Sunday, September 28, 2014

Goodness and Mercy

I haven't posted on this blog for several years now (this is Isaac, by the way). But our recent experiences with our daughter Sarah have made me want to write a little about my own thoughts and experiences.

Our little Sarah, all bundled up
For those who don't know, our second daughter Sarah lived only four days: she was born on August 12 and died on August 16. She was beautiful. She was born. She was alive. She breathed. She slept. She awoke. She held our hands. She once looked into our eyes (at least that's how it seemed). Then on a peaceful Saturday morning we removed her breathing tube and she died peacefully in our arms. Our beautiful little girl, gone from this earth.

Daddy's little girl
In those four short days Sarah changed my life, I hope forever. She changed the way I see my life, but most importantly she changed the way I view my faith in God.

I believe in God. I have always believed in God. But before Sarah my faith in God was more intellectual, more spiritual. But Sarah made the love of God tangible. Rather than an abstract thought -- something that made me feel good inside -- the love of God become something real to me, something I could directly interact with. It was given to me and washed over me during the hardest time of my life.

At Sarah's funeral I described it like this: It was like being thrown into the darkest abyss, only to find myself standing on solid ground. There is no other way for me to describe it -- something was there. It was not something I earned. It was given to me as a gift.

Saying goodbye, for now
At the funeral
We who believe in God often say that our belief, our faith, is meant to make us "happy." I believe that this is true, but that it is also untrue. "Happiness" as we define it now is a rather recent, modern idea. We are not promised that if we keep the commandments of God and follow Jesus Christ that our lives will be filled with ease, that our stress will always be low, and that our mood will always be slightly toward the "pleasant" end of the spectrum.

Throughout my experience with Sarah I had a scripture in my mind, which I think better describes what we can expect from a spiritual life, from a life committed to following Christ. It is found in the beautiful Psalm 23:

Surely goodness and mercy shall follow me all the days of my life

Goodness. Mercy. That is our promise and our inheritance. During Sarah's four days on this earth there was so much goodness, so much mercy, that we hardly had room enough to receive it. Sarah herself was the epitome of Goodness and Mercy. She was Goodness and Mercy packaged up in an imperfect body, sent to show us God's love.

Many more challenges await me in my future life, I am sure of that. But I am confident that goodness and mercy will follow me, all the days of my life. And someday I will dwell, with my daughter Sarah, in the house of my Lord, forever.

Saturday, September 13, 2014

Peace like a river

Our daughter Sarah lived only 4 days. Though her life was brief, it was also beautiful, and it was miraculous.

Her story starts back in early January when I found out I was pregnant. This was confusing to us because I hadn't done IVF four times like we did with Mary. We took 7 pregnancy tests, just to be sure. They were all positive.

My little miracle pregnancy progressed very normally until about 32 weeks, when I suddenly doubled in size over about 2 weeks.
32 weeks
34 weeks

I wondered idly if I had extra amniotic fluid or something that made me get so big so fast. Isaac pointed out that I was supposed to get bigger during the 3rd trimester.

During my 34-week check, a quick ultrasound to check Sarah's position (breech, with her head up by my ribs) also showed that there was WAY too much amniotic fluid surrounding her. The next day we went to see a perinatologist (a pregnancy specialist) for what I thought would be a quick chat about trying to get Sarah to turn before the delivery.

Our quick little appointment turned into a 2 1/2 hour doozy of a meeting with the doctor.

The bottom line: there was too much amniotic fluid because Sarah had something very wrong with her brain, and she wasn't swallowing the fluid like she should.

Bless that doctor, he took a long time with us, explained everything very thoroughly, and emphasized a few things:
1) The extent of her brain damage may be anywhere from mild to profound. He could not tell in much detail with just an ultrasound. His instinct, however, was that she would be more likely on the severe end of the spectrum.

2) We needed to deliver at the bigger hospital that was slightly further away. It has a higher-level neonatal ICU and he wanted us there as a precaution.

3) I should expect an early delivery. The extra fluid would trick my body into thinking it was more pregnant than it actually was. (In fact, I was already having contractions by that point).

4) He recommended further testing, and we scheduled a fetal MRI for the next week, followed by possible genetic testing.

The doctor was dead-on about #1-3.

I'll admit, that appointment was overwhelming. I'd had a very healthy, normal pregnancy up to that point, and of all the problems she could have with her little body, neurological problems were what I feared the most.

