Joey

There are specific activities that I imagined I would do every day with my baby when he finally came home from the hospital. We would take long strolls together on splendid autumn days. We would Kangaroo all the time. I would carry him in a sling every minute of the day to make up for all the time that we were separated. Most importantly, we would breast feed. It would be beautiful. But, like everything that has lead up to this point - twins, Nick's C-cam, a C-section at 26 weeks, twin loss - I shouldn't have expected anything at all.

Though we do go for strolls, they are not always peaceful and they have to be carefully timed in between meals, as Alex has a tendency to puke when sloshed about (who wouldn't?). I had no idea that Philly sidewalks were so terrible until I rolled my not-so-sleeping baby along them and then felt like a bad mom for putting him through such a rough ride.

Most of my day is in fact spent trying to get Alex to finish a bottle and then holding him still over my shoulder for an hour in an effort to keep that bottle down. It's tough to take care of my own needs, such as using the bathroom or eating, when I have a baby in one hand at all times. I've learned to do an amazing array of things with one hand. The sling thing is getting easier as Alex gets bigger and I can trust that his windpipe is not getting crushed. But, as with the stroller thing, puke prevents us from going out whenever I want.  It's clear that, for the next 18 years, nothing is going to happen when I want it to.

And breast feeding... as I've mentioned, it's really, really hard to get him to do it. So hard, I want to give up every time we try. It's more exhausting than washing all the bottles.

But, there's one thing that is exactly how I imagined it. Kangarooing. I had actually forgotten entirely about kangaroo care, the practice of holding your near naked baby skin-to-skin, until I read some helpful info today on how to improve the transition from the bottle to boob. A no-brainer, it was suggested that I kangaroo him more. We kangarooed a fair amount early on in the NICU, when he was tiny and fragile, and it was not an enjoyable time. But, as Alex got closer to discharge, it was so cold in the hospital and the staff was so paranoid about him keeping his body temperature that I stopped doing it just as it would have been most helpful. But, as I sit on the sofa with my usually irritable preemie fast asleep on my bare chest, I can't believe I let this get away from me for so long. Of course. Me and my Joey, relaxing together.

Independence Day

Finally. This morning, Alex got his first full meal directly from me. Getting to this point has often felt like teaching Helen Keller how to speak, with a lot of screaming, scraping, and kicking. I had just about given up on the hope that he could learn to breast feed. But, I kept trying, having developed a complex system that involved my pump, a bottle, a boppy pillow, and a beer. And today, I can claim that that McGuyvering worked. Not that I imagine our very next feeding to be as successful as this. But, I can at least start to envision a life without all that bottle washing. Goodness. It's a full time job pumping and washing.

Tonight, I get to get out of the house. The task of parenting has been unevenly doled out to me in the past few days and I've gotten the greenlight from the hubs to hit the town. Independence indeed.

Playing Around

I imagine that we're not alone in this figuring-out-what-the-baby-wants game. I understand now why people lived in villages with large extended families. Parenting is not natural. It's learned, usually from your own parent (that is, if you think they did a good job with you). Responding to the shriek of an infant is instinct. But, the subtler aspects of caring for an infant can be perplexing. Even with all the books, this feels like we're re-inventing the wheel.

Alex mutters a lot. It's difficult for me to make sense of why or what it is he's blubbering about. Since yesterday marked 40 weeks gestation (full term), I consider Alex to be a newborn. I had no idea newborns talked so much-- or were awake for so much of the day yemmering on in their bizarre baby language. Sure, sometimes he's trying to tell me that his diaper is wet or that he is hungry despite having just been fed. But, sometimes, he's just playing around, I guess. Enjoying the sound of his own voice. Preventing me from getting a restful nap. Reminding the tribe that he exists and not to forget him when they move to another cave.

Puke update: We stopped adding formula to the breastmilk to see if he would hold it down better. Hard to say if that's what did the trick because we also just started Zantac. But, Alex pretty instantly ate a lot more per feed and seems generally less fussy. Given that the first two ingredients of the formula are cow's milk and corn syrup, this is not surprising. Keep adjusting until we solve the puzzle that is our son.

