Going to the NICU (Cohen Part Three)

As we loved on our little one we noticed several times that he was becoming bluer by the moment. Several times while we were waiting to be moved to the mom/baby floor we called in the nurses and specialists, each time they gave him a little oxygen until his color was slightly improved and left, assuming all was well. Finally after midnight our nurse had the time to move us the other floor; we kept pressing and telling her that he didn't look right, he shouldn't look so blue, but she (a nurse with only a few weeks on the job) assured us that some babies just look a little "ashy."

We were deposited into a room on the mom/baby floor and immediately expressed our concerns to the new nurse assigned to us. She was calm and sweet said she'd have someone else help her examine him at the nurses station. That should have been my first clue that she knew something was wrong; our first two boys were never taken from my sight during our entire stay at the hospital, but I was exhausted and couldn't read the signs. While the baby was with our nurse, Chris and I said our goodbyes. He had to get home and start dehydrating my placenta (that takes a real man!) and he had to start his first day for his new fire department and 6:00 the next morning.

More time had passed than I could stand when someone entered my room. She was was one of the assistants that had been with us just after Cohen's birth, the one who had nodded her head when Chris asked about Down syndrome. For some reason her face has never left my mind. She was young, probably in her middle 30s, with a dark complexion and features that suggested she was of Indian descent. She was so pretty, she looked exactly like one of the doctors you'd see on some TV medical drama. Her eyes spoke volumes before her mouth uttered the words, "your baby is sick." I can't remember what else she said, only that she sat on my bed as I wept the hysterical tears of a new mama separated from her baby. She was so compassionate, she answered my questions, although I'm not sure how she understood me I was crying so hard. All I really understood at the end of the conversation was that there was something wrong with the baby's oxygen levels and that I could visit him in the NICU in an hour or two.

I called Chris; he came back to the hospital. I cried and pumped breastmilk until I was allowed to go visit my brand new son. His room was dark, lit only by computer screens. We were greeted by the constant beeping and occasional alarm of his monitors. And there he was, tangled in cords and tubes, blood still fresh on the IV lines they had inserted in him. Helpless.

A doctor took us to a conference room and explained that he had a hole in his heart and that the pressure in his lungs was so great that blood couldn't get through to send oxygen to the rest of his tiny body. He explained the best and worst case scenarios. He explained so many things, too many things. Every word he said seemed to knock the breath out of me. He was kind and patient, but I just kept repeating in my head, "No more! There can't be anything else, I can't handle it!" I stopped listening and let Chris absorb it all for us.

The pain felt like more that I could bear. I was allowed to briefly touch his little head before I returned to my prison of a room. The mom/baby rooms seem so happy when you have a baby to hold, to nurse, to love; but when your arms are empty those rooms are a prison. You can hear the cries of other sweet babies nearby. You have to watch happy visitors, arms full of flowers and teddy bears, anxiously ask the nurses where to find the newest addition to their families. And worst of all you have to meet the eyes of the other mothers, the eyes that are exhausted and content, they look at you expecting to share the camaraderie of this great and difficult task of mothering a new one. It was terrible.

Pumping became my mission in life. It was the only thing I could do for Cohen. Every 3 hours 24 hours a day I pumped. I sat in the baby's room in the NICU and I pumped. And I cried. Very little was accomplished that first week without tears involved.

Cohen- Part One

You know those moments in life where you begin to think "Hey, I've got this." Things are going well, life isn't easy, but manageable and joy isn't too hard to find if you just look round. That's where I found myself last February: Chris was done with Fire Academy and looking for a job, I was waiting tables evenings and weekends to make ends meet until he found a job, almost all of our meals were made from scratch, I had a daily, weekly, and monthly schedule for everything and (though I wouldn't have admitted it) I was generally feeling like super-mom.

That's when I found out I was pregnant (surprise!). I was pretty upset at first and really nervous about Chris' job situation. After the initial shock wore off I bucked up and thought "I can do this!" Super-mom reappeared for about a week... until morning sickness hit. It was worse than I had ever experienced! That coupled with a crazy-hormonal shift sent me into a tale-spin of depression and exhaustion. Luckily I never threw up on anyone (or their food) while I was waiting tables.

Mid-way through my second trimester my energy returned. Chris got hired by a good department in a not-too-far suburb. Things were going well. Something about this baby felt a little different, so I was just sure I'd be having a girl. I had both of my big boys at the hospital with a midwife we loved, but had always wanted a homebirth, so I made an appointment with the midwives who attended homebirths in our area. Anticipation mounted as I struggled back and forth about whether or not I wanted to know the gender at our ultrasound. Chris won out and we decided to find out. As soon as they got the picture on the screen we saw it: A clear dead on shot of our little baby's boy parts. I swallowed my disappointment and pride and began making plans for another rowdy boy.

