Saying Goodbye

Today was Enzo's last day. It was officially diagnosed yesterday afternoon. He was born without kidneys and could not survive more than a few more days. Amanda and Carmelo were given the option to try dialysis but no baby with his condition has ever lived more than a few weeks. They had to make the call and stop treatment.

This morning my Mom and I scrubbed in at the NICU to carry my four-year-old niece, Ingrid, into a room for the one and only family photo my sister will ever get. Of course, she had to go potty just as the staff was gathering the photographer and the babies. I sat in a bathroom with her. Her fancy picture dress spilled out around the toilet. She was wearing pink Converse and her hair was messy. She wouldn't let us brush it. We played "I Spy" and talked about her stuffed cat, Millie. I remember looking into the mirror and thinking, "This is it. It's Enzo's last minutes and I am playing word games in a bathroom with a stuffed cat."

They instructed us to put Ingrid in a gown and a mask. She's four and normally defiant when told that she has to do anything. She must have understood it was a a big deal today. Her mom and dad had already explained that one baby was so sick he would never come home. She did whatever we asked. In the NICU, we used box of copy paper to act as a stool. She scrubbed in at the big foot pedaled sink. She had her own soap pack and soaped up to her elbows just like the grownups.

We all met in a special room where a photographer took pictures of the family and the babies. Ares was healthy enough to spend a few minutes in the room. He was such a contrast to Enzo. Ares was pink, almost red in color. He cried and cried but was quiet while his mama held him. He moved. He was feisty.

Sick Enzo was larger than healthy Ares. I kept forgetting that Enzo was baby A, born first and a few ounces larger. Enzo had been sedated. His mask had pressed his lip crooked. His head had a flat back. He was bloated with the fluid and waste his body couldn't excrete. He was pale and yellowish. He looked soft, like skin that has gone pruney in a long bath. He was still beautiful to look at - tiny and perfectly formed.

My sister got to hold her first born son just once while he was alive. He took a few loud breaths in that room and that left me sobbing even more. Mom and I were useless for a few hours. We stood in the corner, flowing with tears and boogers.

Ingrid, Grandma Katherine (mom)and I left the room to spent some time with the children's grief counselor as Amanda and Carmelo held dying Enzo. The counselor gave Ingrid a book about expecting a new baby and getting an angel instead. Mom (Grandma) read it to her. She drew pictures and colored. She talked to the counselor and begged for McDonalds. She giggled and expressed interest in the baby angel in the book. We talked about Enzo watching over her.

Later, after he was pronounced dead, I held his body and he was so incredibly beautiful. The wonderful NICU nurses pulled three rocking chairs around his bed. Amanda, my mom and I rocked him and passed his tiny body around. He was only three pounds but he was soft, warm and so perfect to look at. He had so much dark hair. Just like Ingrid did at birth, he had furry patches on his face. His fingers were puffed up, but they were tiny and looked just right. I held his hand. I sang to him.

Later, after his body was taken away, we stood around Ares' bed and talked. I am so sad but hopeful for little survivor Ares Enzo (who was given his brother's name for a middle name) who is eating, pooping and breathing on his own at just over 3lbs.

I have never felt such raw pain, not even close. I would give anything to change this and my heart weeps for my baby sister whose pain I cannot imagine.

Heartache Keeps Coming

Monday was a magical day for our family. My sister Amanda gave birth to her twin sons. We had remarked all along that it was a miracle that she would have spontaneous twins. Amanda has wanted to be a Mom all her life. I was delighted that she was pregnant again and squealed when I learned it was twins. She deserved twins. She loves babies to pieces.

Her pregnancy was tough. She had a preemie once before and these twins shared a placenta. They were very high risk. She had up to three doctor's appointments a week. She had weekly ultrasounds in her final weeks.

She began dilating early and needed medication to stop labor. She was in the hospital at 29 weeks. They boys had medicines to mature their lungs and prevent brain bleeds. She got released and went right back in to deliver a day later. On Monday, July 25 just after 7:00 am, she delivered two boys, three pounds each at 30 weeks.