Nice...?

Of course things are going to be different when you get home. Our house couldn't be more different than the NICU. It smells weird all the time. The pets are always barking, meowing, or shedding. The windows are open and the unfamiliar city breeze wafts past our sleeping, confused babe. I can see how moving in here could really mess up a boy's system.

But, I have to admit, I didn't figure Alex would be such a different baby once in our complete possession. Gone are the smooth, efficient 75ml feeds that kept him satisfied for four hours. Now a resident of 1550 E Berks Street, he rarely takes more than 40ml for me and that only with great difficulty and much (much) puking. He wants to snack on these half-meals every three hours, every hour and a half at night. So, yes. Just as he has fallen asleep after a long burping/vomiting, he is awake, ready for more. We started him on Zantac today in an effort to reduce his discomfort and hopefully help him keep more milk in his belly. Then, we have to work on his flipped schedule so we can all sleep at night at the same time.

People keep asking me, or I guess telling me, that it must be so nice to have him home after three months of traveling to the NICU every day to merely visit him. I haven't honestly had time to notice how nice it has been. I suppose on three hours of sleep, not much strikes me as nice. And having to share him with the apnea monitor defies the total freedom I had imagined. But, as the boy sleeps on my lap while I watch the Phillies play from the comfort of my own couch -Yes. It's very, very nice.

Parenthood day 5

Well, no one said it would be easy. Actually, they said it would be really hard. It's not that hard. It's just that you can't do what you want when you want and you often have to do things you really don't want to do at really inconvenient times.

Alex projectile vomited four times on Saturday, provoking us to take him to the much dreaded emergency room. We figured nothing much would come of it, but felt guilted into doing it anyway because Alex seemed pretty miserable. And we were right.  The wonderful doctors at Children's Hospital had little more to offer us that a possible diagnosis of pyloric stenosis, the narrowing of the stomach-small intesting sphincter, that was causing a blockage and offered us the option of waiting another five hours until the ultrasound team showed up at a reasonable hour of the morning. Having only gotten three hours of sleep the day before, we declined the invitation to bed at Hotel Sickness and headed home. A wise decision, no doubt.

Sunday was pleasant, with very little in the way of regurgitation. Sunday night, however, something weird happened. Alex was utterly inconsolable in his quest for more and more food. It was like he was in a competitive drinking contest. In the span of 2 hours, he clocked a quarter of his total daily intake. And he would have eaten more, had we not cut him off. As one of our friends aptly noted, "and thus begins the Kennedy lifelong affair with the bottle."

In an attempt to get the use of both of my hands back, I have started using a sling to hold Alex. My first try is with a Hotsling and, so far, the review is not so great. Alex is only 5 bs, but hardly fits in the sling. Worse, his head keeps slipping out the bottom, requiring constant adjustment, which defeats the purpose.

Yesterday, today

Gosh. So, as one might imagine, I haven't had much time to blog since we brought Alex home on Wednesday. Lots of laundry. Many diaper changes. It's a huge relief to have him here with us all the time, though being tethered to the apnea monitor is a big chore.

Above all else, Alex the baby is a cliche. We literally did not sleep a single minute his first night home. Between him crying (or screaming) and the apnea monitor going off relentlessly because of problems with the leads, I think we finally got to sleep around 6 AM. Not kidding. Last night, we took shifts. I fell asleep on the sofa with Alex next to me in his bouncy chair around 5:30. When he awoke at 8 ready for breakfast, I passed him off to Mike, who had called it a night somewhere around 4. Today, we tried to keep him awake as much as possible in the hopes that he might sleep better (or at least some) at night. That of course required us to be awake as much as possible.

I'm functioning surprisingly well for someone on three hours sleep, though this has given me an entirely new appreciation for what it really would have been like to have twins. My friend Kelly just had twins two weeks ago and she seems to be handling it all surprisingly well- in that she is still sane and she was not a puddle of tears when she called me today.

