Going Under

I'm tired. I find myself staying up too late and having trouble falling asleep and being woken in the wee hours by my early bird. On a good day, she snuggles in with me and we sleep for another hour or so. On my less lucky days, the coffee pots fills and empties early. Last night Kathleen slept out in the tent with Brian and I stayed up until 11 making salsa and sofrito because I had piles of tomatoes that were going to go by fast—and because I like moving about the kitchen with no one tripping me up or interrupting me. I was efficient and productive, but by the time I showered and read a few pages to settle down, it was midnight. Then up at 5:30. I've been doing this too much lately and it's adding up. I'm tired and when I'm tired, everything seems a little harder.

Today we were trying to play some of the video we've taken of Kathleen. Brian put in the unmarked tape that we thought was the right one, and there was Henry, lying on the play mat. He's propped up on a boppy and I'm waiting for him to find the toys hanging over him—something he had done just before I turned on the camera. Eventually his arms start swinging. He bumps into one, looks toward it. I cheer. I had such hopes for him. Even as I let go, or tried to let go, of my expectations and ideas of normal, I saw such potential in him.

His arms fall back to his sides. His chest heaves as if he has just sprinted some great distance. You can see it rise and fall even through his clothes, and I want to readjust the oxygen cannula that has slipped well below his nostrils. He was presurgery. I was scared and waiting, but believing he was going to be okay. You can hear it all in my voice—the hope and anxiety and pride.

I forget sometimes about this part, the home part, the waiting for surgery part, because the post-surgery part of his life was so intense. And then it ended. It kind of pushes a lot of stuff aside.

We turned off the tape, and I tucked that all away and went to a Labor Day cookout, where I spent the whole time helping my girls in the pool or trying to keep them out of it.

While in the water with Kathleen, I couldn't help but overhear the conversation around the side of the pool about two other kids who had had some hospital time. The voices grew more and more indignant as two moms talked about the struggle to find a vein in their kids, and I felt the frustration and anger and pain of every needle stick I witnessed, every one I held Henry for, every struggle for an IV I watched. I remember his red face and silent cry during one particularly difficult effort to get a line in. "Did they ever have so much trouble they pulled out a drill?" I wanted to ask. But I didn't really. I didn't want to try to one up them. I really just wanted to run away so I didn't have to hear or remember, but I couldn't get Kathleen out of the pool. And I wasn't going to leave her. She'd already gone under once.

Yes, despite my efforts they both went under. I didn't see Kathleen (bad mom, not right there), but I was feet away from Elizabeth. She was with me, but Brian was in the pool, and we miscommunicated. She leaned forward and fell and half floated and went under and half floated and sank down again, and I tripped to the side of the pool where Brian was already scooping her up.

She was fine, barely sputtering, but I began sobbing. I sat there hugging her and crying for the near miss and the split second that can change everything and the relief that she was okay. I cried for that me waiting for my baby's surgery and for the boy who can't worry me any more.

It was a long day, a stressful day, a day when I missed the baby who lay on the mat as I rooted for him to find his toys and for the about-to enter-kindergarten little boy he should be today. There are days when that missing is simply part of my story, something I sometimes carry without really paying attention too, but there are days that missing still feels really heavy and I want to put it down and leave it behind. Today was the latter. The heavy days still surprise me sometimes.

The countdown

Just over a week until this baby is born.
If all goes as planned.

I feel the need to add that disclaimer. I usually say, "December 15—or early if the baby has other ideas," but lately I've been worried that it might be later. I've been fighting off a chest cold/asthma flair up. I feel like I've turned the corner, but I'm not 100% yet, not even 90%. I'm tired and coughing more than I'd like, certainly more than I'd like to be doing after abdominal surgery. Then Kathleen woke up with her nose running all over her face and had a fever by mid-morning yesterday. No fever so far, but green snots galore. I'm wiping her nose constantly and washing my hands obsessively and eating chicken soup and drinking orange juice and hot tea with honey and waiting to see how I feel a week from tomorrow.

My back, which bothered me since the earliest days of my pregnancy, seems to have decided it's okay. Aside from the coughing, I'm breathing easier. Sleep is elusive, though, but I'm trying to rest when I can.

That's the physical.

