Away from A

We went to the beach this past weekend. Going out of towm whilst your baby is in the NICU begs this unnecessary comment from people: "You deserve it after all you've been through." I suppose people don't know what else to say, or maybe they think I feel guilty leaving him for a day and want to help erase that. But, I wonder, who doesn't deserve a trip to the beach, no matter what they have been through? It's an uncomplicated pleasure enjoyed by prince and peasant alike for as long as there has been leisure time. My response: "You deserve it too."

Still, being away from Alex causes a cramp in my heart.  Even when we are home, we are separated from him for most of the day. Mike and I talked about this problem and found that we had the same strange coping mechanism. The many hours apart makes Alex seem more like an idea than a baby. It's like before we got pregnant, when we would talk about our imaginary baby Nick Nak. Then that idea turned into my belly. Then that belly turned into Nick and Alex. Now there is just the idea of a baby named Alex who is only sometimes real.

However, the elusive (and addictive) mother-child bond became indelible on Friday. When we stopped at the hospital on our way to the shore, Alex's nurse made an offer I could not refuse: a first attempt at breast feeding. Non-nutrative sucking is what they call these preliminary attempts. A chance for Alex to get used to the process-- or, as we experienced it, to get the taste in his mouth that will turn him into an inconsolable two and a half pound vampire.

Again, nature and its perfectly designed mechanisms surprised me. Inches before the first nipple-mouth connection, he was agape and anticipatory. Only one thing prevented my miniature boy from engaging in an all-out feeding frenzy: his gavage (or feeding) tube which blocked entry to his mouth. I'm proud of the boy for nonetheless trying to extract something tangible. A mother at last, I could happily depart to the beach knowing that when I returned, Alex would know exactly who I am.

Impossible Words

June 27, 2009

There are a few words that I never thought I would have to associate with my pregnancy. One of those is “funeral”. Mike is on his way to begin the arrangements for Nick’s cremation. Our plans are not settled just yet. But, the basic idea is that we will have some small gathering at a park with friends and family and spread a few ashes under a tree. I was thinking of planting something there, some flowers or a small shrub- even though the park rangers might not like it.

It’s one of the more surreal aspects of losing a baby. You have to do something with the body. You immediately have to start thinking about how to memorialize someone you never got to know and that requires a conversation with the other parent that has to be logical and clear. “What do you want to do?” Well, I’d like to turn back time and, like some choose your own adventure story, change fate. But, with that being impossible, I would like to forget about it entirely. Again, impossible. So, I guess we’ll have a memorial.

Another word that I was hoping I would never have to consider post-partum, though with Nick’s lung issues, there was always the chance, is “single”. Though it’s expected that Mike and I should feel cheated after our loss, it’s really Alex who has been robbed. He seems to me only one half of a person, with the other half mysteriously missing.  I never wanted more than one kid, but now feel totally responsible for giving Alex the sibling he was undoubtedly supposed to have. 18 months. That’s how long I’m supposed to give my body before trying to do this again. And do I really want to go through any of this again? In 18 months, I’ll be 37. All of the anxiety about bringing a healthy baby into the world is exponentially worse at 37. 

Hospital 9: Father's Day

June 19, 2009: 

Today is Friday. Mike has taken the day off from work to get some things done around the house and have a little time to himself. He’s been stretched thin going to work, attending to the pets and the house, and then rushing over here to grab a few hours of bittersweet time with me before going home to sleep alone. He never eats dinner and has lost about five pounds in the past week.

He’s going to try to make it to my ultrasound this morning, though they only ever give me 20 minutes notice. It would be a nice occasion for him to participate in my healthcare, as he has been mostly relegated to the position of Dad, which is pretty far down the list of important people to the hospital staff. We don’t get it. When it comes to maternity issues, the father is always treated like an accessory, told to go hang out until something deemed important happens, as though men are some how immune to the stress of watching their baby mommas writhe in pain they helped bring about, or that every moment of this process is unimportant except the last one (when the baby comes out). Delivery and all the medical care involved in getting to that point are completely mother-centric, shredding the togetherness that many couples work hard to maintain during a pregnancy.

Sunday is Father’s Day. It’s hard for us to celebrate, given the precariousness of our situation. I’ll be 26 weeks, 5 days. Babies born at this gestational age have roughly an 80% chance of survival, though there are no stats to describe Mr. A’s likelihood of making it, what with his C-CAM being so large. The medication they have me on, Indicin, is like a very strong ibuprofen. The good news is that it works in keeping me out of labor. The bad news is that it presents risks to the fetuses and is given in 48 hour spurts, separated by as many days as possible. So, when they take me off it today, I could end up in labor again within a day or two without a safe way to stop it. 