Later that week I received a phone call from one of the midwives at the hospital. She told me that she wanted to discuss my ultrasound. I knew something must wrong, as I had never "discussed my ultrasound results" with either of the other boys. I sat down immediately, bracing myself for the worst.
"Your baby has BLAH BLAH BLAH, BLAH BLAH BLAH, and BLAH BLAH BLAH. Each of those things can be an indicator of down syndrome on it's own, but with all three it doesn't look good." She encouraged me to get a blood test that would help narrow my odds and told me that it would be a good idea to get an amniocentesis if the odds were high.

I told Chris and we cried for hours. We mourned the loss of the "normal" baby we had expected. We cried for the years we thought we'd have alone together since we had had our children when we were young. We wept at the thought of burdening our other children after we were gone. But mostly, I think, we cried with guilt for feeling the way we did. We loved our baby and we wanted to accept him for whoever he was, but we both really hoped that he didn't really have it.

I did the blood test, hoping that it would erase all of the fear that had grown in my heart. The odds for a woman my age to have a baby with down syndrome are like 1:1100, so I was expecting my results to reflect that. They didn't, 1:40.

We cried some more.

The genetic counselor called. The results from the blood test combined with the results of the ultrasound put us at 1:13.

I laughed and cried at the same time when I hung up the phone. Somehow I knew that he had it, even though I didn't want to admit it.

I did a lot of research- part of me getting excited, realizing that an extra chromosome isn't the end of the world. Every time I heard of someone with Down Syndrome doing something wonderful I would fly. But every time I saw a list of the health concerns associated with Down Syndrome I would sink. My days were a mess. I put into words the real juxtaposition of emotion that I felt. The heart and breathing problems that are often present in newborns with Down Syndrome made me give up me dream of a homebirth in order to insure we were near a good NICU.

I decided against the amniocentesis, even though it would have given us a definitive answer to whether or not he had Down Syndrome- it had a miscarriage rate of about 1:100 and I didn't feel like playing the odds.

One of the things that was noted in the ultrasound was a possible problem with the kidneys, so we had to go for ultrasounds every 4-6 weeks. It was wonderful! Just when I'd be feeling most worried or fearful I'd get to go into a dark room and watch my precious one play, suck his thumb, and squiggle around. I was able to his growth from month to month and enjoy him for what he was: a baby.

So we waited...

a year and a half.

It's been almost a year a a half since we left Asia to clear our heads and "figure things out." We're settled, I gave birth to our second baby, we bought a house, and have a new career on the way, but my head is no clearer and I've figured nothing out.

A good friend recently told Mr. Reliable that he has felt that his time in the ministry is a race and he has always vowed to finish well; not knowing wether that finish line is at the end of his life or just around the corner. Mr. Reliable later explained his feelings to me this way:

"It's like I was running a marathon. I was doing well, keeping a steady pace the all of the other runners, not struggling to keep up and not running far ahead, just running well. Then, when I closed my eyes for a second it was gone. Not as though I had finished the race, but like it simply vanished. There was no trace of the race, so sign of the other runners, and no markers for the course. I couldn't find any evidence of it at all."

He put into words exactly what I have been feeling for the last year and a half. I just keep hoping that as we move on with life, we'll find more than just proof of some race, but maybe we'll stumble onto the... I was going to say prize, but that's not really what I'm looking for. The truth. Maybe we'll stumble onto the truth.

finding new jeans

I've been thinking about growing pains (the actual process, not the show) About how it just kind of hurts to change and grow; and how sometimes the ideas you've worn for years just don't seem to fit anymore and not only that, they're more worn out than your favorite pair of jeans (you know, the ones that have holes in all the wrong places, but you just can't toss). And where do you go to find new ones that fit anyway? The new ones are all too low and they make you look like you have a serious case of mom butt.

I can't contemplate anymore tonight. I'm going to watch lost on hulu and pretend that my jeans fit just fine.

moving sale

A month or so ago, I helped my grandma with her moving sale. A man came in and was standing in the kitchen, obviously wanting to talk, so I give him the necessary half-smile to acknowledge his presence and the conversation begins and goes something like this:

Man: "Well, I just got home from a retreat, so I'm wearing my casual clothes"

I nod my head

Man (in a voice of importance): "You know, a pastor's retreat. It was good. Then my wife wanted to take me around to all these sales"

Me: "Oh"

Man (with pride swelling in each word): "We like to go to these sales to buy things for the church. Everything we buy is for the church. Well, and for my grandson and his new wife. I married them at the church I got married at."