As for the emotional, that seems to be mostly okay too. I have moments of panic—that they won't do my c-section as scheduled, that the baby will need to go to the NICU and they won't let me in because of my cough, that Brian will catch something from one of us and won't be able to be there, that my low weight gain that my OBs have commented on but aren't worried about is actually a sign of something bad . . . mostly these thoughts stay in check except in the middle of the night when our demons are strongest.

December hasn't really hit me this year, but perhaps that's because my calendar ends on 12/15. I can focus on that mid-month date. I can spend less energy on the lead up to 12/17. There is no pressure, internal or external, to have a holly, jolly Christmas. I'm having a baby on 12/15, whatever I do for Christmas is enough. I can cut myself a little slack this year, as I did the year Kathleen was born. Other years, though, I don't want it to be like this. I want to put up a tree, bake cookies, sing carols, wrap presents, feel the magic and the joy and the anticipation.

This year there will be only Henry's little tree, a few presents wrapped, and anticipation, but not of the holiday, but of a birth that comes ten days before.

A week from tomorrow. If all goes as planned.

Easier, but . . .

Despite my meltdown of the last couple of days and the angst about scheduling my c-section, this pregnancy has been much easier than my last.

I can actually look ahead and think about having a baby.

Last time I couldn't order diapers or get clothes out of the attic or imagine bringing a baby home, certainly not right away. All I could do was fill up my freezer, easy meals would be good no matter what. When I packed my bag for the hospital, I wanted to bring a bunch of extra clothes in case we didn't come home right away. Brian had to convince me to just put a pile out on my chair for somebody to pick up if they needed to. When I went to the hospital, I made sure I had Carol's number. Just in case.

This time I have diapers back from the friend we borrow from, and the newborn clothes are in the closet. I'm trying to figure out where to fit the swing amid Kathleen's things. I've found coverage for my one on-going freelance gig. This time I'm not thinking about bring stacks of clothes for my self, but of packing my Henry book and the yellow blanket to get through the 17th. I'm thinking about having Kathleen come to the hospital to see her new brother or sister. "Bay-beee," she'll say. "Eyes! Noooose!" It is one of those bittersweet moments, and I fully expect it to happen.

I am better able to believe that this baby will be born alive and healthy, that we will stay in the hospital only the normal number of days post–c-section. So the anxiety sneaks up on me sometimes. Of course it is still there, but so is hope, a calmer, brighter hope than last time, a less desperate hope.

I actually had that OB visit today. Everything looks good, sounds good. Baby is moving, moving, moving. "Everything is okay." It's what you want to say when come through the door after an OB appointment, whether you're crying or not.

Today, everything was okay. The baby seems fine. I baked cookies. Kathleen pointed to the stool next to her and told me "Seat," so I sat with her while she colored. The sun shone. Today I held it together and it wasn't so hard.

99%

If I weren't pregnant, I'd be relaxing with a glass of wine right now and then going to bed early. But I am, and dinner is running late, so no wine and probably not an early bedtime. 

I had my first ultrasound today. Everything looks good, but I'm exhausted. 

I was anxious when we went in. Kathleen cried because I couldn't hold her, so they sent Brian out of the room with her before we even started. As he was walking out of the room, I burst into tears. He was able to come back in when she settled down, and I pulled it together. Still, I was wiped out when we were done. 

At the end of my ultrasound when I was pregnant with Kathleen, the doctor told me that I had a 1% chance of having a baby with Down syndrome because I had had one. Then he patted me on the leg condescendingly and says, "That means 99% chance everything will be fine." Thanks for the math lesson jackass. I think it was the same doctor today. He said the same thing minus the leg pat. 

I did breathe a little easier after we saw a heart with four chambers, normal flow between them. I was relieved to see no cleft palate, no spina bifida. The baby is measuring right, brain, kidneys, diaphragm all looked fine. . . 

I take this as good news, knowing the limitations of this technology. But 99% doesn't mean a whole lot to me. I've been the 1%, the less than 1%. Odds are meaningless. 

I am relieved that things look good right now. 

I am hopeful that this baby will be born healthy, happy, alive, and whole come December.

And I wait, day by day, week by week, until we get there and see for sure. 