My family drove to the hospital and rejoiced together. They seemed just fine. They would need to stay in the NICU for a while. They were so early that no names had been chosen. The hospital room chat was about names and gossip and breast feeding - happy new baby topics. We were so happy. My sister asked that we wait to meet the babies in the NICU. She couldn't get out of bed for 12 hours after her c-section and wanted to be the second person to meet them. Her husband, Carmelo went to meet them and brought us video of the boys. Other than the tubes and wires, they looked perfect. We were happy with that. We'd have their whole lives to hold them and love them.

The first sign of trouble was that afternoon. A doctor arrived in Amanda's room with a release form. He was very blunt; Baby A was doing poorly. One of his lungs had collapsed and his lungs weren't functioning correctly. He needed a blood transfusion immediately. He has two chest tubes and a machine breathed for him. The doctor told my sister that he was very sick but should survive.

The next day was worse. By now, the babies had names. Sick baby, Enzo, was not any better. He survived the transfusion but was declining. The other baby, Ares, was healthy and thriving. He could breathe on his own. The doctors came up with a theory that fit his problems. Enzo, they feared, had no kidneys. They performed an ultrasound and couldn't find them.

Having no kidneys at birth is called Potter's syndrome. If you google it, it's unbelievably sad. Potter's syndrome babies have no amniotic fluid. This causes all sorts of problems and they die before or just after birth. Their bodies are mangled without the cushion of fluid.

Enzo didn't have that. He didn't seem to fit the pattern and didn't have the visual symptoms, so we held out hope for another doctor to find kidneys in his body and somehow explain his problems. He had less fluid than his brother but still plenty. He wasn't mangled.

This morning was Thursday. Another doctor tested the babies. Enzo has no kidneys. His diagnoses is fatal. His twin, Ares, has only one kidney. Somehow Ares pumped enough amniotic fluid for two babies with only one kidney. He supported Enzo and let him grow. Because of this, Enzo might be one of the healthiest Potter's syndrome babies ever. His doctors have offered Amanda and Carmelo the option of keeping him on dialysis. If he lived a year and a half, they would put him on the organ donor list. He would be terribly sick the whole time. In fact, his nurses winced when they heard this option. Everyone recommended against it and said he would most likely die anyway and suffer.

It was an easy but horrible decision. Tomorrow, they will gather their four year old daughter and their twins. They will unhook Enzo and hold him for the very first and only time.

I cannot imagine the pain they are going through. A month ago, we were marveling at the idea of two babies. Where would she put them? What would she do? Now, we are mourning. My baby sister is so strong but I wish I could steal this pain from her. I wish I could go back to the dozens of ultrasounds and shake the doctors, "Why don't you see this? He was no kidneys! Prepare her now!! Why does she have to find out at birth? Why does she have to meet her son and believe he will live?"

I met my nephew Enzo today. I opened the door to his little pod and I told him I would always love him. I think a sang a little song.

The Naked Texter

So, I read The Gift of Fear. I believe that you should not engage with craziness. I believe that attention seekers and drama queens will quickly learn to move along if you don't give them the attention they want. On a normal day at least.

The day of the naked texts was not normal. It was the second day of bleeding. The day the doctor's office was to have blood result that would show if I could possibly still be pregnant. I was a wreck of boogers and tears.

That was the state in which I discovered a new text message on my phone. It was from a local number that I didn't know. I opened it to find five photos of good old fashioned home porn. Some guy naked, then naked reclining on a couch, then close up on the junk, then seated, then fully clothed and standing by a grill (wtf?).

My mental state was fragile and I did not recognize this person but I was pissed. I sent back a short reply calling him a fucking asshole. He wrote back, "Who is this?"

Shouldn't you know who you are texting? Maybe double check the number? These were the things I thought to myself but didn't type. I realized that engaging this genius in a conversation was a bad idea so I didn't reply. That night I missed a call from the same number.

I tried to think like the caller/texter. Obviously, he did not intend to send those pictures to me. He probably got my nasty reply and then wondered if he dialed correctly, so he called and hung up when my voice kicked in on the message. I felt assured that I had figured it out. Now he had figured out it wasn't me he was looking for and would never call again. He was probably so embarrassed. At least that's what I thought.

Two weeks have passed and he called my phone tonight. No message left. That bothers me. A lot.