As it happened, Isaac and I had planned a weekend trip for just the two of us at a local ski resort starting that evening. We went directly from the appointment to drop Mary off with some family, then went on our trip. This allowed us a weekend together of (short) nature walks, breakfasts overlooking the river, rides on the ski lifts, and lots of time to talk about Sarah. We told our immediate family members, but with such limited information we weren't sure what to expect. We prepared ourselves to raise a mentally handicapped daughter.

That weekend we happened to listen to a talk by one of the leaders of our church, Dieter Uchtdorf, titled "Grateful in any circumstances". He said, beautifully, "those who set aside the bottle of bitterness and lift instead the goblet of gratitude can find a purifying drink of healing, peace, and understanding."

Those words set the tone for the rest of the week. We decided to be grateful for Sarah, and to love her and accept her regardless of the extent of her problems. We decided to trust God, believing that He was in control.

The timing of that ultrasound, the meeting with the specialist, and our little weekend trip proved to be miraculous.

Sunday we returned from our trip, and Monday, 35 weeks along, I started having contractions in earnest. They continued, maddeningly, on and off for two days, until Tuesday evening, when they became strong enough that I couldn't walk around any more. I finally consented to have Isaac call my doctor (who is also my uncle), who told us to go to the hospital. I went grudgingly, knowing that the contractions were just going to peter out again, as they'd been doing the last 2 days. Sure enough, they subsided almost completely on the way to the hospital.
Camber in labor. Mary imitating Camber.
I felt super frustrated with my body, and we decided to just walk around the hospital for a few minutes and then drive home if the contractions didn't start up again. As we walked toward the entrance, someone greeted us. It turned out to be my uncle's partner, Dr. C., who was going to do my delivery since my uncle couldn't deliver at the bigger hospital. Now I just felt embarrassed that this doctor had driven down to the hospital to check me when my contractions had petered out again, but there was no turning around to go home at this point.

It turns out that was a very fortuitous encounter, because when Dr. C checked me, his eyes grew wide and he said, "You're at a 9. We need to GO." Sarah was breech, and we hurried to do a C-section before she came out on her own and, potentially, got stuck.

A flurry of activity followed--Isaac in white suit and blue booties, calling/texting family and doctors, IV, spinal block, drapes, uncontrollable shaking, nerves, warm blankets, Isaac's hand in mine. Baby.

I barely knew she was out, since I couldn't see or hear her. A team started working on her right away in an adjoining room, and Isaac went back and forth from her to me, giving me updates. Not breathing on her own, but beautiful. I wouldn't see her for 3 more hours, when we dragged my barely-working legs into a wheelchair and went upstairs to the NICU to visit.

On my way to the OR
Isaac's hot OR suit
It was evident from the beginning that something was wrong. Not only could Sarah not breathe on her own--couldn't even keep her own airway open--but she lacked all the normal newborn reflexes, including a gag reflex. Bad news kept pouring in. Her movements were erratic, resembling mini-seizures. The electrical activity in her brain was abnormal. The nerves in her eyes were malformed, meaning she was likely blind. The ventricles in her brain were too big. An MRI of her brain showed a missing corpus callosum, missing sections of the hypothalamus, and general lack of development.

Despite all this, on the outside, she was beautiful. She even had a head of adorable light brown hair. Her perfect little features belied all the neurological problems she had. She never cried, since she was on a ventilator, and never seemed to be in distress.

We held her for the first time about 24 hours after her birth. Aaaaaand...we cried. A lot.
Because, despite everything, we were in love.

Thursday evening we had the Meeting. All the needed tests had been done, and we met with our wonderful neonatologist, Dr. M, who had spent much of the day discussing Sarah's case with other doctors, reading the MRI report, and researching her case. She explained the following:

1) The problems in Sarah's brain looked more consistent with some kind of global injury rather than a malformation--meaning some kind of damage has occurred, rather than a genetic or chromosomal defect.

2) The damage probably happened sometime during the second trimester, halting the development of her brain from that point onward.

3) Ultimately, Sarah's condition was not survivable. The damage had been present for long enough that there was no hope for recovery of function from this point onward. And unable to breathe, swallow, see, hear, or move well on her own, she would have poor quality of life should we choose to prolong her life.