Hospital 8: No Rest

Wednesday, June 15th:

Hospitals are lonely places, no matter how many people come by to see you. They can leave, you can’t. You’re scared, maybe in pain. Put two such people in a room and they end up talking about their common woes, like new inmates at a prison.

I have a new roommate, though she’ll probably be discharged this evening. She has a hernia that they’ve decided not to operate on. She’s spent the past three hours telling me all about herself, particularly about her relationship with her most recent baby daddy, who she has been dating for almost exactly as months as she has been pregnant. She has three kids by other guys and doesn’t work. I’m always curious how that plays out, having kids with no job. Now, I know all about her relationship, her kids, her life and I don’t even know her name.

She told me everything about her through a curtain, like a confession... or an urban bedtime story. She talked until I fell asleep, only to be awoken every half an hour to have monitors put on or taken off, vital signs checked, medication administered, doctors inquiring if I felt dizzy or weak (who isn't when roused from a deep sleep?), French toast and coffee slipped in front of me. No rest for the infirmed, I tell you.

Hospital 7: Choice

You soon find in a hospital that there is no privacy, not with your body, and definitely not with your situation. It’s you, a doctor, and a curtain. Your roommate hears everything. I have a roommate now. She’s 24 weeks along and facing a far more dangerous situation than I. Her water broke, which means that her timeline is probably short. I can go on and off medication that mitigates my labor and keeps me stable. But, with no amniotic fluid, there’s only so much time she can keep a baby in safely. It can be a heartbreaker, this baby business. 

This poor woman is facing a difficult choice: try to save the baby at all costs, though the chances of survival are only about 70% and serious disability is likely. Or-- let nature take its course (i.e. let the baby demise in utero and try again later). This got me thinking about the abortion debate. The staff here, with all their experience and knowledge of the power of modern medicine, has been trying to steer her toward a C-section the moment the baby seems in distress -- to save the baby at all costs. My roommate and her husband, realizing the risks to the long-term quality of life for a baby born so very premature- should the baby even live- are not entirely convinced. They want a more sure thing.

This is what I find so fascinating. Right now, she is offered a choice to intervene (the equivalent of keeping her baby) or to not intervene (probably akin to an abortion at this point). A 24-week termination is, as far as I understand it, considered a partial birth abortion and is illegal in this country. But, if there is a chance that “nature” might do the job (because the parents refuse to interfere), this is their “choice” and seems to tip the scales of morality ever so slightly in favor of OK.

I’ve been trying to encourage her with both my experience, that they told me the day I got here I would probably have the babies within hours and have instead been here a week in fairly stable condition, and anecdotes related to me by nurses of miracle preemies who went on to do just fine.  The doctors, they need to show you the ugly for legal reasons. But, all hope is not lost.

The Here and Now

In between posting my hospital journal, I feel like I should probably write a little about what is currently going on. Tomorrow, Alex will be three weeks old, or minus thirteen weeks, if you calculate from his original due date. He's doing pretty well, so we've been lead to believe. As one doctor puts it- no news is good news (and- you panic when we panic). No one at the NICU is ever in a panic, to the point where they totally ignore all the alarms going off, even when they seem to indicate a problem, like when I went in yesterday and saw that Alex could barely breath because he had spat up his lunch into his nose. I must admit- I panicked. This is a persistent problem that I've tried to point out to several nurses an doctors. They almost always patronize me with "I checked him a couple of hours ago and he was fine". Hmm... I was also fine a couple of hours ago. Now, I'm freaking out.

I find myself thinking in terms of one baby now. He was born.. he will be... I had a son... I had two sons, actually. They were identical twins. This leads to some uncomfortable conversations. For instance, I went to my first Phillies game since the twins were born last night. In the handful of games we attended previously,  we had become somewhat friendly with the couple in the seats in front of us (we all have partial season tickets and sit in the same seats every game). Last night, they asked how I was feeling, which lead into the unavoidable, "We had them three weeks ago" and then, "Oh? how are they doing?" which must be followed by, "One didn't make it. But, the other one is doing really well." And then, "Oh, I'm so sorry" punctuated by a sad silence. Mike and I have had this conversation several times now with people who don't know about the blogs and don't know what has happened. We've come to deliver the news with what must seem like a disarming flatness. How else can we answer the question? It happened. It's the past. Now, there's just one baby. But, he's doing fine... I think.

Hospital 6: The Move

Tuesday, June 16:

I thought stabilization would be a good thing. One by one, the tubes and monitors came off as my condition improved. I could finally sit up straight, move around in bed a bit, without the help of two people. After four days of near complete immobility - freedom at last. The idea of being here for a while, as the doctors have implied, was not seeming so bad. Then, I got moved from Labor and Delivery into the busted, run down Ante Partum ward of Pennsylvania Hospital. 