16 weeks, 3 days

I keep putting off this post.  I'm pregnant—16 weeks, 3 days. And so far, things are good. So far everything seems normal. So far I'm not an emotional wreck. So far.

I do better when I stay in the present.

In just over two weeks, I'll have my level 2 ultrasound. It makes me anxious, as all my appointments due. So I will sit in the waiting room, trying to breathe, in and out, in and out. If I think ahead to that day, I start to tense up. So I stay here in today, where I've just started showing.

My due date is December 22 (the day we buried Henry) and I'll likely have a planned c-section in the week before that (not, I keep reminding them, on December 17). When my mind leaps ahead to December, it also jumps back to last December when I dragged my way through the month, barely able to get through it and back to the December before that when Kathleen was born and my anxiety grew until I could barely breathe. So I stay here in today, where I every now and then feel the first faint movements.

It is better than last time. Last time I was still crushed by the newness of grief. I could only imagine the outcome I had known or the various other scenarios by which you don't bring your baby home. I could plan for a funeral but not buy diapers; I could stock my freezer with food, but not wash the baby clothes. I hadn't started blogging yet, but I was desperate to talk to other people who had had a baby after losing a baby.

This time, I'm already plotting, where we'll put the bassinet now and the swing now that Kathleen's things have taken over the house. I've talked to a friend about covering one of my ongoing freelance jobs for a time after the baby comes. I hesitated to do it, but stepped away from superstition and made the request. Still, I have shared the news slowly and piecemeal.

I don't assume everything will be okay. I don't take for granted that I will bring home a healthy baby sometime before Christmas. But this time, unlike last time, I see that as a possibility, a very real one, and it makes a huge difference.

It brings me back

It seemed like the memories of being at Children's had faded some. I could remember but not be immersed. I could see what had happened without being thrust back onto the floor. This seemed like a good development.

Then last week, somebody asked me if I had any advice about support for her friend whose son is being treated at Children's. As I tried to think of what had helped, I found myself back there walking those halls, lost and floundering, exhausted and anxious. My chest was squeezed tight and I could barely breathe.

Yesterday, my friend Tricia posted that she had spent several hours in the ER at Children's with her daughter, Riley. She lived at Children's for months and months with her baby too. I read her comment on Facebook and hoped Riley was okay, but at the same time, my heart jumped up and choked me. I remembered bringing Henry to the pediatrician and ending up in the ER. I remember bringing him into the ER after finally being released from the hospital. And I remember how stressful it was to simply approach the hospital again, without a sick baby. I thought of her arriving at the hospital and all of what I had been through there flooded back, and I imagined her struggling through her own morass of memories weighed down by the fear of the current situation. I send her hugs and hope.
***

I am still haunted by the three months I spent there with Henry. I don't look back and think that was nothing compared to losing him. It was a different kind of unbearable, that I had no choice but to bear.

When Henry was getting close to discharge, I got more and more agitated. As much as I wanted, no needed, to get out of the hospital and get him home, I was terrified. How could I keep him well? Could we see family at Christmas or did we have to isolate ourselves that much? Would I miss signs of withdrawal?  Would he ever come off oxygen? What, really, could we expect for him? What if he got sick again? Would I miss symptoms of his condition worsening? What if he had a low-grade fever (DANGER, DANGER) in my mind that doctors who didn't know him brushed off? I had been away for so long, could I bear to barricade myself in the house with him all winter?

And the answer were: I couldn't keep him well. Even before we left the hospital, he had a little bug brewing in him. We did see family at Christmas—by that time he was gone. We weren't home long enough to have problems with withdrawal or try to wean him back on oxygen or figure out what he could do. He did of course get sick again, and I was paralyzed, to scared to bring him to the hospital, and he got worse rapidly. And he had a fever, and still, I was unable to bring him to the ER. I ended up in for most of the winter without him, lost in the blur of missing him.

I'm sitting here now, taking deep breaths, shaking off the grip of hospital fear that grabbed tight onto me, but every now and then I find myself smiling a little half smile as tangled up in that anxiety find the little glimmers of hope and kindness that sustained me through those three months that feel like a lifetime.

It does often now feel like a different lifetime, and yet, it seems I am not as far removed from it as I'd like to think I am.

