 25 -- or just above regular air saturation -- four days ago to mid-60s today).  He hasn't maxed out the amount of oxygen he can get from the machine, but it's not so cool that this number has to keep going up.  They are tweaking his TPN (his IV nutrition solution) in hopes that by making it less base of a solution, he'll breath better. (Who knew?)

Oh, also he will get another blood transfusion today for low red blood count in his blood.

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These days are hard. It's easy to look at a peaceful baby sleeping in his crib and know that he's doing exactly what needs to be done to thrive.  When he has hard days, though, I'm reminded of my own helplessness.  He is too young for kangaroo (or skin-to-skin) care -- his skin is too fragile and his neurological system is not well developed. I can't yet hold him and have that soothe him. I want to help him relax, but there's nothing I can do.

Today he is (gestationally) 25 weeks.  Fifteen weeks to go.  This is starting to feel like a long road.

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To end on a positive note, K & E finally got to meet their little brother today!  They've been battling a cold and so weren't able to hang out with him until today.  E's thinks he is the cutest and littlest baby she's ever seen.  K laughed as she looked at him, "He can't speak yet!  He can't even say 'goo-goo, ga-ga'"  They both seem to really like him.

Back to today, July 28 2013, a year later -- a spiritual note

I'm about to get church-y. (You've been warned.)

Our whole family went to church this morning. Jonathan ate his whole bottle while the congregation sang songs. No spitting up, no needing a break even (except to burp). And I'd put a little extra in, so he must have been hungry. A full five ounces down, like a normal baby. Then he went into Ms. Susan's arms. She's one of a few surrogate grandmothers / aunts in our area. He slept on her shoulder for the service. I love it that he can be in church with us. As my daughters say, "It's almost like he's a normal baby now.  He's not a preemie anymore, is he momma?"

The sermon was pretty good. Pastor Nick is talking about psalms. Today he looked at psalms of praise, and he used Psalm 111. He talked about the Israelites in exile. How they tended to forget God, in spite of all the signs he performed among them. That brought him to Psalm 111 - a reminder that God is worthy of praise. He reminded us of God's goodness and steadfastness -- even in his justice and anger. And he reminded us about the tradition of an ebenezer (not Scrooge) -- a "stone of help" set up to remind us of God's great works.

I think of the following hymn when I hear ebenezer:

Come thou fount of every blessing.

tune my heart to sing thy grace;

streams of mercy never ceasing

call for songs of loudest praise

Teach me some melodious sonnet,

sung by flaming tounge above

praise the mount - I'm fixed upon it -

mount of God's redeeming love.

Here I raise my ebenezer

Hither by thy help I've come

and I hope by thy good pleasure

safely to arrive at home

Jesus sought me when a stranger

wandering from the fold of God;

He, to rescue me from danger,

interposed his precious blood.

(or in some versions: "bought me with his precious blood.")

Apparently Pastor Nick thinks of this song, too, because there, half way through the sermon, he made us all stand up and sing it. Being a NICU parent forever shades the way you see the world. And even well known songs like this have put me to tears in the past, because of baby J. I didn't cry this sermon, but down the row Ms. Susan, with Jonathan snuggled in her shoulder, she choked up a bit. (I guess it's not just NICU parents then, after all.)

No matter what the outcome of last year had been, God would be worthy of our praise. He's God. But beyond that we knew that he knew and loved our son. We knew he heard our groaning. Prayers surrounded us. He walked with us. That made all the difference.

But that didn't make Jonathan's path easy or short. You'll see more as his story unfolds here. The next month will be very hard. And those hard days will leave Jonathan scarred. Still, God is worthy of praise.

When the time comes that I finally leave Jonathan in nursery -- probably in about a year  -- you church friends will see that he is a scarred baby. He has about seven easily visible scars, not counting the many that only an ophthalmologist can see.

When you see those scars - when you pick him up and his shirt goes above his belly button, or when he's wearing shorts and you see one above his knee (a failed attempt at a central line placement), or when he is swimming in the lake at a church camping trip - don't be sorry. Those days for sorrow have passed and are gone.  The scars are his ebenezers. They are our reminder - God helps.

