The Growing Ache

I'm surrounded by people. And I feel so very lonely. 

Our house has had a revolving door these last 3 weeks. It's been wonderful meeting new people, seeing old friends, and embracing in extra long hugs. 

But the ache is growing. 

Each day that passes is another step closer to the birth and death of Gabriel. And yes, there is a chance that death will precede birth. There's a chance he'll come next week, or maybe a month...or possibly 2 or 3 from now.

We wake up emotionally drained, but still needing to face the demands of each day. I don't even want to think about what life would look like without our community right now, but thankfully I don't have to. The meals, the prayers, the texts, even the tags in funny Facebook posts, they bring joy. Our lives are currently shadowed with grief, but sunshine does peek through the clouds.

I answer what feels like a million questions each day (most of them from my 4 year old on what kind of snack she can have at any given moment!), but so many of them about science and medicine from others. Can they do anything? Why can't they fix this? What exactly is going on?

Is there hope?

My answer just depends on who I'm talking to. Medically, no, there is no hope. There is nothing that can be done to save Gabriel. Miraculously, yes, I believe God can heal him.

But that doesn't mean I think He will. And I'm not without faith. There is a very big difference in believing God can versus believing God will. He can but He may not. That is something I've accepted.

Our first round of genetic testing has come back and it has told us nothing. Those who are unfamiliar with these kinds of tests, with our limited knowledge of our own bodies, they struggle so much when I tell them I'm not surprised. Not having an answer actually brought me a sense of peace after Sam was born, because I was happy it wasn't a definitive, "No, you shouldn't try again."

Now we know we won't be able to try again, but we still don't have an answer or a name for the condition that has affected two of our boys. More tests are being run which may or may not tell us more. Either way, testing will not help Gabriel.

Some have been afraid to ask what must seem like insensitive questions about Sam and Gabriel's diagnoses. I have always welcomed them, so maybe it would be good to explain it a bit here. So far both boys' ultrasounds have been identical (we go in for another next week), so I will explain everything we know about Sam.

When we first went in, doctors immediately saw a problem with his kidneys and heart. They couldn't see definitively what was wrong, so sent us up to see specialists at the University of Michigan. During our first ultrasound there, they told us a number of things. His kidneys were polycystic and nonfunctional. His bladder would never fill because every ounce of fluid he swallowed would be sent to the kidneys where it would be stored and they would continue to grow in size. He had very low amniotic fluid, which is necessary for growth and development. They told us he had clubbed feet and that he would likely suffer from multiple physical deformities because of the lack of space in utero. His heart and stomach were located on the right side of his body (which apparently isn't all that uncommon much to my surprise!) But a subsequent echocardiogram revealed seven heart defects. SEVEN. My first question after that appointment was to ask how it was even beating. 

The kidney function and heart defects are what I always mention, but Sam did not die because his heart just stopped and his kidneys weren't working. His cause of death was written on the box of ashes we were given after he was cremated: pulmonary hypoplasia. You see, amniotic fluid is essential for the development of the lungs. It's needed for that "practice breathing" you read about in normal fetal development. His lungs were so very immature that he simply stopped breathing, and his heart stopped beating. 

But can't he be put on a transplant list? 

Oh, how I wish. But no. Our doctors with Sam explained to us that many heart defects are fixable, but that babies who undergo heart surgery need healthy kidneys. Kidneys are also in a sense, "fixable," but not without a healthy heart. And with both surgeries, healthy, mature lungs would also be an obvious necessity. We just cannot open up a newborn and replace his heart, both kidneys, and lungs. It's too much. It's too painful. It will not work.

Sam took shallow, phlegmy breaths for the time he lived. We heard him take one about every 30 seconds, and eventually they stopped. His death was very peaceful in the sense that we just held him, loved him, and let him go. We had no intervention, no ventilator, no form of life support. It would have just prolonged the inevitable. 

Early on they told us that with low amniotic fluid levels, I would likely go into labor much earlier than expected. Usually when a baby runs out of room, that signals the body that it's time for them to be born. He ran out of fluid around 24 or 25 weeks (I can't exactly remember), and they told us "it could be any day now." We held our breaths every day for the first week...and each week after that point our breathing got a little easier. I remember praying to God for the miracle that Sam would be born alive and that we could hear him cry. We were told that both were unlikely. Sam was born just shy of 36 weeks. He lacked the physical deformities we were warned of, and he did let out a little cry.

He was born alive. And I'll never forget that teeny tiny cry. Miracles in my book. 

Gabriel's story is already playing out the same. As much as we are praying for the miracle of bringing him home, we are preparing for it to not happen. Once again, we do not know how long this pregnancy will last, and are holding on to each and every moment we get with him. We have been surrounded by people who love our family, who love Gabriel, and that is a comfort. 

But no matter how much love and support we have, the loneliness....the ache...it grows. Because no one, not one person can give us what we want most in this world.

To bring our baby home.