Patterns

The other night, I sat down and read through my blog posts. I do this occasionally, the same way I read through old journals. I do it to see where I was, who I was, and how far I've come, and to find the patterns that emerge over months and years.

Earlier this month:
Sometimes talking about him seems so hard.
"And you have a son, Henry."
"Yes, we do."
It's that simple.

It's a theme I found repeated. Back in March, I wrote about talking about Henry at two baby groups:
I don't purposefully hide Henry. I don't avoid talking about him, because I do like to talk about him. But perhaps sometimes I think too much about talking about him.

[The group leader] also said that whenever I say his name she pictures his beautiful little face. Somebody thought of my baby yesterday—and all I had to say was his name.


I described getting together with somebody I had met when I took Henry to babygroup, how hard I expected it to be. How natural it was.

In July, there was the surprise of people willing to talk beyond platitudes and glossing over:
It is nice when people aren't afraid to talk about my baby and my loss and the wonder of his life and my sadness. I'm always surprised when I find them. 


And in August, there was my Facebook fiasco cleared up.

It's clear: I get anxious about talking about Henry, even though I've seen again and again that it can be a good experience. So why is it still so hard?

Maybe it's this:
It still hurts, still feels like a little piece of me dies when I say, "He died."

Or the memory of what it felt like when somebody just walked away stands out more strongly than any other.

Or I don't know what to say when somebody says, "I'm sorry" and there is a space that I feel like I need to fill.

Or  sometimes I feel like Henry is still buried under all the tubes and wires and procedures and anxiety and fear and to get to talking about him I need to tell about all that.  And sometimes that's exhausting.

Sometimes people have opened the door. They have asked a question about him or have given space to talk about him. Other times I need to open the door, especially with new people I meet. Each time I have to choose to open it and wonder what I will find behind it. And that's the scary part, the unknown outside the door each time. So that's what I'm working on: talking about Henry, saying I have two children, I have a baby who died—and figuring out what I want to say next, if I have the chance. I've been working on it for a while. You've seen me working on it for nine months now, and doubtless you will see me working on it for many more. Forgive me if I repeat myself, if I learn this lesson over and over and over again. Maybe someday it will stick.

Have you found patterns, things you keep coming back to, as you write about your baby or loss?

Sick Visit

We took Kathleen in for a sick visit today. She has Coxackie virus. We were told to give her Tylenol and expect her to have a fever for a couple more days and then a rash. No big deal. They've been seeing a lot of it.

***
Kathleen has been fussy and clingy for the past few days. I thought maybe it was just the cold she's had lingering. Then yesterday, she was hot. I took her temperature under her arm and it was a little high, so I got a rectal and it was normal. Odd, but I checked it twice. No fever. But I knew she wasn't herself.

She woke up all smiles this morning, but wouldn't eat most of her breakfast or most of her lunch. Brian took her for a walk in the afternoon and noticed she was quite warm again. This time, the underarm thermometer clearly picked up a fever, and the rectal agreed—102.6.

So I called the pediatrician's office, while Brian got our screeching baby dressed. Despite the dread in my stomach, I half expected them to tell me to give her some Tylenol and call back if the fever didn't go down, but the nurse said they better see her. So I gave Kathleen some Tylenol and a bottle and sat and rocked with her hot head on my chest for the hour and a half before we could go.

Maybe I should bring a change of clothes with me.
This is the irrational part of my brain talking. The part of my brain that reminds me that the last time I brought my baby in for a sick visit in September, he just seemed to have a cold. And then I was in an ambulance and then my baby was on a ventilator and then . . .

Wait!
My rational brain says.
He was really sick. He had just had surgery, had a bad heart, lung problems. It wasn't really the cold.
This part of my brain has let me go through my day for the last week as Kathleen sniffled and coughed and otherwise seemed just fine. But with this sick visit, the irrational tried to take over.

I had been struggling with September already, knowing that the day that was the beginning of the long-drawn out end was approaching, that day when the pediatrician put oxygen on Henry and called an ambulance, thus beginning a three-month hospitalization. That memory has been bubbling around under the surface, and it boiled over today when we carried Kathleen in to see the doctor.

***
In another world, I would simply be wishing Kathleen would feel better and lamenting that I had to cancel a visit from friend Alexa. No tapas and sangria for me tomorrow.