Doctors were given skills and wisdom to know when to perform and how to save his life. When things looked the worst, when his kidneys failed or his bowels stopped working (yes, my biggest fear before birth happens to J) -- people prayed, and things started to turn around. Not by our works, but by God's grace.

The pastor today encouraged us to share the ways in which God has blessed us, to raise our own ebenezers. In a sense, that is what this blog does.

It's not that God makes our roads easy, but God walks with us in our troubled times. God still rescues, and God still heals.

This is my praise for today. Thanks for reading.

Viability and resuscitation - the difficult case of the 23 weeker

There is a reason the dates on this blog don't match up.  I tried to write this for yesterday. I couldn't get it done. I wanted this to be said, but didn't think I could say it well. This is a hard subject, and at this point I'm not sure that spending another year on it will make it any better, so I'll give this my best go.

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A year ago today, July 3, 2013, I was just learning what each week of pregnancy meant.  I was going beyond the "24 weeks marks viability" rule of thumb and trying to find stories of what delivery before that could mean.

Every blog I came across gave me hope - at first.  The baby was born at less than 24 weeks. The baby was small.  The baby had lived a week!  Then another!  But then, less than three months later, and the baby blog ended with bereavement.  Do a search for "micro preemie clothes" and you'll find more places to buy baby funeral suits and gowns than onsies or sleepers.

In the end I decided this baby needed to make it to twenty eight weeks. Twenty four weeks is the time at which a baby has a fifty percent chance of survival, and that was too tenuous for me. Before twenty four doctors wonder if it is worth the pain to the parents and the child to resuscitate, hope for life, and then lose the child weeks or months later, with the child only having lived a monitor and intubated life, sometimes without the parents being able to even hold the fragile being until the last moments. Risk of life-long disability is high.

Perhaps comfort care, letting the baby spend the time in mom and dad's arms until baby passes peacefully, is, in the case of these earliest micro-preemies, the most humane course to take. In the end, if the hospital is equipped for babies born before 24 weeks, the doctors give total choice to the parents.  They explain the odds, they explain the risks for long-term disability, and then they let us choose.

When we asked directly our NICU doctor, in the pre-delivery consult, said most -- 80 to 90 percent of parents of 23 weekers that he sees -- choose to resuscitate. That means some choose comfort care instead.  And while our NICU was prepared to work with 23 weekers, many NICUs are not.Thus, in other areas, we may not have been given a choice about resuscitation. Even a decade ago in our area letting the one pound baby go would have been the only course of action.

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Today July 3, 2013  a colleague received this book (Better Never to Have Been: The Harm of Coming into Existence by David Benatar) in the mail.  A well-argued work that says maybe it'd be best if we hadn't been born.  Thus, we wouldn't have ever been harmed. Here are a few excerpts from the introduction:

"Although the good things in one's life make one's life go better than it otherwise would have gone, one could not have been deprived by their absence if one had not existed. Those who never exist cannot be deprived. However, by coming into existence one does suffer quite serious harms that could not have befallen one had one not come into existence." (1).

For biological and psychological reasons we overestimate how good life is and so think that life is better than non-life. While life might not be better or worse than non-existence, coming into existence, he argues, is always bad. Thus, we are all unlucky.

"It is curious that while good people go to great lengths to spare their children from suffering, few of them seem to notice that the one (and only) guaranteed way to prevent all the suffering of their children is not to bring those children into existence in the first place" (6).

Get it?

We started discussing the book.  "So, my decision of a year ago would have been an easy one for him to make," I said.

"Well, probably not," my coworker replied, "because at that point, your baby was viable, so he might have argued that more harm would be done if he weren't resuscitated than if he were."

"Except that he wasn't viable," I said.

Alright, clearly he WAS "viable," (able to live outside the womb), because he lived.  But he was not yet to 24 weeks -- the cut-off point for medical professionals and the law.  So to this author -- I think he would have said don't save a baby at 23 weeks gestation. He doesn't quite exist yet, so let's keep it that way.  