Me (in the flattest tone I could utter): "That's nice."

Man (as proud as a man can get): "Yeah, they didn't want anyone else to marry them, I'm a pastor, you know."

That is when I exited the room and left him standing there by himself.

Leaving was the ONLY thing I could do!!!

He then entered the living room to spread his "christian love" to the rest of my family and the shoppers.

I can not figure out what the man wanted from me!?!? Did he want me to treat him special? Give him a discount? Ask him to pray for me? Beg him to anoint the house with oil?

I don't know what he wanted, but I sure do know that his behavior has caused me to cringe at the idea of being labeled a christian.

Jesus was kind, humble, and loving. And love is not boastful, proud, or self-seeking. Jesus is somebody I can follow.

PS I just love this picture from the city we used to live in's celebration of the "Year of the Cow" Yes. That cow is mooning you.

***edited to add the (emotions)

hope

3 things in particular have given me hope lately.

When I published my last post about my questions I was really nervous about the response I might get, but I really wanted an outlet to be real and say what I was thinking. And I am so glad I did. Several friends have shared that they are in the same place and many more, who may not be the that place, just gave me the freedom to be real and to wrestle through this.

I recently read a book called "A New Kind of Christian" by Brian McLaren. It was really good. It asked a lot of the same questions I have been recently facing and it did so gracefully, sans the twinge of cynicism that my questions have been coming with.

I also saw the video below a couple of weeks ago; it is possibly the most beautiful and hopeful thing I have seen in a really long time. I really identified with it.

When the country we lived in hosted the Olympics, they built walls of lovely fake buildings and homes to hide the slums that could be seen from the highways and trains. Tourists were satisfied by the fact that they didn't have to face the reality of poverty, even though they knew it existed. I find hope in the fact that I'm not the only one who can no longer live with the paper-thin wall of religious answers constructed in front of the slums of reality. If there are people writing books and making films like these then there is a movement, and on the edge of the movement is the possibility for real, lasting change.

when i started asking questions

I grew up in a fairly conservative home: went to church camp every year, learned to memorize religious acronyms like f.a.i.t.h., and could beat any "sinner" over the head with the bible.

A few bumps in the road mellowed me out a little bit: I mean, I still knew that I was right and you were wrong ,but at least I wasn't as verbally aggressive.

The last year absolutely destroyed the framework of my faith. Mr. Reliable and I had 10 deaths in the course of a year, including the murder or some of Mr. Relaible's childhood friends. Then there was a mentor that we were sure God was going to heal, and we knew that even if Orv did die God was going to raise from the dead. So when he died, we prayed. We waited for God to do what we knew he was going to do for us. And He didn't. Orv was gone. And with him went our confidence in all we knew. We lived on the opposite end of the world from our friends and family, so as our pain mounted we began shutting down. I hid and Mr. Reliable got angry. The winters in our area were cold and I was caring for a baby and pregnant, so no one expected me to go out. Poor Mr. Reliable and the sweet little local woman who helped me this our house became my contact with the outside world. We were miserable. We were full of the questions that your not supposed to ask, you know, the ones that real christians don't ask. Like, "Why do really horrible things happen to people?" and "Do they really go to hell to suffer forever after they have lived a miserable existence?" among many others. Every story we read online about child soldiers and women bred to be prostitutes, every little old beggar woman on the street corner, and every time we saw a young illegal child (we lived in a country were population was restricted, leaving an entire population that could never legally get jobs, medical care, or a legitimate lifestyle) we were reminded of our questions. We would get well-intentioned emails from friends telling us just how proud they were and how they wished they could do what we did... and our questions grew. Our love for the people around us was beginning to drown in our every growing sea of questions. So we did the one thing neither of us expected: we packed up our things and left. Not to go to a more remote area or a more needy people, no, nothing so exciting, we took our 5 suitcases and a couple boxes containing all our earthly possessions and settled in the American suburbs.

Here we have the freedom to ask our questions without quite the same amount of pressure. So far, through my wonderings and questioning the only thing I feel confident about is Jesus and the things he said. I don't know about heaven and hell, about why people suffer, or about why most christians are just so damn mean (but that's a question for another day...). But I know that I like Jesus, and I want to do the kind of things I saw him do.