I think Dr. M, who had been present at Sarah's birth, knew pretty much from the beginning what the outcome would be. She had determined from the beginning to give us the best experience with Sarah possible, while hinting at the severity of what she saw and never giving us false hope.

We knew this was coming, and hoped and prayed that the decision we would have to make that night would feel clear. It did.

In the end, we all agreed that taking Sarah off the ventilator and allowing her to pass away was the best course of action. I was fine in this conversation up until this point. Then I started plowing through the tissues. Because obviously I wasn't going to not be there while she died, but that meant I'd have to be there when she died. It was a task that felt utterly overwhelming.

We decided that Saturday would be the day. My family all drove into town on Friday; Isaac's family is already local. I was discharged from the hospital that day as well. I tried not to dwell too much on the thought that I was leaving the hospital without my daughter, while I listened to other babies crying in rooms near mine. I was once that mom. I'd had Mary, she was healthy, and I brought her home with me. I had that experience. This time I was going to have a different experience.

Friday night we drove back to the hospital for one final visit with Sarah. Her nurse, knowing that I'm also a nurse, offered to let me do some of Sarah's cares for the evening. So I awkwardly took her temperature (keep in mind, I always took care of adults, never newborns), changed her diaper, weighed her, and gave her a bath. Isaac and I both held her for a long time as well.
Giving Sarah a bath

That night is one of my best memories of Sarah. One of the hardest things about having a baby in the NICU is that someone else is generally your child's caregiver. I showed up for visits, but I was never the one taking care of her. I longed to just feel like her mom. That night I had my chance. Also, something changed in us during our time with Sarah that night. Usually visiting her just made us sad (my personal habit was to burst into tears every time I saw her), but during this evening, the grief dissolved into peace. I started to think that maybe, maybe, Saturday would be okay.

There's something else about Sarah that I find hard to explain. There was a spirit about her. She didn't feel like less of a person to me because of her neurological problems. Rather, it felt like she was too good, too pure to stay here long. I am convinced that she was aware of us, despite her sensory limitations.

Saturday morning we dressed Sarah in her beautiful white blessing dress, after disconnecting her from all tubes except the ventilator. The NICU had a large room set aside for our purposes that day, where we met our families. Isaac gave Sarah a name and a blessing (a tradition in our church), and then all of our immediate family members took turns holding her.

A photographer drove over an hour each way to volunteer her time to take these beautiful pictures of us with Sarah both before and after we took her off the ventilator (there's a national organization of photographers that volunteer for things like this). Bless her.
Mary meeting Sarah for the first time. This was just before she poked Sarah in the eye and said, "Eye?"
She has newborn anatomy down pat.
Me and my girls.
Then everyone left us alone, except a few hospital staff, and the time came that we'd initially been dreading. At first, when we decided to take Sarah off the ventilator and let her pass away, that seemed like the most traumatizing thing I could possibly imagine. That morning, though, a feeling of peace permeated the room. I almost felt a sense of anticipation, because we were sending her home. It felt right.

One of our fears was that she would linger for hours. She had been taking a lot of breaths on her own, beyond the help she received from the ventilator. Dr. M prepared us for the possibility that, if she kept breathing well on her own, we might have to wait for her to be overcome by her secretions before she would succumb. We sedated her slightly beforehand so she wouldn't struggle too much or become uncomfortable with the process. But, as it turned out, she stopped breathing almost right away. She didn't have enough strength to keep her own airway open without the ventilator in place.

It took maybe 45 minutes to an hour for her heart to stop completely, and during that time we held her, admired her little face without the ventilator, and told her we love her. By the way, I thought my tear ducts would have dried out by then, after the week we'd had, but those things just kept producing! Remarkable.
I decided to leave out the pictures where we're crying.
Didn't want to make it awkward for you all.

What I remember most, though, is the feeling of peace. Nothing about the experience seemed horrible. Sarah's passing was beautiful and serene, as was her life. Reflecting back over our time with her, it felt like a privilege. Back to the gratitude thing--I felt profoundly grateful for our time with her, and to God for blessing our family so much with such a beautiful person. In our church, we believe that families are forever. That belief became very real to me as she left us that day. I felt--and feel--an assurance that we will see her again.
I don't want to downplay the grief or the sadness of sending this girl back home so soon. But Sarah's life was a string of miracles, and the last one was this: that day, we left the hospital smiling.