But here I am in babylost world, where everything looks different. I do hope my baby girl feels better. I am probably more patient as I sit with her feverish body snuggled into me, poor thing, than I would be in that other world. But I am more scared too, because I know what the inside of an ambulance looks like, I know how the PICU sounds, and I know just how quickly things can change from okay to unbelievably not okay. I believe she will be fine, I do, but I can't banish the anxiety.

So tonight, I'll give her Tylenol and sleep with her close and take deep breaths and tell myself she will be okay. In the next few days, I'll try to stay calm as I wait for her fever to clear, her fussiness to pass, my smiley girl to come back. And over the next few months, I'll face those memories again, the ones from September to December 2007. They've started, with a vengeance, today.

Stocking Up

Brian and I made big batch of chili this week. Today I packed up six quarts of it for the freezer, and as I did, I remembered last summer. I was so scared and anxious and hopeful about the little one growing in my belly. As much as I wanted the baby (now Kathleen), I couldn't bring myself to do nothing baby related. I couldn't clean and set up the nursery. I got as far as looking at cloth diapers online but wanted to throw up at the thought of ordering them. I couldn't organize clothes or find the car seat. I couldn't buy anything baby related.

Instead, I stocked my freezer. This was baby-related as I wanted meals on hand to make things easier once the baby came, but we would have to eat no matter what so I could fill the freezer and pantry without feeling like I was preparing for the baby. I got meat from a local farm CSA and stockpiled meat from the supermarket when it was on sale. I marinated chicken. I made lasagnas and stuffed peppers. I froze quart after quart of tomatoes. I blanched and froze green beans. I picked strawberries, blueberries, raspberries, and peaches. I froze berries and made jam. I filled bags with homemade multigrain waffles and banana oat muffins. It was what I could do.

***
To my babylost mama friends who are pregnant again (there seems to be a big batch of you right now), I am so happy and hopeful for you.

I wish you healthy, happy, living babies. I hope you have safe deliveries and easy recovery for mom and baby. And I hope, that somewhere in the midst of anxiety and sadness, you are able to find some joy in the pregnancy itself. It's something I wish I had been able to do, to embrace the possibility more rather than the fear. Peace, love, and strength to you all.

One Month

Kathleen is one month old today. I've spent the last year counting days without someone. It is nice to mark a month of counting days with someone.

One month and a few hours ago, I heard her cry for the first time, a strong, lusty, insistent wail, and I began weeping. She was here. She was okay.

With those first cries, the first assurances that she was okay, I let go of the anxiety that had been building throughout my pregnancy. Building, building, building. I was so on edge. I was afraid she would have a heart defect like Henry, afraid she would have another major health issue that we had not looked for or looked for but not seen. I was afraid she would need oxygen, be sent to the NICU, come home with equipment, or not come home at all. I was afraid of all the things that I knew could go wrong because they had for us—ambulance rides, codes, surgery, infection—and all the things I now knew could go wrong because I had met other babylost mamas and heard their stories, absorbed their losses.

As we got closer to her birth, I inexplicably gained a some confidence that she would be born alive and healthy, but I became terrified of her getting sick soon after birth. Why was I having a baby in cold and flu season? How would we negotiate the holidays and all the people who were sure to want to see her?

We've been careful. I do make people wash hands before touching her. I have limited visitors some, especially kids. But hearing her cry eased my anxiety. Yes, I'd love to keep her from getting a cold or the ugly stomach bug that's been going around, but I am no longer paralyzed by the thought. I realized that the anxiety had dissipated while we were still in the hospital.

I didn't realize until later that I had let go of an even deeper seated fear—or perhaps that it had let go of me. Since May 2007, when we learned that Henry's small to moderate VSD was in fact a larger, more serious AV canal defect that would require surgery, I have lived with fear. Fear about his health, fear of his surgery, fear when he was rehospitalized for his health, that we would never go home, only briefly that he would die. That fear should have died when he did, but somehow it was buried under my grief and never really left me. And then I got pregnant again and the fear bubbled up again. With Kathleen's birth, it seems to have left. I didn't realize the depth of that fear, the strength of it, until it was gone. It is a relief.

So one month—one month with Kathleen, one month without fear.