Today we took Alex out for a long walk to have dinner outside at a local restaurant. It was really nice. Finally a family untied. Of course AO, in a moment reminiscent of his finest NICU moments, puked all over himself. Discovering that this restaurant has no changing table, I learned how to re-dress a baby on my lap, a valuable skill apparently.

Tomorrow

I can't believe it. After weeks of thinking Alex will be home soon, he is finally set to be discharged tomorrow. I was in a mad hurry this morning, running errands and wrapping up loose ends, realizing that after all this talk about how my life has been turned upside down, it is finally about to undergo a beautiful, happy evolution that will keep me homebound for some time.

The past three months in the NICU have been terrifying and depressing, but also enlightening. I've learned more about neonatology than I ever thought possible. I've seen things that no parent should ever have to see. My marriage has been put to the test, as have my maternal instincts. Words are insufficient to describe what I have experienced since the twins were born, though this blog has helped me sort some of it out. As I sit and write this, I am crying. I hope you can imagine why.

The Formula for Success

Funny this morning that I should write about my breastfeeding woes and formula fears, because my visit to the hospital revealed a plot by the nurses to put my boy on formula in order to see if "breast milk isn't the problem". That problem would be a stall in Alex's weight gain that is keeping him from coming home. 

Their logic is to do whatever is necessary in order to get him home. I argued in return that a temporary fix is just cheating and will be problematic in the long run. Whatever they do to get him to gain weight should be something we can and will continue to do when he comes home. There's no sense taking the dramatic step of completely changing his diet for two or three days, just for us to revert it once he comes home and have him then stop gaining weight. With us living on one income, a specialty, high-cal formula is not something we can sustain at home. It will also do nothing to reduce the 100+ bottles of pumped milk crowding our freezer.

Thus began a back and forth about my diet. The question, "are you eating right?" came up over and over. I suspect this is because I'm back to my pre-pregnancy weight already. I've always had the metabolism of a hummingbird. But, I could see how it might seem to them like I'm on a crash diet. In doing some reading on how what I eat becomes what Alex eats, alterations in my diet can indeed have some small affect on his caloric intake. I pledge to eat more fish and nuts. And although it won't help him as much, I pledge to eat a lot of chocolate cake.

Other than that, we've agreed that a simple fix would be to dump what is called the fore milk and feed Alex the higher-fat hind milk. If the terms are not self-explanatory enough,  the further into a pump or feed you go, the more fat there is in the milk. Chocolate cake...

Boob envy

Several of my friends have recently given birth to healthy, hearty, full-term babies. Although there are numerous reasons for me to be jealous of their smooth transitions into motherhood, it is the ease with which they are able to immediately breastfeed their seven pound babies that makes me crazy. Their kids are born strong enough and with the coordination to do it. Those babies don't know any other way to get fed.

But, breasfeeding a preemie is difficult at best. I read this early on, but did not fully comprehend what that meant. I really thought that we'd be the exception, especially since early on, Alex seemed so amenable to the idea. But, he's been bottle fed for over a month now (I can't be there 24 hours a day) and getting him to work for lunch is proving to be pretty impossible. 

There are a number of reasons for this. Obviously, he's used to getting milk just poured into his mouth and the effort it takes to get my milk moving is so frustrating for him, he flails and screams until I give up and give him a bottle. Second, there have been a lot of interruptions to our transition from bottle to breast. If he is not gaining weight, or even losing weight, I stop. It's more important for him to grow, and breastfeeding burns more calories than it provides. If they are trying to transition him from the isolette to the open crib (where he is expected to maintain his own body temperature and continue to gain weight), I stop so that I am not contributing to him failing this test and being sent back into the isolette.