It sucks here. Unlike the ward that I came from, I have a roommate (along with her entire family), Mike can’t stay overnight with me, and I have to pay daily for the crappy TV (vacuum tube, with a VHS player- I kid you not) and crappy local-only phone. Apparently, the people next to me are equally disappointed and have no problem voicing their discontent to the nursing staff. Brave new world indeed. Hospital bed rest looks like it could be the suckiest thing that has ever happened to me.

The nurses of L and D, the ward I was hastily dismissed from this evening, were amazing. They were patient, sweet, seemed to know their stuff. I get the impression that the nurses here in APU are, well, less successful at their craft. With a 5 to 1 nurse-patient ratio on a slow day, I don’t expect to get much respect around here. I wonder if they’ll remember to feed me. 

Oh, and as I approach day 5, they still haven’t worked out the “bugs” with the “free” wireless internet, deepening my separation from the world. Tomorrow, I demand the window bed. I deserve that much.

Hospital 5: First World Problems

Tuesday, June 16th:

Today is my second day of solid food. Hospital food gets a bad rap, and that’s because it’s generally pretty bad. Well, if you are starving, as I was by 8 this morning, there are far worse things in the world. But, I think it’s funny. They give you a menu to fill out and then they just bring you whatever they feel like. Let me humor myself...

My order for this morning: banana, scrambled eggs, English muffin, yogurt.

What I got: French toast and sausage (same as yesterday), cream of wheat, orange juice, milk, coffee. (Why would they serve any patient coffee? Aren't we all on a half dozen medications? Aren't we all sleep deprived?)

Hospital 4: Homebound

Monday, June 15th

“Homebound” is the term used here to refer to long term patients, not people on their way home. That’s me now- Homebound. Now on my fifth day in the hospital, I still can’t get onto the wireless network. So, I still can’t communicate with the outside word except by text message. No news, no e-mail, no entertaining myself with weird Google searches. To top it off, today is Monday, the day everyone returns to work. I don’t’ expect any visitors until Mike gets here around 6pm. This would all be fine if I could chat with people while they sit in their computers at their jobs. But, I can’t.

Last night was tough. I hadn’t slept since 6 am and, even after they cleared out the other woman and her family around 11 pm, making this (at least for now) a one-bed room, they kept coming in to strap monitors on me or take my temperature every half-hour or so. At some point, my body gave up and I slept through whatever it was they were doing to me—including a cervical exam.

I am still contracting about every 5-10 minutes and am 2 centimeters dilated, as I have been since yesterday morning. At least my cervix has lengthened and I’m not in pain. Trying to keep it that way. Tomorrow marks week 26, still way too early to deliver, and there are no plans to stop labor again until I have been clear of the magnesium sulfate for at least a week. So, if I go back into labor in the next couple of days, the boys are coming out no matter what. It’s life or death, you could say, that I don’t go back into labor.

I get to use the toilet like a normal human being now (no bed pans or catheters jammed into my bladder). But, after four plus days on my back, it is unbelievable how much my muscles have atrophied. I have to support the weight of my belly with both hands, as my stomach muscles are no longer doing the job. It took me ten minutes to get out of bed, get to the bathroom eight feet away, pee, and get back in bed. When I see my doctor today (hopefully around 9), I am going to ask about exercises I can do in bed.

Hospital 3: Toxicity

Part three in the journal I kept while in the hospital:

Saturday, June 13

Magnesium sulfate is not good for the human body in large doses- and I was on a large dose to start. It slows all bodily functions down. It loosens all mussels, including the ones that control breathing and the heart. And it makes you very hot, dizzy, confused. So, for two days, I’ve had a nurse in here every half hour and a doctor every two hours to make sure I’m not getting toxic. Seems that I tolerate it well, which is good because I may need to go back on it at some point.

The Plan had been to take me off the magnesium today at noon and we see what happens. But, since I’m tolerating it so well and it seems to be keeping me pregnant for now, they’re going to keep me on it.

 

Hospital 2: Expect nothing

Second entry in the journal I kept while in the hospital:

..."What the hell is going on?" - Mike Kennedy

Friday, June 12

What is going on: the drugs seem to have worked. I am on antibiotics, magnesium sulfate, and another oral medication (Indicin) to stop the contractions, which have spread out from every 1-2 minutes to every 15 minutes or so. I’ve been told that I could be here for weeks with a baseline of contractions without labor progressing. Either way, I’ll be here, if all goes well, for 7 weeks or more. That’s the best-case scenario. We want to make it to 32 weeks at least. So, that means around two months of hospital bed rest. It’s a brave new world for the Kennedys.

The outlook for a 25 week-old fetus is not great. Add a C-Cam (lung abnormality) to the equation and things look bleak for Mr. A. Not hopeless. Just very difficult. But, at this point, I have come to accept that ‘difficult’ is just my lot in life. When pregnant, make no plans. Expect nothing specific. That’s the wisdom I have garnered.