Moreover, while all people are likely to have more harm done as a result of being born than not being born, given that a severely premature baby is likely to suffer even MORE harm than a term baby, and with less than 50% chance of survival, even if everything is done, you are sending the child to certain misery with only slim chance of experiencing anything but pain.

I have run across a handful of people on the internet that argue that we (or people like us) were making a selfish choice to resuscitate because we didn't want to lose our son. "One can never have a child for that child's sake" Benatar states (p. 2), so we are self-interested parties.

A parent of a 23 weeker brings their child into existence at the cusp of possibility knowing that the road ahead will be painful. The chances, as best as they are now known, are laid out for us. Most of us parents of micro-preemies are choosing to give a chance of life to our child, knowing that he or she may be disabled and knowing that even if all our dreams for our child are fulfilled, our lives will be severely disrupted as a result of his or her prematurity.

Our family is one of the "best case" scenarios, and a year out we are still struggling to figure out how to make all pieces of our life work.  One could argue that even so we were self-interested in our decision last year. And while it is true that we did not want to grieve his loss (because to us he did exist), his continued existence teaches us selflessness in a way his nonexistence couldn't have.  His life now is more joy than pain, and as he does not remember the surgeries and pokes, I contend that his existence is not so bad after all.

I know I cannot convince Benatar of my decision, but let's put that aside.

I am writing this post to give voice to the many sides of the micro-preemie question.  Benatar's position refers to all existence and thus is extreme to most people, but it gets at utilitarian arguments. End of life decisions are hard no matter when they come. They are very hard when we have to make them at the beginning.

Again, the choice to resuscitate a 23 weeker isn't a clear-cut choice.  Most of us parents are optimistic fools and chose to say "resuscitate," but the odds are against these kids. I have seen one who, while admitting she loved her micro-preemie, has questioned that choice to resuscitate. Most of us give the kids a fighting chance, and few of us regret it. But it's important to point out the difficulty and complexity of that choice.

While I want this blog to give hope, while I want others to find that story of the 23 weeker who survived (because a year ago I could not) I also want to be honest.

The road is hard.  The path is uncertain. Please, friends, family and strangers, use this blog to offer hope, but don't use it as "proof" that everything will be okay. Only one thing is certain: it will be very hard. No matter what choice a parent makes at the beginning, no matter what the road ahead looks like for the preemie, difficulty is a near certainty. It is also nearly certain that your micro-preemie's path will be unlike any other preemie. You simply can't predict.

So, with all the odds against these littlest ones, is it worth it?  In my case, I say "yes."

Unlike David Benatar, I think even a difficult road is better than no road at all. This comes, I am sure, from my religious convictions. Humans are in the image of God no matter their shape, size or ability. It is sometimes hard. For many people it is harder than not. That said, we are not here to be pleasure seekers. Non-existence, on the other hand, means that one is formless. So a utilitarian argument of this sort falls on deaf ears here.

Not that I am not a bit utilitarian, if I'm honest with myself.  There is a point at which it makes sense to sign a DNR (do not resuscitate) order, but to me that point is far from the point we were at last year. DNR is a great option for terminal disease at the end of life, when it is clear there is only one possible outcome. Jonathan's life was just beginning, and the path forward was yet unclear. Giving my child a chance was worth the risk to him and us of a nearly guaranteed life of greater pain. As this story unfolds, you'll see that despite the greater pain, we have also been given greater joy because of this little guy. As he grows, we too grow. This is a good life. And in the end,

Scars

It is interesting that Better Never to Have Been comes across my desk a year and eight surgeries after we made the choice to give JAM a chance to be. The decision we made has brought unexpected stress and suffering, but we do not regret that decision for a moment. Happiness studies show that nearly all babies, not just preemies bring more stress and unhappiness to parents lives than joy.  So why are any of us having children?  My children may not make me happier, but they do make me better.

First scar (under shoulder) - 9 months after surgery

 I am extremely grateful that Jonathan is not likely to be emotionally scarred from the pain of the past year.  While his physical scars will grow with him, even those scars are starting to fade.