Officially Over

I got the news that my hormones had gone down. I have miscarried or a I am, semantics. I have handled this final news really well so far. I think that it's because I accepted it as fact a few days ago. I knew before the tests told me just like I knew before I looked at the pregnancy test. Pregnancy is a whole lot of hormones to not notice. When they leave, you notice that too. Oh, and the blood. That's pretty obvious.

So, my boobs don't hurt. My upper abdomen isn't sticking out with bloat. I can enjoy this third cup of coffee and pretend I enjoyed the vodka I drank last night. It's still very hard.

I haven't really gotten to the "what do I do now?" part. I know that I go to work on Monday. I know that I delete the pregnancy email updates and the bag of thankfully unpurchased maternity clothes.

Then on Tuesday, what do I do then?

And poor Bill. He's just heart broken and not letting it show. I can see it in him and I wish he'd cry and let it out. I wish he'd show the reaction I got when I told him we were pregnant. I know he needs to release it.

That's not my place. I ask but I don't pry. I share and then smile to let him know he can share. He'll open up eventually. I've seen it happen.

Hours after shrugging a reply, lying in bed, he will say in the softest voice, "Remember what you asked me today?" and then he'll keep going.

I always turn to face him and watch his profile in the darkness. His eyelashes flutter and he puts together his words and I remain quiet. He will talk until he stops and then we'll both go to sleep.

I dislike the phrase "man of few words." It seems so cowboy or savant. "He's not stupid, he's just quiet." I sometimes forget that Bill doesn't talk much unless he's around friends. He's a quiet worker. He waves to neighbors. Most people like him but few know too much about him. Even quiet, everyone can tell he's sharp. He's smarter than most people I know.

He's had so much piled on him and he turned out loving, kind and thoughtful. His mother abandoned him long before she physically slipped off and left him with his grandparents. Of course she waited long enough to marry a guy who beat the kids for a while.

His father was gone before he remembers. It was the bad kind of gone too, on the streets drinking. His dad turned 18 in Vietnam and had two kids in the suburbs before 24. Bill never saw him after his early childhood. We now know that he died a few months before we looked for him. Lung cancer, VA hospital.

Instead of being hardened, Bill has become the hardest-working and most dedicated man I have known. He can't wait to right the wrongs of his childhood but his desires have no hint of bitterness. He doesn't care to show anyone or prove anything. He just wants to settle into the type of happiness he's never known before. He wants a baby as much or more than I do.

I know that it isn't my fault but my heart aches that I haven't been able to give him what he wants. I grieve the loss and feel a sense of failure. This is the gift I have wanted to offer him for so long. I want to do this with him and watch him meet our child.

I know this isn't the end. We will be parents. It may take more time. It may take adoption or medicine but we will get there. He's too good of a man not to be a father.

miscarriage

Well this is terrible. Mom called it death by a thousand paper cuts.

We were pregnant and thrilled. Then I bled just a little bit and then I bled more. Then I went to the hospital.

Never have a problem the day before a holiday weekend. You'll end up like me, four days later and just getting test results. This is my summer vacation. No work July 2 through 10. I had plans to baby shop and go to the beach.

I spent the 4th of July bleeding into a maxi pad and forcing myself to be ready for the bad news. I called my insurance company and the hospital and got answering machines all weekend. I spent this afternoon getting another ultrasound that shows no baby. No fetus. No heartbeat. The tech kept asking if a "felt OK." Are you kidding me, lady? I am grieving the loss of a baby that never existed. I don't care if you poke me through the organs with that stupid wand. Find out what is happening. I can pee later. You can touch my thigh. This moment is the very least of my worries. I tell the receptionist I'll take any appointment, "I'm on vacation." That's a cruel reality.

I never knew how long days could be when the lab is closed and the ER doctor said the horrible words, "fifty-fifty." What the fuck is fifty-fifty? I wish they had said, "Your pregnancy is certainly over. I am very sorry." Classic under promise, over deliver. My doctor's nurse scheduled an appointment for Thursday to do final tests and decide what to do next. She doesn't sound optimistic. So, that's a full week to diagnose a miscarriage.

This is the worst vacation ever.