Mind you, he's still getting my milk (I pump and bring it to the hospital) and I'm dedicated to keeping him off of formula if I can help it.  But, I really want both the bond of breastfeeding and the convenience of being off the pump (there's a lot of cleaning involved with bottles).  As with every other aspect of my pregnancy and subsequent motherhood, however, I may have to accept that normal is just not in the cards for me.

I'm torn about seeing the hospital lactation consultants about this. They are, as so many women who have been consulted by them called them, the "breastfeeding nazis". They grab your tit, grab your baby's head, and mash them together violently. They tell you to relax while provoking your three pound peanut into a frenzy of frustration. They are at constant war with the nursing staff, whose job it is to get the baby big enough to leave, now matter how the baby is fed. I really want Alex to get enough to eat so he can join the ranks of babies his [adjusted] age. But, I want that to happen in a manner that he does not and I'm not convinced that the lactation consultants will be sympathetic to my situation.

A 2 K

Alex has hit an important watermark: 2,000 grams (4 lbs, 7 oz). We've been days away from bringing him home for over a week and a half now (I really don't know how long). This part of preemie parenthood, the part where progress stalls and there's no telling when your kid can come live with you despite their overall good health, is extremely frustrating. Basically, he has to be able to hold his own body temperature outside of the plastic box (the isollette). He's failed this test four times. So, the staff has decided to let him get to 2 kilos before trying again. This afternoon began the fifth attempt. I don't know what will happen if he fails again.

I had lunch today with M, another NICU mom. We were trading war stories, citing that New York Times article about the prevalence of PTSD among NICU parents, and generally commiserating about problems with staffers and protocols. We struck upon another aspect of our situation that has been overlooked in all the writing and research: temporal distortion. 

Both M and I spent over a week in the hospital before delivering our sons, who we have been visiting now for at least two months. All that time in a hospital, with our days marked by constant trepidation and a saturated state of limbo, has made the telling of time and the tracking of dates nearly impossible. When your days are both painfully similar and at the same time totally unpredictable, your brain stops recording that kind of data. It is in crisis mode, even on quiet days when everything seems to be going well. It's thinking about escape and survival and all the other primal feelings we modern humans are so good at ignoring.

You couldn't have known

I talked at length yesterday with one of the nurses in the NICU who had lost both of her premature twin daughters. They were born at 22 weeks gestation, both at a little more than a pound. As a nurse charged with caring for tiny preemies, she realized what her babies would be up against. They would most likely grow up blind. They'd have many months of struggle, only to possibly die. So, she decided to not admit them to the NICU, meaning that she and her husband held them as they died, just as Mike and I held Nick as he died. No tubes. No wires. Just a peaceful passing, inasmuch as death can ever be peaceful.

As we anticipate Alex's homecoming within the next week, I think about Nick all the time. It's impossible to avoid considering what it would have been like to bring the two of them home together. I think about how things might have been different had I carried them longer. Would more time in the womb really have saved Nick? It's normal to think this way, I think- but not healthy.

It hasn't helped that, in recent weeks, the subject of my pregnancy has come up several times with strangers or rarely seen acquaintances. Invariably, when I say that my son was born three months early (I always start out implying that I gave birth to just one) and is still in the NICU, the other person asks why I went into premature labor. It's a rude question because, obviously, the answer is going to be horrible. Doesn't matter what the circumstances. When people have medical emergencies such as premature labor, the answer to why is going to be shitty and you are going to end up crying in a supermarket or hotel lobby at a stranger's story.

But, you couldn't have known. It's a baby story. You are curious. She looks so healthy. Is there something to be learned, something useful to yourself in knowing why? Or is it just a formality? Maybe you think the storyteller wants to share her medical calamities and you are simply being polite by opening that door for her. Maybe you kind of see it coming- the train wreck- as the words leave your mouth, but you ask anyway because there is some catharsis for you in hearing horrible things. These are things that happen to other people. That is relieving. Maybe you are in denial. You ask what seems to you an innocent question, even though it is not, and you are truly shocked at the answer because you couldn't have known.

September third

Today was the day the twins were supposed to be born.